This is a comment I cut from Mona Johnson’s,blog page. She is in my occasionally humble opinion the owner/operator of one of the finest lay-person’s blog about Alzheimer’s disease on the planet. She is bright, very bright, focused, passionate, and unlike yours truly she values brevity in her crystal clear writing. Check out The Tangled Neuron. And - Three cheers for Jackie, someone who stands up and speaks out! 

 

After talking with Jackie Christensen, I am 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 is not just a matter of her personal preferences - it is more a matter of her right to be directly involved in decisions and developments that affect her. She notes that most Parkinson’s organizations do not 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.”