Ed’s Parkinson’s Journey
In November of 2015, I walked out of a Neurologist’s office in a state of shock. I could not believe that I had been diagnosed with Parkinson’s Disease! Looking back, I know now that I was in denial. This would go away, right? Not exactly, in fact not at all. It would be months before I would come to terms with PD. I was not even ready to refer to the doctor as “my Neurologist”.
My initial symptoms had started 3-4 months earlier. Working in my office one evening, I noticed that my left hand would tremble, just a bit when I held it a certain way. Dr. Google was my first consultation, where I learned that this could be anything from a muscle spasm to a warning sign of a serious, perhaps even fatal neurological disease. I decided to go to a real doctor, my long-time primary care doctor, Dr. Chris Duplass. He examined me and ordered an MRI. His examination was inconclusive, and the MRI came back normal. He suggested I see a neurologist as a precautionary measure. At that point, my only symptom, or, so I thought, was the slight tremor. Coincidentally, before I saw the neurologist, I had attended a meeting of key customers, and a long-standing customer, who had not seen me in a year or so, asked a colleague “what’s wrong with Ed, he looks like he is recovering from a stroke, is he ok?” Now I realize that if you had not seen me in a while there was obviously something different.
I saw the neurologist, Dr. Seth Haplea as soon as he had an opening. He did a physical exam, and suggested we try some medication and see what the impact was after a few weeks. Initially, he was unwilling to be specific, and explained that we would know more after a few weeks on Sinemet. Obviously, I knew the most widespread treatment PD was Sinemet, so I knew the potential outcome.
In the months following my diagnosis, some things slowly started to make sense. Graphic nightmares, my left foot dragging just a bit (which I dismissed as bad shoes) and a lip tremble when I held a coffee cup a certain way, all were symptoms of PD. I researched as much as I could about PD and realized that not only was this not going to go away, but it was also likely to get worse, and in fact the only thing proven to slow deterioration was vigorous physical exercise. My cognitive skills were holding up well, even better than some of my contemporaries. We all confess to occasionally opening the refrigerator and thinking “what did I want in here?“
Emotionally, I was kind of a mess. I didn’t know if I should go on as though I was fine or start planning my rapid demise. I decided to seek some emotional help from a professional counselor. We talked about a range of issues, most of it around dealing with PD. She was very helpful in helping me determine if I was going to focus on how my life was before PD, what my life would be like without PD, or what my life will be like with PD. I also attended a symposium on PD, where several doctors, nurses , and physical therapists emphasized the importance of exercise and attitude.
Ultimately, I made a decision. I was going to live my life as though I would live forever, and I was going to live every day like it was my last day. I was fortunate, (am fortunate) that I was able to retire, taking away the stress of a 40+ hour work week. I did not, however, retire from life. I had been active in the community for many years serving as board chair of several nonprofits. I remain active on those boards and have expanded my interests.
I assembled a great team of people who are committed to make me be the best version of me.
My Physical Therapist, Dr. Jill, my trainer Susan, my massage therapist Carolyn, and my boxing instructor, Heather are all amazing. With rare exceptions, I get a minimum of 10 hours of exercise a week. I try not to think about PD, and for the most part I am successful. I will admit to times of sadness and self-pity, but they are not productive, and rare.
I do keep up on current literature and progress on PD through various mediums. I want to know new treatment options, innovative therapies, potential drugs that will slow or even stop disease progression, and obviously any potential cure. I regularly scan clinical studies, have a brilliant neurologist that I see regularly. But I really don’t think about a cure. I think about what I can do to make my life what I want it to be. My workout schedule gives me a modest sense of control over my life and PD.
Lastly, and as important as exercise and attitude is my family. I have 2 wonderful adult children. They, their spouses and my 4 grandchildren envelop me with love and support.
My wife is my most intimate friend and knows me like no other. We don’t talk about my PD all the time, by my choice. But I know that when I need her, she will be there. She has been with me on this journey.
I’m now 7 years post diagnosis. Throughout the years, I’ve had nearly all the classic problems that come with PD. We have addressed them as they have surfaced and dealt with them as best as science currently can.
I’m still here. Not just living, but truly enjoying my life. I have come to the realization that some things are not the same. My golf game sucks...but it always did.
