When my father was in his late 60s, he started having trouble finding words. As his memory and thinking went downhill, so did his speech. I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word.
After talking with Jackie Christensen, I’m not so sure that was a good idea. I met Jackie last week at the FDA Patient Representative Workshop we both were attending. She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.
This isn’t just a matter of her personal preferences – it’s more a matter of her right to be directly involved in decisions and developments that affect her. She notes that most Parkinson’s organizations don’t have spokespeople who have the disease. “I feel as if the voices of those of us who live with the disease -- the main characters in this tragicomedy that is Parkinson's -- are being stifled,” she says. A lot of what she says might apply to Alzheimer’s and dementia, don’t you think?
Note: Jackie is the author of The First Year: Parkinson's Disease: An Essential Guide for the Newly Diagnosed and a new book Life With a Battery-Operated Brain - A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease She blogs about Parkinson’s and deep brain stimulation at Living “Life with a Battery-Operated Brain.”