Why does my hand want to play piano even though there’s no piano nearby?
I remember that day thinking, ‘What the hey?!!!’ I had retired from my job as head of a busy Visual Arts department at a downtown Toronto high school and was living my dream—painting and traveling. I had moved to a beautiful smaller city and was working on a large, realistic acrylic painting, when I noticed my dominant hand shaking. I thought that odd, especially as I was in a good place in my life, healthy, experiencing little stress, happily married, with our two adult kids finally ‘launched’. So I set up an appointment with my doctor to investigate why my hand wanted to play piano even though there was no piano nearby.
The doctor told me I’m just aging’, but the tremor didn’t diminish. In fact, it started appearing more and more, getting in the way of my happy place, painting. So I made another appointment for help with my worsening shaky hand, and again was told it’s just age. After a year and a half of experiencing this strange symptom, I knew something was not right. So, once more, I asked the doctor to please refer me to a specialist to investigate what is wrong with my hand. Finally, he agreed. I wonder if I was a man, would my doctor have dismissed my concerns as ‘just aging’?
A few months later, I was seen by a neurologist for about 15 minutes. He had me walk away and towards him, and then announced that I had Parkinson’s - based on the fact that I was not moving my right arm when I walked. I was alone with the doctor, and wished my husband was with me as I was in complete shock. I had convinced myself my hand tremor was due to a pinched nerve, or maybe an essential tremor. The neurologist told me to take 3 levodopa/carbidopa pills a day and come back in three to four months. That was it. No further testing, no additional information, no suggested exercises, or PD support groups to attend.
Once I got into the car with my husband I broke down and cried. I took my meds as prescribed, without phasing them in gradually, and with only a sip of water. I had lousy side-effects of nausea, dizziness and depression. When I called the neurologist about this, he cut me off that prescription, and immediately switched me onto new meds on three occasions, with each medication having its own side effects.
Every time I spoke with the neurologist about these annoying side effects, he’d strongly suggest I rate him on a rate-your-doctor type site, announcing he wanted to be the top-rated neurologist in the world. I felt like a person in a barber’s chair getting a shave, with the razor pressed against my neck and the barber saying, ‘Rate me! Rate me!’ So I gave him a total of two excellent ratings. This pressure to continually rate him began to feel like a form of payment for services. Then, one Sunday afternoon, the neurologist sent me a text accusing me of writing a bad review, which I had not. It felt like my neurologist had fired me. He left me on a poor combination of drugs, in a depressed fog, and ignored my calls for help.
I showed the neurologist’s accusatory text to my family doctor, saying that I needed a new specialist. I did some research on good movement disorder specialists and was placed on one of their waiting lists. In the meantime, with the help of another neurologist whom my doctor consulted, I was gradually weaned off the old drugs and slowly introduced back on the initial prescription of three levodopa/carbidopa pills per day, but this time with no side effects. I since found out that these brain medications are best introduced to the system very gradually, allowing the body to better adjust to them with limited side effects.
These experiences helped me realize that I have to advocate for myself. Consequently I joined a local PD support group and got informed from resources including: Parkinson Canada, the Michael J Fox Foundation, and the Davis Phinney Foundation. I then made an official complaint about the neurologist to the college of physicians. After some time, I got a neurologist specializing in movement disorders. She really listens to me, answers my questions, and responds with informed advice. As my way of showing gratitude for finally getting the care I need, I’ve donated my body to science while I am alive, and I am involved in at least 5 different PD research studies. I’m happy to announce, I’m back in my happy place and painting again.
