Welcome to my blog. I have had ALS for 10 years now.

Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Monday, August 30, 2010

On Elizabeth in Los Angeles

ALS was unlike anything she had experienced. The more moderate symptoms and sensations — the yawning, sneezing, hiccupping — she could handle, but the involuntary fits of laughing and crying were a bit much. Tears were hard to explain to the clerk who simply wanted to know "Paper or plastic?"

One day she put a key in a lock and couldn't understand why it didn't turn. She pulled it out. It was the right key, wasn't it? She tried again. The lock had to be broken. Then it dawned on her: She had lost the strength in her fingers.

The disease became a hundred little battles waged in a losing war. She taught herself a new way to use a paper clip and light a match, and with the help of a speaking device attached to her computer, she could type and it would talk.

Eating was her first major defeat. As her tongue stopped working, she changed her diet to smoothies and oatmeal. Still she choked, and her doctor worried she might aspirate. A feeding tube was prescribed.

She missed her salads but made do, injecting a regular diet of Ensure and protein supplements into her stomach. Life, she explained to a friend, does not have to be lived in the extreme. "You can be fully alive by just being alive in your body."

Chocolate was a clear victory. If she tucked a Hershey's Kiss into her right cheek, lay down on her side and let it melt, she could still savor its sweetness.

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