News Postings is our version of a BLOG and will address topics under multiple categories including: Reflections, News, Events, Christopherisms and others we may add in the future. These categories are intended to give you a glimpse into our life as we deal with the diagnosis of ALS. We invite you to click on comments and give your feedback which will appear on the site. The comments you make may spark further discussion and are greatly encouraged. If you don't want your comment public, just send us an email instead. Thank you for being here!
It was brought to my attention recently that I have not posted personally on this website in over a year...thanks Tiffany! Realizing that no news from the author is a bad sign, especially when he has ALS can be of grave concern…literally. My apologies to all the incredible people who have continued to visit this site and hopefully drew some sort of inspiration from our journey.
It has been well over eight years since I was diagnosed with ALS. After passing that milestone in March of this year, Jennifer and I could not help but wonder…maybe they got it wrong. Maybe the doctors that were practicing medicine were truly just practicing and didn't know what they were doing (no disrespect intended.) We found a new, unbiased (had not seen me before) neurologist in the Kaiser system to reevaluate me, actually looking for something called multifocal motor neuropathy (MMN) that might explain symptoms in very slow progressing patients. MMN is treatable to boot, so we started getting our hopes up.
Dr. Foley went through the traditional batteries we ALS patients go through including nerve conduction velocity (NCV) and electromyography (EMG) tests albeit more thoroughly than before, especially the NCV which checks for MMN. Sorry for all the acronyms, but if I had to spell these out all the time I would not be able to finish this article! His result, “The good news is you have no nerve blockage, the bad news is you have no nerve blockage.” In effect, I did not have MMN and ALS was the only explanation for my upper and lower motor neuron symptoms. Bummer.
From December 2007 to around May 2008 I had a new treatment performed called dry needling. It was suggested from a dear friend and physical therapist of ours, Pam. She had been having encouraging results with Multiple Sclerosis (MS) patients and wanted to try it on me. Think of acupuncture in a western medicine application. Very thin needles are inserted into the muscle as deep as possible. This is slightly uncomfortable, but not painful. A mild electrical current is applied to induce spasms. The theory is that our bodies only use about 20% of the motor neurons available to fire off a muscle. By stimulating or recruiting additional motor neurons we may be able to compensate for the loss of those neurons inherent to ALS. My hamstrings were one of my weakest muscles at about 3+ on a scale of 1-5, 5 being the best. When the recruitment of new motor neurons happens, I believe muscle strength is not only sustained but possibly improved. After dry needling my hamstrings were measuring between 4+ and 5-. I have a very slow progression and think I responded extremely well to this technique. It has been a while and I don’t know where my numbers reside at this point. I was hesitant to write about this therapy because of my slow progression as I felt it that may have skewed the results. I did not want to offer false hope. Lack of endurance is my biggest downfall. Please contact me if you have any questions about this approach.
Life moves on. Chris, as he likes to be called now is 11 years old and ruling elementary school as a big sixth grader. He is really enjoying this year so far even though he’s only a week into it and actually said math is hard but it was really fun. Music to my ears for this old math major! He became a boy scout in May and is really enjoying it. One of our friend’s son’s just became an Eagle Scout and it was very inspirational.
Jennifer is the one who has posted a few times in the last year referring to her life coaching practice, Living Your Potential. See her article from October 1, 2008. She has also started a greeting card business called SendOutCards that has become an exciting prospect. On a sadder note, her father Robert Kennedy passed away on May 2, 2009. He was the patriarch of the Kennedy clan and will be greatly missed. Even with all this going on, she continues to be the rock of this family and I am incredibly blessed to have her in my life.
Being a voice over artist is my new venture. In case you don't know what voice over is...anytime you hear a recorded voice, anywhere, it is a voice over artist. We can do commercials, audio books, documentaries, narration, corporate training, podcasts, phone trees, video games, etc. It is incredible where you hear the recorded voice! Now I realize this could be a really stupid, short lived escapade being an ALS patient where most of us lose our voice eventually…but what the heck! I just recorded my demo with five commercials and four narrations and had a blast. It should be ready in about six weeks. My instructor told me she could not believe I had not had any previous coaching. I do believe the public service announcements we did for the MDA and all the public speaking over the years has helped tremendously. I don’t know what will happen from here, but at this point it would be nice to recoup the cost of the class, equipment and studio time! Aren’t life’s unknowns’ exhilarating?
What are you doing to add spice to your life?
During these days of uncertainty in the stock market and our country’s economy, I try to find different ways to keep on track and stay genuinely happy. I wanted to share two tools I use on a regular basis.
In my life coaching practice I work with people in transition; both in their work and personal life. One of the tools I use is visualization. This is the process of forming mental images to help obtain your goals. Some people use mind pictures, others use visualization boards (recently on Oprah) to achieve great things in their lives! The instrument I use is called Mind Movies based on the Law of Attraction. It is what I call visualization on steroids! I personally love the idea and figure it sure can’t hurt spending three minutes in the morning starting off my day and ending my day with such a positive message! Please watch, Jennifer's Mind Movie and let me know what you think. Steven is working on his as well.
Another tool I use in both my personal and business life is called SendOutCards. I found this tool during a marketing class I was taking, saw the profound possibilities and signed up the next week! The entire philosophy of SendOutCards is to act on our promptings! What are promptings you ask? They are thoughts you have during the day when someone comes into your mind and you are wondering how that person is doing, happy birthday, wishing them to get better or whatever!!! This system makes it easy and affordable to act on those promptings! I call it sending out “card love.”
Another great piece of this system is for your business! I really believe sending a card is the true essence of relationship marketing. We all know with today's economy, now more than ever, we need to show our appreciation in the business realm to maintain and grow our customer/client base. SendOutCards has over 13,000 cards, gifts and gift cards to choose from with a vast business section.
With the holiday’s right around the corner, I would love to show you how easy and inexpensive this system is to use for both your personal and professional life! Please click HERE to send out two complimentary greeting cards using the SendOutCards system. Don't wait for a birthday or anything, just send a card to someone you are thinking of right now. You will see how easy it is to act on those promptings. Also feel free to watch the DVD presentation on the web site about how the company got started. If you have any questions please feel free to call (303-423-3779) or email me at Jennifer@livingyourpotential.com!
Have a fabulous day!!
Blessings, Jennifer
We have many challenging and exciting decisions to make this fall. As a nation, we will elect a new president, and whomever we choose will be a first in our nation’s history. As a community committed to the Extra Hands mission, we have begun to pursue strategic partnerships which will enable us to reach more PALS and their families as well as to serve others who are homebound and need support. Currently, we simply do not have the resources to offer the program beyond the ALS community by ourselves, much less keep pace with the ballooning demand for it within the ALS community across the country.
As you may know, the Angels for ALS Gala will not take place this fall as our efforts are focused on exploring all the possibilities and making the best decision for the next stage of our growth. Many of you were planning on contributing to the gala and we hope that you will still consider investing in Extra Hands so our potential partners fully witness the passion and commitment of our patrons. Please click here to contribute securely online.
Once we come to terms with the right partner, we will resume the planning for the gala which allows us to honor the pioneers like you who always ‘believed’ as well as to celebrate the beginning of a new chapter for Extra Hands.
Thank you for your continued support of Extra Hands for ALS!
I wanted to let you know about my new business practice — Personal Coaching. Coaching is an effective process to support individuals in creating something new for them. I coach my clients by providing perspective and support for self-awareness as they accomplish their business and personal goals.
My website, http://www.livingyourpotential.com/ will give you more information about my practice and a window into the magic inherent in the coaching relationship. I would like to offer you a gift of a free sample session by phone. Whether across the country or just down the street, coaching can work for you. To understand the value, experience it for yourself!
Coaching is a valuable process for:
-Designing life intentions that include both your business and personal goals.-Building your personal integrity and learning to base all decisions on your values.
-Making meaningful and personal changes that reduce stress and simplify your life.
-Freeing up energy and other resources to attract what YOU want for YOUR life now.
The emerging profession of coaching has been covered on the NBC Nightly News, Donahue and CBS, This Morning and has been featured in Newsweek and USA Today as well as in over 100 other major media outlets. Coaching has received this positive attention because of the success of the clients who use a coach.
Here is a sample of what the media says about coaching: “Coaching...a new profession is developing to provide support, training and tools to help people grow in their personal, work, social and spiritual lives.” — Common Boundary
“They call themselves ‘coaches’ — a new breed of career counselors multiplying nationwide, promising to help unblock barriers to success, and make you a happier, better person, to boot.” — Denver Post
“Progressive managers and consultants have long made coaching part of their jobs, helping employees improve their work habits and interpersonal skills. But in recent years, coaching has emerged as a distinct occupation and source of help in the workplace.” — Sunday Oregonian
I feel I have been a life coach for all of my adult life. I now have the tools to put those skills into action. Again, my website is www.livingyourpotential.com and gives you more information about my practice. Contact me at (303)423-4075 or jennifer@livingyourpotential.com if you’re curious. I appreciate referrals, so please keep me in mind when you are talking with friends and business associates.
Blessings,
Jennifer
This summer our family had the opportunity for some old fashioned Colorado mountain time. Some friends of ours belong to High Country Club, a destination club with access to over 30 luxury residences. Some days were going to be unused and they were so generous as to offer them to us. We chose to go to Copper Mountain, a ski resort about 75 miles west of Denver for some fresh air and fun.
Our condo overlooked the Village at Copper Mountain. We were surrounded by a variety of shops for outerwear, activities and eating. In winter, this is the center of action with the main chairlift just a stones throw away from the condo. The open area would be filled with bundled up seekers of downhill bliss.
Summer is a different atmosphere. Still the middle of activity, albeit more laid back, the Village had a peaceful aura about it. The chairlift operated over slopes still awakening from the hard winter. Even in late June, there were still drifts of white lingering from the frequent snow storms of last season. The ride up the mountain still had briskness to it from intermittent cloud cover and a cool breeze.
Every day we had a wonderful experience as a family and we really valued it. We were quite active the first day in the Village Square with Miniature Golf, Go Carts, Quad Power Jump, Bumper Boats, Climbing Wall and the Chairlift Ride. Pursuant to my posting on Insanity in June, I pushed myself to see what my physical limits were. I participated in all activities except the Climbing Wall as my body would definitely not support that and a nap was desperately needed anyway. That evening, we had a wonderful dinner with some friends from Vail at a restaurant called La Tour and ended up running into more friends on our way out.
Thursday we went golfing with family friends that volunteer at the Copper Creek Golf Club. They live in Florida during winter and Copper Mountain in the summer. Their volunteer work allows them free unlimited golf for the season. We were able to take advantage of that rate as their guests. Christopher caddied and drove the cart. That was scary at times on a mountain course, but overall he did quite well. He was also our official photographer and enjoyed taking pictures of the beautiful terrain.
Friday was filled with a fishing adventure at Lake Dillon. We had to walk in a little bit for lake access and I was grateful I had just purchased hiking boots that accommodate my leg braces. They were a life saver as the path was filled with rocks and tree roots, a virtual land mine for ALS patients. Christopher and I rigged up the fishing poles for bait fishing. After several practice casts, Christopher had it down pretty well and so man versus fish ensued. It wasn’t until Jennifer and Christopher went back to the car for snacks that the fish started biting. I caught the first one while they were gone, of course. Four rainbow trout were caught in all and Jennifer got some good reading in while patiently waiting for our lines to jump.
This mini vacation was probably the most activity I have had in the last two or three years as I wanted to see what I could do as opposed to what I think I should do. I had an incredible time with my family and friends, so it was easily worth the temporary fatigue and pain endured. Pushing limits for time spent this way is what adds to life’s abundance. Have you reflected on how you are spending your time recently?
Not all of us are historians. All those dates and names are a blur to me for the most part. However, on this day of American Independence as I hung up the American Flag, I chose to refresh my memory of the historic events that took place. I do remember there were some problems with taxes from Britain and there was a shipment of tea that got dumped into a harbor. These issues, among others eventually led to the Revolutionary War. We won, of course, which led to the birth of this great nation.
I am embarrassed to say, but that is the vague recall of my early education of this historic series of actions. I stumbled upon the web site Revolutionary War this morning and started reading. I have just grazed the surface, but felt compelled to encourage all of us living in America during these difficult times to revisit the origins of this land we call home.
I know our annual festivities to watch the fireworks will have even more significance after my review of why we celebrate. Understanding the meaning of our actions propels us to an entirely different level of perspective. This is what life is about; actually feeling what we experience.
So when we have musical artists singing a different song (click here for the reference article) to the tune of our national anthem, I have to ask; where is your patriotism today? There is always someone better off than us, but the most important thing to remember is that there is always someone worse off as well.
If your patriotism is not off the charts, especially today, then take a look around the world and gain some perspective of our freedoms. Happy 232nd Birthday, America. Thank you to all our forefathers who made this great Nation the land of the free.
God bless, America!
At the start of such a crazy time of year we hope that you are able to take some time to reflect on what you are thankful for. We are thankful for so much that it would probably take up your entire day just reading, so we will touch on some of the most poignant! Life is so precious we couldn’t miss this opportunity to send out our thanks to all of you!
First and foremost we are thankful for our family and friends! We would not be where we are today without all the support we receive. On the eve of yet another ALS friend’s funeral to attend, we count our blessings that Steven is still doing as well as he is! Christopher, the light of our life, is thriving in his new school environment. Jennifer is able to run Extra Hands and also go back to school to pursue her calling in life. We can only pray that we can give back a portion of what we receive.
We count our blessings that we live in a country that we can believe in whatever we want without persecution and speak publicly of those beliefs. We are free to worship what we believe in or not to worship anything. We can have the comfort working for corporate America or delve into entrepreneurship. Our freedoms should not be taken for granted.
May each and every one of you enjoy this incredible day and see the blessings, whether you are able to be with family and friends or just have a quiet day to yourself. So from our family to yours, Happy Thanksgiving!
One month has blazed by since the Angels for ALS Gala 2007. Time seems surreal to me, knowing I am outliving ALS expectations. It also confirms that time appears to accelerate the older we get!
The evening was a very elegant and classic event. It was an enchanting site to see everyone dressed to the nines at a beautiful venue with a common purpose in mind. The silent auction area was bedazzled with lights, music, conversation and excitement.
Inside the dining room, 250 seats beckoned for company as the tables dazzled in their simplicity. Black linens topped with red accents and white china glowed in the soft light of votive candles, highlighting the red cyclamen in the center.
Introductions and welcoming ensued before the theme of the evening was revealed. Addie, one of our overachieving student volunteers, was impacted by the statistic that every 90 minutes an ALS patient is diagnosed and another one dies. She produced a video simply asking what everyday people might do in 90 minutes. As a 90 minute hourglass was overturned, Addie challenged the audience, asking what they could do in the next 90 minutes to make a difference in the ALS community.
After a scrumptious dinner topped off by a decadent flourless chocolate tort, Addie returned to the podium. She addressed the audience by describing her transformation from the year before. The patient her Extra Hands team was assisting had died this past summer. The reality of ALS overwhelmed her. In her grief, she had grown and become even more dedicated and motivated to make a difference. By sharing her story, everyone in the audience understood what Extra Hands for ALS is all about.
Thereafter, local musician, Jeff King, mesmerized us with the song, “Angels Among Us,” to solidify our purpose in gathering. Between Addie and Jeff, tears of sadness and joy were commonplace, reflecting the evening’s momentous impact on all who attended.
The live auction changed the reflective mood into one of excitement and anticipation. Over $15,000 was raised as top notch destinations, LASIK surgery, beautiful fused glass artistry, music composition and a concert were auctioned off.
One of the highlights of the evening for us was to be able to recognize the many volunteers that make Extra Hands for ALS possible. First, the outstanding student, mentor and family were acknowledged for the profound impact they are having on other people’s lives. Then, all the students and mentors in attendance stood after their names were called. As the audience understood just how many volunteers there were, a standing ovation erupted. We are so incredibly proud of the people that choose to volunteer their time to make a difference in the ALS community.
The evening was topped off by dancing, mingling and picture taking.
Thank you so much to the gala committee that made the evening possible. We met for weeks on end before the gala to plan, prepare and execute. It's difficult to imagine doing this event without the help of such selfless and caring people.
The generous support of many in kind donations that reduced our overall costs is extremely appreciated. Especially, Signal Graphics, located at 1777 Larimer Street and Gourmet Fine Catering at 2601 Blake Street, Suite 105. There were many others, but these two went above and beyond anything we could have hoped for. Please patronize these businesses to help a show our gratitude.
Also, thank you to all the attendees and donors; from the table sponsors to the individuals and last but not least, our incredible volunteers. Your generosity raised over $81,000 in support of Extra Hands for ALS and ALS TDI, our research partner.
It is never too late to contribute, so please follow this Angels for ALS Gala link to securely donate by credit card if you have not already done so. Please make any checks payable to:
Extra Hands for ALS
c/o Steven & Jennifer Bishop
8237 Swadley Court
Arvada, CO 80005
We ordered too many Angels for ALS Gala 2007 champagne glasses and are selling them for $10 each. We have approximately 80 left and they are not raising any money in our basement! Lindsey, our outstanding student award recipient, designed and makes ALS Bracelets with the Extra Hands for ALS motto, BELIEVE in them. They come in S, M and L selling for $20 each. Please specify quantities with your check and provide contact information so we can get either/both or multiple items to you.
One last enormous thank you goes out to everyone who participated in the 2007 Angels for ALS Gala.
Just in time, we have partnered with Mister Neat’s Formalwear to outfit the black tie optional Angels for ALS Gala. They have generously offered a $40 discount on all Designer Tuxedo’s starting at $99.95 and up for this event. Simply mention our event name to receive the discount. Visit their website at www.misterneats.com or call 1-888-NICE-TUX (1-888-642-3889) for a location near you. Simply download the Mister Neat's Flyer here, print it out and bring it with you.
If you are coming in from out of town, Mister Neat's is affiliated with Savvi Formalwear & Friar Tux. You can go to any of their locations to be measured. Then simply call 303-980-5999, the Mister Neat's store closest to the Belmar Center and provide your information.
How often do you allow yourself to get completely dressed up and have the chance to document the occasion? Bring your cameras, but we will be taking pictures, too!
Mister Neat’s respectfully asks that you try to come in four days prior to the event for the best choices and time for fitting. That would be October 9th for us, so don’t delay.
If you haven't registered for the Gala yet, click here to RSVP or donate. Thank you.
Looking forward to seeing everyone!
Hi everyone,
We have been planning for months and the Angels for ALS Gala benefiting Extra Hands for ALS is less than two weeks away. We will be ready for an incredible event! The RSVP date was Friday, September 28th and due to our new electronic format, the online registration form closed the guest list completely. Oops!!! I didn't know that was going to happen.
If you were planning on attending and attempted to register online, please try again as I have changed the RSVP date to October 7th. That is the drop dead date for the caterer to know how many meals to prepare? You still have the opportunity, convenience and security of online registration.
I apologize for the confusion this may have caused and please forward this email to anyone you know that was considering the Angels for ALS Gala!
In regard to the previous posting about Noodles & Company, we are honored to announce that $418.51 was raised on August 21st to benefit Extra Hands for ALS. Thank you to the many satisfied diners and the generosity of the folks at Noodles & Company who donated 20% of their gross sales that evening. This is the restaurant located at 12023 East Arapahoe Road at Peoria in Centennial, Colorado.
Every once in a while we find a gem of a company in our locale that is community oriented. Please help us in showing our gratitude by patronizing this location. The food is great and you will feel good supporting a local business that cares.
For all you local readers out there, the great folks at Noodles & Company have been so kind as to offer 20% of their sales for the night of Tuesday, August 21st, 5-9pm to benefit Extra Hands for ALS. This is for their restaurant located at 12023 East Arapahoe Road at Peoria in Centennial, Colorado.
Please join us for a great meal from a generous and community oriented company!
The second annual Angels for ALS Gala is scheduled for October 13th, 2007 at 6:30 pm. Last year, over 250 people attended with almost $90,000 raised benefiting Extra Hands for ALS and our research partner, the ALS Therapy Development Institute (ALS/TDI). This year we are reaching for 400 people to enjoy this beautiful night out. We will be honoring the student, mentor and family volunteers that make Extra Hands possible.
We are fortunate to be at the same venue at the Belmar Center in Lakewood, Colorado. Our sit down dinner will be presented by our friends at Gourmet Fine Catering. The evening will include silent and live auctions, dinner, entertainment and dancing all in a black tie optional theme.
Table sponsorships from $1,500 to our $10,000 are available with multiple marketing and recognition opportunities as well as individual tickets for $125. Click here for more details and online registration. If you did not receive a formal invitation last year, please respond to this posting with your contact information as soon as possible so we can include you in the mailings. We would appreciate you forwarding this posting to anyone that you think might be interested in participating in this incredible event as it is our main fundraiser for the calendar year.
If you are unable attend there are still many ways to participate. We are always looking for silent auction items and volunteers for the evening to help with all the details an event like this requires. Also, if there are companies that could help offset the hard costs, i.e. venue and caterer, we would be honored to have you listed as event sponsors for marketing purposes. Please contact Steven or Jennifer Bishop at 303-423-3779 or email denver@extrahands.org for more information.
Of course, we always appreciate a donation of any kind which can be done online by clicking here or sending a check made out to Extra Hands for ALS at 8237 Swadley Court, Arvada, CO 80005. Lastly, thank you all for your continued support of ALS awareness, programs and research. It is your involvement in these issues that provides purpose and hope in our lives. We are humbly touched by your dedication and interest.
Last night, on the 4th of July, Jennifer and I snuggled up and watched the annual fireworks display that the City of Arvada hosts and the radio station KOOL 105 sets to music. Just prior, we had a great dinner with friends at our house with their two boys, so Christopher had a play date as well. The food was great and the company even better.
We arrived somewhat late to the Stenger/Lutz Sports complex where the fireworks take place. I was worried that we might have trouble getting a parking space, even with disabled plates. As it turned out, we ended up with very close parking and a perfect view of the celebration directly below the massive booms and lights above us.
Since this is a regular tradition with us, it’s kind of a marker of my progression. Jennifer and I were laying down with Christopher in a sleeping bag at our feet staring straight up when it hit me we were able to spend another 4th together. Most of our other holiday plans are somewhat variable in activity, but we have made this an annual event for quite sometime.
After being married for 17 years, Jennifer said she was thinking the same thing about how blessed we were to still be able to watch the fireworks together. I think it’s almost impossible to dwell in negativity when you see the majesty of a grand display such as this.
We tend to take in all the details. The younger couples behind us that had been drinking, albeit a bit loud and obnoxious, were simply enjoying the show. Christopher and his buddies were ever vigilant with the constant question, “Was that the finale?” The wind was blowing pretty good which actually blew the smoke away from the lights for a crystal clear view of each explosion. The designs that the fireworks can make now are amazing, from hearts to interlocking rings and stars. This year added a new one that blew up into scores of bright lights and then propelled themselves like fireflies until the ember extinguished. That was our favorite of the evening.
I woke up early this morning and let our two dogs, CJ and Tumnus out, and made a cup of coffee. We planted some trees in the backyard this year and I went out to check on their progress. They had been in shock after being transplanted and were now showing signs of new life. For some reason the moon was still out as if watching me take things in.
This was a series of events that I haven’t pondered in a while and it is refreshing beyond belief when you take the time. So on this day, take that extra moment to breathe the fresh air, walk up close to a tree or plant that is showing new growth, smile at a newborn and choose to make a positive difference in someone’s life.
The first weekend in March brought Jennifer and me to a Christian couples retreat entitled, “Weekend to Remember.” We had heard about it through our church and others who had previously attended. Jennifer was the true catalyst in attending and booked it months prior with a general nod of approval as I quickly forgot about it.
As the date approached, I realized that our marriage could definitely use some revitalizing. Now understand that we have been married for almost 17 years and the last six have been together 24/7. With me not able to work or drive, I am mostly homebound. This statement is not for pity by any means as I have an incredible support system that is ready to take me anywhere if I need to go. It simply means that most married people get a break from one another during the work day, for better or worse.
We basically were coexisting and co-parenting without realizing it. This may seem difficult to fathom when we are faced with ALS everyday. However, as I pointed out in the posting dated February 28th, “I’m still here,” we had fallen into the doldrums of life only to be reminded a little more often than most that life is precious.
The timing of the retreat was perfect as I had just finished that article and was ready for a fresh start. Christopher stayed with our dear friends and his guardian’s for the weekend. We headed off to Colorado Springs at the Cheyenne Mountain Resort about an hour and a half south of our house. It is a beautiful resort set at the foot of Pikes Peak. We were joined by Jennifer’s brother, John and wife, Shelly. Although, this is a time to work on your own relationship, it was great having their company as well as perspective.
We would spend Friday evening, Saturday and Sunday in a conference setting with incredible speakers, breakout projects, homework and a date night. Our first night project was spent with some brutal honesty about our relationship and what wasn’t right. Why did we feel like we were coexisting when we were in love with each other? We figured the organizers wanted to break you down before they built you back up over Saturday and Sunday!
Each session was biblically based, but non-threatening to the general public. We found out that there were married, remarried and premarried couples in attendance. The married couples varied from two weeks to 46 years together. Some actually had divorce papers sitting at home based on the outcome of this weekend experience. They told us at the end of the weekend that they were going to throw them away.
The majority of the sessions had to do with how to achieve oneness with your spouse, the way God intended. Communication, expectations and responsibilities were main concepts of discussion. There were so many stories that hit home for most that the mood was kept light by these anecdotes. One of the sessions had the women separate from the men. That was hilarious and yet so educational.
One of my favorite parts was date night on Saturday. We were looking in the local directory for restaurants in the area. We found one with a decent menu and off we went. It turned out to be a bar with pool tables and loud music…not what we had in mind. Just around the corner was another restaurant that looked a little more docile. Walter’s Bistro was the name where we had the first date of our rekindled marriage.
The ambiance was perfect with an upscale feel, comfortable seats and serene lighting. Two martinis’s, one up and slightly dirty, the other on the rocks with a twist, our usual. We were going to have an appetizer but looked at the dessert list and found one of our favorites so we held out. The main course was fantastic but what made the night was the wine. The last wine on the last page of the wine list was one of Jennifer’s favorite, a 2001 Marques de Riscal. I ordered it without her noticing, so when the waiter brought it, her eyes lit up. It turned out to be the last bottle of the 2001 they had. We finished up with Crème Brule that we had saved room for…yeah, right.
It really did feel like a first date, but we had no camera to commemorate it. The couple next to us had one and we asked if they would take our picture and email it to us. True to their word, they had sent it to us on Monday after we had returned. Click here for the picture.
We came back from the weekend rejuvenated with life and the oneness of our marriage. Thank you to www.familylife.com for their dedication to improving marriages and building the bonds of oneness that allow these relationships to persevere. I invite you to peruse the website with an open mind and heart. On a similar note, our dear friend, Randy Ferguson hosts a series for both individuals and couples called Love, Courage and Achievement or LCA for short. His web site is www.lcaproject.com.
Jennifer and I have been reading quite a bit lately and hope to put up a list of books with short reviews at some point. We bought several books from the weekend. This is part of my new adventure and pursuit of purpose in my life. The books are diverse and contemplative. They invite introspection. So many times we don’t know what questions to ask ourselves to make us better spouses, parents and friends. How many of us want to know?
