Living With . . .
Living With Parkinson's Disease: Let Me Speak for Myself
Tuesday, June 2, 2009
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. Stiffness in my facial muscles can give me a blank expression or, even worse, make me seem angry or aloof. I may sound like I am trying to talk with a mouthful of marbles. 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 have a theory about what bothers them.
So much of the information that we take in these days is filtered through a lens shaped by subtle nuances in tone of voice and facial expression. That is why we enhance our e-mails with "emoticons" -- those smiley or frowny faces that help convey the meaning behind the words on the screen. What if something happened to your computer and it would no longer add emoticons? What if your keyboard allowed you to type only a few words at a time? You would probably be angry and frustrated but still feel that your thoughts and opinions were worth hearing.
With Parkinson's disease, our brains -- our inner computers -- have been damaged, and we are begging someone to design the equivalent of a software patch or a new operating system to help us function. We are urging medical researchers and drug companies -- the IBMs, Apples and Microsofts of the Parkinson's research world -- to come up with the fix. Unfortunately, we never know when we will be able to speak smoothly, making it difficult to get our points across, whether we are speaking at a congressional hearing or telling a bedtime story.
So we have enlisted our care partners and families, whose systems are functioning, to tell our tale. But if we are not involved in the discussions and developments ourselves, we may end up with a purported solution that doesn't work -- a software patch for a PC, if you will, while we have a Mac.
The question of who speaks for whom goes beyond friends finishing my sentences for me or a woman telling the support group how her husband is doing while he is sitting right next to her. This issue also affects Parkinson's organizations.
I don't believe that anyone is usurping our rights intentionally. 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.
Certainly, there are some advanced Parkinson's patients who can no longer speak audibly or choose not to try because they know that the stress of trying will often make the problem worse. Some, like Mr. Fox, seem relatively unaffected. But many Parkies like me can still speak and want to do it for ourselves, even if it is difficult. We're very passionate about it!
The perspectives of the care partners and the family members and the clinician all contribute to educating the public about how Parkinson's affects people and why we need to find a cure. Yet right now, 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. I am not asking my family, friends, colleagues and organizations to stop what they are doing. I am simply asking them to speak with me, not for me. Together, we will overcome Parkinson's disease.
Jackie Christensen is a founding member of the Alliance of Parkinson's Health Activists. If you would like to share a story about living with chronic illness, send it to firstname.lastname@example.org. Include postal address and phone number, and mark the subject line "Living With."