About Me

My photo
For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Tuesday, August 23, 2011

Post 31 - "I feel like a Phoenix rising from Arizona"

If you're anything like me and spend your time on the Internet researching ALS and visiting ALS websites and forums, you might have come across some good news in the past 48 hours. In a recent article published in the journal Nature, researchers at Northwestern University claim to have possibly found the cause of ALS (Cause of ALS is found, Northwestern team says). Although all the ALS websites and forums were abuzz, most people, like me, were cautiously optimistic. Then, this morning, I saw an online article on CNN and a video report by Dr. Sanjay Gupta (Groundbreaking new study finds a cause for Lou Gehrig's disease). I knew instantly that if Sanjay was reporting on it, then it had to be the real deal! After reading several articles on the new findings, I'm ready to remove the "cautiously" from my current optimistic feeling. I know I've made this statement before, but today, this is the best news I've heard regarding ALS... and many other people in the ALS community agree with me. If you do not feel like reading any of the articles, I will try to sum up for you, what they have found. Basically, the leading researcher has found a protein in every ALS patients he has studied over the past 25 years. This protein is responsible for picking up used and/or dead motor neurons (cells) within the body and brings them back to the brain, where they are cleaned up and "recycled" for use again. In ALS patients, it appears as though this protein is not working correctly and the used/dead motor neurons remain in the nerves and block new cells from carrying messages from the brain to the muscles. This new discovery will be beneficial to ALS patients if researchers could find a drug that can either restart this protein, or at least clear the nerves of the used/dead motor neurons. Think of it as that big recycling truck that comes around once every two weeks collecting your bottles. For most of you, the recycling truck takes your used bottles, brings them back to the recycling center where they can be cleaned up and used to make new bottles, which can now be used to carry new beverages. For me, that recycling truck never drives by my house picking up my recycle bottles. Since my recycling bucket is full, I cannot put any new bottles in and thus my recycling system is broken.

Realistically, what does this mean for me? That is hard to say. As I said before, optimistically, it is a wonderful thing, but realistically, who knows. Realistically, it could be another two or three years before a drug is developed and ready to be tested (For which I will not be eligible for the drug trial). After that, it would be a minimum of two years that a drug could be approved that could show some benefit for me. And that is assuming that the drug showed miraculous results immediately. Typically, it takes approximately 5 years to bring a drug to market, so it is quite possible that any drug treatment could be as much as eight years or more away. Also, as far as I'm concerned, this drug would probably only stop my progression and maybe provide me with minimal physical improvement. For me, my best bet for a return to normalcy would still probably lie with stem cells, which would be needed to replace all the motor neurons I have lost to date.

If it sounds as though I'm being negative, I can assure you, I'm not. As I said previously, this is the greatest news I've heard regarding ALS since my diagnosis, and I'm feeling optimistic about its outcome. I do however want to remain realistic. But then again, who knows. When I went to bed on Sunday night, as far as I knew, they were no closer to knowing the cause of ALS than they were 70 years ago. Then come Monday morning, they have a possible cause, and my man Sanjay is taking to the airwaves.

This great news has started me thinking about two things. First, what I like to call my Phoenix list (this is a name I just came up with and will have to do until I can think of something better. Your suggestions are welcome). This is opposite of a Bucket List... a list of things you would like to do before you "kick the bucket." I call this my Phoenix list, because like a Phoenix rising from the ashes, these are the things I would like to do when I am "reborn" and no longer battling ALS. Several things on this list, I have thought about over the last few years but in the last 24 hours, I have really given serious thought about the things I would like to do first, as soon as I am able. In no particular order, my Phoenix list includes:

  • Taking Tracey back to Napa, California. Tracey and I went to Napa, a little over three years ago for a long weekend. For anyone who has never gone, I would certainly suggest it. And this is coming from a non-wine drinker. During that trip, Tracey learned a lot about wine and since that time has talked about wanting to go back. Now that she is somewhat of a wine connoisseur. The least I can do is drive her around Napa for several days while she samples wine to her heart’s content.
  • Taking Tracey and the girls to Disney World. Anyone who knows me knows that I have a personal beef with the rat and that Disney World is the last place I would ever personally choose to go. So far, however, we have gone twice. Both times with family, at my insistence, so that they would be able to help us (and when I say us, obviously, I mean, Tracey) with the kids. It would be nice to go with just the four of us, since Tracey and the girls love Disney World, and do the "family" thing.
  • Taking Tracey and the girls camping in Cape Cod. Before we were married, Tracey and I had gone camping several times in Provincetown, Massachusetts. We looked forward to it every summer. We would spend days on the beach, riding bikes and going whale watching. In fact, we got engaged on the way home from one of our Cape Cod camping trips. After we were married, we talked about taking family vacations in Cape Cod.
  • Before heading up to Cape Cod, I would just like to pitch my tent in the backyard and spend a night camping out with the girls. I think they would have a great time.
  • I would like to make Tracey breakfast in bed, every Sunday morning for a year. Additionally, I would make sure that I or the girls did not bother her to at least noon.
Personally, some things that I would like to do included:
  • Buy a new pair of hockey skates. I look forward to that day when I can lace them up, hit the ice, and skate around the rink. To me, there is nothing quite like it when your feet first hit the ice and you take that first lap around. Second to getting back out on the ice, of course, would be to start playing hockey again.
  • Go to the batting cages. Just like first getting on the ice, there is nothing like the feeling of squarely hitting a ball with a bat and making solid contact. I would like to swing until my arms got sore and tired. After that, join a softball league. 
  • Take a hockey road trip. Back in January 2008, me and two friends hit the road and visited three cities in four nights (Pittsburgh, Buffalo, and Toronto), taking in three hockey games. We also lucked out because the one night we weren't seeing a hockey game, Rutgers happened to be in Toronto playing in a football bowl game. Besides the fun me and my friends had, I got to see some old college friends, and fraternity brothers while in Toronto.
  • A guy's weekend in Vegas. Need I say more?
The second thing that I've been thinking a lot about during the past 24 hours is the upcoming ALS walk in Philadelphia in November. Since my diagnosis almost 5 years ago, never has the possibility of a treatment or a cure ever been so real and so close. I feel now that I have to do more than ever to make the above a reality.We already have over 15 people signed up to walk and are well on our way to our first $1000.  If you're interested in signing up to walk with us, and raising money, or would just like to assist in raising money or would just simply like to make a donation, you can do so by selecting this ALS Wing Fighter link.Thank you to those of you who have already signed up to walk and/or have donated to the cause.


No comments:

Post a Comment