Today (June 11) I speak to the Rotary Club of Macon about Parkinson’s.
My planned remarks contained nothing about the suicide June 8 of Anthony Bourdain, the famed food writer and TV personality. They now do.
Media reports link Bourdain’s death to his recent Parkinson’s. I cannot independently verify the connection, but the wealth of detail lends credence to the story.
Bourdain’s death is eerily similar to the circumstances of Robin Williams’ suicide. It occurred after his diagnosis with an especially lethal type of Parkinson’s: Lewy body disease.
(See Corey King’s fine post about Williams. King is my Davis Phinney Ambassador colleague.)
The connection between Bourdain and my message to Rotary members is this: there is too often a dangerous lack of information given to Parkinson’s patients at diagnosis and afterwards.
I write about this toxic disconnect in “Counterpunch: Duking It Out With Parkinson’s, the forthcoming book co-authored with by my wife.
Here’s what I recount about the day of my diagnosis in 2014:
“The PA sketched instructions on paper for phasing in the medication (Sinemet) over a month. See the doctor in three months, she said, making the appointment.
“That was it.
“No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
“I was figuratively shown the door, alone in the parking lot with the malady that would shape the rest of my days. The parking lot was for a university medical center designated a National Center of Excellence for PD care.”
The information void for Parkinson’s sufferers is patient neglect at the highest order. It must end. Now.