There were an incredible amount of supportive and encouraging emails that followed the last posting. Thank you all so much. One person in particular brought something to my attention. She was wondering if there were any other slower progressing patients out there. Let’s define slower progression, generally, as still mobile and independent approximately three years from diagnoses. This doesn’t mean you aren’t using any assistive devices, i.e. AFO’s (Ancle Foot Orthosis, aka Ankle Brace), canes, occasional wheelchair for long periods of walking or standing, etc. Simply put, if you feel your progression is considerably slower than you anticipated, you are who we are looking for.
The purpose of identifying this demographic is that slower progressing ALS patients begin to feel slightly out of place in support groups. The feeling is that we aren’t relating to the relatively normal progression of ALS very well. We don’t quite experience the “Always Loosing Something” perspective of the disease. This is not a reflection on either progression, simply an observation. Therefore, if we can identify some people in this slower progressing group, we could begin a forum that would be helpful in dealing with some of the feelings outlined in the previous post, "I'm Still Here."
Soooo, if you fit into this slow ALS demographic (physically, not mentally, ha ha) or know someone who does, will you please reply and let us know if this separate forum is of interest?
It has been a long time since posting to our site. This has been a particularly hard winter. Yes, we do live in Colorado, but the meteorologists here say it’s been the coldest in 30 years and we have had snow on the ground for two months. We’re used to getting a foot dumped on us and it being 57 degrees and sunny the next day when everything melts. At last, we had a major meltdown the last couple weeks and we can see most of the grass again. Yet today, it is cold and snowing again.
However, the weather hasn’t been the only tough thing. We have lost 5 of our patients in the last two months. Emotionally, it has been a strange time dealing with ALS and my unusual longevity. Jennifer and I thought and planned on me being dead by now. Thank the Lord, I am not. However, I feel a bit like I’m in Purgatory, right now. Don’t get me wrong, by any means; I feel completely blessed with this slow progression as it has allowed me to enjoy and experience so many things that I thought I was going to miss.
It’s how I imagine outliving your retirement might be. Now what? I don’t feel like I’m living up to my potential right now and the motivation factor is running low. Half of me is in this end of life mode of taking everything in and enjoying all the little things God has set before me; the other half is in the rut most people deal with of day to day life. It’s the second half of this that is troubling me. I have this constant reminder (ALS) of how precious life is and yet, because of my slow progression I get caught up in the monotony of life. I am so used to my own symptoms that my body often compensates to changes before I realize anything has happened. Then, all it takes is a visit to an ALS patient with a typical progression to bring me back to the reality of the disease. And they say ALS doesn’t affect the mind. Ha! Maybe it’s time to see a counselor.
I still know I am making a difference through Extra Hands and thoroughly enjoy meeting the patients, students and mentors. These are truly beautiful people and inspirational to me and others they come into contact with. It is so refreshing to see how selfless and compassionate people can be. They are really my role models and make me wish I had done a smidgeon of what they are doing during my previous life before ALS.
Overall, I am coping and staying positive as much as possible. It is just one of those transitional moments when one contemplates the next stage of life. It is time I take my own advice I have offered on this site:
If you don’t know what your passion is, then make finding it your passion.
I am in the process of reinventing myself and improving my relationships. How can I be a better husband, father and friend? What can I do to make my life more meaningful?
Spring will soon be upon us and with it brings new life. I plan to ride that wave and create a new adventure. However, I’m not going to wait until then, as it takes some planning and a strong will. Who will join me?
Aside from my last posting summarizing the gala, I realized that not much has been mentioned about Extra Hands for ALS in a while. We have developed an incredible organization over the past year that now services people across the metro Denver area as well as a satellite group in Steamboat Springs. We have 18 families, 17 mentors and 27 students registered for full or project only services. Our student volunteers, mentors and families with ALS are making a huge difference in each others lives as well as others that have had the pleasure of their company. Thank you all so much for what you all are doing for ALS.
I want to give an example of the kind of individuals we have had the honor of getting to know. In the last posting, I talked about three very extraordinary individuals from Cherry Creek High School (CCHS): Aly, Cynden and Addie. I’d like to get a little more specific about their involvement with and the affect they have had on Extra Hands and the Bishop family in general.
Jennifer and I had been recruiting student volunteers in various high schools around Denver and speaking with scores of students at a time. We had the opportunity to introduce Extra Hands to their Distributive Education Club of America (DECA) made up of students in marketing classes. It is an active club that develops business leadership and social activities. Competitive events are held at the local, state, and national levels in salesmanship, advertising, display, and job interviewing. They have over 200 members at CCHS alone and we were very excited to tap into this wonderful network of people.
When we arrived, there were three students and their teacher, Mr. Konrad. Honestly, we were slightly disappointed in the small turnout, but it goes to show you to be careful with expectations. We had five families in the immediate area that needed assistance so we were going to give this opportunity all we had. Ironically, we happened to be talking to three of the most intensely motivated students we have ever met. Cynden, Addie and Aly were at the end of their junior year and looking for their senior community service project for DECA to add to their existing plans with the Muscular Dystrophy Association (MDA).
Apparently, Jennifer and I struck a cord with them as they immediately told Mr. Konrad that he would be sponsoring their Extra Hands for ALS club! To try to make a long story shorter, these student’s involvement has become much more than a community service project and more of a symbiotic relationship with us and Extra Hands.
They have spent a significant portion of their senior year raising ALS awareness and funds as well as providing help and hope to those dealing with ALS. Sound familiar? Check out our life mission list on the home page of www.alsliving.com. They have demonstrated a tremendous team effort with resounding results.
Aside from their contributions with the Angels for ALS Gala, they developed an end of the year blitz, called Give It Up For ALS, where over $4,000 has been raised during the holiday season by members of their DECA club. Addie, Aly and Cynden didn’t tell us about this campaign, instead wanting to surprise us with the results. I was brought to tears as we were told about all the effort that went into it and all the people they brought ALS awareness to. There were scores of donations from people who likely knew nothing about this disease prior to their campaign.
One of the main reasons for posting this article is to encourage them as they start the process of the DECA competitions with an extensive essay and speech regarding Extra Hands for ALS and MDA. They continue working as a team with the very difficult task of putting the passion into words that has transformed this community service project into a life changing event for all of us, and hopefully, an award winning combination of prose and dialogue for DECA. All this is being done during their winter break.
Jennifer was much more involved in high school than I was, but even she admits that the thought of what these students are accomplishing was beyond her contemplation at the time. The dedication and thoughtfulness with which they have approached the Bishop family and Extra Hands for ALS is beyond words and we would like to simply say thank you for all that they have done and continue to do for ALS.
As for the deeper meaning of all this to the readers of this posting; remember that you never know how much you can impact the people with whom you come into contact. With that in mind, try to make sure those contacts are positive in nature even if it doesn’t seem to make a difference. Two of our favorite movies with powerful messages are Pay It Forward starring Haley Joel Osment, Kevin Spacey and Helen Hunt as well as Mr. Holland’s Opus starring Richard Dryfus. Rent them sometime when you think you can’t make a difference in this world. If you’ve seen one or both of them, you know what I mean.
Happy New Year to all!
The dust is finally settling on the Angels for ALS Gala. What an incredible ride it has been. The Belmar Center lease was signed on June 16, 2006, thus committing us to full-time planning for this event. Four months later on October 14, 2006 we experienced one of the most rewarding, emotional and successful events of our lives.
Jennifer and our incredible army of committee members and volunteers spent the afternoon decorating and organizing for the gala that evening. At home, I was still working on seating arrangements and fielding calls. I did manage to sneak in a nap to save some energy for the evening.
We arrived at about 5:30 p.m. in order to address any last-minute details. This was my first opportunity to view the venue in its entire splendor. From previous experience, I brought my walker which has a seat on it. It would be a very long night if I had to stand for the whole evening.
As we entered the elevator that took us up to the vestibule, a rush of excitement and nervousness overwhelmed me. The doors opened and our trusty volunteers were busy at work setting up the registration tables. Behind them the dining room remained closed. Jennifer and I made our way out to the terrace where the silent auction was set up.
It was just beautiful. Lights twinkled above our heads as we gazed over the tables draped in black and tastefully covered with 105 graciously donated items up for bid. The tables also had black and red painted “Angel” and “Believe” signs carved out of wood, emphasizing our theme for the evening. Each auction item was meticulously described and/or displayed. What an amazing first impression!
Guests began filtering in while I was able to absorb the joyful look on their faces as they experienced their first impression. Everyone looked incredible decked out in their suits, tuxedos, cocktail dresses and gowns. It was such a privilege to greet people as they came in and thank them for attending. Soon the area was buzzing with guests scribbling in their bids and having wonderful discussions. Delicious appetizers were hand served to the mingling crowd.
Jennifer and I strategically separated so we could visit with as many people as possible. I sat in my walker right in the middle of the auction area so I could catch people as they walked by. Jennifer fluttered around like a butterfly, gracefully greeting everyone she could. Time flew by and according to the schedule we needed to shut the auction down and move into the dining room. It seemed as though things were just getting started so we extended the time another 15 minutes. All too soon, we had to get the dinner program started, therefore ending the silent auction.
Enormous blinds were lifted exposing the elegantly decorated Main Ballroom. It seemed as though our guests did not want to leave the Terrace, however, dinner beckoned. The walls were decorated with large photographs of Extra Hands for ALS families and volunteers, tastefully outlined in black with red trim. The tables were adorned with stylish centerpieces, black linens and white place settings.
Appetizers and dinner were catered by Gourmet Fine Catering and received accolades for days after the gala. Apparently, people expect rubberized chicken and soggy vegetables at these types of events as opposed to our succulent meal. With the decadent caramel cheesecake and coffee being served, the evening’s program began.
Angie Austin and Chris Parente from KWGN/CW2 Morning News co-emceed the event with flare and wit offering light moments as well as emotional praise. Angie has been a dear friend to us for five years and brilliantly suggested Chris for her counterpart. Together they were a terrific team and we are truly grateful for their time and generosity.
Next, our CEO for Extra Hands, Jim Presbrey was introduced and provided the general greeting and introduction of our organization to the mix of 255 attendees. Jim is from New Jersey and made a point to arrive two days early to help us with the final plans. His eloquent and sincere presentation offered an air of integrity to the gala as well as setting the tone for the whole evening.
We then had the opportunity to address the audience. I had to take a moment and absorb the whole atmosphere with the venue and all the incredible people glimmering in the warm candlelight. Jennifer greeted everyone and thanked them for attending along with encouraging everyone to introduce themselves to someone they didn’t know. We believe in the power of positive influence and all these people had something to offer someone else. I closed with several definitions of the word “Angel” when used in the human sense and the description that stood out the most was the act of being selfless. We were definitely among angels on this night!
In a shroud of secrecy, three of our student volunteers from Cherry Creek High School and founders of their Extra Hands for ALS club had been planning a presentation and video for the gala. At last we were able to hear and see the fruits of their labor and love.
They had prepared a heartfelt speech in which Addie, Cynden and Aly all had roles. The words spoke from their heart and touched us deeply. A standing ovation followed and then their video presentation. They had interviewed several Extra Hands families, mentors and volunteers. The participants expressed their sincere gratitude for the program in a way that made it real for all guests attending. We have watched it three times since the gala and are continually moved.
This turned out to be one of the key elements in the program. It showed how much these students were emotionally involved in Extra Hands and the people they are affecting. It was also evident how they were affected in such a positive manner by the families and mentors involved. That is the magic of this organization.
The live auction ensued with the donated items of a Lasik eye procedure, a bronze angel sculpture, professional wall glazing, a week stay in High Country Club property and finally a private plane ride over the Rockies. The auction was a bit confusing, but fun and quite successful.
Extra Hands has partnered, in essence, with an ALS research laboratory called the ALS Therapy Development Foundation (ALSTDF), located in Boston, Massachusetts. Mat Mendel, Event Development Director, introduced a video from the Founder, Jaime Haywood of ALSTDF in which he described the efforts of their organization and the importance of research. Mat arrived a day early to help and his presence added even more integrity to this event. This was followed by an auction for research minutes in which over $12,000 was raised!
It was a long program, but with all the right features. We were able to recognize some very inspirational people with trophies for Outstanding Students (Addie, Cynden and Ally), Mentor (Lisa Terry) and Family (Chris Hoeffner) as well as special recognition for Courage (Ellen) and participation (Suzanne Bellis) in honor of her late husband John Bellis. She sponsored three tables of ten for the gala. We were also able to recognize our own student volunteers, Carly and Allie, who opted to forego their Senior Homecoming in order to attend this event. That meant more than they will ever know.
One by one the student volunteers present at the gala were invited to come forward for a plaque presentation. Nineteen students shared the stage. It was incredible to have them there and show the audience that these lives were a large part of why they were there supporting Extra Hands for ALS. Mentors were then recognized in the same manner for their dedication to the organization. Thank you, all.
With that, the formal program closed and the rest of the evening was opened for dancing to the music spun by DJ, Barry Sterling from Sterling Entertainment. Most of the students jumped right in with many others and then the night ended all too early.
We simply cannot thank everyone sufficiently for their participation with this event. We had an incredible team of gala committee members along with volunteers who gave up their Saturday night to work during the evening. Over a dozen companies donated services and there were about 100 individuals and/or companies that donated items for the silent and live auctions. The attending guests were both generous and gracious and hopefully had a joyous and memorable time.
Finally, we got to honor the people that make Extra Hands for ALS more than just a vision and turn it into a reality that is changing lives for the better and making a real difference in the fight against ALS. Pictures will be added to our site, shortly. Thank you all for this very special night.
P.S. Just in case anyone was curious, we grossed over $88,500 and netted almost $70,000 with funds still trickling in! That is a return rate of over 78.5%. Not bad for a first year event. Wait ‘til next year. We can’t wait to see you there!
We are so excited about how many items that we have received for the Angels for ALS Gala Silent Auction, that we thought we would give you a sneak peek!
Over 60 of the Silent Auction items are now online. Additional items will be on display at the Gala this Saturday at the Belmar Center.
To view these Silent Auction items, Click Here Additional information is online if case you have interest in one or more of these items!
Thank you so much to those that generously donated these wonderful items. Also a huge thanks to so many people that were involved in obtaining these items!
Just in time, we have partnered with Mister Neat’s Formalwear to outfit the black tie optional Angels for ALS Gala. They have generously offered a $20 discount on all Designer Tuxedo’s starting at $99.95 and up for this event. Simply mention our event name to receive the discount. Visit their website at www.misterneats.com or call 1-888-NICE-TUX (1-888-642-3889) for a location near you.
Remember, Expressions Photography will be at the event taking formal portraits. How often do you allow yourself to get completely dressed up and have the chance to document the occasion? Mister Neat’s respectfully asks that you try to come in four days prior to the event for the best choices and time for fitting. That would be October 10th for us, so don’t delay.
Looking forward to seeing everyone!
It has been so long since we have posted anything, there are probably many of you thinking all sorts of things. The lack of communication is not indicative of my health, thank God. My progression remains blessedly slow.
The title of this posting is extremely accurate as we are in the midst of an incredible amount of action due to the planning of our Angels for ALS Gala on October 14th. We are nervous, anxious, excited and blessed now that we are in the month of the actual event!!! It is like planning a large wedding and asking people to pay to attend. Just for fun we’ll add live and silent auctions!
It has been busy, but very fun and rewarding. We love our volunteers! Thank you to all who have helped with either planning the event or donating in kind or auction items.
For anyone wanting more information on the gala, we have updated our site with the logo on the upper right side of the main screen. Simply click on the Angel’s Wing on www.alsliving.com. All are invited, but we do need to get the final numbers in by the end of this week for the caterer!!! So please, if you have any interest in attending you can register online with the link at the bottom of the event description. If you are unable to attend, please consider a donation and proceed in the same manner, but choosing “I am unable to attend…” You can always contact us if you have any questions.
FYI, the bicycle from the Tri-State Trek is still in the box! Thank you so much for supporting us with that effort as we did meet our goal of $6,000. Yea!
More Reflection and Christopherism columns to come after October 14th!
I did it!!! I can’t believe I actually made the entire 270 miles, but I did. I could not have made it without the support of so many. First and foremost, God. The support of Steven has truly been a Godsend from the beginning of training to the very end. Of course, I can’t forget all of our friends and family that have helped us along the way as well as the volunteers and staff at the Tri-State Trek and ALSTDF.
The first day started out with a big hill. Just getting out of the hotel parking lot, many people fell so I just waited back in the pack of 70+ riders. Gearing down and pedaling hard I made it up that first hill just fine. The gentle mist, wonderful cool temperatures and rolling hills made the first morning not too bad. I hung out with Ted (our friend, Angie’s brother from Boston). He is a far better rider than me and he provided great tips for the upcoming challenge. Beautiful scenery, great little towns, and then the first rest stop (rest stops were set up every 13-21 miles) seemed to come in a blink. I was starting to think I can do this; maybe I did prepare enough.
Then right before the lunch stop the sun started shining through with high humidity. This creates a heat index. Something people from Colorado are not that familiar with. Think of wind chill then reverse it. The temperature seemed to rise dramatically and really slowed me down. I drank as though I had never drunk before and I ate more than I have ever eaten in any three days of my life. Every rest stop the first day I had an Uncrustables (a no crust peanut butter and jelly sandwich from Smuckers) and fresh fruit with plenty of Gatorade and water.
I was hearing about the hill at the end of the day, but nothing could have prepared me. I was in the lowest gear possible and wishing for more, but I made it up the hill. Towards the end, I wanted to get off my bike because my legs were burning and I was incredibly winded I just kept thinking of all those who can’t ride and have died from ALS and started crying. Those angels really helped me up that hill. It was amazing sight seeing Steven at the top of the hill ringing that bell saying “Great job Jennifer, I am so proud of you.” We pulled into a room where all the bikes were to be held. I got off and started bawling (kind of like when we were diagnosed.) I told Steven that all I could do is think of all the people that have died from this terrible disease and I wasn’t going to stop.
So we headed for the dorms. We were in Storrs, CT at the University of Connecticut, UConn for short. They were nice and clean with sheets and towels provided. The shower felt sooooo good. I have to admit that it felt like when I gave birth to Christopher. My legs were shaking, I felt like I had to throw up, my knees hurt so bad that I couldn’t sit on the toilet and my shoulders felt like they were up to my ears. I got dressed (didn’t do my hair or put any makeup on) and headed to my massage that Steven had so kindly set for me!!! It was great, and after 11 hours of riding I just wanted to head to bed. I had had it. But Steven said no, you have to eat something.
We went down to the eating area and I got a little food down, still feeling terrible. I remember telling Steven that if I feel this way tomorrow it wouldn’t be possible to ride. On the way back to the room we ran into Mat (the Event Coordinator.) He said he would send up the nurse to check on me. So in the room Mary Beth came to my rescue with a little help from Steven and Ty. With both knees iced and elevated while trying to eat some crackers, I went to bed. I know some of you are thinking I might have been dehydrated but I don’t think so because I went to the bathroom 5 times that evening. Well, about 4am I woke up and was feeling quit a bit better. Still sore, but I was determined to ride, so I Chamoise Butt’rd (slippery goop for a rider’s groin area) my bike shorts and went back to bed until 5:30am.
I woke up and got dressed, figuring if I can just make it to the 1st rest stop, maybe I would quit there. We lucked out with another cool start, but this time a bit more rainy. Ty hung with me most of Saturday and I started out with my knee brace on. Most everyone was moving a little slower on the second day, but just as determined.
The most motivating person I met for the day was Daryl Goss with his girlfriend Robin. Daryl was set to ride the second day and so was Robin until she injured her knee two days before the ride, but it worked out good for us because Steven rode with her that day. You see Daryl has ALS and was riding!!!!! What an inspiration he is to me and so many others. While on the ride we talked a bit. I remember we were waiting for the ferry to take us across the CT River and he asked if I was really selling my bike after the Trek was over. I told him yes and that riding didn’t fill my soul. It was a lot of work for me and very lonely. It seemed to represent what it is going to be like when/if Steven is gone and I’d rather put on a headset of great music using our Nordic Track at home for an hour and call it good for the day. Anyway, it took too much time away from Steven and Christopher training and I felt extremely guilty leaving all the time.
Daryl seemed to be kind of miffed at my response but didn’t say much. Later that day he told me that he thought about it and told me that it means more that I did this ride because it is something I don’t even enjoy and to train so hard and do such a long ride so unselfishly he highly admired me. I thanked him and told him how much I admired him, and he said he loved to ride!!!
Saturday was a much easier day on the whole but it was very still difficult for me. There were several large hills, but not like the prior day. The big issue for Saturday was the rain. It was really coming down and I had never trained in the rain so I was especially scared going downhill! With the help of Ty saying don’t think about completing to entire ride just little legs you can do it. It reminds me of ALS or any other disease if we think about the entire disease it’s overwhelming and seems impossible. If we take each day as it comes we can make it through it!!!
Saturday was the day of incredible views as I especially remember being right next to the ocean. It was the day we called our riding troupe the “scenic group” because we would stop and take pictures together at great spots. Our group consisted of Shannon, Tracy, Ty, Ted, Sylvia, Diane, Andrea and Billy (our ride marshal), with Mike coming in and out and many others at times. We worked well together and really helped each other when needed.
The second day ended at University of Southern Connecticut after another 11 hours of riding with much poorer room conditions than the night prior. I physically felt much better than the night before and actually dried my hair and put some makeup on after my shower. The massage therapists were awesome, for both nights I had Bill who I “LOVE.” He was great and took extra time with me each night…thanks Bill.
After very little sleep, we woke up at 4am so we would have time to eat and have it digest a bit before riding. We were told that the slower riders had to start early since we needed to be at the staging area by 2:30pm, so our group decided we would leave at 5am. It was still a bit dark and besides a little stop to fix my seat we were off. Well, only two miles into the day we were given a huge hill!!! I made it three quarters up the hill before my calf cramped up. Ty stopped with me and we walked the last bit to stretch out. I was on an adrenalin rush all Sunday knowing that I could make it. Sunday was another day filled with hills both up and down; I think I actually went over 38 miles per hour which is the fastest I have gone yet. Incredibly scary to say the least, but you start thinking that if I don’t get going it’s just going to be more work for the next uphill.
The third day was also the day I got to try out my tire changing skills. I had never really changed a tire before, but during training a friend and I took a class at Bicycle Village on bike safety which included how to change a tire. Luckily, I wasn’t by myself but I am sure I could have done it. Ty was with me and said “well let’s call Rick to change the tire.” I said no and that I took a class and knew how. Ty really helped a lot, but when we looked down for my pump, it was missing, at some point it must have fallen off the bike. So we had to wait until Harold came by with his CO2 pump which made the inflation much easier. But I/we did it, and we were back on the road in no time at all.
Rest stops were well supported and after that first day I stopped eating Uncrustables and starting eating Clif bars (an organic energy bar) and fresh fruit. Butt balm was all our best friends. I do have to say that by the third day my butt and girl region were quit sore, but bearable thanks to butt balm.
There was an incredible hill that everyone kept talking about all day starting on Jon’s street. It was at the end of day three; I was becoming more tired and just planned on walking it. I made sure everyone was aware of my plans so as not to have anyone worry. When we got to the hill, Ty was in front of me and said that he was going to pull off and walk; something or perhaps someone else (hmmm….) had other plans for me. It was like I was being pushed up that hill by angels. I just remember saying to myself just keep going. It helped having people cheering us on every hundred yards and I made it. With huge tears rolling down my face, I knew all my angels helped me up that hill. Ty later told me I actually got faster as I went up the hill. It was amazing, a definite “God moment.”
The rest of the ride about 10-13 miles, was pretty uneventful. When we all rode in to the finish together in White Plains, NY, I got off my bike where Steven and I hugged and cried for I don’t know how long. We cried for so many reasons. For me, I couldn’t believe I actually made it. I was so proud to do this for so many; so thankful of all that had supported the ride; so thankful of all that supported and prayed for myself and all the riders for the weekend; thankful to experience the feeling I had and finally to have such a wonderful husband to be there for me.
It was incredibly nice to see Jim Presbrey, our Extra Hands COO, and his wife Joann who drove 1 ½ hours just to pick us up and take us to another friend’s home who lived another 45 minutes away, only to drive back home, we feel so blessed!
I have recovered better than I expected. I actually worked out Thursday morning (back on the Nordic Track.) Steven and I actually went for massages as well. Overall I discovered during the ride that instead of feeling this was God preparing me for the future without Steven, now I have the feeling that I have so much support from so many sources that I don’t even know about. Special thanks to Team Bishop for all you have done. Thank you to all that have supported us for so many years. Also, for those of you who continue to support us. I know there is a long journey ahead but I can’t be focused on the end result. I only have today to make it through, which I guess that’s what we all should do, because the future is not guaranteed for any of us.
It WAS the hardest thing I have ever done and don’t plan on riding again next year; however, I would love to support the riders!! I assimilate my ride to having Christopher everyday for three days. I hope that gives perspective of my feelings!!! I am so glad I did it as it was an amazing experience. It will forever be something I will look back on when I need extra strength and be able to pull from. Thanks Mat and Jim for talking me into it last year…..God Bless
Jennifer conquered 270 miles, three states, insane hills, high humidity, high anxiety, pouring rain, extreme pain, early hours and dorm rooms. She got a flat tire, the rear one, of course and changed it herself (with a little help from fellow riders. Her tire pump fell off at some point.) I'll leave the rest of Jennifer’s details for her to express in a future posting. I simply could not do justice to what she went through to accomplish this feat.
As far as my details; honestly, there were times when I felt so useless, because I couldn’t ride or even help much. I struggled as the ride proceeded with fatigue and pain from too much walking and standing, yet I survived. That’s not what this posting is all about. By the end, I realized how selfish those feelings were. Overall, it was an emotional, humbling and inspiring event.
I was so happy to have been able to participate in the whole ride this year as I saw the event truly unfold and reveal itself. It was like popping the cork on a bottle of wine; smelling and tasting it develop as apposed to just looking at a bottle sitting on the shelf as in the previous years when Jennifer and I just spoke the night before the ride and had to leave the next morning. (Sorry, I had to get a wine reference in the article somehow!!!)
Last night, I thought of some things I wish I said to all the riders, volunteers, sponsors and our event coordinator, Mat Mendel. I’ll do that now because I think a lot of what I have to say applies at least in part, to all the people reading this posting.
After the ride, most everybody settled under a tent at the finish line in White Plains, NY for some dinner and a few speakers. I surveyed the crowd and began to tear up. These people just worked their butts off, some literally, for the last three days. There were months of preparation leading up to the event including training and incredible fundraising efforts. Some people participated to honor a loved one lost to ALS, others to support those still in the battle and still more simply out of the goodness of their hearts.
I am humbled by the fact that all of this took place to raise money for ALS research via ALSTDF. This action benefits me directly by providing me hope for a treatment or cure, possibly in my lifetime. Attitude is everything when dealing with this disease and hope is the cornerstone.
