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
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!
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!
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.
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.
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!
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.
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.
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……
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.
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.
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.
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.
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.
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.
