I was a globe-trotting, corporate science professional with a year-round list of active hobbies — cycling, fly fishing, hiking, backpacking, bird hunting and cross-country skiing to name a few. My earliest Parkinson’s disease (PD) symptoms were subtle and wouldn't have raised suspicions to anyone not already thinking about PD. First, I experienced difficult bowel movements and odd toe and foot cramps. At 50 years old (and seemingly out of nowhere), I developed a foot drag which I attributed to a disc issue.
At 58 years old, my local neurologist added the term Parkinsonism to my health profile. Two years later, a different doctor — this time a movement disorders specialist — diagnosed me with Parkinson’s with 99% certainty. He asked me why I waited so long to see him, and I responded that I thought my symptoms were a result of a lower back problem. In truth, I was embarrassed and afraid of receiving a PD diagnosis. I thought it meant my life as I knew it was over.
Over the next decade, I would experience all the more life-changing impacts of Parkinson’s. To my wife and friends, the symptoms had been obvious. I continued to blame my back until I turned 60, when the symptoms progressed so fast that I was unable to ride a bike or wade a rocky trout stream.
After I began responding to PD medication, I fought back with a vengeance. I enrolled in a yoga class to counter the stiffness. I resumed my guitar practice to work on manual dexterity. I joined a table tennis league to improve agility and reflexes. I got on my road bike, and by late summer I was back to pre-PD form. I competed in a fly-fishing tournament and waded rushing mountain rivers. Nine months after I my diagnosis, my neurologist told me that if I weren’t his patient, he wouldn’t suspect I have Parkinson’s. I was back!
It hasn’t been all roses since then. I live in Central Pennsylvania and there isn’t a movement disorders specialist within 100 miles, so I’ve figured out a lot about managing the disease on my own. I subscribed to a Parkinson’s research journal to stay up to date on medical advances. I monitor my symptoms and ask for medication tweaks when things aren’t working right. I continue to modify my physical therapy program when something stops working or a new symptom develops.
I discovered the Parkinson’s Foundation about a year ago. Their online resources helped me make sense of my PD history. I watched remarkable videos that opened my mind to new knowledge about the disease. I wish I had known about the Foundation ten years earlier.
I recently became a Parkinson’s Foundation Ambassador. I am retired now and have decided to devote my volunteer efforts to helping the PD community in Central Pennsylvania, which has low access to specialized Parkinson’s care. I am engaging with senior care facilities by delivering educational materials, familiarizing staff with the Parkinson’s Foundation website and connecting facility leadership with the organization so they can benefit directly from the excellent resources the Foundation provides.
Nobody should have to navigate this disease on their own.
You can make a difference in the PD community. Become a Parkinson’s Foundation Ambassador today.