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.

 

Post 30 -Courage, Faith, Strength and Hope

 



Getting my birthday gift from Emily

I don't know about you, but it seems like the summer is flying by for me. It seems like it was just a few days ago I was telling you all about my Fourth of July shore house experience. Since that time, I've celebrated a birthday (my 43rd, for those of you counting) and a wedding anniversary (my 8th). Overall, July and the first two weeks of August have not been easy. Whether it is the weather or something else, as of late, I have been experiencing incredible weakness and fatigue. After spending five days at the shore in late July, in which I spent most of the time asleep with a stomach virus, low-grade fevers and my traditional fatigue and weakness, I decided to pay my primary physician a visit. To make a long story short, blood tests indicated that I had a possible blood clot, some fluid around my heart, and a possible diagnosis of rheumatoid arthritis. After some follow-up testing it was determined that a blood clot did not exist. I'm currently in the process of scheduling appointments with a cardiologist and a rheumatologist. After doing some research on rheumatoid arthritis, I've come to find out that symptoms can include fatigue, loss of energy, lack of appetite, muscle and joint aches, and stiffness. Muscle and joint stiffness are usually most notable in the morning and after periods of inactivity. It can also cause weakness of the bones as well as the muscles. Just what I needed, right? These symptoms sound eerily familiar. I was kind of hoping that the fatigue, lack of energy, and muscle pain were just some symptoms of menopause (I saw it on a commercial) but my doctor has assured me that that is not the case.





Some shore time with Sydney





Great Adventure

Although I've taken very little vacation time over the summer, I tried to make the most of it by spending a lot of time with Tracey and the girls. Besides spending some time down the shore, we have also been to Great Adventure, the Please Touch Museum in Philadelphia, Storybook Land, Monmouth racetrack (it was too hard to sneak the girls into the casinos in Atlantic City, and you're never too young to learn how to gamble), and the movies. Additionally, we have spent a good many days at my sister’s house enjoying her pool. One trip that Tracey and I took without the girls was to my quarterly appointment at the ALS clinic in Philadelphia. This trip was somewhat difficult for me than those of the past. Previously, I had always seen the other ALS patients in the waiting room and around the office and had felt somewhat lucky that my disease had not progressed to their level, hoping it would not progress to their level. This time, however it was the other patients in the office who were walking and using their arms and legs in ways that I no longer can and I could not help but think they were looking at me, hoping that they would never progress to my level. Otherwise, this visit was typical of all the rest. I did lose another 5 pounds, which the doctor was not happy about and my breathing score dropped about eight points, which again, they did not seem so concerned about. I had my usual heated "discussion" with my neurologist regarding my vital capacity (breathing) score, drug trial exclusion criteria, and the apparent worthlessness to date of ALS research. By now, she has come to expect my ranting and raving. Then, I was on my way home. No better, no worse... and continually frustrated. 

Monmouth Park





I can honestly say that I am somewhat glad that summer is finally coming to an end. The heat and humidity kicked my ass and forced me to bunker down in the air-conditioning (just so you know, I hate air-conditioning) way too many days that I would have cared for. And although the morning still remains the toughest part of my day and getting up for work and getting out of the house seems to get incrementally harder each day, as the day goes on, I seem to continue to feel better and function better on those days that I get up and get moving. The end of the day, of course, is another story. Because of the heat, the fatigue, the weakness and whatever else seems to be bothering me on any particular day, I have typically been getting into bed between 7:30 PM and 8 PM on most nights, over the course of the last six weeks. Still, when I have to get up and out of bed, whether it is for work or for a family excursion, thankfully, on most mornings, I'm still able to do it. I am hoping that once September rolls around and my regular work schedule once again becomes consistent, that I will be able to get into some sort of groove.



Not only am I looking forward to a new school year, and hopefully, some sort of rejuvenation, but I am also looking forward to Oktoberfest beer and this year's ALS walk in Philadelphia. I have previously talked about the tremendous turnout and support I received last year, when we walked for the first time. Just to refresh your memory, Tracey and I were hoping that we could get about 25 people to join us and that we would be able to raise $2500. It turns out that our estimate was way off. Instead, over 100 people walked with me as an ALS Wing Fighter, and together we raised almost $15,000. Thinking about it nine months later, I'm still overwhelmed by the love, support and generosity of my family and friends. When I look back on that day, I remember the feeling of empowerment and hopefulness that I felt last November. Although I only walked a small portion of the route, I remember telling people that day that I felt like I could walk the full 2 miles. I look forward to experiencing that once again, come this November.



Storybook Land



Once again, I welcome you all to join me and my family to walk with us at this year's ALS walk in Philadelphia, taking place again at Citizens Bank Park on November 5 to help raise funds for ALS research and patient support. We will once again be registered under the name of the ALS Wing Fighters. You can register to walk with us by selecting the following link (ALS walk). If you are unable to walk with us on that day, please consider assisting us by signing up as a virtual Walker and helping to raise funds or by making a donation to our team. Either way, your support would be greatly appreciated. For additional information about the walk, and to see some pictures of our team, I invite you to watch the following video, courtesy of my friends Christine and Larry (Episode V - The ALS Wing Fighters Continue to Strike Back).