06-7-2009 - ALS - (sorry this is a sad one)

My mood while writing this blog: Sad

Prior to the past year, I had no clue what a horrible, debilitating disease ALS could be. A year ago, my uncle was healthy man in his early 40's. He had just landed a dream job and the sky was the limit. He began having some strange symptoms- muscle spasms, slurred speech, and just wasn't himself. By the fall, everyone convinced him something just wasn't right and he needed to go to a doctor. When he first went to the nuerologist, there were a few diseases that were a possibility- parkinsons, horne's disease, or ALS. After extensive testing, our family received the worst diagnosis, it was ALS and he was already progressing into the advanced stages. We then learned that this disease still has no cure, or treatment that can really slow it down. He wasn't given but a year or so to live. It has been very hard over the past few months to watch him deteriorate so quickly. He has lost 60+ lbs, can no longer form words, and as of last week will be confined to a wheel chair. At Christmas he was still himself, my funny uncle who kept us all laughing. I saw him about a month ago and now he is more like a 5 year old. He just giggles all the time. Today brought even worse news, he had a very rough night. He hasn't been able to eat in the past 2 days because he has lost his ability to swallow, this is one of the harshest effects of the disease. Not only can he not swallow, it is getting difficult for him to breathe on his own as well. He doesn't understand what is going on, and my Granny is having an especially hard time preparing to lose another child. The next few weeks/months are going to be very hard on my family. Sorry for the sad story, but just needed a place to tell the story and even bringing it up within my family is a difficult thing to do. My Granny calls my mom, my mom calls me, and well I decided to share it here. While this is hard, we are very blessed to have had the time we have had with him. I keep trying to stress that to my mom, that she needs to be strong for my Granny and help her understand that we need to enjoy every minute we have left with him. My Granny still has this hope that the diagnosis was wrong and that there is a miracle cure just around the corner. The MLB honored Lou Gehrig on July 4th, it was the 70th anniversary of his farewell speech. His personal letters throughout the disease have been released and I think it is a great tool to allow people to understand the disease. It seems the more awareness it receives, then more work can be done on the research level. Here is a link to the letters http://espn.go.com/mlb/flash/gehrigletters .