Sharing the News of your Parkinson's diagnosis

This can be a very challenging decision for a lot of people. We all come from different backgrounds, different family dynamics and cultures. We also have different roles that we play, in which having Parkinson’s disease may impact your credibility and people’s perception in the ability to do your job well.

My favorite story about this was from my friend Dr. Karen Jaffe. Karen is amazing, and I refer to her several times throughout this website. She is an OB/GYN physician who was diagnosed with PD about 10 years before me.

Shorty prior to her diagnosis, she had become certified as a Mohel. This is the person who does the circumcision at a Bris. Shortly after her diagnosis, she was at a Bris and was waiting with the grandfather of the baby for the ceremony to start. The grandfather was going to be holding the baby during the procedure.

The grandfather of the baby proceeded to tell Karen, “I have a secret…don’t tell the rest of the family, but I have Parkinson’s, so I may be shaking while you are trying to do the procedure.” Karen laughed, and proceeded to tell him, that she too had a secret, she also had Parkinson’s. They kept each other’s secret and everyone got through it with no harm done…

It turns out, with Parkinson’s, we have a resting tremor, she in fact was able to safely continue to perform her duties as both a Mohel and a surgeon, but kept her diagnosis a secret for 2 years because she was afraid there may be the perception she could not perform her job.

She later told me that if she had it to do over again, she would not have kept it a secret. The stress of keeping the secret was worse than the symptoms of the disease itself. When she did start telling colleagues and friends, everyone was incredibly supportive. She did continue to work after she shared her diagnosis at work.

Here are the experiences shared with permission of each author of some of our friends in The Parkinson’s Fight Club.

Marian Vanek
When I was diagnosed last fall, it took me several weeks to process it before I was ready to discuss with others. My husband was with me at the time, so I asked him to also keep it quiet for a bit. Once I made a commitment to myself to do whatever I can to beat this disease, I was ready to discuss with others. I shared the information with our adult son and my siblings. All were tremendously supportive…….although a bit concerned once they started to search the internet. WE only shared the news with a few close friends, and all were quite supportive as well. Since I retired a year prior to receiving this news, I did not need to share with my colleagues.

John McCrea
My wife was with me when we got the diagnoses. WE had already suspected what it was by that time. We told immediate family soon after and have told close friends. I have told my immediate staff at work(they all new something was wrong) and select others. I have just received a promotion at work so kept it quiet until the promotion came down. Most that I have told at work have been surprised and said they had no idea as my symtoms (other than slow walking) are usually under control. My wife has had a a harder time than I have processing and dealing with what is in front of us. Medication, PT and OT( and the work involved) have helped minimize the effect on my daily life so far.

Mark Ramos
Once I suspected PD, I told my siblings and grown children. I had to wait several months for a neurology appointment. Once I had a confirmed diagnosis, I told close friends. Now I tell others when circumstances allow. I’m eventually hoping to do some PD fundraising and that will certainly involve wider more public disclosures

Nikki Bieleny
I didn’t make a conscious choice on how/when and who to tell it all just happened in a blur….

Told family straight away, I’d already prepared them as I was getting the initial tremor symptoms – somehow I knew what the diagnosis was going to be, they were still as shocked as I was because of my very healthy lifestyle.

I told close friends as I saw them, work was a few months later as I had to get my own head around it and they were supportive.

I went into a very deep dark depression for a couple of years isolating myself for quite some time – something I couldn’t control – and lost a lot of “friends”.

Sam Spurling
Told everyone right away

Kimmer Shimko Wolfinger
Told everyone right away as they knew I had appointment with neurologist. I knew it was probably Parkinson’s based on my symptoms. Made a post on social media and received and continue to receive fantastic support from everyone… well almost everyone and they will remain unmentioned🤣

Melinda Jo
I told my adult son first, followed by my parents and sister, my best friends within a couple of days and then completely public on social media the following week. I had been sharing my weightloss surgery journey prior to my diagnosis (March 2023) so it already felt fine with sharing my PD diagnosis and journey. I’m pretty open about it. I’ve received nothing but support and encouragement 😊❤️

Anonymous
Told my immediate family right away, my husband went to appointment with me. Diagnosed 10yrs ago at 43.

There were a few close friends that know but haven’t felt the need for anyone else to know. I tend to keep my health issues closed to only my family… 

Plus I went non medicated for several yrs and I had to go through stages of grief to accept diagnosis.

Cathy Austin
I told my husband right away but everyone else took a couple weeks and work took a month or so. But everyone at work knew something was going on. I probably wouldn’t change anything. I needed time to process.

Thomas Braun
Told family right away, we have two adult children so that was no big deal. Never needed to tell me employer as I retired at the end of 2019 and diagnosed in 2021.

Told my brothers and sisters right after I told be children. I let them tell my nieces and nephews.

Told people in my church family shortly after diagnosis. I was president of the congregation and needed to step down from that position, I couldn’t handle the pressure and decision making any more, plus I was getting crabby and was not nice to be around anymore.

Telling friends was more sporadic. I told the people that a ran with right away because i was no longer able to join them.

I don’t think I would do it any differently.