IN MY SHOES: What It’s Like To Have Parkinson’s Disease
In an op-ed for The Washington Post Jackie Christensen, a founding member of the Alliance of Parkinson's Health Activists, describes one frustrating issue “Parkies” face:
When people first meet me, they may not be able to tell that I have Parkinson's disease. I'm 45, and the average age at diagnosis is 55 to 60. (I was 34 when my case was diagnosed.) I don't really have a tremor, and in 2006, I underwent deep brain stimulation, a procedure that controls most of the wriggling and writhing movements that I had been experiencing. But once I open my mouth to speak, it often becomes apparent that there is something going on.
It may be that the rigidity of my throat and chest muscles has made my voice soft and lacking inflection. … The problem that bothers me the most - because it seems to be especially disconcerting to others - is the halting quality that my voice frequently takes on, especially if I'm nervous or upset. It's . . . as . . . if . . . what . . . I . . . want . . . to . . . say . . . has . . . to . . . be . . . squeezed . . . from . . . my . . . brain . . . to . . . come . . . out . . . of . . . my . . . mouth . . . as . . . individual . . . word . . . bubbles.
If reading that was annoying to you or made you want to finish the sentence for me, you are not alone. Many of my friends, colleagues and family members feel the same way. …
I believe they think of it as trying to be helpful, like tying a child's shoelaces for her. However, most of the time, I am not asked if I would like assistance; someone just goes ahead and finishes my sentence for me. And except for the Michael J. Fox Foundation, most Parkinson's organizations have not chosen spokespeople who actually have the disease.
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