Becoming a Parkinson’s Advocate
I never imagined that, at the age of 40, a little problem with handwriting or walking could be related to Parkinson’s disease. It was really shocking to hear that diagnosis assigned to me because I always related Parkinson’s to older people like Pope John Paul II or Muhammad Ali.
My main concern at the time of my own diagnosis back in 2007 was figuring out how to continue providing for my family and whether I was obligated to notify my employer.
I spoke with my neurologist and lawyer to determine the best course of action.
I wanted a clear visual of all the cards in my deck, so I decided to go on working. As a manager at a top IT company, I felt I could not show weakness. I was performing at 120% because I didn’t want the disease to affect my performance.
When you light the candle at both ends, you have twice the amount of brightness. But it won’t last as long if it’s burning on both sides. I was accelerating the disease because I was increasing my stress level. After two years, I decided to retire.
But retired life didn’t suit me. I became depressed and felt like I had too much time on my hands. I didn’t want to spend my days on the couch watching tv.
My thought was “How can I be entitled to ask for help in 10 years if I didn’t do anything to help others while I am in good health now?”
That was the moment I decided to invest my time in helping people. To became an advocate.
Together with four friends I met through an online Parkinson’s forum we started an organization called “Unidos contra el Parkinson” (Together against Parkinson’s disease).
Disappointed by the lack of Parkinson’s resources available in Spanish and Italian, the group set out to create a Parkinson’s resource page that could be accessed by Parkinson’s patients in Europe and South America.
We also created a comic book for kids called “Through the eyes of a child” to help parents explain PD to their children.
It’s not easy to explain to children that their father or mother, who is invincible, is going to have health problems and cannot take care of them as well as he or she was doing before
My work through Unidos contra el Parkinson eventually led me to become an ambassador for the World Parkinson Coalition (WPC). Over the past few years, I worked ardently to bring the 6th World Parkinson Congress to my adopted hometown of Barcelona, Spain, in 2023.
While Parkinson’s medications can work wonders for mitigating symptoms, the more active you are, the more you are going to improve your life. When you feel healthier, you are going to think more positively. If you think more positively, you are going to be more active. It’s a continuous loop.
Living with Parkinson’s can be a pain in the neck.
It’s alright to be angry, to get mad or to break something if you feel like it’s going to help you release your anger. But you cannot be stuck in this feeling for the rest of your life. It’s the end of the life you planned, but it’s not the end of your life.
Advocates build a new life with the tools they have available.
Advocates play the cards they were given.
It’s up to you to play your hand the best way you can.
Are you an advocate?
Fulvio Capitanio is an economist and ITC manager. He was diagnosed with Parkinson's in 2007 and retired from his job in 2009. Fulvio has attended/presented at many past WPC Congresses. He is currently co-chairing the WPC Parkinson Advocates Committee, a member of the Leadership Forum Executive Coimmittee and also sits on the Steering Committee WPC 2023.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®