It was the Weirdest Thing
DIAGNOSED AT 46
DIAGNOSED AT 46It was the weirdest thing. At first I thought it was funny as in ha ha and then peculiar. A couple of years later, I did not think it was funny as in ha-ha at all, and so started my life’s journey with PD.
For four or five years prior to my diagnosis with Parkinson’s Disease in February, 2010 at the age of 46, I noticed that when I yawned, without fail, my left arm and hand would tremor. I thought it was weird, but I passed it off as strange phenomena. I did not feel the need to get a medical opinion until I attended a family Christmas celebration in 2007. I yawned and tremored in front of my nephew’s wife, who at the time, was a third year medical student. In the middle of the kitchen surrounded by family members I decided to tell my “yawn and tremor” story to my niece in-law and to all who would listen. She asked a few questions and performed a reflex test and upper body strength test and advised me that I passed and she had no idea of why I tremor when I yawn. I thought no news was good news, and I really was not too concerned about it anyway.
Fast forward to early summer 2008, my life partner, Steve, and I decided to take up serious road bike riding to prepare for a 300 mile/four day HIV/AIDS fundraising ride in August. Not being in optimal physical condition and riding with others who were, I needed to push myself to keep up in the training group rides. When I became fatigued and we stopped for a stop sign or a rest stop, I felt the tremor on my left side but now including my left leg and foot. So now I was thinking my glucose levels were low and I was diabetic, I drank too much caffeine, or this tremor is a normal body reaction to physical stress. I bought a glucose tester and monitored my blood sugars for weeks with normal numbers. So I concluded that my biking tremor was my natural response to physical fatigue. As the training season went on and I became more fit, the tremor frequency and severity during rides declined and stopped. My mind was eased. It had to be a normal nervous system thing. In August 2008, Steve and I rode the 300 miles throughout southern Wisconsin over four beautiful days without any tremor at all. My lesson learned was to stay in shape to avoid tremors from fatigue.
The winter of 2008-09 brought on some new conditions that I did not quite understand. I started to notice that my left hand was slow when I was showering and shampooing my hair. I felt strange as I walked. My left leg felt heavy when I lifted it in a sitting position. My left fingers did not cooperate at the keyboard. Buttoning buttons became awkward. My left pinkie was twitching, and my left hand and arm tremored occasionally when I was not fatigued. Some of the symptoms would come and go but the slow movement was there to stay.
I decided it was time to get this checked out. In late January 2009, I went to see my GP. He could or would not diagnose anything so he referred me to a neurologist as I expected. I could not get an appointment to see the neurologist until April, so in the meantime, I started researching online. Was it a brain tumor?, Was it MS?, Was it ALS?, Was there too much stress in my life?, Was it PD? Was it another neurologic disease? I spent hours and hours, night after night, reading and sorting out the junk from the reputable information. I was preoccupied and consumed with finding out what was wrong with me. I developed a sneaking suspicion that I had PD.
On April 20, 2009, I finally had my appointment with the neurologist. I had my list of symptoms and questions all typed up. She asked some questions and conducted the routine neurological exam. She ruled out a brain tumor and ALS to my relief. She explained to me that there were no diagnostic tests to diagnose many neurological diseases (unless I wanted a brain dissection) and that we’d have to monitor the symptoms over time for a diagnosis but Parkinson’s Disease was a contender. She was not able to make a diagnosis but offered essential tremor as a less serious possibility so she gave me a prescription of a beta blocker for that possibility and sent me on my way with a ” come back in six months and we’ll go from there.”
During the spring and summer of 2009, the tremor and slow movement on my left side persisted in my normal day to day living routine. Steve and I planned to do the ride again in August so we started to train in earnest in May. During the twelve weeks training season, the tremor reared its ugly head during times of rest after fatiguing. The ride and the first weekend of August quickly arrived along with hot and humid weather. The 2009 ride proved to be much more difficult challenge due to heat, humidity, hills, rain, and wind. Up to the third day of the ride, my symptoms were mild , but on hot, humid, and windy day four, after three days of difficult riding, with sixty miles to go, my tremors presented intermittently while riding. This raised my level of concern and I finished the ride but it certainly was not easy. During the following months, my symptoms of left-side occasional tremor, and slow movement seemed to have stabilized.
My second neurologist appointment was on December 9, 2009. I showed up with my typed list of expanded symptoms and more targeted questions. She conducted the routine exam and asked about the beta blocker medication efficacy. I reported that the meds had little effect on my tremor. She again was not able to make a diagnosis and advised me to and come back in six months. Returning to work that day, I started to notice an even more awkward feeling as I walked and that my left arm was not swinging as I walked. I soon found out others noticed this too. A couple of days later, I was walking down an aisle at work in front of another employee who noticed my gait and asked me if I had a stroke. This shocked me but I explained that I had something going on neurologically and quickly returned to my desk with my mind racing to call my neurologist and report this incident. I was able to talk to the neuro nurse who said she’d report this to the doctor and get back to me. An hour later, the nurse called me back saying the doctor prescribed and ordered Sinemet which I recognized as a dopamine replacement Parkinson’s Disease drug. So I asked, so does this mean I have PD? She said that “apparently” Parkinson’s Disease was my diagnosis and that the meds could verify it. I picked up the meds and advised my pharmacist of my trepidation on this drug at age 46. She agreed but I took the meds home and decided not to take them. The next day I informed the nurse I agreed with the diagnosis but was not comfortable with starting the dopamine therapy considering my age and as I researched other alternative drugs for early onset patients. I asked her to make a request for me to the neuro for a referral to the movement disorder clinic at the local teaching hospital/clinic. She obliged and the next day I received a call from the movement disorder clinic to make an appointment. The next available new patient appointment was in five months. I took it but asked to be placed on the cancel list.
As luck would have it, a snow storm hit and caused cancellations in early February and because I live close to the clinic, I was able to get in to see the movement disorder specialist. She conducted the exam, asked me questions, and the diagnosis was confirmed. I expressed my concern about taking levodopa right off the bat and she agreed and discussed my treatment options with me. I decided on a treatment plan and went home to go on with my life.
Over two years have passed and life goes on albeit with a different mindset.
Today, my symptoms are still more of a nuisance than a hindrance, but I know that will change in time. I continue to work and hope to for a long time. Steve and I love to travel and we plan to insert more pins in our world map hanging on the hallway wall for years to come. I do all the things I have always loved to do and Parkinson’s Disease has offered me more things to love to do. I now have a new hobby to explore and study on a daily basis. I have met many new people who have enriched my life. I now exercise a lot more and participate in a weekly Parkinson’s Disease exercise class and a Parkinson’s Disease Zumba dance class. And I’m training for another 300 mile/four day fundraising ride. I am sure there will be more weird things that will come along my way in my future. I just hope that they are more funny than peculiar. I am so grateful for the loving support of my friends and family, especially Steve, my care giving life partner of twenty-three years. They all travel with me on my life’s journey with Parkinson’s Disease and help make my life more funny as in ha-ha than peculiar.