I am inspired by the overall goodness in people and the extremes that they are willing to go to even if something doesn't affect them directly. It's easy to turn a cold shoulder with all the negativity that permeates the media. When you experience an event like the Tri-State Trek and the people that are involved, you can’t help but be in awe of the power of humanity. The more we work together, the more we can accomplish. Jamie Haywood, founder of ALSTDF, mentioned at the closing ceremonies; what a better world we would live in if more people would ask, ‘How can we help?’ versus, ‘What do you want?’
Most of all, I am grateful. I am grateful to all the people who worked so hard to make this event possible. I am grateful to everyone who rode their bikes and fundraised. I am grateful to all who sponsored, whether corporately or personally. I am grateful to ALSTDF for their determination in finding a treatment or cure. And finally, I am extremely grateful to Jennifer for being my hero and pushing herself far beyond anything she could have imagined and finishing this ride in my honor.
Jennifer had many moments of struggling, but you can ask anybody I talked to and they will tell you I never had a doubt that she would finish. She had the prayers of hundreds of people for safety and strength. She had her angels of those we have known that have passed away from ALS. She had the support of all who are reading this now. Thank you, everyone.
WE ARE SO PROUD OF YOU, JENNIFER!!!
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Two weeks from today, Jennifer will be crossing the finish line for the 4th Annual Tri-State Trek. It has been a while since I wrote about it so feel free to click on the link to find out more.
Let me first add some perspective to the situation. We have been the motivational speakers for this event for the last two years, an honor to be sure. Somehow, she was convinced to ride in this year’s event by the riders and event coordinator from last year.
It’s easy to say “Yes” when it is a year away!
In no way do I mean this to be insulting, but Jennifer is not an athlete. She takes pride and feels good working out for a few hours a week, whether it’s walking with a friend or using our Nordic Track. Cycling is not and never was even an occasional activity. Yes, we had mountain bikes that I think we rode a handful of times, but they still have the little rubber knobs on the tires! The bottom line is that this ride is WAAAAYYYYY out of her comfort zone.
I really need to put Jennifer’s efforts into writing as I think it will make me appreciate them even more, it that is possible. She has been training on our Nordic Track since August of 2005, three to four times per week. In November of 2005 she joined a “spinning” class designed to simulate riding, build the correct muscles and perform cardio-vascular training. The first gym changed from paying by class to requiring an expensive full membership. The second gym had a reasonable membership price with great classes and then promptly went out of business after 5 weeks. It was late March at this point, so we decided to buy the road bike Jennifer would need for the ride. This way, she could experience actual road conditions and get used to her bike at the same time.
The main psychological reason Jennifer is doing this ride is similar to many other riders. The premise being that if ALS patients can endure their symptoms and circumstances daily than surely 270 miles of cycling and 3 days of physical and emotional stress can be tolerated by one in good health. It doesn’t hurt that we are raising money for ALS research!
I cannot imagine what she will go through or quite frankly, all she has already experienced in preparation for this ride which it is so out of the norm for her. I know she is dedicated, overwhelmed, nervous and scared. She is frustrated with the amount of time training takes from all the other things she feels responsible to do. All prayers are welcome for Jennifer, but most of all for her safety.
Several people have asked how to sponsor her so please click on Sponsor Page and make sure you put her name and rider number 44. We ask for your financial support at various times throughout the year, so please do not feel obligated if this particular effort does not call you. This is just one of those opportunities. To those that have already generously sponsored her, thank you so very much. The money Jennifer is raising goes to ALSTDF for ALS research. We know the people in this organization personally; they are very dedicated as well and are doing an incredible job with their work.
To Jennifer,
I am so incredibly proud of you. The dedication you have shown emphasizes one of the characteristics in you that I love so much. Your willingness to participate in this event and follow through with it inspires me to continue my fight with unending vigor. Thank you.
We have been busy planning so please mark the date, October 14, 2006. The event name has changed to the Angels For ALS Gala. We feel the title describes the extraordinary people that we have the privilege of being involved with. The Angels For ALS Gala will benefit Extra Hands for ALS and our Denver Chapter.
As you may be aware, Jennifer is the Program Manager and I am the Program Ambassador for the Denver area. This unique ALS organization teams up student volunteers and adult mentors with families affected by ALS. The result is the empowerment of all parties involved by the contribution each makes to the other’s lives. We will be honoring the volunteers that make this organization possible.
The venue will be the new Belmar Center in Lakewood. This black tie optional, Saturday night extravaganza will feature a live and silent auction; sit down dinner catered by our great friends from Dolce Vita Restaurant and dancing afterward.
We are setting our sites on 600 people attending and a have a fundraising goal of $100,000 (It’s a nice round number!). Tickets will be the same price as the last gala Jennifer and I hosted in May of 2004 at $125 per ticket. Table sponsorships will also be available and are strongly encouraged! These opportunities are not yet finalized. A portion of all ticket prices will be tax deductible.
If you would like to help by donating your time, auction items or perhaps sponsor part of the event please contact our event coordinator extraordinaire, Karlye Burge at (720) 934-9299 or mailto:kburge@collegeamerica.edu.
There are many more details to follow, but get October 14th on your calendars now!
http://www.cbs4denver.com/video/?id=17417@kcnc.dayport.com
Have a great day!
Just a quick press notification. The Bishop family will be appearing on KCNC-TV/CBS4 News in the Denver area at 7 a.m. MDT on Sunday, May 21, 2006.
Since May is ALS Awareness Month, the subject of discussion will concentrate on awareness and our Extra Hands for ALS program. Please join us Sunday morning or set the Tivo, DVR or VCR recorder if you are not planning on getting up that early. This is live, so it will be interesting for this family at that hour!
We would like to thank Susie Roy for pitching this story to the Channel 4 staff. Thank you also to CBS4 News Producer, Alan Singer for the opportunity and Reporter, Jodi Brooks for setting it up.
The generosity of the media to air these human interest stories is a huge key to our success in building awareness for this horrible disease. Occasionally, I lose perspective of ALS because I am so blessed with my slow progression. Unfortunately, I am too often reminded of the normal progression when Jennifer and I are notified of yet another death in our ALS community. I am so thankful that I can still participate with Jennifer in these PR opportunities and hopefully do justice to those of us that cannot.
After five years of living with ALS, most people know we’ve developed a fairly dark sense of humor. It was common to hear the phrase, “I was hoping to be 6 feet by the time I was 40; I just didn’t think it would be 6 feet under.” Jennifer also received a considerable amount of grief for not letting her only child and dying husband have a dog. Humor is a strong weapon against this disease even if it’s in the dark sense.
Funny how things change. I’m now 41 years old, still in the ALS fight, but have remained only 5’7” tall. I can’t use my 6 feet under joke anymore and now…we have a dog. Yes, you read correctly. On Friday, April 28 at 7 p.m. a puppy Bichon Frise was delivered to our door.
Christopher and I had been working on Jennifer for quite some time. She was constantly barraged with the dark humor joke. The ice was slowly melting as we kept visiting friends that had dogs. Christopher’s eighth birthday was coming up and he proclaimed his responsibility of being able to take care of a new dog.
Research ensued via the Internet, pet stores and friends. One of those friends just happened to have a Bichon Frise. The cuteness and wonderful temperament of Sophie were hard to resist. That was quite awhile ago but the memory lingered.
In all fairness, Jennifer loves dogs. It was really the prospect of taking care of Christopher, me and a brand new puppy that overwhelmed her. I can’t blame her for that.
Jennifer found a breeder in Longmont, Colorado that had one male Bichon Frise left. It had all it shots and even a microchip implanted for identification. As it turned out, the breeder decided he was too cute and kept the dog for himself. What a bummer. That would have been too convenient.
Jennifer decided to call our friends with Sophie and find out where they got her. They had apparently referred this breeder to several other family members, all with joyful results. Unfortunately, he was in Nebraska. Jennifer thought that he might know some breeders in Colorado so she gave him a call last Tuesday. As it turns out, he had two male dogs and happened to be coming to Denver on Friday. Jennifer hung up both excited and nervous. He sent us the following picture: click here. Christopher’s birthday is May 5th and the an early birthday present just landed in our lap, literally.
For the next couple days, while Christopher was in school, Jennifer and I spent time shopping for dog stuff. We had to buy books, a kennel, food, snacks, toys and yes, carpet spray for those accidents sure to come. The financial commitment of a dog just slapped us in the face.
Christopher did know that we were looking for a pet but really had no timeline or immediate expectation. As far as he knew we were still considering fish or maybe a guinea pig.
Jennifer was leaving for a women’s retreat with Cherry Hills Community Church in Breckenridge at 5 p.m. Friday. The breeder, Norm was trying to get here from Nebraska by 4 p.m. so Jennifer would be able to meet our four legged friend before she left. Norm called and was not going to be in town until later, so Jennifer missed him and didn’t return until Sunday. She was kind of sad, but at the same time we were chuckling at the irony that Christopher and I wanted a dog, we got one and Jennifer was leaving for the toughest two days of adjustment. Poetic justice!
Christopher had already been talking about what name he would give a pet if he got one. When Norm arrived that evening, Christopher thought it was a cute dog and was petting him gently. I had the video recorder on and announced that Mom and Dad wanted to wish him an early Happy Birthday and it was his dog. He looked back at the camera blankly and asked, “This is my dog?” and, “I didn’t know that!” Christopher asked if he could name him and much to our surprise…NOT…it was C.J., short for Christopher Jr. They took to each other quite quickly even though C.J. was a little scared and timid. Bichon Frises are known to cuddle and that’s all he wanted right now. Christopher was more than happy to oblige. We decided that C.J. could also stand for couch jockey.
The first two nights were accident free, but not uneventful. Friday night, there was no whining like a puppy missing his mother or littermates, simply a small whimper to wake me up and let him outside. It was about 2:30 a.m. and he did his thing during playtime for about a half-hour. We went back inside to cuddle so he would get tired again. The next night he woke up twice, one time even waking Christopher. Christopher tried to get him to go back to sleep but to no avail, he wanted to play and eat.
Jennifer came home early Sunday afternoon and was overjoyed to meet C.J. It didn’t take her long at all to bond with him. Christopher and I told her of our adventures during the weekend. She had had a wonderful time as well, but was happy to be home to greet our new puppy. Oh yeah, she missed us too.
The final irony in all this is when the time came, Jennifer really ended up doing 95% of the work in finding C.J. and she is just as thrilled about this dog is Christopher and me. She’s really just a softy with a big heart…but, we already knew that.
I have to work on some new jokes to keep the dark humor going! Welcome to the family, C.J.
I was joyfully overwhelmed at the number of responses I received from my “Five Years” posting. I can’t begin to tell you how much all the well wishes mean to me. I apologize that I have not been able to get back to everybody. Thank you so much to everyone who took the time to write and everyone else for their silent thoughts and prayers.
I have to share a quick story with you. I was having a frustrating day last week as my left thigh decided to spasm and twitch for several hours. Think of this is as continual use of a weakened muscle for an extended amount of time. Some of you may know this is one of the symptoms of ALS. My leg was quite exhausted so I decided to take a rest, put my legs up and watch some TV. Jennifer and Christopher joined me.
Jennifer knew my leg was bothering me and came over to see if massage would help. This got Christopher’s attention because of his similar compassion and he wanted to help. I wanted to show him what my leg was doing and why it was so exhausted.
The first thing he said when he saw the muscle spasm over and over again was “It’s beeping!” I never quite thought of it like that, but it certainly added some levity to the situation. He then proceeded to help Jennifer massage my leg. I know I can always count on Christopher to make a situation better.
Imagine getting told that you have only two to five years left to live, get your affairs in order, and don’t plan anything more than three months in advance. What would you do?
It was five years ago today that I was formally diagnosed with ALS. I had a total of three opinions, the last of which was requested by the one and only Jerry Lewis. He refused to believe that I had ALS and set up the third opinion with one of the leading ALS neurologists in the country, Dr. Stanley Appel from Baylor College of Medicine in Houston, TX. Even Jennifer allowed herself the thought that they might be wrong with my diagnoses. I had hope, but I knew in my heart it was ALS. I had every symptom, it was just moving slowly. Unfortunately, Dr. Appel had to make the call the Jerry Lewis that it was indeed ALS.
Statistically, I had an 80% chance of being dead by today. I haven’t been in the top 20% of much, so I’ll take the top 20% of survival! Today is the completion of my first goal I set after my 40th birthday, making it to five years.
I have been to more funerals than I thought I would attend in a full lifetime. The vast majority of these were for people diagnosed with ALS after me. I’m astounded by that fact. On occasion, I also experience a sense of guilt that I’m still here. I’ve been told that I shouldn’t feel that, but I do. The other side of that is the experience of being truly blessed. That, by far outweighs the guilt, I assure you.
Physically, I’ve been told I look quite similar to days gone by. I wish I felt that way. My progression is quite different from that of most of my ALS comrades in many respects. The doctors and textbooks say that pain is typically not a symptom of ALS. Technically, I would agree that the loss of motor neurons is not painful. However, for me, the loss results in a constant level of discomfort in the form of twitches, spasms, cramps, fatigue, joint aches, soreness and sharp pains. Many ALS patients do not experience pain, but most have a steady stream of muscle function losses leading to paralysis. Some patients have both.
I have not yet had a complete loss of function in any particular limb, speech or swallowing. However, my endurance in these areas has been dramatically compromised. Muscle loss is evident in my arms, shoulders, hips and legs. I cannot stand or walk for long periods and use a wheel chair for extended walks, i.e. airport, malls, etc. There has been a couple choking incidents, leading to more cautious habits. Personal hygiene is manageable, but can be exhausting and frustrating. I find I can start many things only to succumb to fatigue.
I have not driven in 4 1/2 years, primarily do to the frequent repetitive movements and endurance required. The last time I drove was to take Jennifer to the hospital for an emergency Appendectomy.
Due to breathing difficulties, I have been using a BiPAP (Bi-level Positive Air Pressure) machine for 1 1/2 years. This noninvasive ventilation is used at night, frequently by sleep apnea sufferers. There are actually clinical studies being done to test whether early intervention with BiPAP leads to enhanced longevity. This machine essentially allows all my breathing muscles a chance to rest while I sleep. I still get winded doing simple things like even talking too much. That may come as a relief to some of you!
The ALS Association was kind enough to purchase a specialized mouse for me. The brand is RollerMouse and puts the mouse capabilities right below my keyboard, minimizing my shoulder movement. I have written the last several postings using voice recognition software called Dragon Naturally Speaking. This is on loan from ALSA as well. It allows me to dictate into a microphone, correct words or phrases, all without touching my keyboard. The common theme to all this is energy conservation.
The reason for writing this physical summation is not for pity. It's more for my own reconciliation of where I'm at after five years. It may sound like a lot, but considering the alternative, I am very, very lucky and thankful.
I'm beginning to understand why this disease is so difficult to research. It manifests itself and progresses so differently in each patient. It has to be difficult to find patients that are similar enough for clinical studies to have meaningful results. Why do some people have limb onset ALS while others have bulbar symptoms first? Why do some people have pain and others not? How can there be a sporadic and a hereditary type? Why are there fast progressions and slow progressions?
Emotionally, I’ve never been stronger. I feel I have lived more in the last five years than many people do in a lifetime. I did not grow up with any religious background. It has grown over time and curiosity. My belief in God and Jesus Christ as my Savior has blossomed and I am comforted by where I am going next. Everyone is on their own spiritual journey. I respect them all. I guess I feel that if I am wrong in my beliefs than what harm has been done me? I have lived happier, more lovingly and been comforted by it. I do not fear death which allows me to concentrate on this life. There are many things I give credit to for my slow progression; specifically many prayers, my family and friends, low stress and a positive attitude.
Jennifer and I continue to feel oddly blessed by this disease as it has changed our life perspective for the better. We have been immersed in the ALS community for a long time now and to varying degrees. We started with the MDA and continued with Northwestern Mutual Insurance, the ALS Association, Tri-State Trek and the ALS Therapy Development Foundation. We now continue with our mission by launching Extra Hands for ALS in the Denver area starting last November. The feeling of positively affecting other people's lives is intoxicating. It has brought a stronger, more meaningful purpose to my life.
I could not do any of this without my wonderful bride, Jennifer and incredible son, Christopher who give me inspiration everyday!
On to the next five years...
On Monday, February 27, Christopher came home with a folder full of letters from his fellow students. These letters contained requests for me to read to their class. Some of them were short and to the point, while others were elaborate including drawings and questions about me and things I liked to do with Christopher.
Now Christopher’s teacher is the kind that you remember for the rest of your life. She loves the parents to be involved with their children. One way to accomplish this was to invite parents to read to the students for about twenty minutes in the morning. I have to say it’s pretty difficult to say no when you have almost twenty letters from second graders requesting it. I found out I was the first parent to be invited and was quite honored. Friday, March 3 was decided to be my day for reading.
The night before, I carefully went to Christopher’s bookcase and selected several options. One book was too long, another too simple, and then the perfect book revealed itself. That night, Jennifer was the lucky one, and apparently in Christopher’s prayers he requested that I didn’t embarrass him in front of his classmates. Jennifer shared that with me when we went to bed. No pressure!
The next morning Jennifer drove us all to school. I walked into the classroom and watched all the morning rituals of a typical second-grade class. The students have a board where they are supposed to record their own attendance and select which lunch they want. Their teacher calmed the class down and made several announcements. And then it was time to watch the TV where a couple of older students give the school wide news and lead the Pledge of Allegiance.
I was then introduced as the guest reader. Christopher was all smiles. Then each of the 21 students introduced themselves with a handshake and their name, and promptly sat down in front of me. I thanked them all for inviting me and all their wonderful letters. Answering some of their questions from the letters, I told them my favorite color was blue, and that my favorite thing to do with Christopher is hear him laugh.
Hoping I had their attention, I finally showed them the book I was going to read, Scooby-Doo in the haunting mystery, “Howling on the Playground.” I tried my best so that I wouldn’t embarrass Christopher. I had a little bit of difficulty holding up the book while showing the pictures and reading as my shoulder muscles fatigued, so the book was a little shaky. All in all it went very well and I did get a pretty good laugh out of my Scooby-Doo voice. When Christopher came home that afternoon I was presented with twenty one thank you’s in the form of bookmarks.
I feel so incredibly blessed that even after almost five years of being diagnosed with ALS, I am still be able to go into Christopher’s classroom, interact and experience the sheer joy of participating in my child’s life.
We were just notified that KWGN, Channel 2 will be running a story that Vida Urbonas, WB2 News Weekend Anchor and Reporter, taped a few weeks ago. This is our local Denver WB2 station. The segment is about ALS and Extra Hands for ALS. Jennifer and I were interviewed along with one of our teams of volunteers and a family dealing with ALS.
We don't have any more information, other than it will air during the broadcast of WB2 News at 9pm MST on Saturday, February 25th. Over 4 hours of video was shot during the taping, so we don't know exactly what will be discussed in the 2-4 minute segment. Vida was just a sweetheart to work with and we trust her implicitly with the content. News being what it is, we are always subject to rescheduling or scrubbing in the event of an emergency.
Thank you to WB2 and Vida Urbonas for taking the time to run a human interest story so close to our hearts! Our dear friend, Angie Austin, morning Weather Anchor for WB2 News got the ball rolling for this story. Thank you, Angie! It means the world to us to continue to get the word out about ALS.
I can't believe that it's been two weeks since that powerful and extremely moving ‘ER’ episode entitled ‘Body and Soul,’ guest starring James Woods. I must congratulate NBC, the producers and writers of ER, all the actors, specifically James Woods and the ALS Association. It's quite an undertaking to portray the progression of a person with ALS in a one-hour episode less 15 to 20 minutes of commercials.
I know I have a slow progression of ALS, but I've been around long enough to see all stages of this disease. I simply don't believe they could have done a better job of educating the public in such a short time. The episode included such details as assistive communication technology, noninvasive ventilation (BiPAP), DNR orders, emotional incontinence, slurred speech and the possible range of feelings, one with ALS might experience. I'm sure I even left out a few.
The caregiver role was addressed, but just barely. To be honest, that could be a whole other episode. At least they showed her in the early stages as young, energetic and vibrant. At the hospital, she wore no makeup, had tousled hair with bags under her eyes.
I thought it was very clever to use flashbacks in order to view the progression of ALS with James Woods’ character, Dr. Lennox. In the last flashback, 1999, he is seen in his classroom full of energy, even lifting a 155 pound student. His first symptom was subtle, as it usually is, by the simple dropping of the molecule model, as he talked Abby out of dropping his class. The emotional struggle was evident after he got his diagnosis and decided not to pursue the relationship with his assistant. Dr. Lennox was having trouble balancing and was trying to use his opposite hand on the stair rail, when he fell and broke his wrist. Finally, slurred speech and breathing difficulty was evident in the first flashback.
This script writing for this episode was very well done. They were able to include so many descriptive details, as opposed to simply mentioning the assistive devices. I contemplated the possible double meaning in one of the first scenes when Dr. Lennox’s voice synthesizer says, "want out, please." And again, "let me out, please, let me out." I think the writers could have used many different phrases; however, this one said to me, let him out of his body, as well as out of the hospital.
James Woods was interviewed by Katie Couric on the Today Show the morning the episode aired. He obviously went over his allotted airtime as Katie kept trying to cut him off. He was so passionate about getting as many details in as possible. James shared that he had the opportunity to speak with six different ALS patients in different progressions thanks to the ALS Association and the patients that volunteered their time. The show would not have been the same without their help. Thank you all.
The talents of James Woods will not go unnoticed. I have no doubt that he will win the award for Best Guest Actor in a Series. The community of ALS has a dear friend in James Woods. I have to imagine more awareness was brought to ALS in this one-hour show and related interviews since ‘Tuesdays with Morrie.’ We now have one more frame of reference to allude to when describing ALS.
It was extremely emotional to watch the show, but necessary all the same. My biggest concern was that they got it right in the allotted time they had. I feel they did. The most difficult part of the episode was the discussion and procedure of inserting the trach. It seemed as though Dr. Lennox’s advance directives were known yet there remained confusion. When Dr. Lockhart assumed she had consent to put the trach in, my bride Jennifer broke down in tears. She wasn't sure if she would be strong enough to handle the same situation if it were me. She knows my wishes and they are documented. Even so, if Jennifer is not ready to let me go and there is a persistent doctor, she is concerned about the ability to follow those wishes. If there is any doubt, I know the right decision will be made. I am at peace about it all.
I welcome and encourage any comments to this posting. It is a great conduit for discussion and awareness.
This is what happens when you try to do to many things at the same time!!!
'ER' airs on NBC at 9pm MST, Thursday, February 2nd.
'The Late, Late Show with Chris Furguson' airs at 11:35 pm MST on CBS, Wednesday, February 1st.
Sorry about that.
To further promote ALS and the ER episode, James Woods is scheduled to appear on “The Late Late Show with Craig Ferguson” on CBS on Wednesday, February 1st. In addition, this week's issue of TV Guide features a story on the ALS episode.
The New Year is already in full swing and I have much to be thankful for these days. I've got an incredible support system of family and friends. My progression remains steady, which is actually good, because it is very slow. Jennifer and I plan on using this extra time to continually pursue our mission.
In May of 2003 and 2004, Jennifer and I were the hosts of ‘The Gift of Time Gala’ that benefited MDA’s ALS division. We netted approximately $54,000 and $65,000 respectively. MDA did a great job of organizing the event as we all had a blast both years. However, MDA has chosen not to participate in this event. We would like to apologize to all those who attended the previous two galas as to the lack of information that was distributed in 2005.
With that behind us, we are now looking forward to the ‘The Gift of Time Gala 2006’ benefiting our new Denver Program of Extra Hands for ALS. Remember, at Extra Hands for ALS, we are not only helping families with ALS cope with day to day living. We are also developing the leaders of tomorrow through the fight with ALS. We picture this event honoring those that make our organization possible…the volunteers.
We are just beginning to conceptualize the gala and are looking for a committee to help organize it. We have been blessed by the involvement from two of our Extra Hands volunteers, Karlye Burge and Blair Orton who will be co-chairing the committee. They have already been brainstorming and can't wait to discuss the event in more detail. They have a background in event planning and have a trememdous amount of energy. Jennifer and I are in the midst of recruiting student and mentor volunteers as well as families to participate in Extra Hands for ALS. The money raised from this gala will support our local efforts as well as fund ALS research looking for near term treatments.
At this point we would like to find persons willing to commit some of their time to this event. The date, venue and theme of the event are of utmost importance. The Gala Committee will agree upon these crucial items. From that point Karlye and Blair can organize and delegate appropriately.
Please consider and inquire as soon as possible. Simply send us a message by using the “Contact Us” tab above. Also, we welcome any corporate involvement via event sponsorship on some level. We can only hope that despite the Gala sabbatical in 2005, you will join us for 2006. Thank you so much for your support.
The February 2nd episode of ER, entitled "Body & Soul", will be entirely devoted to a character with ALS. James Woods, who plays the man with ALS, met with 6 individuals with ALS last December for a crash course in living with ALS. For the full story, click here.
Also featured in the episode is Eye Response Technology, which allows people to communicate through eye movements via a a computer and voice synthesizer that can attach to a wheelchair. For more information click here.
This is the type of national exposure we need to make ALS as well known as Parkinson's and MS. Thank you to the ALS Association for their involvement to make sure they got it right!
'ER' airs Thursdays on NBC, at 9:00pm MST.
This workshop is sponsored by the Rocky Mountain Chapter of the ALS Association. It is a four week program designed for newly diagnosed or new to the area ALS patients and their families. Information about the disease, support and resources available from ALSA will be the main focus. The dates of this event are the first four Mondays of February on the 6th, 13th, 20th and 27th, all from 6:00pm to 7:30pm. The workshop will be held at the local ALS office: 1060 South Parker Road, #29, Denver, CO 80231. We encourage anyone involved with ALS to attend. This information is available on our "Events" tab above. Remember, knowledge is power!
On a sidenote, if anyone wants to promote an upcoming ALS event or program, please drop us a note and we will publish it here if it supports our mission.
Today is probably the first day back to work for many of you and I wanted to give some food for thought to be used over the course of this New Year that we have been granted. I’m reminded of a story I told at one of our MDA/ALS Gala’s about the Mayonnaise Jar. My version goes like this:
On the first day of Philosophy 101, the freshmen sat eagerly to begin their college careers. The professor patiently waited for everyone to get settled. Once the attention was properly focused on the lesson for the day, he began. From under the counter he produced a large mayonnaise jar and proceeded to fill it with golf balls to the brim.
He asked the class if the jar was full and with obvious results, they answered yes. He reached under the counter again and produced a significant amount of pebbles. Carefully, allowing the gravel to filter into the voids in the golf balls, he filled the jar to the top of the threads and then asked again if the jar was full. The curious class responded with a resounding, “Yes!”
Our clever professor reached under the counter yet again and produced a bag of sand. He carefully added this to the jar, shaking every once in a while to settle the sand between the voids of pebbles. The sand spilled over the top and he asked the class one last time if the jar is finally full. The professor paused, allowing the class to ponder. Not seeing how anything else could possibly fit between the sand, the class unanimously nodded their heads in agreement.
