Monday, April 21, 2014

Notes from the Twilight Zone: I am not alone

More Bad News for Boomers

In “Have You Lost Your Mind?” (p. 32 of this weeks New Yorker magazine), Michael Kinsley explores the possible mental effects of Parkinson’s disease, a condition he was diagnosed with twenty years ago. Kinsley writes that following his diagnosis, after several weeks of quietly freaking out, “it occurred to me to wonder whether it would affect my brain.” Kinsley asked his neurologist. “He answered carefully, ‘Well, after a few years you may lose your edge,’ ” Kinsley writes. Kinsley continues, “My edge is how I make a living. More than that: my edge is my claim on the world. It’s why people are my friends, why they invite me over for dinner, perhaps why they marry me.” In the two decades since Kinsley’s diagnosis—during which his physical symptoms have advanced quite slowly—“there has been a revolution in thinking” about Parkinson’s disease. While Parkinson’s has “always been classified as a ‘movement disorder,’ ” neurologists now believe that deficits in cognition and memory can predate the physical symptoms that lead to diagnosis of the disease. Wondering whether he might be experiencing the mental effects without being aware of it, Kinsley signed up for a cognitive assessment. “My motive was part scientific inquiry, part hypochondria, and part the journalist’s reaction to any interesting development—‘This would make a great piece,’ ” Kinsley writes. His results in the test over all were “not bad, but not great.” He’d been “off the charts” when he took a similar assessment, nearly a decade before. “This time, I did poorly in exactly the categories where someone who’s had Parkinson’s for twenty years would be expected to do poorly,” Kinsley writes.  “Parkinson’s is a degenerative disease, so things are not likely to get better.” But, he writes, they’re really not so bad now. “How bad could a symptom be if it takes a five-hour test to find it?” Please see this link:

For those who follow my blog, my interest in this article will be obvious.  Many of the comments in this article resonate with the message in my new Window of Opportunity book.  

I have been thinking about why I wrote this book, which I have tried to explain previously.  It certainly is not meant to create anxiety for PWP's, care partners or their families.  The fact is that most of them are already aware of PD-related cognition issues, either because they have read about them or have experienced them, and are, I believe, interested in knowing more.  I hope that the book sheds light on this discussion that it will be interesting/helpful.  Additionally, by sharing how Linda and I have chosen to deal with these problems, it will give others ideas about how they can approach their own challenges and see that it is possible to continue a happy, productive, and fulfilling life.

I was grateful to receive the following quote from Dr. Michael Okun, Professor of Neurology at University of Florida regarding my book:

"This book by Kirk Hall with a forward by Benzi Kluger, M.D. offers a real-world honest and helpful window into the life of a Parkinson's disease patient who is experiencing cognitive challenges.  There are many useful tips, and also many great stories that will provide comfort to both Parkinson's disease patients and caregivers.  This is just terrific and a really important contribution to the literature.   I highly recommend the book."

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