I’ve been reading about the importance of hope, and ran across this article from The Washington Post, published last week. It’s certainly worth reading. The author, Daniel Stark, has written extensively about his battle with Parkinson’s Disease (PD). Though it’s about PD, I think the principles apply to any neurodegenerative disorder.
Here’s a link: Living Large With Parkinson’s
Robin
Brain Support Network CEO
Living Large With Parkinson’s
It’s A Messy Path Ahead, the Author Finds — But Better With a Map
By Daniel Stark
Special to The Washington Post
Tuesday, June 21, 2005; Page HE01
Excerpt:
When I was diagnosed with Parkinson’s disease, I had little knowledge of what lay ahead. Most people share that ignorance. Though the reactions of the few I told about my condition were typically intense, with exclamations of great pity or sorrow, this was often followed by a very honest “What exactly is Parkinson’s?”
This proved harder to answer than you’d think. Doctors seemed reluctant to say much. I was told that everyone’s experience was different. But it seemed a manageable disease, at least to me, at least then.
For six years after my diagnosis, I maintained my frenetic lifestyle, which mixed big-corporation lawyering with a typically busy family life.
Then came a rapid acceleration of symptoms. I was unprepared for the ferocity of the assault. For six years I had ingested an increasingly abundant cornucopia of pharmaceutical industry produce. But the length of time I got relief from a dose dropped from about four hours to less than 1 1/2 .When drugs were not effective my speech became soft and stilted, and my back became the pain epicenter of my world, my muscles contracting into a big knot. The pain became intense if I stayed in bed more than an hour or two, making sleep something that other people did.