Finally, and ever so slowly, the professor presented two wine glasses, filled with an obvious red colored liquid. Very simply, he added the contents of both glasses to this mayonnaise jar filled with golf balls, pebbles and sand. Of course, the fluid ran easily between the sand as the glasses were emptied. The students laughed.
"Now," said the professor, as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and favorite passions -- things that if everything else was lost and only they remained, your life would still be full. The pebbles are important things that matter like your job, house, and car. The sand is everything else -- the small stuff."
"If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls.
The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that have the most meaning. Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your significant other or friend out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first -- the things that really matter. Set your priorities. The rest is just sand. One of the students raised her hand and inquired what the wine represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a glass of wine with a friend."
The beginning of the year always seems the time for resolutions. Resolutions seem somewhat temporary to me. I challenge you, our readers, to make this year count for the priorities of life. Make this the year that the Mayonaise Jar is filled in the proper order…so it all fits.
This will be an exciting year for me as I approach my five year anniversary of my ALS diagnoses. Not to jinx myself, but I will officially pass into the top 20% of survival for ALS patients on March 15th. Now, I haven’t been in the top 20% of much, but survival is definitely one that I am utterly grateful for. There still may be a bus out there with my name on it, and I’m still ready for that, should it happen. I’m just at peace with it all and it allows me to put the golf balls in first.
Because of my longevity, it has allowed Jennifer and I many wonderful experiences through the Muscular Dystrophy Association, ALS Association and Northwestern Mutual Financial Network. These experiences have prepared us for the journey mentioned at the end of last year. Our new Denver Chapter of Extra Hands for ALS is in full swing with a new CEO, Mickey Kesselman and COO, Jim Presbey on board to take this incredible organization to the next level. Our fearless founder, Jack Orchard, has seen to it that the power of his vision will exceed even his own expectations.
In Denver, we officially have two families with ALS and their volunteers in place. We already have many student and mentor volunteers as well as ALS families signed up eagerly awaiting geographic compatibility. With the second semester of school about to begin, we are still looking for school and civic groups that Jennifer and I can present to for more potential student and adult mentor volunteers. There are literally hundreds of families with ALS in Colorado that we can help. We need to build our team of Extra Hands so when more families sign up for assistance, we can match the teams quickly and efficiently.
Another facet to Extra Hands is fundraising. It’s a tough word to write directly following the holidays but we are intially looking for company sponsorships to fund Denver’s Extra Hands program as well as national research for near term treatments of ALS. Our new CEO, Mickey Kesselman will be in town from January 18th and 19th. He is hoping to meet some of our volunteers as well as potential grantors to our organization. If you know of a company that might be interested in funding Extra Hands for ALS, please advise us as soon as possible so we can have Mickey join us in presenting our mission. This is not just about helping families with ALS but also developing our future leaders, the student volunteers, by involving them with life lessons that cannot be taught in text books.
Thank you all for your continued support and prayers. We honestly believe they are part of the reason why my progression has remained somewhat slow. Please know that our thoughts and prayers are with you as well for a healthy, prosperous and happy New Year!
We just wanted to wish everyone a joyous holiday season. We feel very blessed to have such an incredible support system. Thank you so much.
Christopher just had his first concert with the Colorado Childrens Chorale last night. It was held at the new Ellie Caulkins Opera House here in Denver. There were 400 children singing holiday songs in a fantastic production. They had two 3 1/2 hour practices last week in preparation and Christopher was a trooper. If you have never been to a childrens concert, try to get to one. They have an energy and enthusiasm that can't help but put a loving spirit in your heart.
Christopher lost one of his front teeth in October and I pulled the second one a couple weeks ago. I'd like to say that all he wants for Christmas is his two front teeth, but come on...he's seven years old!!! There are just a few more items on his list.
Just a quick note to take the time to notice all the little things around you at this special time of year. Children's eyes aglow, beautiful lights and decorations and the special people you have in your life.
Last week was absolutely one of the busiest, yet most rewarding weeks in quite some time.
One of the first activities for starting the Denver Chapter of Extra Hands for ALS was to have Connie Stauts, the Program Manager from Boise, ID come in and train us. She scheduled herself to be with us all day Friday and Saturday, the 11th and 12th of November. Our objective was to have five volunteer families and mentors along with ten student volunteers ready for training. Since there was not a lot of immediate reaction to my first posting on Extra Hands we were getting a little worried.
We did get a response from Susie Roy who helped coordinate an event for fellow PALS, Lisa Nichols from Greenwood Village. Susie teamed with a teacher from Smoky Hill High School, Katie Kleeman and together with contributions from many others had over 2000 people raise around $100,000 in one day. Susie put us in touch with Katie and we asked if she might arrange a meeting with one of the groups at her school that might be interested in a community volunteer project. We were hoping she could set it up for the Friday that Connie, our trainer, would be in town so she could show us the ropes of a student recruiting presentation. She had successfully set up two or three class presentations starting around 10:45AM. We were heading out of town for Wednesday and Thursday and would return in time to present on Friday.
Our trip out of town was a speaking engagement in Kansas City for Northwestern Mutual (NWM), our life and supplemental insurance company. This is when we get to share our story of financial preparation to their representatives in order to give them a current, real life situation where their services are truly benefiting people. The idea is to inspire and motivate them and help us fulfill the fourth part of our mission. There were about 60 people there who made us feel very welcome. The feedback we received was incredible and made for a very fulfilling experience.
We returned Thursday night at about 7:00pm to find about 13 messages, 6 of which were from a much panicked Katie Kleeman from Smoky Hill HS. Apparently, she had arranged EIGHT presentations for Friday starting at 8:55AM! Her messages were left at home number while we were in KC, so we had no idea. She was very nervous that we were not returning her phone calls after she had gone through so much trouble. Needless to say she was quite relieved when Jennifer confirmed we would be there with our faithful trainer, Connie in tow.
We had the privilege of speaking to about 160 incredible young adults in various classes including Student Government, National Honor Society, AP Chemistry, Key Club, DECA, AVID, etc. These students have the ability to restore your faith in our future leaders. They are smart, attentive and very active in their school and personal development. I pray that Christopher will have the drive these students have.
After the school presentations, I took a nap while Jennifer and Connie conducted an orientation and training course for three students and two mentor volunteers. Saturday started with another training of three more mentors and then off to do two family intakes (Extra Hands lingo for ‘interview’.) We returned to the house to go over a few more details of our training. I took the next two days off relaxing and recovering!
If you would like to volunteer, please visit http://www.extrahands.org/1_signup.asp. We realize some ALS families may be reluctant to participate but consider this:
- Even with my good fortune of a slow progression many things have fallen off our priority list of taking care of the house and many other projects.
- Simply allowing people to help is a gift to those that feel helpless in your fight against ALS. Let them feel like they can do something to battle it with you.
- By allowing these students to help you are empowering them to become compassionate and responsible future leaders and ALS advocates that we need to further the awareness for this hideous disease.
We intend to have student and adult mentor volunteers as well as ALS families across the Denver metro area as well as Fort Collins and Colorado Springs. For this to happen, we need your help to network this organization to all your contacts. Funding is also of great importance so we will be looking for private and corporate sponsorship of the Denver Extra Hands for ALS program. Thank you all in advance for your participation and support.
In the constant pursuit of our mission, we are thrilled to announce that the Denver area chapter of Extra Hands for ALS is now being created. Jennifer will be the Program Manager with me (Steven) as her trusty assistant. This is a multi-dimensional nonprofit organization primarily designed to assist families that are dealing with ALS. We are actively recruiting potential student volunteers, adult mentors and ALS families.
Two student volunteers, high school or college age will team up to assist an ALS family with various activities for two hours per week. Tasks could include mild house cleaning, repair and maintenance, dog walking, errands, etc. Simply reading to or conversing with an ALS patient can provide invigorating company and also give the caregiver a much needed break for personal time. Public ALS awareness programs are conducted once per semester that the students coordinate and/or participate in.
These volunteers will have an adult mentor to act as somewhat of a guidance counselor. The mentors will be responsible for following up with the students and families to address any questions or concerns either might have as the relationship develops. Mentors can also expand our ALS community by sharing their personal experiences with friends and coworkers, potentially recruiting more volunteers through these avenues.
Finally, we need ALS families that could benefit from some extra hands during the week. These families will be assisting the growth of our ALS community by exposing a new generation to what ALS is and how people cope with a devastating illness. These lessons have proven invaluable to the students participating in the other seven chapters of Extra Hands for ALS.
We encourage you to reference the Extra Hands for ALS website and watch the videos provided. Click here for the program overview giving more detailed descriptions of the Extra Hands for ALS mission and individual position responsibilities. The most commonly asked questions can be found here.
This organization will be a powerful addition to the ALS community here in Denver and we are inviting you to be part of it. Corporate sponsors are also encouraged. As part of our charter, funding is required to run the chapter and support our founding organization, the Jack Orchard ALS Foundation for ALS research.
We have tentatively scheduled an orientation and training for student volunteers and adult mentors on Saturday, November 12th, with the time to be determined. Please reply back as soon as possible as to your interest and availability. If you cannot attend the orientation, but are still interested or know someone that might be, please let us know!
Thank you, in advance for your support of our new venture. We can't wait to start sharing success stories.
On this website, we try to keep you updated on how we are doing and most importantly, living up to our life mission. Looking back, it seems we have been remiss to address the fourth point of that mission: Encourage people to responsibly plan for the future. This posting is especially important for the people that are not affected by ALS or any other life threatening illness. You see, once diagnosed, your alternatives for planning are limited due to the preexisting condition, a term well known in the insurance industry. That is not to say that this piece should be ignored by anyone battling illness.
Planning for the future can involve many things, i.e. estate planning, individual life insurance, supplemental disability insurance, living will, etc. Taking care of some or better yet, all of these things can lead to peace of mind with the simple fact that you and/or your family is taken care of to the best of your ability in the current time. Planning also reduces stress. We all know what stress can do to a healthy body, but one with ALS needs to eliminate as much of this toxin as possible. We were fortunate to have good counsel early in our marriage and are thankful to have acted on that advice.
That counsel came from Scott Sparks, a representative from Northwestern Mutual Financial Network (NWM). I was always pretty conservative and Jennifer was a great planner. It didn’t take long to be convinced for the need of individual life insurance policies to cover our mortgage as neither of our group insurance through work would be sufficient.
When we considered having children and 4 ½ years of infertility was endured, we realized Jennifer would stay home and raise Christopher when he was finally born. This meant losing a significant portion of income and the expense of a child would be added. Obviously, our life situation had changed and with the help of Scott, we adjusted. He made us realize that my income had to be protected at all costs and we finally let him look at my disability coverage through work. It was not enough, especially since it was based on just my salary and not my commissions earned. Because of the change in our finances, it was a very difficult decision to purchase supplemental disability, because of the cost. However, for the sake of our protecting our family, we committed.
When I was diagnosed, my doctor strongly recommended getting on disability immediately if financially feasible. After crunching the numbers, we decided we could make it, because the supplemental disability policy from NWM would pay for our mortgage payments. This assumed all the applications for disability would be approved. Our lifestyle is certainly not what it used to be, but is very satisfying all the same. I have been able to spend more time with family and friends in the last 4 ½ years than many people do in a lifetime. More importantly, Jennifer has been able to stay at home with us instead of having to go to work full-time to support us.
Having a doctor advise us to get our affairs in order was not pleasant, but the news was eased by the fact that we already had our estate planning done. This included our trusts, last will and testament, durable power of attorney, guardianship, living will, etc. It was hard to make all the decisions required in this process. They require conversations about somethig many are uncomfortable with…death. However, I remember how completely relieved I was with the fact that it was done. A sense of freedom prevailed. This feeling can be obtained even with illness present.
I believe that my peace of mind and lack of stressful influences are primary reasons for my ALS longevity. If you get nothing else from this posting, let it be that you at least find out what benefits you have in place and evaluate what effect they would have should the unthinkable happen. Also, if the Terry Shaivo case did not get you motivated to have your end of life wishes written down, then consider this posting a gentle shove to get it going. Take care of yourself and your family. Bring peace of mind into your life.
Even though we have not written about it, our activity with the fourth point of our mission has actually been quite active. We appeared as NWM’s 2003 Annual Report cover profile. This has lead to many speaking engagements at various sales branches and even their 2004 Annual Meeting in front of 8,000 people. We want to keep the representatives motivated about life and disability insurance. You would think that wouldn’t be a problem since that is the business they are in, but they are also financial planners. It helps them to have a story of how their core services are affecting a real situation. Our objective is to have them educate their clients like Scott did for us with the same amount of conviction. It also doesn’t hurt that they are spreading awareness for ALS as well…the first point of our mission.
This process is not limited to NWM. We are not being compensated by them to post this article. Contact your own insurance agent if you are already working with someone. If not, contact Scott or our great friends at The Allenbrook Agency from Farmers Insurance.
I wanted to write one final note on the Tri-State Trek. As of last count we reached $4,454 in Team Bishop contributions for ALSTDF and support for our incredible riders. This ended up being 44% of our $10,000 goal. I guess that is just a number that is prevalent in our life! That goal was simply a nice round number to shoot for and please know we are thrilled to cover our dedicated riders commitments and exceed that by over $1,000 in this first year of our fundraising for this event.
Jennifer has vowed to do this ride next year and she has been very dedicated since August working out on our Nordic Track. She is looking forward to taking a spin class soon as well.
Please take a look at the following email we received from event coordinator Mat Mandel in regards to summarizing this years efforts and looking forward to next year:
Good morning!
On-line registration for the 2006 Tri-State Trek is now open! We’ve already begun receiving paper registration forms, and are well beyond where we were this time last
year! Thanks to the folks at active.com, on-line registration is available to both Crew and
Riders.
As of now, reg fees for the 2006 event will remain what they were last year ($125 for Riders and free for Crew). However, after November 25, these will increase to $150
for Riders and $35 for Crew. Why? We’ve spoken to our friends at UConn and have secured air conditioned dorms! Because we don’t fundraise for air conditioning, we
need to pass these costs along to continue to ensure that as much money as possible is returned to the ALS TDF. Next year’s fundraising commitment will remain $1650.
Though not all 2005 fundraising has been collected, we are able to project that we will bring in almost $92,000 in participant fundraising. This, along with about
$18,000 in sponsorship income and registration fees will bring the total funds generated for 2005 to over $109,000! So now you have an idea of what kind of growth we’ve
seen, two years ago (our first year) that number was $41,000. Not too bad!
Finally, here are some more great pictures of this year’s event sent in by Craig Roth. Click on Tri-State Trek Photo Gallery. Then click on “Slideshow” at the top of the page for best viewing.
See you all soon!
Mat
We would love to go back to Boston with a much larger contingent of riders next year. We know a lot of you reading this are avid bicyclists. This is an incredibly well run and beautiful ride. Don't hesitate to register early under Team Bishop!
All of Team Bishop consisting of Todd Morin, Ty Ricker, Jennifer and myself want to express our overwhelming gratitude to everyone that contributed financially and in spirit. You are our inspiration to continue our fight and maintain our positive attitude. Thank you so much for your generosity!
It has been quite a while since we have posted anything because life has been a little hectic around here. Let me catch you up on the most recent happenings.
Jennifer's father, Bob, had a lung transplant about 5 1/2 years ago. He and Jennifer's mom, Bettie, live in Las Vegas. They return to Denver, where the transplant was performed, for checkups every 6 months. This was supposed to be a routine visit.
It turns out, Bob has been in chronic rejection since sometime in 2003. This means that his lung volume capacity has been steadily decreasing as his body slowly rejects the new lung. Drug therapy was recommended to stabilize the rejection. This involved a 5 day stay in the hospital and then two more weeks to recover. Jennifer's parents stayed with us during this time. Another test was done to see if the proceedure was successful. Thank God it was and Bob and Bettie were able to return to their home in Las Vegas. He is doing well considering he is at 38% lung volume capacity and that is an improvement from where he was.
During this time, Jennifer has been able to reconnect with her brother, John, after 6 years of no communication. A lot has changed for both of them since then and they have found much in common. Faith, being at the top of the list. A great story all around.
Last weekend we attended a wedding in Goodland, KS where Jennifer was the Matron of Honor and Christopher was the Ring Bearer. Congratulations to Bryan and Misti as they head on their honeymoon today.
Three hours is a long time in a car for me, but I used the air cushion from my electric wheelchair to ease the ride. These type of events are getting more taxing on me as it is difficult to sit or stand for long periods of time without the ability to lay down and rest. At the reception, Jennifer was up at the head table and Christopher and I had sat at another table. We had a great time. We talked about how to introduce himself to a girl, whether he was going to dance, etc. As usual it was all worth it, but I did skip out early on the reception as my body was exhausted. I left about 7:30. Jennifer and Christopher stayed after 10:00. Christopher had so much fun dancing and "performing," I really wish I could have stayed to see it. During our dinner conversation, we noticed a very cute girl to which Christopher referred to as a "hotty". He thought she was probably about 9 years old and as it turned out he was absolutely correct. Her name is Mackenzie and she was a junior bridesmaid. They danced most of the night. He also had some great conversation with a girl named Alex. I'm so proud of him.
Christopher has started in Colorado Children's Chorale, Prep Choir. The Tour Choir with kids 11 to 14 years of age travel internationally, alla Vienna Boys Choir. It was a privilege to be chosen to participate as he had to audition without us present with the song "America the Beautiful." He said he only used two of his voices to sing the song. They were looking for voice range and personality. Jennifer and I knew he had the personality covered! Over 300 kids auditioned with only about 100 selected. Way to go Christopher. His first performance will be at the Ellie Caulkins Opera House in Denver on December 4th, entitled "Christmas with the Childrens Chorale." Please visit www.childrenschorale.org for dates and tickets if interested. I know he would be thrilled to have an entourage.
Tonight, I am heading to the Bronco game against Kansas City with one of my great friends and fraternity brother, Keith. It's been a long time since I've been to a game so it's a bonus that it is Monday Night Football, against KC and with wonderful company.
There about ten other titles I have going for postings mostly about past events and I hope to get them out shortly. Please know that we appreciate your support and thank you so much for taking the time to read these postings and the many replies we receive. They are so encouraging and keep us motivated!
Jennifer and I were pleasantly surprised, once again, by the willingness of KUSA-TV 9News reporter, Dr. Steph Clements to cover my surgery as an ALS human interest story. It is amazing how things work out. A friend of ours that we met when we were on the Parade Magazine cover in 2003, Jacque Montgomery, is the Media Relations Coordinator for Kaiser Permanente. We recently had breakfast with her and mentioned the LASIK surgery and how it came about. She mentioned that Dr. Clements was looking to do an ALS story and this might fit in. She pitched it and Dr. Clements commented that she couldn’t imagine the 9News directors not going for it.
At about 1:15pm on Friday, September 3, 2005 I checked in for my surgery, accompanied by Jennifer and Christopher. Our boy had the day off from school anyway and thought it might be cool to see Dad’s eye surgery. I was given a sticker that included my name, type of LASIK procedure and the code signifying both eyes were to be done. Shortly thereafter, Dr. Clements and her Photo Journalist, Dave Delozier joined us as well as Dr. Jimmy Jackson, my Ophthalmologist, Dr. Hans Kell and his wonderful wife, Dr. Jennifer Tasca-Kell. Introductions were made and a microphone was placed on my shirt. Dr. Clements mentioned that she really didn’t want to disrupt anything so the pre-op process began.
At Insight LASIK they are extremely kind, comforting and thorough. Dave Delozier started filming. I was asked to sit in a waiting area where I was given a sanitary cap and booties, administered dilating drops and consulted on the LASIK procedure, by Dr. Jimmy Jackson. He even put a sticky star on my head as a redundancy, signifying what type of surgery and that both eyes were to be done. There was not one detail missed as he explained what I would see, hear, feel and smell during the operation. I thought they must be going a little overboard with the explanations since the TV crew was there, but I couldn’t have been more wrong. While waiting for my eyes to dilate, Dr. Clements asked questions about what this surgery would mean to me, how I was feeling, etc. She was very outgoing, friendly and easy to talk to.
Dr. Keith Miller escorted me to an exam room where he placed dots on my eyes for surgery purposes and looked in both eyes for anything they might have missed. He then guided me to room I had been to the Wednesday prior for my initial exam and he mapped the shape of my cornea. I was getting a procedure they call CustomCornea, where they take into account any irregularities of the cornea and throw that in with the programming of my prescription.
I then went into an exam room, one last time to visit with the surgeon, Dr. Jim Montgomery. The standard instruments were used to look into my eyes to make sure everything was in order. He calmly asked if I had any further questions, which I did not, and we proceeded to the operating room.
I lay on the table and was asked if I wanted a blanket. I had also been handed a small squish ball to squeeze during anxious moments. I was really not nervous at all and couldn’t wait to get started! The LADARVision machine hung overhead where I watched a red blinking dot. I had also seen this before with my initial exam.
Dr. Montgomery taped my eyelids open on my right eye and then inserted an instrument to widen it further. This was probably the most uncomfortable part. The computer spoke my name other pertinent information unique to me to make sure they were doing the right procedure on the correct person. Just another redundancy that is in place that makes you feel comfortable. The laser that is used also tracks the eye at about 4000 times per minute to anticipate any possible movement of the eye.
He then placed a vacuum over my cornea to pick up any possible contaminants. My vision went dark, as previously explained as I saw and felt something placed on my eye and glide over. I realized this was the creation of the flap. In a haze I saw the flap being pulled over. Did I mention they had applied numbing drops to my eyes? Anyway, the laser then went into action and the computer stated the percentage of completion and time remaining for actually etching in the prescription. The odor of burnt hair permeated my nostrils as Dr. Jackson had foretold, which was the release of gases when the laser made contact with the cornea. My eye was irrigated and then I could see the flap being replaced and smoothed until seamless. The great thing was being able to focus on this red blinking light the whole time. I figured if I could see the blinking light, everything was going as planned! The instrument holding my eyes wide open was removed as was the tape holding my eye lids. Everything was repeated exactly for the left eye.
I have to tell you, I really enjoyed experiencing the surgery because of the great job Dr. Jackson did of setting my expectations. There were no surprises and I remained perfectly calm. It was fascinating to know exactly what they were doing, when and why. It allowed me to concentrate on all the sensations during the procedure without worry.
After the left eye was complete I was guided to the other side of the waiting area to lay back with my eyes closed and just recover for about thirty minutes. During this time there were 2 or 3 other people waiting to go into surgery and getting the exact same explanation of events to come that I had received. It was then I realized there was no ‘show’ for the TV crew when I was getting my pre-op consultation. These guys are really have their checks and balances for safety purposes and want to set your expectations appropriately so there are no surprises. I was out the door before 3:30pm. They are just fantastic!
Post-op continued with a three sets of drops with directions to take home. I also received a pair of goggles so if I got the urge to rub my eyes, I would hit the goggles as a reminder not to. I was not really supposed to open my eyes for about 4 hours. On the way home, about a twenty minute drive, there was a bit of a burning sensation, but keeping my eyes closed helped. I proceeded straight to bed for about a 4 hour nap. I awoke with my eyes feeling just great and my vision just a touch blurry on the edges.
My post-op appointment with Dr. Kell, my Ophthalmologist, was scheduled for 9:15 the next morning. After looking at my eyes with the appropriate equipment, he determined the surgery aspect was “pristine.” Then on to the eye chart…drum roll please…20-15 vision after just 18 hours!!! I am absolutely thrilled with the results. I just glanced at my computer time when I wrote that last sentence and it is 4:44 (Search under 40th birthday for relevance.) I was praying for better than 20-20 results. As of today, I am on the last day of post-op drops and will continue with wetting drops only as necessary.
As for 9News airing the story, Dr. Clements was scheduled to be at our house on Labor Day, for a follow up on the results. However, she was reassigned to cover the Hurricane Katrina victim relocation to Lowry Air Base. I certainly don’t think we can complain about that. They definitely will be airing the LASIK story with the follow up, but probably not until October. Be certain that we will let everyone know as soon as we do when that will be happening.
At this point, I just need to recognize some very special people and hope you might patronize them. I don’t think they get any better. First and foremost, thank you Dr. Hans Kell from Front Range Eye Health Clinic for just thinking to ask if it could be done and all the pre and post-op work. Next, thank you to Dr’s Jim Montgomery, Jimmy Jackson and Keith Miller at InsightLASIK for opening your incredible facility to us in such a generous manner. Your staff are fantastic and you all are a tightly run ship. Thank you to my Jennifer and Dr. Jennifer Tasca-Kell for having the initial conversation about putting contacts in for me and giving Dr. Kell the idea. Finally, thank you to Dr. Steph Clement and our friend Jacque Montgomery for making this story public.
Dr. Clement said we are due for some good news and this is certainly one of those stories. This surgery can help an incredible amount of people with ALS, Parkinson’s, Arthritis, etc. It was painless and with these top notch doctors working on me, absolutely worry-free. If your contacts or glasses are hindering your quality of life do not be afraid to pursue this treatment. I caught myself last night thinking I should get up and take my contacts out and didn’t have to. I also found myself looking for my glasses this morning realizing they were not needed. Yesterday morning, while still in bed, I saw Christopher washing his hands in our bathroom. I just enjoyed watching him as he tends to get distracted and was looking at all the things by my sink. I couldn’t see that stuff clearly before. I will absolutely not miss the contact rituals I explained in my previous posting about this surgery. Maybe I will have more endurance to type and get more articles out. Yikes, is that good or bad?!!
I’m getting LASIC eye surgery today. I’ve been wearing contacts for over 10 years. The surgery got scheduled in such an incredible way that I felt I had to share it with you all.
In the last year or two, the dexterity in my right hand, among other things, has been deteriorating. This makes it more difficult to do the things necessary to maintain contact lenses. A lot of details follow, but bear with me as they are important to the overall posting.
My mornings start with having to be awake long enough to where my eyes are not combative to the idea of having my finger touching them. I take the right lens from its container and place it in my left palm. I apply saline solution and rub one side, turn it over and rub the other side to remove any deposits the solution might have loosened overnight all with my right index finger. I turn the lens over one last time for a final rinse. Carefully I place the lens on my right index finger, use my right middle finger to pull the bottom of my eye open and my left hand to keep the upper eye open. I extend my index finger, with the contact lens to the point of it touching my eye. When the cool sensation of the saline and my eye meet, I know the contact is in securely. I repeat the procedure with my left contact. At night, it is much simpler as I reverse the procedure without the rubbing and just place the lens in the container. Anyone who wears contacts may take these actions for granted.
Why did I go into such detail about stupid contact lenses? I guess it must be understood that my first symptom of ALS was fatigue and weakening of my right index finger. From the description above, you can tell how much I use that finger for contact lenses. The theatrics involved in putting my contacts in and taking them out prove very fatiguing. I could probably figure out a different way or would have in the long run, but I didn’t have to thanks to a whole train of people and events.
We have some friends, Dr.’s Hans Kell (Hans) and Jennifer Tasca-Kell (Jen), who are Ophthalmologists and have a practice in Louisville called Front Range Eye Health Center. Jennifer had an appointment with Jen for new contacts. She asked if Jen could teach her how to take out and insert lenses for me. Jennifer explained the difficulties I was experiencing and that they were not expected to improve but rather worsen dramatically over time.
