Turning Points

I am a hypochondriac, and my doctor knows it.  She knows me too well, identifies too strongly with me.  She does not like to make a serious diagnosis.  

In February, 2005, I was walking through Sears with one of my children, and I felt my left foot curl like the grasp reflex in a small baby when you put your finger in their hand.  This was very strange.  The grasp reflex is usually not present in adults, and if it is present it suggests disease in the frontal lobes of the brain, under the forehead.   Could I have a brain tumour?  I waited to have a seizure, but that did not happen.  

I went to see my doctor.  She said, “You would have to postulate something in the central nervous system.”  She asked me if she could ask the opinion of a neurologist.  

“It may mean nothing,” she told me, after speaking to him, and did not add that he had said that if it was something important it would declare itself.  

Two weeks later, my Department Chairman came to see me to ask if I would take over as site director of the Division of Hematology.  I agreed, somewhat bemused, since I was a bit old for a promotion.

Over the next few months I noticed my left arm did not swing as I walked,  my left hand had small spontaneous movements, and I kept falling.  My left leg dragged when I walked.  

I tried to attribute my symptoms to anxiety, and called myself “rigid with anxiety”.  A friend and colleague was certain the problem was not just anxiety and wanted me to go back and see my doctor. Finally in December she called the doctor herself, and told her I needed to see a specialist quickly.   My doctor replied that she had spent a full day with me that week at a workshop, and she thought I looked fine.  However she allowed herself to be persuaded to send me to see a neurologist.  

I saw the neurologist later that week.  She did a neurological exam such as I had never seen before.  When she finished I asked her what she thought was wrong.  She said,”You have Parkinson's disease.”

“But I don't have a tremor.”

“Forty per cent of Parkinson's disease patients do not have a tremor.”

“But the problems are all on one side.”

“Parkinson's is usually unilateral in the beginning.”

My immediate reaction was relief at finally having an explanation.   When you are a doctor, however, you can't accept any diagnosis without projecting it to its logical conclusion.  They say you don't die from Parkinson's disease, but that is a lie.  If I die due to a fall because of  Parkinson's disease, or  get aspiration pneumonia due to trouble swallowing from Parkinson's disease, how is that not dying from Parkinson's disease?  

The neurologist said that stress would make it progress faster, so as soon as I could carry on a conversation without crying I asked to be replaced as Site Director.  I reduced my work load gradually.   In December of 2009 I asked my neurologist, “Do I have to fall in my face in a mud puddle or can I get out of work gracefully,” and she told me that she would fill out disability forms when I was ready.  

I kept telling my friend and now director that I would be having to quit soon. Each time I did she asked me for a job description for another of my roles.  She could not face the fact that I could not continue working, though she had been with me when the neurologist told me she could keep me working for five years.  She never attempted seriously to replace me in any of my jobs.

I figured it would take 2 people to replace me.  “No,” she said, “five.”

I am no longer seeing patients, supervising labs, overseeing lab work, or advising on hospital, provincial, or national committees.  Instead I am looking after myself.  Exercising, singing, dancing, boxing,  painting, and now writing. 

One day someone followed me home from church to tell me that my driving was dangerous.  I turned in my license.  That was the hardest thing I have ever had to do. The bad driving was due to dyskinesia, abnormal writhing movements that are caused by the medications used to treat Parkinson's Disease.  These movements were causing my driving to be "swervy."  If I try to do active things while I have dyskinsia, I get motion sickness  and may vomit.  They cause me to vomit when I do microscopy, meaning I am vomitting in the lab.  I will have to give up the last work I am doing.  

There is something surreal about being able to do as you please instead of working all the time. Singing, dancing, boxing (what?), painting, reading.  But I have no choice, since at this stage of my disease, I can no longer predict when I will be functional, let alone when I can respond to emergenciesl.  By now I feel I have more in common with my Parkinson's friends than with my friends at work.  

I have a lot to be thankful for.  My husband, my kids, financial security, and some of my mind.  

But I would give almost anything to be well and working again.  I loved my job, every part of it. But perhaps it was the stress of my job that triggered the disease.