Sharing our Diagnosis of Parkinson’s Disease

by Ralph F Sett, MD, Member, PANC Board of Directors

How do we Persons with Parkinson’s begin to discuss our diagnosis with others? The diagnosis itself is startling and maybe devastating. Michael J Fox didn’t divulge his diagnosis for months. Jimmy Choi didn’t deal with his diagnosis until he fell down the stairs holding his child. What are the factors that prevent us from revealing our diagnosis. Perhaps it’s a question of privacy that drives some people. They may think the following. “It’s nobody’s business but mine.” or “I don’t want to make a big deal out of this.”

We didn’t ask for Parkinson’s Disease. It’s important for us to remember that a medical illness is nothing to be ashamed of. The symptoms can be hard to overlook especially when you are shaking or having a noticeable gait disturbance or if you are getting up out of a chair with marked difficulty. When others don’t know what has happened, it leads to personal discomfort not only for you but for them as well.

Some individuals don’t want other people to treat them differently. They may have concerns that people will feel sorry for them. If they are in the work force, they might be concerned that coworkers or clients consider them incompetent to perform their jobs.

The danger of not dealing with the diagnosis can lead to isolation, a withdrawal from family, and friends. Avoidance of social interactions, such as joining friends for dinner or going to church, may occur. This can have a snowball effect that leads to apathy or depression. Apathy is characterized by a lack of concern about a situation. It is a state of indifference that has the suppression of emotions. For example, a person may spend the day playing a video game or watching television but has no affective component. On the other hand, depression is characterized by a lack of motivation but with an emotional component. e.g., sadness or feelings of guilt over one’s lack of involvement.

It is my belief that one key to opening the door for sharing our diagnosis of Parkinson’s Disease with family and friends lies in our ability to accept the diagnosis. Even though I received a great deal of valuable information regarding resources from my movement disorder neurologist, I did not jump right into exploring them. It took several months for me to digest my new diagnosis. Joining a support group is a safe place where people can freely share their experiences. When I joined the Arden-Arcade support group, it opened many doors and has proven to be beneficial for me. I have discovered many new opportunities including exercise groups online as well as wonderful social opportunities with many new friends.

There are benefits to sharing a Parkinson’s Disease diagnosis. It explains a lot. People may have already noticed physical changes. Sharing the diagnosis can provide some medical history for family members. It gives an opportunity to respond to the question, “Is it genetic?” It also allows people the opportunity to give you the love and care that you have given to others over the years.

“Things turn out best for the people who make the best out of the way things turn out.” - Michael J Fox