That was about 2 or 3 months ago. I received an email from Hans on August 19th, 2005. It basically said that he had approached some friends at Insight LASIK to see if they would be willing to perform the LASIK procedure pro bono, as he was willing to do the pre and post operative management at no cost. One of the doctors at Insight LASIK, Jimmy Jackson, was very thorough and even emailed colleagues to see if there would be any concerns over doing LASIK on an ALS patient. He discovered there were none and noted the obvious quality of life benefit that Hans had previously mentioned to him. Dr.’s Keith Miller and Jim Montgomery (the actual eye surgeon) also agreed. The email stated their willingness and generosity to go through with it all. I read the email at least three times to see if it really said what I thought it did! Hans told me that we can make this all happen if I wanted…Duh!
As I am writing, I find myself very emotional over this again because the biggest magic of all of this was the simple act of Hans even thinking about approaching the generous and thoughtful people at Insight LASIK. It didn’t matter what the answer turned out to be, just the thought. You are a class act, my friend. Hans had the surgery himself not long ago with this group. Being an Ophthalmologist himself, this told me a lot about how fantastic these doctors are.
The adventure begins at 1:30 and I will be doing a follow up posting to let you know how it goes. I am very excited and not nervous at all. I know how it will benefit me, but I think of Jennifer not having to work with my contacts on top of all the other wonderful things she does for me and I am thrilled for both of us. Thank you to everyone mentioned above for their time and generosity and I will SEE you all on the other side.
In conjuction with the Jerry Lewis MDA Labor Day Telethon, Parade Magazine publishes a story relating to Muscular Dytrophy. Jennifer and I were honored to be on the cover in 2003. ALS is one of the 43 neuromuscular diseases MDA services.
We were contacted a few weeks ago about doing a follow-up from previous covers. They asked for pictures and interviewed us. We have no idea what to expect, but please make sure you get the Parade Magazine in this Sunday's newspaper, September 4, 2005.
The Telethon airs on KWGN Channel 2 in Denver starting this Sunday at 10pm. Go to http://www.mdausa.org/telethon/TVStationListings.pdf to find your station and times if you are not local. They are accepting pledges for Hurricane Katrina relief as well in the first and last 4 hours. Please take the time and donate to both of these worthy causes if you can. It feels so wonderful to give something...anything. Thank you.
It's been over a month since this incredible event. I still think about it each day. I wanted to share with all of you some of my thoughts about the bike ride, Steven and Jennifer, and what lies ahead. This is likely the last entry about the Tri-State Trek so please take a moment to read below.
I consider myself very lucky. Lucky to have two healthy children, a wonderful and beautiful wife, and good health (so far). The Tri-State Trek made me truly appreciate what I have in life.
I have been a cyclist for over 20 years now with a stint of competitive racing while in college. In the early 90's quickly realized I didn't have the "genes" to be the next Greg Lemond (Lance wasn't around yet) so I just became the occasional rec rider. 13 years and 50 pounds later I said "You know, I better get back in shape." I lost 40 pounds when I got serious on the bike again; that was 2003.
My wife Jodee and I have known The Bishops for almost two years now and have become very close. Our daughter Anna and Christopher Bishop are the best of friends. We have been through a lot with Steven and Jennifer and consider them family. When Steven introduced me to this year's Tri-State Trek I was a little apprehensive about riding it because of the oppressive heat and humidity of the Northeast in July. But since I started biking again and had been putting miles under my belt, in late May I finally decided to support Steven's quest for a cure. I started riding hardcore in the heat to prepare myself for this grueling event. I hoped it would pay off.
When you ride a long distance on a bike you have tremendous time to think. You have yourself, the road, and the sounds of the surroundings. What I thought about a lot during those three days was my good friend Steven Bishop, his family and my family. I so much wished he was there to experience the ride with all of us.
Nikki Whittle who I rode with for a majority of the event had bike jerseys for each day made up with a picture on the back of her best friend who recently passed away from the effect of ALS. Her friend passed away in March. That same day Nikki committed herself to do the Tri-State Trek. Every time Nikki was riding in front of me I saw the face of her good friend. I memorized that picture.
At one point on Sunday when it was raining sideways and the hills kept going up and up and my crotch was so sore from my shorts being so wet, I wanted to give up. The signs were horrible (see Ty’s blog), I got off track twice and I almost crashed twice. I was mad and DONE! But I kept looking at that face on the back on Nikki’s jersey and realized how lucky I was that I could push these pedals, breathe with my own lungs, and force myself over the hills. When you think about things like that the hills get a little easier, the crotch doesn’t hurt as bad, and suddenly you have new energy. I kept thinking about my wife Jodee, my kids and how much I loved them. The fact that I could hug my kids, kiss my wife, carry my son, and just be. I also thought about the day to day pressures of life that take a toll on all of us; We fight, there is never enough time, the kids are screaming, etc. You get the picture. Then I would think all of that has no weight to losing the one you love to a horrible disease like ALS.
On Sunday afternoon after the ride was done and we finally made it to Pace University, it was overwhelming. Nikki, who to me was this stoic and hard-edged person, just broke down and cried. All her pain, all of her riding, all of her training, she did for her friend. What a wonderful accomplishment.
I did this ride for my good friend Steven. All the pain, all the riding, and all of the training was for him. I cried too.
I did it so I NEVER have to put his picture on the back of my jersey.
I thank all of you who supported me through donations and emotional support. I especially want to thank my wife Jodee, for giving me the opportunity to do this trek for our friend Jennifer and Steven. Jodee had her own challenge keeping our two children at bay!
For those of you reading this for the first time and have not donated, we still have time. Help me. Make a donation so I never have to put Steven's picture on my jersey. Help to stop this horrible disease. Help my friend Steven.
Steven, thanks for the inspiration.
Thanks for reading,
Todd Morin #77
P.S. Click "Online Pledge" at the top of this page to make a donation.
Steven has asked that I create a posting on his website about my experience during the Tri-State Trek. Please take the time and read my comments. I think they are important because they are not about me as much as they are about those that need your help!
I thought I would share with you some of the remarkable feelings that I had on the third and final day of the 270 mile event. This was after riding more than 11 hours the first day and about 10 hours the second day. On the second day I suffered near heat exhaustion and also crashed crossing a railroad track! However I must say that I really did not "feel" the significance of what I was doing until day three. I hope you enjoy this posting. Please click on the link at the bottom of this posting to make a comment. If you are reading this by email, please follow the link at the bottom and then come to the website!
Posting - Day Three Tri-State Trek by Ty Ricker
After more than 180 miles already accomplished in the first two days and after a great night's sleep, although I was still very sore from the rail road accident, I was ready for the final day! At about 5:55AM I checked out of the dorm room we stayed in - great room, private shower and air conditioning! To my surprise the group I had been with the first two days decided to get an even earlier start. I decided that it was actually a really good thing as I had not spent really anytime by myself for the first two days.
It was a very cloudy morning and talk was that it was going to rain most of the day. As I started off on this last day - the third and final 90 miles, I started thinking a hundred different thoughts. One of the first thoughts was why did it seem so hard to get any speed today? I was having a tough time and right away there was a huge long uphill climb. One of the tricks I came up with the previous two days was to just look a short distance ahead. If you don't look up the hill and try to figure out how much more to go, it seems so much easier. I just kept looking straight ahead about 10-15 feet and focused on some small rock, twig, broken piece of glass or whatever. Every time things got hard, I had to go back to WHY was I doing this – to support ALS patients and to find a cure!
It also turned out that I was riding in this event to be close to incredible people, and to feel some pain of my own. So when there was pain, and there was... I just keep focusing on those things, and that short 10-15 feet to go. It was thinking about small distances and how in life, having just one small accomplishment after another is what often defines success. However every 10-15 feet I kept thinking more and more about the daily life of someone dying from ALS. I thought about the tremendous amount of things every day, that had to be so difficult for someone who was losing their strength, who had now already lost use of their hands, arms, legs, voice, etc. The more I thought how blessed I was to have the health that I have, the easier the push became!
Before I knew it I was on top of the first hill. I then decided to stop and look back. It was a moment that I wish I had a camera with me.
But back to this first hill… It was only about two miles into the day and between thinking about how hard this first hill was, the rain that was coming down... I discovered that my front tire was flat! I actually think now that looking back it was either extremely low or flat for all of the first two miles and the first "HUGE HILL".
The great thing about this event is that it is so well ran. I can't say enough about Dakota and Rick. These two guys worked non-stop on everyone's bikes. Not just the needed repairs, but also making sure each night they were tuned and safety checked. I had both of their cell numbers and left messages that already I needed their help with this flat tire repair. While waiting, most all of the other riders past me. Of course all of them offered to stop and help, but I told them that Dakota or Rick would be along soon enough.
While waiting it was more time to think about what was ahead of me. The rain was really coming down and I was wondering if this was the Hurricane Dennis rain that we all thought would be with us the first two days. It was not long before a van with several volunteers stopped by. They were headed to the first rest stop. They waited with me for a few minutes and then had to get going to the first stop for the first group to arrive.
Dakota showed up a few minutes later. I expected him to be in one of the support vehicles. He actually got on a bike and road the two or three miles with a broken wrist to
help me. Again it was raining pretty hard then! My thoughts moved from being concerned how far behind I was to how lucky I was that I was surrounded with some great support!
The whole day it was really thinking about the time alone, and looking forward to seeing others at the rest stops. I kept thinking about ALS patients that are alone often either physically or in their own thoughts. They must be thinking about their own pain, or who will soon hopefully visit, perhaps an upcoming doctor's appointment, of course the unknown, a support group meeting, or perhaps another funeral to attend. Time alone is hard, and caregivers perhaps don't know how special they really are. I pray that if you are a caregiver, a spouse, a family member, etc. that you don't misunderstand what I'm saying here. My three day experience is in NO WAY close to what I can only imagine you live each and every day.
After my flat tire was repaired I was looking forward to often what is the most enjoyable parts of the ride - the down hills. You really look forward to those down hill moments. I kept thinking about the ALS patient and I wondered what things could be compared to a down hill moment? My only guess is perhaps the feeling they get when someone has spent time with them, or the hope that what they are doing today is making a difference some how.
This particular downhill ride was different. Instead of pleasure, it was extremely steep and it was still raining hard. It was VERY slick and I was losing control. I actually went sideways twice traveling at way too fast of a speed for these conditions. I started to panic. I thought for certain I was going to fall again, and this time the crash may be the worst yet. After gaining control, and slowing down I was starting to feel better. My attention went back to this new emotion I just had. I was alone, and I just had a frightening experience and there was nobody around to share it. I worried about what if I did crash here, would anyone find me right away. I wondered if I would be able to finish what I had started.
My point is that I had only been riding about 5 miles now and I could not stop thinking about all these emotions in such a short amount of time. I kept thinking about Steven, Jack and Linda. They are really the only three ALS patients that I know that well, or have known now for sometime. I thought about them and I thought how they must feel some mornings, perhaps many mornings. Feeling like they wake up to a struggle, not knowing was on the other side of that hill that day. What is the worst, not knowing what is ahead of them.
I decided to stop and call my boys and my father. One the greatest comforts anyone can have when they are anxious about something, afraid of something is knowing that you have people you love and that love you. Just talking to them, telling them how much you love them and letting them know you care about them and want them to be happy is a wonderful and comforting thing. When you take focus off yourself, and put it on to others it makes not only them feel good, but you feel good. I think that is what I'm impressed with in knowing Steven. He does not spend much time at all talking about what hill he just climbed, what frightening experience he has just had. He puts focus on others, making others feel good. I'm sure he feels the same as I do, you feel better when you focus on others!
So the next experience which I want to share with you is about not only not knowing what is ahead, but the emotions you have when you are not sure you are even on the right path. I shared this with the event director Mat. Again Mat is an incredible person. The first two days the course were marked perfect. Every 50-100 feet you would see a red arrow. If you were coming up on a turn, you knew way ahead and it was clearly marked. The people involved the first two days of marking the course and taking down the thousands of arrows did an amazing job.
The third day was a bit different. The arrows often were no where to be seen. I don't mean they did not mark the course, it was just that in the previous two days you always had an arrow in your vision. It was a great comfort to know you were on the right track at all times, not just some of the time.
Now I caught myself constantly wondering did I do something wrong? Did I take a wrong turn? The confusion started to turn into something different. It turned into anxiety. The anxiety turned into fear, and then worst it turned into anger. I was getting angry.
When I stopped putting the focus on me and my troubles, I could only once again think about why I was doing this, and who this ride was really for. I really can't imagine the confusion, anxiety, fear and anger that goes on when you are living and dying of ALS. Early on I'm certain there are clearly marked paths for the ALS patient. Things to look for that most all with ALS experience. Things that you must do in order to live with this disease. As you get beyond most all of the knowns, you are then faced to struggle with the unknowns.
I think often about one of Steven's quotes: "The best advice we every got was to stay one step ahead of this disease." This is exactly what I'm talking about... IF you are lucky to know what is next, you can clearly see the signs pointing you in the right direction, then you can eliminate some of the confusion, anxiety, fear and possible anger. I started thinking about how after 3 or 4 months with all the reading I have done online about ALS, that I can only PRAY that the course gets better marked for all of those that get this horrific disease. Every 90 minutes another person is lost and dies. Every 90 minutes another person starts this journey. In just the three days I was involved in this ride, 24 people died – just in the United States. Since I did this ride, – more than 500 more have died and more than 500 more have learned that most will die in the next 2-5 years unless we find a cure!
By the time I made it into the first rest stop I was the last person for the day to get there. I started feeling bad that I was holding up these volunteers. Often you hear a person with ALS feeling bad they are holding up others lives. However right then it occurred to me that even though I was really sore, already very tired early in the day, was hot, soaking wet, and an emotional wreck after thinking about that was happening that I was actually doing incredible!
I was not someone that could no longer use their hands. Someone that could not any longer use their arms. Someone that could not any longer walk or talk. I did not need to be on a feeding tube or a ventilator to survive. How could I feel at this moment anything but blessed and lucky to be who I was, and ABLE to help others!
Mat heard me talking about this and he asked his brother to get his bike down off his car. He wanted to ride with me. It was great being able to ride with Mat and talk for a good amount of time. I was able to further explain how I was feeling, and more important share what I can only imagine someone with ALS is feeling or has felt at sometime in regards to the confusion. We talked about his event – this being the third one. How impressed I was with all of the work that went into something like this. We also discussed how I'm going to record a 30 minute audio interview with Mat soon and share with everyone as much as possible about all of the work that goes into this event, but more important how others can help!
Before I knew it I was at the second rest stop. I was still the last person because of the flat tire and also stopping to make calls. Once again it was great to have the encouragement of applause as you rode into a stop. It was that way every time, and the volunteers need to know how wonderful that feels!
The next saga of this day came when I left rest stop number two. Being the last on the course, the markers were being taken down right behind me. The signs for this rest stop were down when I left and I guess the arrows pointing to go left were also gone.
I looked left, looked right and saw two riders up on top of a huge hill to my right. I came into this stop making a right, so it only made sense at the time to go right and not back track the course to get to stop number three. I was wrong! That huge hill to my right was a killer and then I was excited with the thought of being able to coast down the hill. Coasting down the hill turned from pleasure into the same as before: confusion, frustration, anxiety, fear and anger. I was now not only last, but perhaps a mile or two mile in the wrong direction! This time my cell phone had no service. After maybe 15 minutes or so I was back on course, and although the volunteers had cleaned up and left the last rest stop, thankfully the red arrows appeared again. Rick is the last one behind all riders making sure everyone is okay. He was also confused because he did not find me.
More frustration, more emotions, more heat and more rain!!! Good news is that the crew that was picking up the arrows caught up to me again. They assured me they would give me 10 minutes or so and then start picking up arrows again. They placed calls on their cell phone and shortly after I was greeted by others that were out there looking for me!
When I made it to the third rest stop, Craig and Kevin were waiting for me. These guys I talked about in my previous posts on my website, but I again can't thank them enough. We talked about the fact that others were now hours ahead of us. But now having someone to be with, knowing that if I had a problem they would be there gave me new strength. We still had about 35 miles or more to go at this point. Oh, I forgot to mention that today there was no planned lunch as we were to be at a point around 2:30PM for all of us to ride into together with a police escort. And at the finish there would be a great deal of food, etc.
So I made sure I had plenty of fluids and packed a bunch of power bars with me. We took off pushing it hard. I learned the art of "drafting" behind another rider. This is getting as close as possible to someone in front of you, and this allows you to be able to rest a bit as their energy actually pulls you forward. It was another incredible feeling, thought and emotion about the importance of having someone close to you when you are battling something. The caregivers I know, are those kind of people that stay close, work hard for those that they love, and help pull them through the difficult moments.
When we made it to the fourth rest stop, we found out we were only a few minutes behind another group. We continued to ride extremely hard and make up for the lost time. Seemed that even though my body should not have been able to move, just knowing what was ahead and having others close to me kept pulling me forward. My anxiety, fear and anger disappeared. I was now focused on and thinking about what was to come next.
Going back to NOT hurting someone's feelings who has experienced far more pain than what I’m discussing here, and not just for a few days, but for months or years... I don't want to make anyone feel like I could possibly know what you or your loved one felt or now feels. I can only now share with you what I was personally feeling during this event. I do feel that one important thing in getting through a difficult and painful period is knowing that you are not alone, that there are others that feel the way you do. If you are blessed to have someone close to you that cares – be thankful.
Just a few miles from White Plains the entire group was there waiting for us. We were then all were escorted by the White Plains police department down the freeway into the finish area. There was a tremendous amount of people waiting for all of us to come in, and the applause once again made all the effort feel so wonderful. Best for me was the hugs, and the incredible conversations that followed. We all were able to shower and then listened to a number of people speak. The speakers remarks brought back to focus what ALS is and how we MUST all help to find a cure. The research at ALSTDF and events like this one are making a difference in people's lives. With more events like this, there will be a cure someday!
I'm still getting reports from Mat and Dori on those of you that made these pledges. I really want to thank you so much for your support to ALSTDF and to me personally. I can assure you that after personally visiting the research lab, personally meeting several key people there, that your money is being put to good use, and we ARE on the right path!
This was a very special day for me. Since being diagnosed, I always hope to be part of as many of Christopher’s monumental events as possible, so that it will stick in his memory of me. Jennifer and I bought Christopher a bike with training wheels and did our best to encourage him to ride two summers ago. He was not that enthusiastic about it, but proceeded to humor us. Some progress was made until a quick turn of the handle bars resulted in Christopher being pinned under the bike. That was it for bike riding that summer as that experience did not want to be repeated for him.
Last summer, we encouraged him to try again. We explained that other children were starting to ride their bikes and they might want him to come along. He really did great with the training wheels for while, so much so that we did a complete lap around the block with no incident. On his own initiative, he decided to take a lap with his friend and neighbor Zac. Uphill from our house was no problem and then around the block. We waited patiently…until Zac came around the other corner notifying us that Christopher crashed. Apparently he got caught up in a race he was having with Zac that he forgot how to brake. I was so mad at myself for not following him as I knew his confidence was fragile. He was banged up and unfortunately not ready to climb back on the horse for the rest of that summer. Riding a bike is something we could not make him do. He had to decide for himself when he was ready.
Midway into this summer our dear friend, Annette, let us borrow a tape called Pedal Magic. Her son, Austin, had used it to learn how to ride a bike. Once again we encouraged Christopher to try and explained that Austin learned how to ride easily with the help of the video. Jennifer, Christopher and I all watched intently. It seemed so simple. The lesson included a portion on unlearning how to ride with training wheels, as there can be some bad habits and dependencies using them. Since there was not enough experience with them in the first place, I proceeded to remove them from his bike immediately and start from scratch.
We started some balancing exercises where Christopher would just sit on the bike with me holding the seat. The premise of the lesson was for me to tilt the bike and get him to react instinctively to turn the steering wheel in the direction of the tilt to correct the balance.
Traveling interfered with further lessons, but has since been concluded. The other day, Zac and some of the other neighbor kids rang the doorbell and asked if Christopher would like to ride bikes with them. Without hesitation, he went to get his sneakers and give it a try. The bike is small for him, but allows him to comfortably use both feet to steady himself. I walked along with him as he endured the trials and tribulations of trying to gain his balance. It was kind of like watching him learn how to walk again, that feeling of him learning something new.
Yesterday was very productive as he was able to peddle and balance for a good 20 feet by himself. He got going a little too fast and his feet came to the ground to slow him, but you should have seen his face! “Oh my gosh, I can’t believe I just did that!” I was so proud of him and asked him how it felt. He said it was great as he just experienced the potential of what it was to ride a bike. Christopher had cut up the back of his ankles with the bolts from the back axle on push offs and was now ready to take a break and get those fixed. We had ice cream to celebrate and settled in to watch a movie with popcorn as we glowed in the success.
Today, the breakthrough was complete. I tried to give him a little push to get started and he said he did better by himself. It was true. After a couple shaky runs up and down the street with legs dropping down for balance every other pedal rotation, he just took off. He turned the corner and disappeared for a minute or two and then came storming back. When he got to where I was standing, he said he fell over but it was no big deal, clearing the way for future falls and knowing he will get right back on the bike.
As each summer went by and the bike was of no interest, I got more frustrated. You see, I was worried I was not going to be able to teach him how to ride a bike…and that was my responsibility as his Dad. I didn’t want to let him down. I didn’t know if I would still be able to walk the next summer or reach out to steady him even if I was in a wheelchair. I needed him to have that memory of me teaching him how to ride a bike. He has to get some practice in to fine tune the details, but we did it! Everybody learns things in their own time. I’m just extremely grateful that Christopher learning to ride a bike was during my time. This was one of those minor things in life that many may take for granted, but I will never forget the day my son officially learned how to ride a bike and I hope he doesn’t either. I am so proud of you, Bug.
It’s been quite a while since I have written anything for our postings. I’ve been in a bit of a quandary lately, I guess. Part of it is survivor’s guilt from all my fellow PALS whose funerals I have been attending. Part of it is since we had this expectation of me dying set within 2 to 5 years of diagnosis from the doctors; I am kind of outliving my retirement. In essence wondering, 'Now what?' Part of it is feeling progression in areas I can specifically identify such as fatigue, weakness and pain in my right arm and shoulder. Before, it was more generalized. This caused me to reconfigure my office and get a new mouse from the ALS Association.
Another part is what Jennifer touched on in her last posting. She mentioned the feeling of abandoning the Tri-State Trek and most importantly our riders from Team Bishop, Todd Morin and Ty Ricker. The difference for me was that I was not going back to Denver for something I was excited for. I was happy to do it to support Jennifer and all her efforts heading the committee for her reunion. Still, I felt empty because of leaving the Tri-State Trek, again. When Todd and Ty called to give updates, it was really great to hear from them, however, I felt emotionally distant from them. I just couldn’t relate to what they were going through.
Ty helped by explaining that he felt extreme pain and fatigue throughout the event and started to realize that many PALS feel these symptoms chronically. He thought of me and other PALS frequently on the ride and wanted me to describe some of what I feel daily.
It is difficult to explain, even to Jennifer, but she can see a lot of it. Mornings are probably the worst because my medications have worn off from the night before. I have aches all over and feel like arthritis has entered my hands, hips and knees. Jennifer is so kind to bring me my meds and let me stay in bed until they take effect along with a fresh cup of coffee. My pains vary throughout the day depending on activity. Simply shaving or drying my hair starts with my right arm fully extended, but by the time I’m done my shoulder has collapsed from fatigue and I am hunched over the sink just to finish. Jennifer pointed that out to me. I just seemed to modify my behavior without realizing it.
My biggest problem is that I still have the initial strength to do many things, but my muscles fatigue quickly. I don’t know when to stop so I often over do it. My recovery time is much longer than most people, if I recover completely at all. Aching joints, cramping and twitching muscles are all day occurrences. Ty simply could not imagine going through these feelings everyday. The fact that he knew he would heal and recover increased his motivation and stamina to finish each day.
It was not until we had a small impromptu party to celebrate their ride and some of the people who supported them emotionally and financially, when I finally started to relate.
Todd and Ty shared stories and pictures of their experience and finally seeing their emotion and enthusiasm is what did it.
This is where all of you come in. I wanted you all to know what these guys went through to support Jennifer and me. We will be posting some pictures of the ride on our site, but more importantly, Todd and Ty will be chronicling their adventure as guest authors on this site in future posts. We are in desperate need for financial support of their efforts, so please don’t wait for their postings to contribute. Our goal is $10,000 for Team Bishop and we have not done a good enough job getting information out to you, our readers, to motivate you. Please remember these two riders paid their own way to get there and then were responsible for $1650 dollars in pledges. We are not even up to the $3300 minimum needed for the team. We have additional time after the event to collect pledges. Any amount will help. Thank you to all that have already given generously and also to anyone else who can help support these rider’s efforts and ALS research.
All you need to do is click on the following hyperlink to download the sponsor page .pdf and mail in your check or credit card information directly or fax just the credit card info and page to (860)-656-7197. You can also just click the Online Pledge button on the menu bar of our site. This gives you the option to do an online credit card payment that goes directly into our account and we will write one check to the Tri-State Trek. If you require a receipt for this transaction for tax purposes, let us know in the notes section and we will have them send you a receipt directly.
After several hours of taking in the sights of Boston, Ty and I were following Steven (I know…funny… who’s the one with ALS?) lollygagging and Steven went across a busy intersection. I was next to cross and just stepped out in the street and thanks to Ty who grabbed me a car just missed hitting me. Thank God for Ty being there and I know I had other angels watching out for me. After our hearts stopped pounding and returned to normal we headed off to see a few more sights. Just before lunch we got the call from Jodee Morin (Todd’s wife) that Todd made it in to Boston. I called Todd on the cell and welcomed him to Boston. We had another great day the only downside was that Steven’s shoulders are getting so weak that just walking around fatigue and tire his shoulders to the point of complete exhaustion. So we all headed for the hotel and Steven took a rest.
Ty and I set out for the bar. While there we talked with Jim, the rider from earlier that day. Another couple not associated with the Trek was sitting at the bar, as well. The woman of the couple was talking with Ty and told him that her mother or father (sorry I can’t remember which one) died from ALS not long ago. When they say this disease is rare, don’t believe it!!!
So I headed up to the room to wake up Steven and get ready for speaking that night to the Tri-State Trek group which included riders, volunteers, sponsors, and people from ALSTDF. We knew from the previous year that there would be many people there directly affected by ALS and others that were there for the bike ride and a good cause. Hopefully our speech was uplifting, informative, motivating and…? After the dinner was finished we spoke with a great group of folks from ‘America at Home’. Ty surprised everyone with a bottle of champagne he bought a few days earlier from a local wine merchant, who’s father died from ALS, again, it is a rare disease, right???? The ten of us toasted to a safe ride and to all PALS and CALS that could not be there. Emotions ran high, it was so amazing to have both Ty and Todd there supporting us.
The next morning I promised Ty that I would meet him at 5am (EST) for the breakfast then would wake Steven and we would set all the riders off with a moving speech. So I followed through on the breakfast part and Steven did the well wishing to the crowd. It was amazing to see all those riders riding for a cure for my husband….
