Thursday, February 04, 2010

Walk to Defeat ALS

On June 5, 1996, my family got the devastating news that my mom had been diagnosed with Amyotrophic Lateral Sclerosis, better known as Lou Gehrig's disease. Average life expectancy after diagnosis was 2 1/2 years, preceded by slow paralysis of the entire body. There are exceptions to this, of course - noted physicist Stephen Hawking, for one - but the outlook for my mother was not good as she was already having issues with her walking, her balance, and her swallowing. Mom and I sat together in the neurologist's office as he delivered this difficult news, and one of the few coherent questions I could ask was, "How?" His answer was that there was no rhyme or reason to this disease, and it could strike anybody, at any time, at any age. He then added (as I later wrote down in my journal), "We've noticed it always seems to strike nice people."

Unfortunately, my dear, sweet mom was not one of the lucky ones - a few months later she was bedridden and on a respirator, unable to walk or breathe on her own. She lived the last 18 months of her life tied to a bed and a machine, and passed away less than 2 years after her initial diagnosis. I remember thinking very clearly how much we take for granted the simple act of walking - the ability to stand up and walk to the front door, the fridge, the dinner table, the yard. It was then I made up my mind to start walking daily for exercise - quite simply, because my mom couldn't. Twelve years later I still do it, and plan on doing it until I can't anymore, because I'm so very conscious of how quickly the ability to walk can be taken away.

This year, I'm participating in the annual Florida Walk to Defeat ALS, which will be held on March 13, 2010. One of my sisters is a Team Captain for her firm, and has already raised almost $400.00 for the cause - you can see her page and her progress at . You don't have to walk to donate.

Keep in mind that every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. No racial, ethnic or socioeconomic boundaries.

And no cure. Yet.


Danielle said...

Terri, I lost my sainted mother-in-law, Phyllis Bourgeois, to ALS in 2005. There are no words to convey the sense of loss I still carry with me, and probably always will. ALS is an especially cruel disease (there's no such thing as a nice disease, is there?) , slowly paralyzing each and every muscle until even involuntary movements, like breathing, are impossible. Compounding this cruelty is that, as your mom's doctor noted, it always strikes the nice people.

My mother-in-law was more like a mother to me, and I treasure the 10 years that I had with her. Still, 62 is way too early to die.

Please let me know if you are taking sponsors. My husband and I would love to donate. If not, we're happy to sponsor your sister. I hope that one day soon we'll be hearing about the 1st Annual ALS Erradication Celebration Walk.

Warm regards,

Danielle (and Jay) Bourgeois
Houston, TX

Terri Garey said...

Hi Dani,

Never quite goes away, does it? 62 is way too young to die - your mother-in-law and my mom should still be here with us.

You can donate on my sister Pam's page at I really appreciate it, and please give Jay my best wishes.

This is why I write (sometimes) ironic stuff about life and death. We can't avoid either one of them, and sometimes you just gotta laugh to get through it. :-)