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!
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……
