My PD Story

If I were to summarize living with Parkinson’s disease (PD) today it would read something like the following LinkedIn profile:

Parkinson’s scholar-advocate bridging research, public education, and creative practice — publishing peer-reviewed work, convening expert speakers, presenter at domestic and international conferences, and facilitator of poetry and intentional writing for people living with Parkinson’s.

It took a few years to get to the point where I could write a summary of a productive life living with Parkinson’s. Like most people, I met my diagnosis of Parkinson’s disease with disbelief and fear. Disbelief of how this could be happening to me during the height of my career and fear of what the future held.

After my initial diagnosis in 2013, I sought second opinion(s). A primary care physician and a highly esteemed EMG specialist (someone who performs and interprets Electromyography (EMG) tests) assured me I did not have Parkinson’s. The EMG specialist, in particular, went to great lengths to argue that it was common for patients who wore a boot for three months or more after extensive foot surgery (which I had in October 2011) to develop a spasm in their maximus gluteus muscle of the affected leg.

A sports medicine doctor prescribed propranolol which calmed the tremor tremendously. Generally speaking, I lived my life as I always had, busy with my career, friends and traveling with my teenage children. Parkinson’s impacted my life but in a limited fashion.

In 2015, I decided it was time to settle the score and so I made an appointment at Mayo Clinic in Rochester, MN. Meeting with the neurologist was another one of those moments where the truth hits one right in the gut and there was no getting around it. Mayo confirmed that I indeed had idiopathic Parkinson’s.

Over time and with extensive research, I felt that idiopathic was not an appropriate descriptor for my brand of Parkinson’s. It did not take a lot of researching to arrive at likely causes of my disease. Varied and occurring over at least three decades, the cause of my Parkinson’s, in my opinion, includes severe head trauma from being accidentally hit in the head at the age of 17 with a golf club as a friend engaged in practice swings, a serious car accident that caused a concussion, one face plant into a concrete patio at a restaurant resulting from a damaged threshold that caught my heel, to nine years exposure to various forms of mold concealed in homes that I had purchased to high levels of chemicals in an apartment I lived in for a short period of time while building a house.

It was not until October 2023 that I met a physician that took the time to understand the mechanics of my illness. Alberto Espay, MD, at the James J. and Joan A. Gardner Family Center for Parkinson Disease and Movement Disorders, at University of Cincinnati College of Medicine. I learned more about my brand of Parkinson’s in one afternoon with Dr. Espay then I had over the 10 preceding years with a variety of neurologists.

Today, I could write a book on the people I have met in my travels, our discussions about many different topics, and their kind and subtle offers of help in many different ways. New York is one of the kindest cities on this planet. There’s always someone ready in a moment’s notice offering to help. Sometimes I ask but typically most beat me to it. Such help as assisting me across the street during times of high traffic or one of my personal favorites, coming to a dead halt at a threshold at either an entrance door or elevator door.

My Parkinson’s seems to have a mind of its own. For example, during the time when I am receiving help (and that is typically when I have forgotten to take my medicine on time or I am in large crowds) I may move with great deal difficulty, unless I’m holding onto the assisting person’s left arm. Just the other day at the mall a woman was helping me over a threshold. She extended her right arm, and I barely moved. I explained to her how I do much better if I am on someone’s left side. As soon as she changed sides, I took off. She laughed and said, you weren’t kidding.

Freezing of gait is the temporary, involuntary inability to move. It can be a common symptom of Parkinson's. Learn more.

I play the piano and write poetry as a means of expressing moving experiences and challenges. I find it’s both a great outlet and refuge (my poems can be found on my website, Poetry for Today). I also find helping others is a valuable way to bring meaning to my life. This in fact explains my role as an advocate.

After 13 years with Parkinson’s disease, I describe myself as deliberate and purpose driven.  On the one hand, Parkinson’s has reduced opportunities, but on the other hand, it has presented new and perhaps even richer opportunities than I could have ever imagined – such as co-authoring an article with a neurologist in Perth, Australia, and a psychiatrist in Leicester, UK. You will never find a more caring or giving group of people than those living with Parkinson’s.

My Parkinson’s experience led me to participate in the Parkinson’s Foundation PD GENEration genetics study, where I simply provided a sample and waited several months for a result. I was happy to be part of the study. Not only was it my first time participating in a PD research study, but I am now more likely to find and participate in PD studies in the future.

Each day I live with awareness of my disease as it pertains to my body, energy level and mood. Parkinson’s has required adjustments, patience and self-advocacy but it has not diminished my intellect, curiosity, creativity or leadership. If anything, I feel sharper than I have in the last 15 years.

In summary, continuity of purpose and intentionality as to where I want to place my energy and engage on a daily basis is what motivates me. Adaptation and resolve on those days where I have neither slept the hours I would’ve liked to have nor exercised in the manner to which I am accustomed is critical.

Overall, I do my best to maintain a can-do attitude and perspective and acknowledge that while Parkinson’s does not define me, it drives my commitment to raise awareness and promote collaborative research and personalized medicine for better individualized treatments and eventually cures.

After all, there is not one Parkinson’s, and there is not one cure.

The Parkinson’s Foundation is here to help empower you throughout your Parkinson’s experience. Explore our resources and support and find what works for you.