Many pictures were taken by us and all the riders so please check out our photo album to see event pictures!
The plane ride home was extremely difficult for me, my heart was back at the ride and I felt like I abandoned Team Bishop. I should be there for Ty and Todd and frankly all the other riders. I huge pit was in my stomach and I couldn’t do anything about it.
I had to change gears and get excited for my 20 year high school reunion. I wanted to get excited. Sheer exhaustion set in around 4:30pm. You see we arrived at 1:26pm from Boston, then was picked up by a wonderful friend and whisked away to home, only to have 15 minutes until I had to meet my sister-in-law up in the mountains to pick up Christopher. On the way I called one of my best friends and all the sudden started crying. At that point I didn’t even know why I was crying but realized what amazing friends I have as she was there for me.
I picked up Christopher and it was so wonderful to see him. I hugged and kissed him all over. Then on the way home I held his hand in mine from the driver’s seat and him directly behind me. I really missed him! We only had about an hour together until Steven’s mom came to pick up Christopher. Thank God she did that, it really helped us out. That was about 4:30pm when I had to take a nap for about an hour then get up to shower and get ready for my reunion.
The reunion planning started back in December, which I headed up and what an incredible committee was assembled. I remember the first few meetings, there were people that I knew their names but didn’t really know them. So out of this process of planning the reunion I have gained more friends and rekindled old friendships. Thanks to all of you! The reunion exceeded all my expectations with a great turnout and many new memories formed!
What an amazing week! So many emotions evoked; love, fear, pain, hope, defeat, trust, sadness, respect, honor, humbleness, gratefulness, compassion, joy, and so many others… With the Tri-State Trek speaking engagement, two of our friends riding for Team Bishop in the event, my 20 year high school reunion that I headed up, Christopher away from us for four nights and dealing with PALS/CALS lives and deaths in the last month, feelings overwhelmed me I never thought I would experience in such a small time period. They are still flowing through me today.
It all started on Tuesday July 12, 2005, getting ready for the flight out to Boston. The process went well and after dropping off Christopher to stay with my brother for three nights (yikes, a long time away for Steven and I) we were ready. To our surprise Steve Neumann (high school friend of mine) had upgraded us to first class. What an incredible treat! It was a wonderful flight, great service and even better conversation. As we waited for our ride to pick us up from the airport the clock kept ticking… Well an hour later we decided to catch a cab and no harm was done. We got to the hotel in Newton, MA (a suburb of Boston) and Ty Ricker (see Team Bishop) was waiting for us so we could all have a drink together. The bar had closed by the time we got there so we decided it would be best just to talk in our room. Ty told us that he and Kim Julian, www.driving4life.org, rented their bikes the day before and took them on a test run. He also showed us his nicely shaved legs which at first we all laughed about, but would later turn out to be a very good thing.
The next day was scheduled with Kim Julian and a tour of ALSTDF. Steven, Ty and I were all treated to a wonderful lunch, a short stop to pick up some new bike shoes for Kim and finally to meet all the wonderful people at ALSTDF. Dr. Gwen Wong, all I can say is WOW!!!! She is incredibly brilliant, very committed and able to speak at our level. We were there for hours….. We first sat and talked about the current research studies that are going on, and then Steven asked Dr. Gwen how research correlates to his sporadic ALS? You see, these mice are genetically engineered to have the familial type of ALS. She went on to say that we are so lucky to have a mouse model that mimics ALS and that so many other diseases do not. When we were going through the tour, Dr. Gwen brought us to the area where they house approximately 2000 mice in various stages of disease. Ty, being of the fundraising mind asked how much each of the mice costs? After a long explanation, the answer is about $200 per mice. ALSTDF uses 70 mice per week, so the math on that one is $14,000 per week just for the costs of the mice. That is not including the cost to house and feed them. They even have to have their own ventilation system for contamination control. To read more about what ALSTDF is doing please visit their website www.als.net.
After the long tour we headed back to the hotel for a little R&R. Steven and I were talking about how amazing the tour was and I started to cry about the mice, when we were in the lab I made a comment about, “There’s Steven in a cage.” After four years of ALS we have quite a dark sense of humor. We all laughed but when we returned to the hotel the reality of it all hit me like a ton of bricks. At the same time I felt incredibly sorry for the mice. I also thanked God for those mice, because they do represent hope for my husband’s life. Believe me, I do have a hard time with animal cruelty but if I have to choose between a mouse and my husband, I will say no more.
A couple hours later Ty, Steven and I were picked up by Kim and we headed off to downtown Boston. We ate dinner at The Union Oyster House which is the oldest restaurant in continuous service in the U.S. — the doors have been open to diners since 1826. It was amazing! Yes, I ate a whole two pound lobster!!! I was in heaven. Everyone else at the table had lobster too, but not as much as me. After the fabulous dinner Kim headed for home, but not Steven, Ty and I. We ended up across the street at The Bell-In-Hand America’s oldest tavern, est. 1795. There was a live band; they were pretty good and we had some great people watching. Ty was very serious about his carb loading with Samuel Adams Ale while Steven tried to keep up. We stayed there until 1am or so (still on Denver time, so only felt like 11pm) and then got in a cab.
The ride home was hilarious because the driver didn’t know where he was going. We told him we were staying at the Holiday Inn in Newton on Grove St. You would think that he could find it by those directions, but he asked no fewer times then five times what exit we should take. Steven was getting very frustrated and was also very tired at that point. Ty was even on the cell phone with dispatch trying to tell them where the driver needed to go…..anyway we did finally make it back to the hotel with very small tip for the driver.
To be continued……
We would like to officially announce that our website is being sponsored by Denver Interior Designs and Bella Bellisima Designs; both businesses are owned by Bonnie Hermann. Her unending generosity gives us the opportunity to take advantage of all the Premium Services offered by Network For Giving and Giving Technology, LLC.
These premium services allow us to use our own domain nameof www.alsliving.com, use the Shop with Us! tool to raise funds for research and medical needs, extended photo album storage and the ability to create online fundraising events. These are just a few of the premium services Bonnie has allowed us to pursue.
Bonnie’s work includes all aspects of interior design including a vast array of wall applications. If your house needs an interior face lift, we would really appreciate you patronizing our web site sponsor.
She can be reached at (303) 431-9276 or (303) 513-0839 on her cell phone. A web site is in the works for her to show off her designs. However, we can personally recommend her work as she has done two projects for us already, and the accolades keep coming. Thank you from the bottom of our hearts, Bonnie.
The 270 mile Tri-State Trek for ALSTDF is next week and we are excited to announce we now have a Team Bishop. Our own Ty Ricker, from Network for Giving has committed himself to ride the trek with Todd Morin. Ty may be committed to a mental institution after the event for taking on this insanely long ride in humid New England heat, but his dedication is as unstoppable as Todd’s. His rider number is 44, our sign of the angels. Feel free to read the previous posting from April 29th of my 40th Birthday Party to know how important this number is to us. Don’t forget, Todd’s rider number is lucky number 77.
These two gentlemen are using their own cash to fund the trip to Boston and are required to raise a minimum of $1600 each for ALS or the balance goes on their credit cards. We need your help. We are actually setting a goal of $10,000 for Team Bishop because we know there is incredible support out there. Take a listen to this MP3 Postcard recorded by a great friend of Todd Morin’s and former DJ, Gavin Scott from the Denver radio station, FM99.5 The Mountain.
We will do our best to keep you updated with Team Bishop’s progress in fundraising and through the event weekend for these dedicated riders. Support can be donated in three ways, just refer to Team Bishop for proper credit. First, checks made payable to Tri-State Trek can be given to us and delivered personally as Jennifer and I will be speaking at the carb-loading dinner the night before the ride. Second, click on the following hyperlink to download the sponsor page .pdf and mail in your check or credit card information directly or fax just the credit card info and page to (860)-656-7197. Third, click the Online Pledge button on the menu bar of our site. This gives you the option to do an online credit card payment through Paypal going into our account and we will write one check to the Tri-State Trek. If you require a receipt for this transaction for tax purposes, let us know in the notes section and we will have them send you one directly.
Any pledge will make a difference and we sincerely appreciate your continued support. We encourage you to pass this email on to as many friends as you can. Better yet, write a personal message to a distribution list referring them to our website and this posting. You can also just email the MP3 Postcard from Gavin Scott. There are so many ways you can help. Please take action now. Thank you!
I realize that we just added a bunch of new subscribers and unfortunately one of my first postings to you is a eulogy to another fallen comrade. It does, however, emphasize why this web site exists in the first place…to bring awareness to the devastation of ALS.
Last week we attended yet another funeral, the second within a month. I was asked to speak at this one because our ALS support group played a large role in this man’s life the last year or so. With honor I accepted. I have permission to use the name of our friend and his family.
George Gilbert was diagnosed, I believe, in November of 2003 and died June 23, 2005. This is the typical progression of ALS. We knew George, his lovely wife, Dottie and their tenacious daughter Kim through their first visit to our group. Kim and Dottie were eager to attend, seeking support and guidance. George was more than hesitant. That was also typical. The prospect of seeing other PALS in further progression, i.e. wheelchairs, slurred speech and possible ventilators was not a comforting thought. Halfway to the meeting, George expressed his displeasure and asked to turn around. Dottie and Kim would have no part of that!
Jennifer and I were late, as usual, but were able to be part of introductions. Dottie and Kim listened intently to everyone’s ALS story while George appeared disconcerted and distant. George was already having some physical difficulties, the details of which I don’t remember. Dottie and Kim seemed frustrated at the fact that George was unwilling or possibly unable emotionally to accept help from them.
George had a military background with many additional years with the Park Service until retiring a little over a year ago. He was also quite accomplished domestically with building projects and the ability to fix just about everything. He was the ‘go to’ man. He was loosing the fine motor skills required to do many of these tasks and it was frustrating him. The idea of becoming a needy man was not easy to swallow. I could relate, completely.
By the third month, George was reminding Dottie that the support group was coming up as he realized they were not dealing with this disease alone. The safety of other people having something in common allowed the comfort level to grow in George. We all got exposed to his wit, sarcasm and emotional growth.
The support group on the first Saturday of June was spent mostly reflecting on the passing of the gentleman posted in this site May 31 and June 4. It was an emotional day. Lots of tears and memories of previous meetings and interactions were shared.
George took his turn to speak and it was about his family and the people in the support group. With compassion and pure emotion he talked about how in the last few months he had been able to really communicate to his family about how he felt about them. He declared his love for them to all of us. This would have been really out of character for this man six to twelve months ago. He then let our whole group know how much he loved us as well. I don’t think there was a dry eye in the room. We just didn’t know it would be his last support group he would attend.
You see, ALS is a horrific disease, but it can teach us many things as well. It can teach us some important things about life, especially about love and letting others know how you feel. The cruel thing about ALS is that too much of the time, just when we get it about life, ALS takes it away.
The thought I want to leave you all with is that we don’t have to wait for a life and death situation to learn ALS’ lessons. We can choose to live like today is our last day on this earth. We still need to plan for the future, but those plans don’t need to consume us. These thoughts are a major part of our mission and we hope you can embrace them as well.
Rest in Peace, George. We love you.
We have recently added quite a few people to our subscriber list and wanted to introduce you to the www.alsliving.com website. It is our way of informing as many people as possible about ALS, also known as Lou Gehrig’s disease and how the Bishop’s are dealing with it.
When a new posting to the sight is released, you will receive an email just like this one. The senders address is do-not-reply@alsliving.com. If you are open to receiving these postings, please put this address on your safe list. If you no longer wish to receive these emails, please go to our website and use the “Contact Us” button to send an email telling us to unsubscribe you. Absolutely no offense will be taken as we all know how much email everyone gets.
We encourage you to follow the link at the bottom of the article to actually see the posting on our site as the font can get messed up in the emails. If it is your first time to the site, please take some time to browse. Read the Home and Biography pages and catch up on old postings. There are a variety of subjects from personal reflections, news, events and Christopherisms. Feel free to comment on current or past posting as your opinion is always appreciated and can spark further discussion. Just click on the comments link at the bottom of the posting.
Our mission is clearly stated on the Home page and we hope this will inspire you to get involved in some way with ALS. Thank you for your time and look for new postings soon.
Happy 4th of July, God Bless America and have a safe weekend!
Sincerely,
Steven & Jennifer
The Tri-State Trek is 3 1/2 weeks away, July 15-17. As a reminder, this is a 270 mile bicycle ride from Boston to NY. Proceeds will benefit ALS/TDF. Mat Mendel, the event coordinator has been hard at work with his volunteers and it is crunch time to get involved.
We have a great friend, Todd Morin that has decided to participate in this fantastic event. He will be flying from Denver to Boston on his own accord, riding all 3 days and 270 miles then finally flying back as soon as the ride is over to be at work the next day. Todd is a Colorado native, has a lovely wife and two great kids. His oldest is one of Christopher’s best friends. He began cycling in 1985 and raced competitively for Colorado State University in 1991 and 1992. Hit by cars twice, he still is insane enough to ride…2500 miles this season alone! As you can see he is very dedicated and we are honored he will be riding for us and ALS!
He is truly treating this as intended by the Tri-State Trek as being “a fund raiser with a bike ride as a reward.” However, we need your help to sponsor him for his efforts. Support can be donated in two ways. First, checks made payable to Tri-State Trek can be given to us and delivered personally as Jennifer and me will be speaking at the carb-loading dinner the night before the ride. Second, click on the following hyperlink to download the sponsor page .pdf and mail in your check or credit card information directly or fax just the credit card info and page to (860)-656-7197. The fax machine is right next to Mat Mendel in case you have security concerns. For proper credit to Todd, please include his full name, Todd Morin, rider # 77. His address is 12727 West 85th Circle, Arvada, CO 80005.
Thank you so much, Todd for your willingness to ride on our behalf and thank you in advance to everyone that sponsors him. What an honor it would be if he could blow into Boston with the most pledges! There is no amount too small…or too large, it all adds up. Don’t hesitate, participate.
Tom Heuerman's Pamphlet Series was introduced to you a few postings back with Pamphlet 87: The Power of Purpose (1 of 2). I would be remiss if I did not include the link to the second half of this important message, Tom's personal journey. After reading it myself, I was compelled to provide him feedback:
"This is really a great piece. I am most impressed by the inspiration given and the caution that it is not a cakewalk. It is great advice and creates balance. We both know you cannot experience joy without knowing sorrow. You set that expectation and then challenge the reader to take the plunge, anyway. People need purpose and our society needs people to pursue their purpose for the greater good. An absolutely perfect and timeless pamphlet!" - Steven
I hope you take the time to read and absorb these masterful words of living, Pamphlet 88: The Power of Purpose (2 of 2).
I occasionally let my mind wander and contemplate the idea of a cure or treatment for ALS being found. What would I do? Where would I go? Who would I see? I’m inspired with these thoughts primarily by the late, great poet Mattie Stepanek. Mattie, as many of you may be aware, was the National Goodwill Ambassador for the MDA and passed away last year. He was mourned by the world over including Jerry Lewis, Larry King, Oprah Winfrey and President Jimmy Carter. The work that inspires me during my mind wanderings is a poem Mattie wrote called, “I Could…If They Would.” It was later composed and arranged into a song, performed by our friend, Billy Gilman on his album, Music Through Heartsongs. The poem talks about what Mattie would do if they found a cure for his Muscular Dystrophy in certain times during his life, including his departure from this earth, knowing he was part of the effort.
This glimmer of hope is essential for me to hold on to and contributes to my slow progression, in my opinion. I recently was evaluating going back to school to learn more about our society, the problems we are facing today and how to impact them. Jennifer would be the first to tell you that I never fathomed a return to school as classroom time and tests were not in the upper echelons of my experiences.
I would want to make a difference in this world we live in. I’d consider an education in broadcasting as I believe that it is the easiest and most direct way to address the masses. I’m not talking about a newscaster per se, but perhaps a human interest story host. Through my public speaking and TV appearances with Jennifer, I feel as though I have a comfort level with this media. The other idea I toy with is being a motivational speaker to get people to start experiencing life before a life and death situation is faced. In essence, Jennifer and I do some of this now. Frankly, not often enough to impact the number of people I would hope to affect.
I just looked back on the paragraphs written prior and realized I am blending present and future frequently. This is, undoubtedly, improper vernacular. Hey, I was a Mathematics Major, not an English Major! I find it interesting how conflicted I am about what to do now and planning for the future when it is so uncertain. Do I invest the time, money and energy on an education that might not be timely or do I take the plunge and enjoy the ride? I know Jennifer would love to go back to school, but she is more concerned about taking care of Christopher and me. We have an angel in our midst.
I am already educating myself with an investment course I have been participating in for the last two months. This is not my true love or something that is going to change lives, but it is something I feel I can take control of. I watched our 401k turn into a 101k and our Employee Stock Purchase Plan investment, which we got at a discount (ha, ha), turn into monopoly money that I don’t even consider real anymore. I felt learning about stocks was something I could improve on instead of being a victim of the market. I don’t know if it’s working yet, but I feel like I’m accomplishing something.
Self improvement can never stop. If it stops, we die inside. Diseased or perfectly healthy, without motivation to be better people we atrophy and waste away like the muscles in ALS.
I have just very humbly learned the power of writing, specifically in a public forum. While I intended to honor a person with the utmost respect and bring attention to this horrific disease called ALS, I neglected to get my facts straight before writing my last posting, Sad Day. I mistakenly understood that the man I wrote about refused food and water as his personal last stand against ALS. I was terribly wrong with the manner in which this starvation transpired. This was not a voluntary, defiant act. This was a case of how ALS striped away this man's ability to even swallow water, not to mention food, without choking on it. What was refused was simply the intervention of artificial means for nutritional support…a feeding tube. I believe we can all understand what a personal decision that would be.
There is no doubt that I have increased the pain to this wonderful family with my irresponsible rhetoric. I write this with a pit in my stomach and tears tumbling from my eyes at the harm I may have done. I can only hope to be forgiven as I had the most innocent of intentions. To me, this makes ALS an even more horrific disease than I thought possible. It affects individuals physically but whole communities emotionally, forever. Please accept my most gracious and sincerest apology...Steven
We got a phone call yesterday that a friend from our ALS support group died over the weekend. It was further explained that this mountain of a man could & would not live in his body anymore. This disease took a man with the heart of a lion and destroyed his spirit for living. He made a decision to starve himself to death rather than become a prisoner of his own body. He was still walking and talking. He was greatly supported by his family and friends. He was never at support group with less than his loving and devoted wife and at least two others with him. He did see his body succumbing to the disease with weakened limbs and decreased breathing capability. However, on the verge of death, he did not appear to be.
It was such a reality check for Jennifer and me. The fact that this horrific disease could take such a stoic man and make him feel that the only thing he had control over was how he was going to leave this life. Can you imagine your last stand being a hunger strike against ALS? That is exactly what this was. He was a proud man and ALS was not going to defeat him. Rest in peace, my friend.
I am very fortunate with my slow progression, yet I do feel it everyday. Jennifer sees it. Even Christopher sees it. They both know when I am having a bad day and two more compassionate people I could not ask for in my life.
I can’t help but have a little survivor’s guilt as the people that are in our support group with the exception of one, were all diagnosed after me and I seem to be outliving them all. I wonder if this is how people in their 80s and 90s feel when all their friends are dying. I’m too young for this.
Let me introduce you to Tom Heuerman. Our own Ty Ricker from Network for Giving found his website, www.amorenaturalway.com. Much to my surprise in Pamphlet 73, Personal Leadership: The Call to Nobility, I am referred to and made an example of...in a good way. It is amazing how things work out, but out of sheer appreciation, I emailed a thank you to him to show my gratitude for including me in his thoughts.
Tom is an incredible person that is interested in cultivating the biggest natural resourse this planet posseses...our people. He does this in many ways but by his own words from his site:
"Pamphlets are my thoughts about life, change, leadership, and organizations. I assist people with their life strategies and also coach people in organizations. I have deep leadership experience, and I consult on a wide range of organizational issues. I most like to help companies develop the leaders and cultures that lead to healthy and productive people, outstanding operating results, and sustainable enterprises."
Jennifer and I have been humbly honored to participate in his work and passion. We have since established an ongoing email correspondence and the result of which is Tom's Pamphlet 87: The Power of Purpose (1 of 2).
Christopher participated in the Arvada Center Children’s Chorale original production of “Fast Edna” last night. It was not on the main stage but more of an acting class for kids from 7years to 13 years old. Designed for the actors to be ready for future auditions, it involved improvisation, singing, dancing and acting.
The play took place in modern day NYC and included 5 songs. The actors actually developed their own characters and named them. Christopher came up with the name, Jeremy Jacobs otherwise known as JJ. He was a peddler of NYC trinkets and lived in an apartment above the corner where he sold his wares. His imagination is fantastic.
The production was definitely improvisational and they had been practicing for 9 weeks with a fake hot dog stand. When they went live with the show, real hotdogs and condiments were used. Christopher, who is not a big eater, went nuts about having a real hotdog. Eating it during the play was a real priority to him and it really added to the show. He was the last one done for a costume change because he was still eating. The audience got a kick out of it especially his loyal fans: Jennifer, Me, Omi, Papa, our friend Jodee with her daughter Anna (a friend of Christopher’s), our friends and neighbors, Lori and her son Zac. Thank you all for coming.
I think what classified this story most as a Christopherism is what happened during the day at school prior to the evening performance. He was on the biggest slide at school during recess and somehow got pushed down, landing on…his face. When Jennifer picked him up from school she was very concerned, but didn’t want to get him all worked up before the play. She simply asked what happened. Christopher told her and then added, “Won’t this be a great look for my character tonight!?”
Jennifer and I spoke at the ALS Association Candlelight Vigil on Monday, May 9th. The turnout was small but determined. The essence of the message we delivered came to us the night before when we watched the movie Pay It Forward.
To be brief, it is about a twelve year old boy that gets a Social Studies assignment to think of an idea to change the world…then do it. He takes the assignment verbatim. His idea is to positively change the life of three people in a way they cannot do themselves with a promise of paying a change forward to three more people. The effects of such a concept would be exponential to the power of three. He is ultimately successful with the concept reaching multiple states in a short period of time. He just didn’t realize it.
The vigil we attended was joined by some very strong people. Many had lost loved ones to ALS and even after they had experienced the insidiousness of the late stages of this disease, they came out to show support. PALS at various stages of the disease attended with their family and friends. There were people from ALSA that work tirelessly to raise funds for research, patient services and advocacy. The man from United Seating and Mobility, whose efforts were above and beyond the call to convert my donated power chair to my size, was there with his wife.
With a one to one ratio of a patient being newly diagnosed and a patient dying, we need to do something to gain a critical mass of people to get national attention to this disease. Our ALS population just doesn’t grow. We need the power of three.
We give the biggest credit and yet have the biggest request of the surviving families. We need you to stay in the game. We need you to tell of your family’s trials and tribulations with ALS to three new people with the promise that they will pass the story on to three more and so on. We invite everyone to share our story with three new people with a referral to our website with the promise to that they too share it with three people.
Jennifer and I have always wanted the awareness of ALS to be at the level of Cancer, AIDS, Alzheimer’s and Parkinson’s. If we can get that kind of awareness when only 30,000 people have ALS in the United States at any one time, we will get more federal funding for research. It is the only way to get the money and attention required for a treatment and ultimate cure to be found. ALS is not a rare disease…our population just keeps dying off. We need your help to obtain the power of three.
People are always asking, “What can we do to help?” Well, here is how you can help. We just received 2000 full-color posters from Classic Copy and Printing (our printing sponsor) and we need help passing them out! We’re taking orders for packets of ten posters and all you have to do is go to your local bike shop, outdoor store, ice cream shop, burrito shop, food market, or anywhere else you think cyclists may be and post one. Write Mat an email and tell him how many posters he should send you.
One Day Rides
This year cyclists may join us to ride our first 60 miles or our last 75 miles. This is a great opportunity for anyone who can’t make the full 270 miles, or for any friends and family who would like to experience the Trek.
Training Rides
We’re looking for people to lead rides in their areas. Spin Instructors, please let me know if your gym will allow open classes and we can list those as well.
+1
Keep sending us your referral riders! So far, participants in the +1 Program have raised $550 towards their individual pledge accounts.
Our NY Finish
A special thanks to Rick Brooks for sending us a much better route into White Plains! Dori and I scouted it a few weeks ago, and it is perfect! The best description would be to say that it really matches the rest of the route - no longer will we climb that dreaded Route 22 over the Kensico Reservoir!
Right now we are less than 9 weeks away from the 3rd annual Ti-State Trek. If you have not yet registered, now is the time to do so!! I hope everyone is doing well, and I look forward to seeing you in July.
Christopher usually sneaks into bed with us somewhere between midnight and 7am. Some parents discourage this, but given our situation, we enjoy any chance to bond with him. The other morning, Jennifer had already woken up and was showering. Christopher jumps in bed with me sometime after 7:30. He realized Jennifer was not there, looked at me and said, “Sorry, I’m late.” He gave me a kiss and off he went to the family room. I couldn’t help but laugh out loud and know the day was going to be great.
This morning, it was about 7:20 and Jennifer was just waking up. I was still sleeping and didn’t hear any of this. Apparently, Christopher comes in our room and says to Jennifer, “Oh good, I made it!” He snuggles for about 5 minutes and asks if he can wake up now. Off he goes to the bathroom.
I am lucky enough to still be able to play 9 holes of golf with a cart and have had two such opportunities this year. I pay physically for several days to splurge on this much activity, but it is worth every bit of it to be able to experience the essence of golf. To me, it is the whole package of being outside, the beauty of the courses, the smell of fresh cut grass, the fellowship of your playing partners and the rare sound of perfect contact when the club hits the ball or a 30 foot putt dropping when you didn’t think you had a chance.
The first experience was with a great friend that took the time out of his chaotic schedule of several businesses and a possible move to NYC to chase around a little white ball with me. That in itself made it worth it, however it got better. I had a great day of actually playing golf, for me anyway. I shot a 48 for 9 holes. Better yet, I was 5 inches away from an ace on my nemesis par 3 hole. I told Jennifer about the difficulty I always had on that hole as we drove by it when she dropped me off at the golf course. I felt like I was going to conquer it that day for some reason. The tee box said 178 yards and we had a strong NW wind but the flag was in the front taking about 10 yards off. I don’t hit my longer irons that well so I brought out the 5 wood. I normally can hit it about 180 yards and felt if I teed it low and with the pin in the front, it would drive through the wind close to the pin. Something so odd happened next that I had trouble believing it. I hit that ball exactly as I had pictured it in my mind. Tap in birdie! I didn’t have one blow up hole (triple bogey and up) which is very unusual. The round was a pleasure because it was whole. It had all the elements that make golf so special to me and the bonus of good play.
My next round was more challenging but several realizations came out of it. A new friend made the same sacrifice of his time with an equally chaotic schedule. I still enjoyed the company, the beauty of the course and that rare feel of a good shot the way I imagined it. But they were too rare. The round was filled with blow up holes and golf balls in the water. Frustration ensued. I lost sight of the whole package of golf and let the mechanics of a bad round blur my vision. There were occasional foul words echoing off the houses and slamming of clubs in the bag. Here I am talking to so many people about being positive and I’m getting upset about a stupid game. I was disappointed and ashamed of myself after the round; disappointed in my play, ashamed of my actions and attitude.
