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.
Beginning with the past two years, this time of year has become increasingly difficult for me. For most, with warmer weather, come spring projects. At this time last year, I was still able do some small things both inside and outside the house, including mowing the lawn. By the time last fall came around, almost all of the responsibility fell on Tracey. In the past, the division of household chores was simple. Tracey took care of the inside and I took care of the outside. Unfortunately, for close to two years now, I have been unable to keep up my side of the bargain. My show shoveling responsibilities ended in the winter of 09 when I wound up falling while attempting to shovel and I lay in the snow for about 15 minutes like a turtle on its back. Therefore, this past winter was all Tracey. Needless to say, raising two small children and caring for a physically disabled husband (Take note, the first time I've ever referred to myself as physically disabled), does not leave Tracey with much time for work in and around the house.
Over 100 strong. Go ALS Wing Fighters!
During the past several years we have been fortunate to get a lot of great help and support from family and friends. Family and friends were there assisting and supporting at our pretzel sale, as I well as our bake sale. Together, we were able to raise almost $700. At the ALS walk in Philadelphia last November,(and it still blows my mind... I can't thank you all enough!) over 100 friends and family members walked with me around Citizens Bank Park. Altogether, we raised over $15,000, to fund ALS research and support families battling ALS.
Since my diagnosis, we have also been lucky to get some "specialized" help from family members. For the better part of two years, Tracey's father has taken over most of my inside responsibilities. Everything from replacing batteries in the kids toys to changing light bulbs and other small household repairs. Many times over the past three years, we have gazed out of our window to see a stranger walking around our yard, only to soon realize that it was my brother-in-law, Joe. We would often find him on the roof cleaning out the storm gutters, cleaning up the yard, or doing other repairs, unbeknownst to us that he was even coming over to our house. During this past winter we would hear a strange noise at night only to find him out on our driveway with his snow blower, finishing up the job that Tracey always started. Additionally, both of our mothers are always there when we need a babysitter and my sister Cari, has also been a tremendous help, by not only babysitting and helping out with baths, but by always bringing over many a meal. Two weeks ago, Tracey's brother, Walt, told Tracey that he was taking a day off from work and was planning to come to our house with his chainsaw and hedge cutters to clean up our yard from a wild and windy winter. He ended up staying most of the day and helped with a lot more than just yard work. At work, coworkers have been assisting me by getting things out of my car, including me. They have gone out of their way to bring things to my office and have assisted me with at times when I needed it.
Many people, over the past four years, have said to Tracey and I "let me know if I can do anything to help." But the fact of the matter is, asking people for help has never been a particular easy thing for either one of us to do. We are both much more familiar with playing the role of “helper" then "helpee." Although we always graciously appreciate any and all offers to help, it is not something either of us feels comfortable doing. I have previously talked about how asking for, and accepting help, has always been difficult for me, which has still not changed. But I now find myself having to start doing this at times out of necessity, which does not make it any easier. The majority of the disagreements between Tracey and me are about my unwillingness to ask for or accept help from people, including her. If I am truly going to make life easier for myself, I will undoubtedly need to start relying more and more on other people for assistance. Just the thought of that makes me a little bit sad, which I'm sure is a major contributing factor to my reluctance in seeking help. All of those acts of assistance that I mentioned above had one thing in common. At no time did any of those people ask us if they could help, they just did it, and for this Tracey and I have been truly grateful. For them, it has not been a matter of "call me when you need me," or "let me know what I can do to help," they just basically showed up at our door, or in my office, offering assistance. In the immortal words of Robert Frost (let's hear it from all you East Brunswick-Robert Frost elementary school graduates), “... and that has made all the difference."
Then,... (circa 1998)
This past Thursday night, I met up with a bunch of friends who I played hockey with, some for the better part of 10 years. The last time we all skated together was almost 5 years ago. This was only the second time since early November that I left the house without Tracey by my side. Spurred on by an old team picture that was posted on Facebook, it was suggested by someone that we all get together for a couple drinks. This was not something that I would have typically said "yes" to, but I was not really given a choice. Three of the five guys who were going out that night told me they would come and pick me up and take me home. Not one of them asked me if I needed a ride, they were just there to provide it (That's the type of guys hockey players are). We hung out for about three hours, drank some beer, watched some hockey games, reminisced about some old times, and made fun of each other like we used to do. We all had a great time. I'm already looking forward to doing it again.