My PD Story

I unabashedly tell people that I am a selfish volunteer. Everything I do is to help my brother, Greg. 

Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.

My volunteer history with the Parkinson’s Foundation started more than a decade ago — soon after my brother was diagnosed. He hadn’t even turned 50 and was already displaying a range of symptoms. Each successive symptom seemed nastier than the previous. I was scared for him and for the rest of my family.

While I was researching everything I could about the disease out of fear that I could also “get” Parkinson’s, I jumped into the Foundation’s local chapter with both feet on the ground and arms in the air. I learned so much at the Annual Symposium that I demanded every family member of mine attend the next year and we’ve gone every year since!

At the time of Greg’s diagnosis, I worked as a local news reporter. I decided I would produce as many stories as I could about PD. I interviewed neurologists and shot footage of my brother’s symptoms to show what Parkinson’s can do to a human. Greg did not mind being my “example” and he shared the personal side of the disease, beyond the tremors. He talked about his frustration, the isolation, the hopefulness and the hopelessness. I learned so much! Through my videos and published stories, we helped generate awareness of the disease and more importantly, shared information about all the support services available to people with Parkinson’s in my area.

I joined the local board and now sit on the Parkinson’s Foundation New York & New Jersey Chapter board.  Being a board member gives me direct access to those on the front lines in this battle. I like knowing what’s being accomplished all around the country. I pay attention to all the research projects and funnel the information to my brother so he can discuss them with his doctors. (I told you I was selfish — Greg comes first). 

Recently, one of my high school friends, Cindy, was diagnosed with PD. I forward information to her, too.  I also send it to my family members. The more they know about this disease, the more we can do to help Greg, Cindy, and everyone living with PD.

I have been on the Moving Day committee for close to 10 years. First, as the event emcee and now as a full-blown committee member. I run the Facebook account for the Moving Day group. I share information with local media organizations and set up interviews for Foundation officials and other people with PD to appear on local television. These are tasks I am more than capable of doing and I’m happy to share my skills. We all have some skill to offer.

Approximately 90,000 people will be diagnosed with Parkinson’s in the U.S. this year. All those people and their families will need help understanding how this disease will impact them (explore Parkinson’s Foundation resources here). We need more people to be selfish and get involved. Whether you get involved for yourself, a family member, or a friend, your selfishness might actually be the most positive character flaw you have!

Explore the many ways to volunteer with the Parkinson’s Foundation. Fill out our volunteer interest form today.