What was I thinking? I have been diagnosed with ALS for four years and can still swing a golf club! I can play during the week when it’s not crowded. What was I so upset about? I started to realize that I still care about how well I play golf. I still expect excellence of myself in the things I choose to pursue. Maybe it’s healthy to have a dose of frustration to appreciate the good things in life. Maybe it is this competitive, feisty nature that is helping my progression of ALS remain slow. Another one of my friends thinks so. He said with my attitude he will see me at my 50th birthday party.
The real lesson or reality check for me in all this was when things were going great, as in the first round, everything was rosy. When adversity reared its ugly head, my attitude changed into something less pleasant. It will be a vivid reminder to me as my progression takes me to places that are definitely adverse to maintain a positive attitude and look for the silver lining every situation offers. Thank you to both my friends for sharing your busy lives with me and providing me the opportunity to continue learning.
Recommended reading: Golf in the Kingdom by Michael Murphy. This is not just for golfers!
Jennifer and conspirators had a birthday party for my big 40th on Friday, April 15th. I have never been so humbled in my entire life. My parents were there, of course and contributed both personally and financially. My cousin Ulla and her husband Fritz flew in from Germany to help us celebrate. It just happened to be Fritz’s birthday on the 15th as well so it was a pleasure to share our day together. We were able to spend six days with them before they drove off to explore the landscapes of Utah and Arizona while ending up in Las Vegas. Jennifer’s parents were in town, too. They were also kind enough to watch Christopher for the evening and provide great relief. Christopher’s Godparents from Texas flew in just for the weekend to make me feel extra special.
The grand surprise was pulled off by my parents when they walked in with my Uncle Siegmar, Ulla’s father from Germany. The funny thing about it was that Ulla didn’t know her father was going to be there so she was just as surprised as Jennifer and me. The fact that he had made this trip from Germany just to celebrate my birthday made me break down in tears when I introduced him to everyone. Surprised is not exactly how I would describe my emotions when I first saw him because his presence was just another example of the wonderful person he is. I was truly honored that he would make the effort, and I’m sure that it was no easy feat, to be there. Thank you to my parents for taking the time to make all the arrangements.
I began the festivities announcing that I was sure most people did not expect me to be around for my 40th Birthday. Four years ago Jennifer and I were not very sure either. Yet, here I am. On that note I have now completed my trifecta of goals set when we were first diagnosed: attending my 20th year high school reunion, seeing Christopher go to school where he is now almost done with 1st grade and making it to my 40th birthday. Now is the time when I need to set new goals?
My shortest term goal is to make my diagnosis anniversary, and be a member of the top 20% of life expectancy of ALS. I haven’t been in that bracket too often, especially in school, so this will be quite an accomplishment to attain in life. The doctor’s only give you 2-5 years after diagnoses for 80% of the ALS population. My second goal has to do with Jennifer and being able to celebrate her 40th birthday. The third goal is to see Christopher turn double digits.My longest term goal is to turn 44 years old. This number has a special meaning to me.
For the longest time it has been a number that I see most frequently on digital clocks. Now, one might think it is a number that stands out because it is a double, etc. However, consider this: The number 44 shows up on the clock only 24 times in the day. So out of 1440 minutes in the 24 hour period our chances of catching that magical number only once are less than two percent unless we stare at the clock. Yes, being a math major, I see major flaws in this proof and/or statistics, but humor me. I see this number multiple times a day on the clock, not to mention many other unsuspecting places. Recently, I saw it on the jersey of a baseball player when I randomly glanced at the players in the rain. I see it on the display in our car as the time elapsed of a CD is 3:44 minutes. The very host of this website noted that since we first talked on the phone to the day we met was, you guessed it, 44 days. I couldn’t get to sleep last night but I finally turned off the TV and glanced at the clock…1:44. I can go on and on with examples for the last…44 years. Wait a minute, that isn’t possible, huh? You get the point.
So what is the point, you ask? We consulted a numerologist of course. Apparently, the number 44 is the sign of the angels. I choose to believe that every time I see that number I am reminded that angels are watching over me and I take the time to thank God for their vigilance. Is the whole thing kind of hokie? Maybe, but it gives me piece of mind that I am not alone in anything I do and that none of us really are.
Jennifer had special ordered a cake from Barkley Eberline, the owner of Eat Dessert First. Check out http://www.eatdessertfirstpastries.com/ to see what this man can do. It was a tribute to the wine nut that I am by being in the shape of a wine bottle. It was absolutely beautiful and delicious.
I was overwhelmed by the emotion and sincerity with which our guests spoke. I am forever grateful for the kind words of relationship and encouragement. As each individual spoke, I was able to make a connection with each person that I will never forget.
My parents put together a “This Is Your Life” type skit that brought back many memories. It was great to let everyone in on my formative years, the good, the bad and the ugly. My Mom had a collage of pictures from newborn to present for reflection or comedic relief in some cases. Thank you both for making the day so special.
Then there was Jennifer. She had two surprises left for me. The first was a scrapbook in which our guests had the opportunity to contribute a page or two. They ranged from downright hilarious to beautiful and very touching. The thought that went into these pages did not go unnoticed. Next, she presented me with a large plaque with our Parade Magazine cover and article extravagantly mounted on it. She said she wanted to have it done right with the dignity it deserved. It was a home run. I cannot thank you enough, my dear Jennifer for all that you went through to make me feel like the luckiest man alive, that night and always.
We cut into the “Wine Bottle” cake and basked in the enjoyment of the moment. One of our friends asked, “How do you keep so positive?” I quickly responded, “Look around, how can I not?!”
I will end this with a dedication to my cousin Ulla. With her living in Germany, I didn’t get to see her very much when we were growing up. When I did, I apparently didn’t treat her very well by constantly teasing and annoying her. Jennifer improved my life tremendously and taught me how to respect and treat women. Ulla is quick to give praise to Jennifer for this as I have had a blossoming relationship with my cousin ever since.
After I was diagnosed we grew even closer with her genuine concern over my progression. We have shared more face to face time together over the last 4 years than we have in a lifetime. I was able to witness her wedding to Fritz in October of 2003. Her presence at my party started off as a joke since it was Fritz’ birthday and we suggested that we celebrate together. She made it happen and took time off from her work during a very busy time. I cannot describe the feelings I have for Ulla so let it suffice that we don’t need to speak a word to know that we are special in each other’s lives. I love you both Fritz and Ulla and thank you so much for coming.
Let the number 44 touch your lives often,
Steven
We went out to dinner with some dear friends last night for Jennifer’s birthday. As it happens, the wife has ALS and they have been integral parts in our lives since we were first diagnosed. They were at our first MDA support group meeting and she was diagnosed only one week before me. Unfortunately, she isn’t fairing quite as well as me in term of progression, yet she is also four years out from diagnoses. Our friend uses a wheelchair fulltime and has lost the use of her arms. Her daughter joined us last night and fed her mother without a second thought and actually has been able to make light of the situation by shoving a piece of birthday cake in her mom’s mouth when she really didn’t want it.
The point of this story is that towards the end of the meal, Christopher asked why the daughter was feeding her mom. Without hesitation, our friend explained that her arms don’t work like they’re supposed too so she needs help. Now, Christopher knows she has ALS and immediately turned to me to ask me if I would be like that and if our friend was going to die. Jennifer pointed out that everyone will die eventually and nobody really knows how or what is going to happen to them. He replied, “Of course, Mom.” The whole table got teary eyed and I was able to have a sidebar conversation with him.
I emphasized the words of his mother adding that not even with ALS do we know what the progression will be. My diaphragm may give out before my arms or legs, but I didn’t tell him that. Though, it was what I was thinking. I was able to redirect him to the fact that her daughter was helping her mom. I related it to how he helps me so much on my rough days with a kiss at the right time, a muscle rub, getting something for me so I don’t have to get out of the chair when I’m sore and aching. I asked him what he thought about her daughter helping the mom like that and he said it was really nice. I let him know that when he helps me out it is really special too and that kind of seemed to satisfy his curiosity at that point.
Our friend made sure to point out that it was really great of Christopher to ask about the feeding instead of just staring and wondering. Out of the mouth of babes. Thank you to our friends for a wonderful dinner and learning opportunity!
Since Christopher was on Spring Break last week and we had quite a few events planned even though we were not traveling anywhere. Play dates with friends dominated the scene but also included were some movies, a tour to Celestial Seasonings Tea Factory, the Apex Recreational Center and the Zoo.
There were two things I was really grateful that I could still do. First was going to the Apex Center. This place has three indoor swimming pools including two large water slides. There is a kid’s area pool that is about 18” deep at most with a big structure to play on that has two smaller slides. I can’t even fit in those. As luck would have it, that particular area was closed due to a floater. Anyone who has seen the movie Caddyshack knows what I mean.
Jennifer is not much of a swimmer so this was a father/son thing. Time in the pool takes a lot out of me and I have difficulty swimming and talking at the same time as the water pressure is too much for my diaphragm to handle. The constant movement of getting in and out of the pools as well as swimming itself is very taxing, and I didn’t care one bit because this was our day.
First I had to get my pass to the center. You see, since I am on Medicare, I get into their Silver Sneakers program. It is a free membership to the facility for older folks so it’s always fun and a bit ironic to explain why I am on Medicare. Christopher was very patient as I went through the paperwork for the membership. After we were paid up we headed to the locker-room to change and then the pools.
We had so much fun! Our little guy is not much of a swimmer yet and has only had a limited amount of summer lessons. He was a real trooper and remembered quite a bit from last year. He has these great florescent green goggles that help him out quite a bit. We went to the family hot tub, crossed the pool with plastic floating logs in it where he clung to the ropes overhead, swam in the lazy river of water that flows in a circle around a mountain sculpture and finally went to the big slide since the little ones were closed. In order to get to the top of the slide it is the equivalent of at least two flights of stairs. So as Christopher was apprehensive about the big slide I was more concerned with just getting there. We made it to the top where we sat down on an inner tube and waited our turn. Finally, we took off with Christopher on my belly yelling, “Kowabonga!”
We ended up doing the whole cycle of hot tub, logs, lazy river and slide once again. I was sucking for some air at the top of the slide the second time. Jennifer was there to pick us up after running some errands so we packed up our things, changed and headed for a snack and the tree house play area for one more last blast of fun.
The second thing was heading for the zoo. I know, I know, we’ve all been to the zoo so big deal. The last time we went Jennifer had to push me in the wheelchair all over the place. She did it with not a word of complaint going up, down and all around the place. It’s a lot of work for her and frustrating for me. Even after almost 15 years of marriage she can’t read my mind and know where I want to go and what direction I want to face. Go figure. The reason for the wheelchair is that there is nothing but standing and walking when visiting the zoo, both of which are extremely fatiguing on my body when any significant amount of time is involved.
This trip was different, however, because we brought my new electric wheelchair that can fit in our Ford Explorer thanks to a foldable ramp and a reclining seat on the chair. For anyone who might think a wheelchair is confining they need to rethink because it was absolutely liberating to be in charge of my own destiny and go anywhere I wanted at the zoo. When Jennifer and Christopher went to ride the train, I took off and explored some other exhibits. When Christopher got tired, I would let him climb on my lap and Jennifer didn’t have to push the both of us in a manual chair.
This electric chair is really a luxury for me right now. I still have use of my legs but for limited times. Standing is actually more straining than walking oddly enough. I’m just extremely grateful to the Williams family for donating the chair to me, United Seating and Mobility for modifying it for my size and the Muscular Dystrophy Association for contributing to the modifications. I’ll probably write more on the chair and all the things that were involved at a later date.
Suffice it to say we had a great Spring Break together and I’m very happy and lucky to still be able to participate as much as I did. I was sure sore after swimming and my forearm cramped up after using the electric chair, but it was worth every second of it.
One night last week while Christopher was on Spring Break, I was putting him to bed. He was having a tough time getting to sleep and just couldn’t get comfortable. Usually he is able to snuggle up to me and get in a cozy position. After a while he finally put his head on my right shoulder with his head facing away from mine. I absolutely love this and feel very close to him.
Unfortunately, I have lost so much muscle in my shoulder that he was just laying on my collar bone and shoulder socket. He kept fidgeting even though I knew he felt safe and loved. I knew why he wasn’t comfortable as it was hurting my shoulder as well.
It really was just one of those occasions when you realize something has changed and it is out of your control with this disease. You cannot help but mourn the losses. As with most things, however, we figured out a way to fix it by putting his favorite blanket on my shoulder as a pillow and all became right with our world again.
As I discussed in the fatherhood article the concept of the “Lucky One,” it was me tonight.
We were coloring Easter Eggs today with some neighbors and a large bottle of white vinegar was purchased to make the coloring concoction. They finished the eggs quickly and as I put the vinegar in the pantry I noticed the expiration date being in 2009 and promptly advised our family that we can use this for quite a few Easters.
It is amazing what sticks to our memories, but since I was the Lucky One, I got to have the deep conversation with Christopher. The last thing he said as he was drifting off to sleep was, “Does the vinegar really last until 2009?” Maybe not all the conversations are deep and thought provoking, but at least they can be entertaining.
The most challenging and rewarding thing for me right now is fatherhood. I am torn between trying to teach good lessons which require patience and discipline (on my part) and wanting to give Christopher anything that makes him happy because I will likely not be around long enough to fulfill that in the long run.
Ever since we were diagnosed I find myself challenged with having the patience to instill lessons that I deem important to what a father should be teaching. I want Christopher to soak everything up quickly so I can see the results of my fatherhood. It’s like I want him to grow up fast so I get a chance to see what type of man he might become before it’s too late. Unfortunately, my expectations can sometimes overextend Christopher’s abilities. “He is only six,” I remind myself, and yet Jennifer and I talk about him having an old soul, i.e. experience beyond his years. Jennifer feels that she can be a little too easy on him to compensate for my occasional harshness.
It would be easy to say I’m not going to be around when he is older and decide to give into everything he wants. There would be no arguments or raised voices, just a simple, “Of course, Christopher.” What an injustice that would be to him and Jennifer. It would turn him into a very spoiled child and that is a legacy I do not want to leave. I do my best to pick my battles, but find I still worry too much about the little stuff. There are some things Jennifer and I both give into, but they are actually a little selfish on our part as well. For example, several years back when Christopher was not going to bed when we needed him to, we came up with the idea of “The Lucky One.” In essence, it is which of us gets to lay down with Christopher and have the final conversation of the night with him as he goes to sleep. He still loves the idea that we mock argue over whose turn it is and it makes him feel very special. On many occasions we fall asleep with him. I know we should be able to just put him to bed and have him go to sleep on his own at this age. However, it really is a lucky time for us as this is when he really opens up and comes up with the most reflective thoughts. It’s also a time that doesn’t require physical activity, for me especially, yet the bonding time with Christopher is invaluable.
When I look at pictures of him when he was newborn up to about three years, I see how much he’s changed and can’t believe how fast time is passing. I am so proud of him. I am proud of the boy that he has become. Jennifer and I have had the philosophy from day one that no matter what we do in our parenting with Christopher, he will possess two things: self esteem and the knowing that he is unconditionally loved. He might end up in therapy for everything else we screw up, but these two things he will have. We might have gotten a little carried away on the self esteem thing as he is exercising his independence quite regularly these days, but then again, it could be because he is a six year old boy. He didn’t come with instructions, so who could be sure?
I keep reminding myself that I have today and am not promised tomorrow. So when I get aggravated and lose my patience with him because he might not get what I am trying to teach him fast enough, I do my best to calm down quickly and apologize sincerely. It is how I live with no regret, because as humans we have emotions that boil up now and then, but if we can recognize them for what they are and come to a peaceful solution in a timely manner; we can honestly say we did the best we could.
I have a daily reminder to live everyday to its fullest, but being human, I still need to be nudged at times. It is an ideal to be pursued with unending perseverance and we all need to help each other remember. So I am torn between wanting to see Christopher grow up faster than time allows and cherishing everything he has to offer right now. I think I’ll choose right now and see what tomorrow brings.
May is ALS Awareness Month. There will many events hosted and dedicated to this disease and we would like to refer you to the websites on the right for details.
One in particular is ALS Associations Advocacy Day in Washington, DC. Please refer to http://www.alsa.org/policy/alsday.cfm for details on this incredible effort to stimulate ALS awareness and change public policy affecting many devastating diseases.
Our family is planning on attending but we could use your help. If there is anyone out there with more frequent flyer miles than you know what to do with and would like to donate them to get us to Washington, DC this May, we would be extremely grateful. Please refer to the online pledge section and let us know so we may contact you to make arrangements. Thank you for your generousity in advance!
At the time of our diagnoses, we were told to get our affairs in order, don’t plan anything more than three months in advance and I had two to five years to live. Only 20% of ALS patients live longer than 5 years and that statistic includes those who have chosen to live with a ventilator. ALS can be so progressive we have seen someone go from diagnoses to ventilator in three months. As referred to on our home page and biography, we have a new life mission and family mottos. Personally, I also made three goals. First was to attend my 20 year High School reunion in the summer of 2003, second to see Christopher go to school and finally to make it to my 40th birthday.
It has now been four years and I am still talking and walking, albeit shorter distances. I have deteriorated to be sure, but certainly nothing like the doctors had forewarned. I have had the opportunity to look at life in a whole new perspective. I enjoy the little things that I took for granted not long ago. I don’t have any regrets since being diagnosed. That is not to say that I don’t do things I might regret, it’s just that I do my best to correct those things in a timely fashion. I’ve had four years to make positive changes in my life where those changes may not have taken place had I not been diagnosed.
My anniversaries are for the most part uneventful. I have some reflection time of what could have been, both good and bad. But most of all I am just grateful for being blessed with a very slow progression. My reunion was attended; Christopher is now almost done with 1st grade and my 40th birthday is coming April 15th. I’m pretty sure I’ll make it. Come to think of it, I was never guaranteed those things anyway, none of us are. I have been thinking about my next set of goals for I think it’s essential to have them and then celebrate their attainment. By my birthday I hope to have them solidified.
We had the great opportunity to befriend the one and only Jerry Lewis during our days with MDA. His birthday is the 16th of March so Jennifer and I called him today to avoid the rush of calls he gets on his actual birthday. We also thought it was fitting to call him on my 4th anniversary because we feel he has played such a significant role in my slow progression due to his friendship, support and mentorship. He is a true role model and hero. Thank you, Jerry.
Thank you also to everyone that has been there for us to laugh, cry and celebrate life with. We have an incredible support system that I absolutely credit to my longevity. I truly don’t know if my progression remains slow because I have a positive attitude or I have a positive attitude because my progression is slow. I don’t really care!
I was sent to University Hospital in Denver, MDA’s Clinic location, to get my second opinion for what my initial neurologist suspected to be ALS. This time, Jennifer came with me. She didn’t come to the first appointment because we thought it was just Carpal Tunnel Syndrome.
Initially, we were visited by nurses and other medical students. An objective physical examination of my neurological function was conducted and the mood was almost jocular. One medical fellow in particular seemed almost relieved at what he observed and was very amiable. We had discussions about family and his impending fatherhood. Of course, we told him all about Christopher who was almost three at the time.
Eventually the attending doctor came in to do the formal exam and proceeded without emotion. She seemed unconcerned as she went through the processes of checking my reflexes, watching for twitches, muscle strength testing, etc. Next, the Nerve Conduction Velocity (NCV) and Electromyography (EMG) tests were performed. I had already had these tests performed with my first opinion so I was not looking forward to the repeat. The NCV is uncomfortable as it is basically a small electric shock shot through different areas of the body and measured to see how fast the nerves pass it along.
The EMG is a different animal. It hurts! Jennifer had no idea what was coming. This test uses an oscilloscope and speaker to measure the nerve function as it relates to muscle use. A large needle is inserted into various muscles and the nerve’s electrical signals show up on the oscilloscope and are heard through the speaker. Ideally, there is minimal to no action when the muscles are at rest. However, while the needle is still inserted, I was asked to flex that muscle. At this point, there should be lots of action and noise. With ALS, the results can be almost opposite, i.e. action at rest on some muscles and no action at flex on others.
Jennifer was quite concerned with the whole process as she realized how painful it was and that I was bleeding out of all the needle holes. I was staring at the ceiling and walls trying to survive the test. What really discouraged her was the look of the whole hospital team as the results were displayed and heard. Specifically, our friendly medical fellow looked like a ghost. She could tell he didn’t want to believe what was going on. Upon completion, they all filed out of the room and the fellow stopped, with watery eyes and all told us to give our son a big hug. That couldn’t be good.
I think at this point I was to get dressed and leave and wait for a phone call to come back in and discuss the results. I guess that is normal procedure and frankly, I don’t know how people can deal with that. I know there are times when people have to wait for lab tests to come back from biopsies, etc. There can also be conflicting evidence. We knew this was not the case. Jennifer and I were not up to waiting after stressing out for a week between the first and second opinions knowing this was a deadly disease. We knew the doctor already knew and pressed her directly. She said she needed to run some numbers to be sure. We were willing to wait since we had been there for quite a few hours already, but the doctor finally agreed to call us later that evening.
We were at my parent’s house for dinner when the cell phone rang. Lousy connection and all we were told she concurred with the initial diagnoses. How official of her. We found out later that the standard protocol for delivering a diagnosis such as this is a personal consultation. We realized we pushed the doctor so as not to sit on pins and needles, but did say we would wait. So March 15th, 2001 is the day we consider ourselves “officially” diagnosed with ALS. I think it hit Jennifer the hardest because this opinion made it “real.” Since she wasn’t there for the first go around, there wasn’t the certainty and acceptance that I had already approached. My parents were obviously devastated as well and we all had a good cry.
As mentioned in our biography we will be speaking at the 2005 Tri-State Trek, taking place from July 15-17. Check out http://www.tristatetrek.com/ for details. This is a fantastic event coordinated by Mat Mendel and a terrific group of volunteers.
They are accepting 60 riders so get your registration in as soon as possible. The course is beautiful and challenging so start your training now.
This event raises funds for the ALS Therapy Development Foundation (ALS/TDF). Go to http://www.als.net/ for more information on their research efforts.
Folks, this is why this site is here. It's events like this that will make our life mission a reality. Please take a look at how you can help, whether it is volunteering, donating or the best yet riding.
Jennifer was helping a friend house hunt in the Vail/Beaver Creek area so Christopher and I had a boy’s night. Our great neighbors took Christopher to acting class and then we picked him up to go out to dinner.
We went to Gunther Toody's which is an old 50's diner type place. We came home and had a great night together capped off with him reading a few pages of a book to me while I folded the rest of the clothes that were laying on the bed. He exclaimed, "I'm really reading!" Yes you are buddy.
He had found two crystals at school on this day. Now keep in mind, he picks up everything that catches his eye. Because mom was away, I surprised him by having a "special occasion" where he can sleep in our bed. We settled in and he proclaimed he was going to put one of the crystals on each side of our bed for good dreams. How can you not have good dreams when you've had a sleepy send off like that?
Due to maternity leave issues, we will be rescheduling the 2005 Gift of Time Gala benefiting the MDA's ALS Division for October. No, not our maternity! Please make a mental note to attend and/or support this 3rd annual event. Date confirmation and further details to follow. Thank you for your continued support of this growing event.
We are excited to be joining with our local MDA office as we establish an ALS research driven gala. We envision this gala to be a celebration of the lives of those affected by ALS, and the funds raised will help progress much-needed research. What a thrill it is to have an event of this caliber in our own backyard of beautiful Denver, Colorado.
MDA’s ALS program includes grants to leading researchers’ worldwide and medical care at approximately 230 hospital MDA clinics and 29 MDA/ALS research and clinical centers across the country. MDA has invested 135 million dollars in its ALS research program to date and is the leading ALS research organization.
Now is the time you can help the MDA help us. The gala will be held on May 13, 2004 at the Adams Mark Hotel in downtown Denver. We will be honoring Mike McNiel the current Vice President of The International Association of Firefighters (IAFF), because of his continued dedication and support to finding a cure. The Reverend J. Langston Boyd, Jr. from the Shorter Community African Methodist Episcopal Church will also be receiving the MDA Colorado Personal Achievement Award.
If you would be interested in helping us with the gala, please contact Erikka Backes at MDA (303) 691-3331 or by email. We look forward to working together with you and your families as we celebrate our mission, a quest for a cure.
The time to change the guard is upon us, and we’d like to reflect on what an honor and privilege it’s been to serve as co-chairpersons of MDA’s ALS Division over the past year and a half.
From the beginning of our service in late 2002, it’s been our mission to bring greater awareness of ALS, raise funds for MDA’s research program, and provide help and hope to those affected by this terrible disease.
Highlights
We taped three videos to be distributed to families newly facing ALS and introduce them to the benefits of participating in a MDA support group. We taped a television public service announcement that’s been aired nationally for a year.
Early in 2003, we spoke at a national conference of MDA’s Health Care Service Coordinators. We were able to convey what a powerful impact they can have on the fragile families they deal with.
In the summer, we gave the patient and advocate side at a conference of dedicated doctors, clinicians and biostatisticians who are working hard to find treatments or cures for ALS.
We were honored to be on the cover of Parade magazine’s Labor Day weekend issue and to help draw viewers to the Jerry Lewis MDA Telethon. To this day we receive positive correspondence from the impact of that article.
On the Telethon, we shared our ALS story with the millions of people watching.
Our monthly articles in this newsletter have been intended to give readers some thought-provoking ideas about dealing with ALS and assure them they aren’t alone.
Continuing to Serve
We’ll continue, whenever and wherever possible, to spread the word about ALS, raise funds for research, and provide help and hope. These objectives are the basis for our "new life with ALS."
We’d like to thank everyone who’s helping in the fight against ALS, whether personally, publicly, financially or through research. This disease can deteriorate our bodies but it can’t take our spirits.
Our opportunity to serve the Muscular Dystrophy Association gave us purpose when this insidious disease had stripped it away. We hope we’ve made a difference and, when the cure is found, we’ll know we had a part in it.
We’d especially like to thank Jerry Lewis, MDA National Chairman, humanitarian and friend. All year round he selflessly gives of himself to his "kids," including a 38-year-old man who will forever be changed by Jerry’s unconditional love and passion for life.
Guardian Angel Sponsor $40,000 Donation to MDA
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- $27,000 Worth Of Production & Advertising Provided By KWGN-Channel 2
Angel Sponsor $20,000 Donation to MDA
- One VIP table for 10 at A Gift Of Time Gala
- Name/Logo on front cover of Commemorative Event
- Journal Name/Logo included on invitations
- Signage opportunities at event
- Verbal recognition and plaque presentation at event
Listing as sponsor in all press releases, public service announcements and additional forms of event publicity
- One VIP table for 10 at A Gift Of Time Gala
- Signage opportunities at event
- Plaque presentation at event
Listing as sponsor in all press releases, public service announcements and additional forms of event publicity
- One table for 10 at A Gift of Time Gala
- Plaque presentation at event
Listing as sponsor in all press releases, public service announcements and additional forms of event publicity
- One table for 10 at A Gift of Time Gala
- Name listed in the Commemorative Event Journal
One table for 10 at A Gift of Time Gala
Individual & Couple Sponsorship $125 Per Person $250 Per Couple
Please RSVP: Erikka Backes email
District Director
Muscular Dystrophy Association
720 So. Colorado Blvd. #450
Denver, CO 80246
Office: (303) 691-3331
Fax: (303) 691-3379
It’s almost a relief to have the holidays over and the New Year in full swing.
