As most of my friends know, last October my mom died from Lou Gehrig’s disease, officially known as A.L.S. I moved to Bellingham for a year to help take care of her. A.L.S. is an ugly illness. While patients with A.L.S. don’t typically experience a lot of pain, they do lose independence and quality of life. Mom had to eat through a tube, wear a brace to hold her head up, and talk with a computer. I heard that computer so much the last year that I don’t remember much of mom’s actual voice.
My part to see that as few people go through this as possible is to support the Evergreen Chapter of the A.L.S. Association. They fund research into A.L.S. and lobby on behalf of patients. For those who are afflicted, including mom, the A.L.S.A. was a lifeline of support. That computer? Provided by the A.L.S.A. Her hospital bed? Provided by the A.L.S.A. When the family first met with hospice, Mary from the A.L.S.A. was there. When mom saw specialists at Virginia Mason’s neurology center, Mary from the A.L.S.A. was there.
The A.L.S.A. holds the 2009 Walk to Defeat A.L.S.A. in Bellingham in September. Until then, I’m going to write a lot about A.L.S. to educate and to get people to donate money. My family has a team, and I’ve set up a page for donations.
If you donate money, I’ll give you a book. I need shelf space, so why not solve two problems at the same time. Books aren’t just the crappy books either: advance reading copies, autographed copies, hardcovers. Here’s the list of books. More information about mom, how to donate, and how to get your book at my walk page.