Shake, Rattle and Roll: Sharing or Keeping the Secret of Parkinson’s

By Kate Kelsall

Everybody's got a secret, Sonny

Something they just can't face

Some folks spend their whole lives trying to keep it

They carry it with them every step that they take

'Till some day they just cut it loose

Cut it loose or let it drag 'em down ...

From: Darkness on the Edge of Town by Bruce Springsteen

When I learned this week that Robin Williams committed suicide, I was devastated by the news. I also learned that he had Parkinson’s Disease (PD) as well as the depression and anxiety that often comes with the territory of this progressive, chronic condition.

I can relate to Robin’s story. I am currently 64 years old, one year older than Robin. When I was diagnosed with PD 18 years ago at the age of 46, at first I only told my husband, mother, and brothers and sisters. Throughout the years, I gradually told a few more relatives, close friends and colleagues.

I was ashamed of having PD as though it was my fault that I was diagnosed with this malady. I didn’t want to be pitied, judged or others to lower their expectations of me. I dreaded that people might scrutinize me and look for my worsening PD symptoms.

I scheduled my neurology appointments at 7:30 AM so that I could avoid the other shaky folks in the waiting room. When my hand shook at work, I would put it in my pocket. When people would ask me about my medical condition, my typical response was frequently "I don't want to talk about it."

I was arrogant enough to think I could cure PD by maintaining a healthy lifestyle, taking my PD medication, and developing a positive mental outlook.

When my PD meds were working, denial was my motto. When I often passed as healthy, or so I thought, my magical thinking went like this: If I don’t talk and think about PD, then I don’t really have it. So I pretended.

The problem with denial was that it also required secrecy. For nearly a decade, I kept my PD shrouded in secrecy.

During these early years while keeping my secret of PD. I insulted others by not sharing what it was really like to live with PD. I deprived people of the opportunity to provide support, and I deprived myself the opportunity to provide inspiration.

By the time that my PD had progressed to the point that I required Deep Brain Stimulation (DBS) surgery, I found it necessary to disclose what I could no longer conceal. Concealment had become as stressful as the disease itself. It was time to come clean and get honest.

When PD was no longer a taboo subject for me, “reveal instead of conceal” became my new motto. And what a relief it has been for me to live a life of openness without secrets.

Robin’s fears prevented him from sharing his secret of PD to the public. I contemplated this question: If Robin had chosen to reveal and not conceal his condition to the public, would he still be alive today? If he shared his secret in life, I believe he would have received the same overwhelming support that he received in death. And he might have realized that he was not alone and with his support and resources, he could make a difference in the lives of those with PD and their families, including himself.

Related Article:

Keeping Parkinson's Disease a Secret at:

http://well.blogs.nytimes.com/2012/07/09/keeping-parkinsons-disease-a-secret/