Some facts you should know about ALS.
ALS involves muscle weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control speech, swallowing and later breathing.
Approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time.
The life expectancy of an ALS patient averages about two to five years from the time of diagnosis.
There is no CURE!
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.
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
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.
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.
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).