The Stigma of Parkinson’s Disease

The elderly woman was taking a tour of a residential facility.  She wasn’t happy with her current residence for a variety of reasons.  So she was looking carefully at this one, hoping it would be a better fit.  When the tour took her to the therapy room,  she got into a conversation with the staff there about her health and needs.  One of the staff asked her, “So,  I assume you have Parkinson’s Disease? The woman shook her head  with a disgusted countenance and said, “No”, as if she’d been greatly insulted.

That woman is my mother and that is why even eight years post-diagnosis, she has no idea that I have Parkinson’s.  I was reminded of that yesterday when I went to a local nursing home to visit a friend.  I arrived at the same time as another visitor and, finding my friend napping, we spoke in the hall with his daughter.  As the conversation unfolded, his daughter described his progress and his medical challenges.  The other visitor leaned in at one point, and pseudo-whispered to the daughter, ” I don’t mean to pry and you don’t have to tell me, but someone told me he had (dramatic pause) Parkinson’s Disease”.

There certainly seems to be a stigma with Parkinson’s Disease.    Our facial expressions can be masked, our voices can quiet to a whisper, and we can have an odd gait, an imbalance when we walk  and tremors and other involuntary movements.  If you’ve every had any of these outer manifestations of the disease, you may have noticed the whispers and curious stares.  Are we under the influence of alcohol or something else? What’s the matter with us?  I’ve had that experience.  I only learned of the whispers because they were often directed to a very close friend of mine who repeated to me who asked and what they asked.  No one asked me the reasons for my physical changes.

The actress Helen Mirren  called for a change in attitude towards people with Parkinson’s Disease, urging education campaigns to tell people how to recognize the constant involuntary movements that characterize the degenerative neurological condition. She had a dear friend who suffered from the disease.  Ms. Mirren said,

“A good friend of mine, a photographer who I’ve known for 30 years, was diagnosed with Parkinson’s about 10 years ago. He’s very wobbly on his feet, uses a stick, has shaking hands, has an increasing problem with walking, falls and can’t rely on his balance…Parkinson’s is a slow but inevitable process. It’s hard living with it on a daily basis. The difficulty facing people with it is that they never quite know ‘Can I or can’t I do this today?”

 Society’s emphasis on physical health and function, appearances, including verbal and non-verbal communication perpetuates the stigmatization of persons with PD. Many of us try to keep it a secret for as long as possible, especially when we know no one else who also struggles with it. Support groups of others facing the same challenges can help normalize the disease for  those of us who suffer  from it. There’s comfort in talking about what you face on a regular basis.  I’ve been in groups where we can actually  laugh at our daily challenges. Members understand and empathize with one another and are happy to help when needed. There are even published humorous books about Parkinson’s.  It better to laugh at ourselves than to be laughed at.  So thank you to all my support group friends who have helped me own my disease and bear with it as much grace as possible.  And thanks to those in the community who offer up their time and assistance to make a difference in the lives of people with PD.