Monday, June 05, 2006
I've been battling with ALS (Lou Gehrig's disease) for almost two years now. I found out for sure in late Jan 2005. It started in Aug of 2004 with lower leg and feet cramps. A month later, fasciculations (muscle twitching) began all over my body. Then my left hand started to weaken, particularly my left index finger. My left side of my body was weakening faster than my right which was good since I am right handed.
My wife and I are dealing with it the best we can. We're pretty much over the shock now.
At the moment, I can feed myself but holding a glass up to my lips is a struggle so I use a straw. In late March 2006, I had a feeding tube put in my stomach as a preventive measure since I'm starting to have trouble swallowing. I can standup but not for long so I use a power wheelchair and on occasion I use a walker.
I stepped down from management at FedEx in Nov 2005 due my weakening voice and not being able to get around as well. I was working full time at FedEx until mid-May 2006. On June 1st, I went on disability. I prefer to think of it as 'early retirement'.
People have told me all my life that I have lots of patience. But I find I'm getting frustrated with not being able to do all I want to do. Last year I gave up hiking and camping with the family and the Boy Scouts. I've always been an outdoors man. At home, I love to cook, but without the arm and hand strength it's difficult. Each day I'm thankful for what I can still do for myself. My independence is very important to me.
My spirits and hopes are high. In fact, the picture above is me on my first 'early retirement' adventure. I've always felt 'the glass is half full'. In addition to my wife, her family, my Mom and Sisters have been giving me great support. Of course, I'm hoping they will announce a treatment or cure in 2006.