We had a wonderful time with Christopher on his winter break and had mixed feelings when he went back to school. It certainly frees up our time during the day — 5-year-olds tend to monopolize that. However, there was a real joy in the relaxing days spent with our little family with no pressure to be anywhere or do anything.
With Christopher back in school, our attention is focused on our goals in life. If you don’t have any, make setting them your first one. We’ll continue our mission to raise awareness of ALS, gather funds for research, and provide help and hope to anybody affected by this dreadful disease.
Healing
We recently participated in a personal achievement seminar focusing on the core issues of life, such as: What causes upset for you and why? Then, the process of healing these core issues was addressed, so participants could learn to stop them from sabotaging their dreams.
We attended a similar seminar by the same facilitator about nine years ago, and it changed our lives. Perhaps it’s one of the reasons why we look at ALS as a blessing instead of a curse.
Everyone handles the same circumstance, ALS for instance, in different ways. ALS has a way of triggering our worst fears — such as death, financial insecurity, loss of companionship. If we can find a way not to fear these things and come to a place of peace instead, then perhaps ALS can seem less devastating.
ALS has happened to us whether we fear it or not. That’s the circumstance. We have to make peace with where we are in our lives right now.
Freedom
Imagine the possibility that this life situation (ALS) might be the perfect opportunity to start or do something you’ve always wanted to — taking a trip, starting a new hobby, writing a book, mending or ending a relationship, becoming the person you’ve always wanted to be.
This could be a time in your life in which you have complete freedom to go, do and see (internally or externally) whatever has been put off by other circumstances.
We realize that people with ALS are in different stages of this mysterious disease. But the physical limitations of our bodies don’t have to invalidate the process of dreaming, either for those with the disease or their caregivers.
We’d like to leave you with a thought expressed at the seminar: Peace is love at rest and joy is love at play.
We hope that 2004 brings you much peace and joy!
With the holiday season upon us, we have many choices to make regarding our feelings about it.
The first Christmas after Steven’s ALS diagnosis we wanted to get away from everything that was familiar and take a wonderful trip to Hawaii.
It turned out to be the worst Christmas I ever had.
Even though we were vacationing in one of the most beautiful places I could imagine visiting, I couldn’t see past the diagnosis, and the only reason we were there was because of ALS.
Staying Home
Last year we decided we wouldn’t leave Colorado where we had always spent Christmas. Seeing the beautiful white-capped Rocky Mountains and waking up in our home is where I wanted to be. We knew there would be challenges and we accepted that things would likely be different.
As we were putting up the Christmas tree, Steven became exhausted and needed to take a rest, so he went to the bedroom and napped. This frustrated me, but instead of being able to articulate my feelings, I just closed up and shut down. I thought Steven should have rested on the couch so he’d still be part of the moment instead of going into another room.
Christopher and I finished putting up the tree alone. All I could think was, "This is the way it’s going to be and I’d better get used to it." As I thought more about it, I realized that Steven is still with us and we needed to talk about our feelings.
Later that evening, after Christopher was asleep, we discussed what had happened during the day and I was able to tell him my feelings. Steven shared how frustrated he was that he couldn’t help me and be part of the way we’ve always celebrated Christmas together.
Taking a New Approach
More changes are happening every day. I think about how we might have to change our holiday traditions again this year. Instead of fighting these changes or getting upset, I’ll try to be more communicative with Steven.
I’ve thought about spending two or three days decorating instead of forcing it into one day. And maybe we don’t have to do as much decorating as we’ve done in the past. In living with ALS, I keep finding out that life is about expectations, and if I plan to take more time on a project, I won’t get so frustrated.
Reasons to Celebrate
We have many things to be thankful for this year. Steven is still alive and able to get around. God has blessed us with a wonderful support system and a son who keeps us thinking about tomorrow.
My belief in God is what sustains me on this earth and why I remain so positive. Life still has meaning and purpose.
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One last thought to leave you with: Steven and I think one reason that holidays are difficult is because they’re a poignant marker of progression. We’re trying not to make any holiday such a big deal anymore (kind of hard to do with a 5-year-old) and instead to celebrate every day. I try to cherish the memories of the past but also live in the present.
One thing ALS has taught me is not to plan too far into the future. I used to be such a planner that I missed out on too many todays.
I know others of you may have similar feelings about the holidays. My wish is that, when you read about my experience, you’ll know you aren’t alone. We’re never alone, thanks to MDA!
Denial is a powerful weapon in fighting a devastating disease or situation, particularly when it allows one to enjoy the gift of life. However, it can also be unhealthy both mentally and physically.
We define psychological denial as a person’s lack of acknowledgement of a particular predicament. The result is that others who might like to understand and support the person in his or her struggle aren’t able to do so.
A friend of ours who’s dealing with several chronic medical conditions recently asked us how we stay so positive in the face of ALS. The ensuing conversation went in many directions for all parties involved and also fostered further self-discovery.
Several issues seem to get in the way of quality of life when denial determines your attitude. Three primary issues are: chronic pain, a feeling that you’re not meeting family responsibilities, and a lack of understanding from family, friends and others in your support network.
Chronic Pain
Chronic pain, resulting from medical or other conditions, can be overmedicated or undermedicated. Whatever the situation, it can lead to a feeling of constant desperation and change in personality. It’s difficult to be yourself when you hurt or have too many chemicals in your body.
You obviously should discuss alternative forms of pain management with your doctor, and ask your doctor to explain all of the treatment options.
Recently, we had a conversation with a newly diagnosed ALS patient and he was told the usual: two to five years survival, don’t do anything more than three months in advance and get your affairs in order. Oh yeah, the only thing that might help is Rilutek.
Not one thing was mentioned about symptomatic relief of cramps, spasms, twitches and joint pain, or anti-depressants for his reaction to the most devastating news most people will receive in their lives.
We don’t have control over what this disease does to our bodies. We do have control over how it affects us.
Don’t deny your pain — physical or emotional. Find professionals who can give you the help you need.
Family Responsibilities
Family responsibilities are very subjective. The fact that we might want to do more than we physically can is a message that must be made known to those we love.
Children, for example, may just think we aren’t interested in them, when in fact, we’re simply unable to interact as much as we’d like. This may happen especially if they don’t know the full ramifications of the
ALS situation.
When Steven began showing symptoms of ALS, our son had sympathetic aches and pains. He’d say, "My legs are too tired to walk, too," until he understood that Daddy has a disease that makes his muscles not work right, but that Christopher doesn’t have this problem. He surprised us with his understanding and compassion and continues to do so daily.
If Christopher asks whether ALS will kill Steven, we can honestly say, "We don’t know." None of us are guaranteed tomorrow and the way the end comes isn’t foretold to us. There also may be a cure or treatment right around the corner that none of us are aware of.
In marriage, we have an opportunity to reach an emotional level not tapped before. Of course, the physical challenges of taking care of a spouse with ALS shouldn’t be minimized. However, if we try to reach out and emotionally enhance the relationship, we may be able to offset some of the physical difficulties.
Again, we can only change things in our control. And the first step may be for husband and wife to stop denying the nature of the problem, so they can honestly reach solutions together.
Understanding & Support
Understanding and support from our circle of family and friends is in large part something we can control. If we live in denial, it’s difficult to let others know what we’re dealing with and therefore impossible for them to understand our situations.
We have the opportunity to let others into our lives. Some of the details of that life may be too much for some and relationships may change for the worse. On the other hand, if we let people know our challenges and open ourselves up emotionally, new relationships will form with old friends and new acquaintances.
We feel it’s imperative to have a sense of purpose. It can be simple or complex as long as it’s there every morning to bring forth another day.
When Steven stopped working and the doctors suggested we get our affairs in order, we did so. After that, a hole was left as to what we should do for the rest of our lives, however long that may be. We found our purpose mostly with our son and each other, but also with our volunteer work with the MDA.
Simply, the process of finding a new purpose is a life mission itself and worth the challenge of waking up every day.
The experience of attending the national Jerry Lewis MDA Telethon in Hollywood is surreal. If you can imagine a television studio filled with pure love until the sides busted out, it would be close.
One might think that, after 38 years of Labor Day Telethons, the process might become mundane or almost calculated. On the contrary, this was our second year to go to the national show in person, and it was even more intense than the first.
The talent is so varied that it truly makes the Telethon one of the greatest shows on earth. The performers are generous with their time, volunteering just to help break last year’s record of donations.
And the amazing Jerry Lewis, Telethon star, somehow gets more passionate with each passing year. What you don’t see on TV is his personal reaction to each of the families who appear onstage to share their stories.
He knows it isn’t easy for them to open up during a difficult time in their lives in order to raise disease awareness and funds for research. He’s so touched by the families’ courage that at times we saw him bury his head in his hands in emotion — something not shared on camera. This passion comes from a man who’s defied the odds with his own health for decades and this year was struggling for every breath.
Our point in relaying this experience is to remind you that we don’t always realize who’s fighting for us. In MDA, each of us has an extended family that truly empathizes with what we’re going through.
We believe that all the neuromuscular diseases in MDA’s program must be somehow connected, and we find Telethon a wonderful time to think of others and not just ourselves. It’s also the time of year to remember that there are so many others facing adversity and to learn about ways they stay positive. We’re constantly learning and growing through every person we meet.
How special we should all feel that people care so much about us!
Many of the celebrities we met this year touched us emotionally, and we’d like to tell you about just a few. The beautiful and talented Jann Carl from "Entertainment Tonight" — the Telethon’s wonderful co-host — stole our hearts last year. Before each interview, she’d come over and talk to the family to ease their nervousness about being on TV in front of millions of viewers.
Jann is one of the classiest women we’ve ever met. After staying up for 21-plus hours, she mingled with all the families and took pictures for almost an hour after the show was over.
Another person we were thrilled to meet was Charo. What an amazing amount of energy she has. Her devotion to MDA is obvious from the nearly 25 years she’s performed on the Telethon and assisted the MDA community. When we met her she was very open and easy to talk to although a little difficult to understand!
Someone who especially impressed us this year is 15-year-old recording artist Billy Gilman, MDA’s national youth chairperson, and his managers.
Billy gives us faith in the young people who are our future. The children, grandchildren, nieces, nephews or friends’ children in our lives present us with an opportunity to teach some pertinent lessons, such as enjoying every day, making time to spend with the people they love, meeting new people and allowing them in their lives, along with all the other things we learn about life when we discover how easy it is to lose.
That mission alone can give us purpose that can keep us motivated and help us stay positive when we most desperately need to be. A focus on educating the younger generations keeps us from wallowing in our physical decline. Thanks, Billy, for taking a leadership role along with Mattie Stepanek in delivering these very important messages to our humanity’s future.
The Jerry Lewis MDA Telethon is about education, entertainment, hope and love. It gives us all these things that are essential for our ability to handle the challenge of ALS. And the Telethon lets us know that good people are working diligently to help us — not just on Labor Day but throughout the year.
With the Jerry Lewis MDA Telethon successfully completed for 2003, we thought it would be a good time to review an event we attended this summer. It was a fantastic example of how the funds MDA raises during the Telethon and throughout the year are used to benefit people with ALS.
In June we attended MDA’s conference, ALS Clinical Trials: The Challenge of the Next Century, in Tarrytown, N.Y. We were thrilled to have this opportunity to speak to more than 150 experts in clinical studies and other avenues of ALS research. (See "Drugs, Stem Cells, Trial Designs," July 2003, for a complete report on the conference.)
When we told our MDA ALS support group that we were going to speak to researchers, one member, then in the late stages of ALS, typed out a message for us to share. This spirited and positive woman wrote:
"Speed ‘em up."
That was the theme of the conference and the message we shared — the urgency of getting research findings into clinical trials and treatments as quickly as possible — because friends and loved ones are losing the battle.
Intense Conversation
At the first evening’s dinner, we sat with Stanley Appel, director of the Ronny & Linda Finger MDA/ALS Center at Baylor College of Medicine in Houston, and his wife, Joan; Jeffrey Rothstein, director of the MDA/ALS Center at Johns Hopkins University in Baltimore; Rothstein’s research fellow, several other doctors and a bio-statistician. We were thrilled to hear the intense conversation buzzing around the table as these experts discussed theories and results.
These scientists’ dedication to ALS research was unquestionable, and the evening provided us with a renewed outlook on their ongoing efforts. We were both deeply moved, and Jennifer tearfully thanked them all for their support.
We attended the next morning’s session, chaired by conference co-director Hiroshi Mitsumoto, who had invited us to New York. He’s co-director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia University in New York.
We were very impressed with the detail in each presentation as well as the wide range of subjects covered. It was evident to us that the overall goal of the event would be achieved, i.e., to advance the methods and procedures of ALS clinical studies and to minimize or eliminate the need to reinvent the wheel.
The afternoon session on lessons from studies in other diseases and clinical trials was testimony to the progress MDA scientists want to make in ALS. From our conversations and observations, we came away believing that the conference had a profound impact on the participants. Several scientists commented on the need for collaborative efforts among institutions and suggested our time at the podium could encourage this theme. They felt that adding a human element to the scientific process would be of great value.
Personal Message
The evening dinner celebrated Lou Gehrig’s 100th birthday (June 19). After an overview of Gehrig’s life and presentations by several researchers, we were introduced by Victor Wright, a member of MDA’s Board of Directors.
We told our story and pleaded for all parties to work together and share their findings, failures and successes. We told them about the message from our friend in Denver, and emphasized that we have friends dying from this disease.
We were honored to be invited to the conference and to share our thoughts of appreciation, encouragement and urgency with this influential group. We commend Dr. Mitsumoto and his co-chairman, Serge Przedborski, as well as the other organizers, presenters and participants for the time and energy they expended on this event.
On June 17, two days after we returned home from New York, our friend who had urged researchers to speed up lost her battle with ALS. Her loss was another sad reminder of how important it is to get the word out about ALS and how many people it truly affects.
Thank you to MDA for sponsoring the conference and for trusting us to add meaningful insight. It’s events like this that continue to provide us with hope that there will be a treatment or cure for ALS — maybe in time for Steven, and certainly for others who’ll be affected by this revolting disease in the near future.
More than 13 years ago, when I said, "I do," did I really know what I was in for? Or for that matter, do any of us? In my concept of marriage, it doesn’t matter.
The biggest unexpected event in our marriage was Steven’s diagnosis with ALS in 2001. Many things have changed for us since then, but Steven is still the same person; actually, he is an even deeper, stronger person now than he was before he had ALS.
Losses and Gains
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Initially, my greatest sense of loss was for our son, Christopher, then not quite 3 years old. I felt incredibly sad for him that he would have such a hard life without his father, and would miss so much of his father’s guidance. I’m still conflicted about whether to spend time with and take care of Steven or of Christopher. Steven says I should pick Christopher over him, but it isn’t always that easy.
Given our situation, I think Christopher will grow up to be a more dynamic, loving, caring, well-rounded person.
Now I don’t fight ALS, but I’ve learned to accept and embrace it. ALS is only a part of who we are, and it has been a gift of perspective for me.
Learning and Teaching
When Steven was working, we were fortunate enough to have one of our dream cars, a Mercedes-Benz. After our diagnosis and a financial reevaluation, we decided to sell the car.
A man looking to buy the car asked why we were selling it. We told him that Steven had ALS and gave a brief explanation.
When Steven left the room the man leaned over and whispered, "Is it contagious?" My answer was, "Of course not!" But at that point I knew I had my work cut out for me.
If this seemingly well-to-do and intelligent man had no idea whether ALS was contagious, then what did everyone else think about it? This awareness of the public’s lack of knowledge was one of the main driving forces for my MDA involvement.
Blessings and Time
I feel extremely blessed to live the life I’m living. The quality of our time together is well worth whatever we may lose in number of years.
Recently two of my friends from high school have gone through ugly divorces. I told them I’d rather be going through life with ALS than the terrible situations they’re dealing with.
I’m living with my soulmate, and, because of my faith, I know that our short time on this planet is only the tip of what is to come later. Steven and I have healthier communication. Our mental attitude toward each other is one of total respect for what the other feels and experiences.
We’re both adapting to physical and mental challenges every day. I find that when I try to replace Steven’s physical strength, it only leads to frustration, so I find people to help or I hire out as much as possible.
Mentally I’m good. I have no reason to be depressed, because I get to spend every day with the two most wonderful people I could imagine spending time with — Steven and Christopher.
My biggest challenge is not planning too far into the future. We only have today, and why not make it the best we can? I tell my friends and family that there will be a day when I’m sad, but not today, not while Steven is still around.
To my wonderful husband: You are my inspiration and my breath. I love to see you with our son and how motivating you are to others with or without ALS. This is truly your life’s calling. I’m forever indebted to you for making me a better person.
It will be a privilege and an honor to take care of you until the bitter end or until a treatment or cure is found. I feel this is what God put me on this earth to do. I’ll bet many other spouses feel the same!
I used to shy away from situations that dealt with difficult human emotions. Funerals were not attended and words of encouragement were left unsaid for fear of saying the wrong thing.
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After being diagnosed with ALS, I realized that it didn’t matter what people said. The fact that anything was said at all meant that someone cared. It was a lesson never to be forgotten.
Some of our friends were apprehensive about asking questions about ALS and my condition so we decided to disarm that immediately. When Jennifer and I informed people of my health, we’d immediately add, "There are no stupid questions you could ask or comments you could make that would bother us. Thank you for caring." The gift of open dialog was given to both parties without any awkward moments.
Gallows or dark humor has become a weapon we use quite often against ALS. With the open relationships we’ve developed around ALS, we’re able to use this weapon without offending or shocking … in most cases.
Getting Started …
My slow progression is an incredible blessing but a bit of a tease. I still find myself with enough strength or energy to start many things. My body allows me to begin, whether it’s cleaning out the garage, wrestling with Christopher or running errands with Jennifer.
Then comes the point of complete exhaustion and fatigue. It is almost like hitting a brick wall, and I feel I can’t take another step or lift a feather. This is extremely frustrating for someone who prides himself on completing the job.
I know that many of my comrades with ALS can relate and some are unable to even start projects or have playtime with children, grandchildren or pets.
My personal challenge will be to keep my positive attitude when my physical capabilities deteriorate even further. I’m confident this will be accomplished through my personal determination and network of support. No matter what stage of this illness I am in, reaching out to others will remain extremely valuable. I know I have much to learn about life and coping with the march of ALS’s attack, but my mental attitude is my biggest ally.
ALS as a Gift
The following paragraph is how I summed up my perspective to an audience of about 300 people at an MDA ALS gala Jennifer and I hosted in Denver recently, where we helped raise approximately $54,000 for MDA’s ALS research program:
"I am not guaranteed tomorrow. No one is. Once I was aware of that fact, my outlook on life focused to the present. I am busy trying to create memories of today that can be enjoyed as part of the past but not lamented. Tomorrow is still to be planned for but not obsessed over.
"ALS has been a gift of perspective to me. Some of us who have experienced ALS may not feel that we’ve been given a gift and rightfully so. It may be difficult to think of a gift as having your body’s complex biological wiring slowly disconnected until you can no longer move. Meanwhile, the mental capacities remain as vibrant as ever, if not more so.
"I have no blame for this disease. It is what it is and what I make of it. My legacy will be how I handled an insidious attack on my being and then used it to launch a mental assault on the disease. That legacy may begin tomorrow, but does anyone really know?"
After emphasizing the importance of support groups in last month’s column, we thought it appropriate to expand upon other aspects of support in our lives. The idea of accepting help isn’t comfortable for us and the prospect of asking for it is even more difficult.
Many of you who are facing ALS may at first resist the idea of asking for help, as we did. But we’ve found, through the thoughtfulness of an incredible network of friends and family, that people want and need to help others, including us.
People feel helpless when they see another hurting and are unable to assist them. After our diagnosis, countless people asked what they could do to help. Physically, because there weren’t a lot of immediate changes, we didn’t have a lot of requests for them.
We decided to move from our two-story house into a ranch-style, single-level home before we had to do it for the preservation of Steven’s leg muscles. The prospect of moving is never a fun one, but we were overwhelmed when some of Steven’s former co-workers from Sprint Communications coordinated with Graebel Van Lines to donate a moving package that included the laborious task of packing. We enthusiastically said yes to help in this form — and those who put this gift together seemed to get genuine pleasure in doing so.
On a person-to-person level it’s a little different, and we’re still learning. People in our network would offer to help in many aspects of our daily life. At first, we felt like we didn’t want to inconvenience anyone by accepting.
What we didn’t realize is the power of letting someone help and the mutual benefits doing so provides. We’re not talking about the full-blown tasks of personal caregiving. Mowing the lawn, grocery shopping, babysitting and moving heavy objects are just a few of the things that make a huge difference to us at this stage of the illness. It’s been our experience that when people are given the opportunity to help, it actually makes them feel good to play a part in fighting ALS.
It took us a little time to figure that out. Shortly after we were diagnosed, we were asked by our local MDA staff if we’d like to attend a fund-raising Lock-Up. While there, we introduced ourselves to the participants as clients of MDA and personally thanked them for what they were doing. And our gratitude was returned severalfold when we could see in their eyes the recognition that their efforts were making a difference on a personal level. Thanking them made us feel useful and appreciated, as well as grateful.
It’s important for us to remember that, just because someone offers help at one time, it isn’t guaranteed nor do we expect they can do the same things six months down the line. People’s lives are constantly changing, and we don’t try to "save" offers of help until we think we really need them.
When people learn that you have an ALS diagnosis, your relationships will change. Some people won’t know how to interact with you, but others’ devotion and caring will pleasantly surprise you. In our case we’ve been very fortunate to have both emotional and physical support come from more directions than we could have ever imagined.
As Steven’s symptoms progress, it wouldn’t surprise us if many of the people in our current support network become part of our "Share the Care" circle. These relationships are invaluable when dealing with ALS for reasons we’re still realizing. We’ve discovered that help is out there in places we would never have expected to find it. But it’s our responsibility to let the help happen.
A support group is a safe haven — and much more. Everyone whoattends a support group may get different things out of the meetings.
Right after being diagnosed, it was important for us to participate in our MDA/ALS support group because we were treading water in an uncertain time in our life. But we didn’t know what to expect from the meetings, and frankly we were a little hesitant to go for fear of being exposed to more than what we wanted to see.
Many Benefits
As it turns out, going to the MDA support group for people with ALS in the Denver area has become one of the highlights of our month. We’ve received two primary benefits — and many other fringe benefits.
First, since the beginning of our life with ALS, support groups have exposed us to people who were ALS veterans. They were filled with knowledge and advice on what things help, what doesn’t help and what they would change about their lives. We call learning from them "not having to reinvent the wheel."
Second, through our support group, we’ve been able to give back and feel useful to other families by providing our perspective and positive attitude.
The fringe benefits include forming new friendships and finding a safe place to talk about all the challenges and victories we experience with ALS, among people who understand firsthand.
The closeness and shared learning that arise from meeting regularly with other people are the main reasons for attending support group. But the outside information provided by the MDA coordinators in the form of guest speakers is also invaluable. At our meetings, we’ve had speakers and discussions covering a range of subjects, including gadgets, physical therapy, augmentative speech devices, hospice care, denial and grief counseling, insurance, assisted living, family issues, cultural issues and spiritual issues of all kinds.
There’s an important social aspect to support groups as well. We enjoy hearing about everyone’s trips, community involvement and even the dark humor that only families with ALS can truly appreciate. Humor is such an important coping mechanism with this disease.
Make It Your Own
The MDA support group in your community is yours for the taking. Make it your own and encourage others to attend. Our group includes patients, caregivers, mothers, fathers, sons, daughters, brothers, sisters and friends (some of the people with ALS don’t even live in the same state as the family members in our support group). You might be surprised as to what you get out of these gatherings.
If you’re planning to attend a support group meeting for the first time, check out the subject to be discussed. If it happens to be hospice, for example, that may be an important subject, but one you may not be ready for if you’re in the early stages of ALS. Perhaps you’d prefer to wait for the next meeting.
Or, if you don’t like the first meeting you attend, give it a second chance. These sessions are very dynamic in their content, so one month’s interactions could be entirely different from the next.
In closing, we’re grateful to MDA for facilitating these support groups for us. They’re an incredible tool to aid us in our life with ALS.
One thing we’ve learned in our new life: We can’t do it alone. MDA is there for us, not just leading the research efforts, which give us hope, but providing top-notch services as well, including support groups where we can be among friends.
Are you living with ALS or dying from ALS?
We all have a choice at this defining time in our lives. Readers of this newsletter have been touched by ALS, and those of us who have the disease must make some of the most difficult decisions we’ll ever face.
We’ve chosen to live with ALS. Redefining ourselves has been an evolving and necessary process in making that commitment. We had to let go of our old life and our old dreams, and create a new life with new dreams.
A large part of our new life is the opportunity to serve as co-chairpersons of MDA’s ALS Division. We’ve been given an incredible honor — to represent an amazing group of people. We don’t take this responsibility lightly.
When we tell people we feel oddly blessed by this disease, that sometimes takes them by surprise. We have a daily reminder of how fleeting life is and a reminder to take advantage of every day we’re given, whether it’s with each other, Christopher, family or friends. No one is guaranteed tomorrow.
The value of our relationships has been greatly enhanced over the last two years. One of the most important lessons we’re trying to teach our son is that people are defined by their character inside and not by the outside shell our bodies represent while we are on earth.
Our new mission in life is threefold. First, to raise public awareness of what ALS is and what its effects are. We prefer to call it ALS instead of Lou Gehrig’s disease, because it’s our experience that when Lou’s name is mentioned the general public assumes they are knowledgeable about ALS, but in reality they simply recognize the name. Of course, we’re very thankful for all the attention that’s been brought to ALS through his name.
Our second purpose is to raise funds for research, which is why the first point is so critical. People are more likely to open their wallets for a cause they can truly relate to.
Our third, and most important, purpose is to provide help and hope, whenever possible, to all the people affected by this disease.
Hope comes in many forms. Right after Steven was diagnosed, we clung to every word that was mentioned about ALS in the media; each bit of coverage meant that more people were learning about ALS, and that gave us hope that a treatment or cure was being actively pursued.
In order to accomplish our new goals we’ve opened up our lives. We’ve found that, once we tell our story, people don’t treat us the same, for better or worse. But changes in our relationships are worth it for such an important cause. We believe that, the more people we meet, the more lives we can positively touch.
We’d like to leave you with this thought: Not one doctor or 100 doctors can tell any of us how long we’ll live. We mustn’t cling to the words we heard when we were first diagnosed, predicting our future. Though we’re uncertain how Steven’s ALS will progress, we’d rather have the quality of a few short years than the quantity of numerous years without the meaning and purpose we have.
We believe that this disease is largely about your mental attitude. If you let it get the best of you, the disease wins.
So fight! Remember it’s how you chose to live, not how you died, that is your legacy.
