A Decade with Parkinson’s Disease: The Diagnosis

Updated April 3, 2019

I was 48 years old when I first noticed that something was amiss. It started in my little finger. I was sitting quietly and noticed a slight tremor. It was the oddest thing I’d ever felt. It didn’t prevent me from doing anything that I wanted to do though, so I tried to ignore it. It was just “one of those things.” It would work itself out.

By the spring of 2009 the tremor had progressed to my whole hand. It was a slight tremor and  unnoticeable to anyone but me unless I pointed it out. I only noticed it when I was sitting quietly and it went away when I was actively doing something which was most of the time. I decided I should see a doctor. But it was May and I had a vacation to Puerto Rico planned for the early part of June. I didn’t want tests or doctor appointments (or bad news) to cause an interruption of my travel plans. I’d lived with the tremor for at least a year. Another month or two wouldn’t make a difference.

I live an hour outside of Cleveland which is known for having world class doctors and hospitals. In July, shortly after my vacation and my 49th birthday, I scheduled an appointment.

At my appointment, the doctor gave me a complete examination which I passed with flying colors. Except for my resting tremor I had no other symptoms. But the tremor was enough to cause the doctor to conclude that I had Parkinson’s Disease. Even though I already knew that that was probably the case, I wasn’t prepared to hear his cold and clinical diagnosis.

The doctor I chose is a good doctor with great credentials and high ratings from his patients. He was young and very knowledgeable, but his bedside manner deserved a big, fat zero. I had been doing my own research and one thing I’d read over and over again is that every patient is different. Each exhibits different symptoms, and at their own individual rate of progression. But this doctor was clearly lumping me into a box. He talked to me as if I was already exhibiting all possible symptoms and could expect nothing but the worst of circumstances.

I’d found the information I’d read on-line about medications and the best time to start taking them to be overwhelming and confusing and I had hoped for some clarification. Instead, he offered me prescriptions for those same drugs I’d been reading about but said little about how they worked or why I needed them. I felt as if I were being pressured to make choices right then and there.  I did have a tremor but at that point it didn’t cause any problems for me. I didn’t feel I needed any medication. Would delaying medication be harmful to me? Or was starting it too early a mistake? I couldn’t get a straight answer.

The doctor sounded as if he were reciting a medical journal. The more I listened to him, the less I felt like a person and the more I felt like a lab rat. I understand that doctors are used to meeting patients who often don’t care about the details. They just want to be told what to do to fix their problems. But that wasn’t the case in my case. Even after expressing all of my questions and concerns, this doctor didn’t realize that I wanted to be a part of the conversation.

My head was spinning when I left his office. I got into the car and cried. It was the first and last time I would cry over my fate. I went home, put the doctor visit out of my mind and continued to do my own research.

It was a year before I saw another doctor about my Parkinson’s Disease but it was a year well spent. It taught me that a diagnosis of Parkinson’s Disease is not the death sentence that many expect it to be and it doesn’t necessarily require immediate solutions. The year gave me time to read and reflect and look for another doctor that was just as qualified but also more personable.  I also discovered the Michael J Fox Foundation. It was through that organization that I found myself at the Cleveland Clinic under the care of Dr. Fernandez.