Post 16 - "The New Phone Book Is Here, the New Phone Book Is Here!"



The official ALS Wing Fighters logo



Less than 10 days to go, to our first ALS walk, and the excitement along with the anticipation is starting to build. Our team T-shirts arrived late last week, and although not as exciting as the "new phone book.", it's exciting nonetheless.  Three big "Thank You's" are due here, first to Kristen Ludman for getting us our first, and currently only corporate sponsor, Tiki Hut Tans, to help subsidize the cost of the T-shirts. Secondly, I would like to thank my best friend Jeff for donating a photo shoot/family portrait, courtesy of Jeff Tisman photography (portraits of specialty), as an incentive to increase donations.  Lastly, I would like to thank Mike Trunzo for designing the logo and working with the vendor to get it printed. We may not be the overall top fundraising team but we certainly will have the coolest T-shirts! Anybody who is still interested in donating to our walk team can do so through our team website by clicking on the following link: ALS Wing Fighters. Actually, now that I think about it, I think a few more "Thank You’s" are due. I want to thank my friend Becky, her husband Eric and their two children, Samara and Jacoby for walking and raising funds earlier this month out in Seattle, Washington.  Becky raised over $600.  In addition to Becky, I wanted to also thank everybody who has signed up to walk, and who have been assisting us by raising funds, as well, as everybody who has donated. As of today's date, we have raised slightly more than $8500! That is about $6000 more than I thought we would raise. Also, I want to thank Tracey who has spearheaded this effort, on top of everything else that she has going, and continues to amaze me every day with her support, strength and optimism.



ALS Wing Fighters - West Coast Style
Seattle, Washington
October, 2010


Last week was another tough week for me as I attempted to fight off a head cold that had affected Tracey and the girls a week prior. Actually, I think he did a pretty good job fighting it off as it sort of came and went over a 48-hour period. It was the type of cold where you just want to put your head down on the pillow and go to sleep. Not too much different from my every day. It did however make me that much weaker, which I did not think was possible. I experienced much more difficulty getting up out of chairs and walking. Although I did not have any falls, this was the most unsteady I have felt on my feet since my diagnosis. Obviously, my concern was that this was a sign of things to come. I am constantly saying to myself, and have since day one, that if this is the worst that it gets, then I can live with this. There have been some documented cases, although extremely rare, where progression suddenly stops. Although I am hopeful for the best, I feel that if the disease were to stop progressing, then that would be a happy medium, and one which I would gladly accept.

Two weeks ago, on October 14, I had my latest clinic visit at the University of Pennsylvania Hospital. As far as clinic visits go, this was one of the most un-eventful visits I have had since I started going over three years ago. My FSR score (Functional Rating Scale-see post #7 on July 29, 2010) is down to a 32, which signifies my largest drop (3 points) between visits. On the plus side, my FVC (Functional Vital Capacity, which I also talked about in post #7 on July 29, 2010) was up five points to 92%. Once again, in the opinion of the experts, I'm breathing and swallowing so everything is grand. In reality, it is becoming increasingly difficult to walk, even with wearing my leg braces. I can no longer go up and down steps without assistance, or at least using a hand rail, and even then, I can still only manage about four or five steps before I need to take a little break. As I stated in my last post, my left arm/hand is almost completely useless. There has been no improvement.

When I got to my visit this time they had asked me if I minded if a couple of nursing students could sit in during my visit. I was partly convinced that they did this on purpose, to ensure that I was on my best behavior and not my usual hostile, argument itself. There were a couple of moments during the visit that did manage to raise my blood pressure. First, was when I met with the occupational and physical therapists. We had our usual discussion/argument regarding conservation of energy, which ultimately led to our usual conversation over the use of a wheelchair. Although I am closer to the point of using a wheelchair then I would probably like to admit, I'm still not ready to take that next step (or seat), as it were. There have been times recently, where I have found myself browsing wheelchair websites so maybe I am a little closer to accepting it then even I am willing to admit.

After visiting with the occupational and physical therapists, it was time to meet with the neurologist. This visit is beginning to seem a lot like the movie Groundhog Day. In fact, before she came into the room, I explained to the student nurses how my visit will typically end with an "everything is great-you’re breathing and swallowing. See you in three months" and although my neurologist didn't quite put it that way, I did get my obligatory thumbs up. We briefly discussed any potential clinical trials, of which she said there were two possibly starting sometime in the winter. Although I remain hopeful, the reality is that it will be very difficult for me to get into a clinical trial due to my onset and symptom date. For the most part, the majority of clinical trials for ALS patients exclude patients, whose official diagnosis date or symptom onset date, is greater than three years. For better or for worse, I initially reported my symptom onset date as May 2006. My first ALS diagnosis was in March 2007 with a secondary confirming diagnosis in November 2007. So, depending on how you want to look at, I'm officially somewhere between three and four years into this thing.