Gwendoline Margaret Spurll

Gwendoline Spurll

Title: The Ministry of Funny Walks

Word Count 908

My son says that every time I open my mouth I say “Parkinson's,” and “Parkinson's” isn't funny.  He thinks I should stay away from this subject.  I think Parkinson's is hilarious.  How else could you find a serious doctor spending her days boxing,  singing,  dancing  and painting instead of looking after patients?  It's absurd, it is.  

I find myself joining the Ministry of Funny Walks.

Parkinson's does not just affect your body, it is affects  your mind, as well.  When your body is  moving an inch an hour, so are your thoughts. 

The door bell rings, and I rush at snail's pace down the stairs carefully holding onto the bannister to answer it.  Hurry up, there is someone at the door, and they are going to go away if I don't get there fast enough.  “Come back, don't go away after I've run down the stairs.”  Then I realize it is someone asking for  donations, and wish I had gone  even slower. 

Welcome to my world.  

Parkinson's disease is a chronic progressive neurodegenerative disease affecting  the cells of the substantia nigra or  “black substance” in the base of the brain. This area of the brain is responsible for co-ordinating certain brain functions.  The neurons of the substantia nigra  communicate with other brain cells using the neurotransmitter dopamine, and the amount of dopamine in the brain is reduced in Parkinson's Disease.  In the early stages the symptoms can be controlled by the administration of the medication levodopa, which the nerve cells turn into dopamine. 

Parkinson's Disease is characterized by slow movement and tremor. As the disease progresses, more of the neurons in the substantia nigra are lost and the patient is  progressively more dependent on levodopa treatment.  The patient  then exists in one of three states;  “off,” “on,” and “dyskinetic.” “Off” means the levels of levodopa are inadequate and  he  moves slowly.  In the “on” state he feels more or less normal. If the dopamine level is  too high, he has writhing movements and muscle spasms, called “dyskinesias” and “dystonias.” 

Parkinson's Disease is  unusual among brain diseases, in that patient's symptoms can some of the time be reduced or even eliminated by drug treatment and the  patient's state  can vary widely over the course of a day.  Many factors change  the response to the medications.  For example if I do some gardening I may use up the levodopa in my brain, and if I have just eaten before I take it I may not absorb it. On the other hand absorption is energy dependent and if I eat a meal heavy in carbohydrate the absorption is increased.  And MSG prevents the levodopa from acting at all.  It is hard to control all of these factors.   

I may decide, for example,  to have a steak for lunch after my boxing class, and forget what I am doing because the boxing has made me hungry, and absent-mindedly eat the whole steak.    The amino acids in the steak inhibit the absorption of the levodopa and I then spend the next eight hours in an “off” state, not responding to my medications and unable to do anything.

Anxiety is my worst symptom. Before I knew what was wrong I described myself as “rigid with anxiety.”    My level of  anxiety bears no relationship to how difficult my task is.  Perhaps the anxiety  relates best to the novelty of the task at hand.  For example, I can  make life and death decisions about  a  hematology patient without any difficulty, but when I offer to take a neighbour with Parkinson's Disease to my dance class I have a panic attack with a pulse rate over 200 and chest pain.  I end up in the resuscitation area of the Emergency Room for the night. 

Anger is another issue.  When I get angry I get careless and I risk injuring myself.  One day I make dinner for the family. No one shows up.  An hour after supper time the door bell rings, and it is my son.  He wants me to get up and unlock the door so he will not have to get out his key.  

“No, I don't like pea soup,” he says, when I announce dinner.  

Half an hour later the door bell rings again, and I am really pissed by now. I stand up fiercely,  fail to balance, and wake up on the floor with my arm lying  at an odd angle.  I scream for my son, and tell him to answer the door, then to call an ambulance.  I can't get up or move my arm, and I tell the dispatcher I must have broken it.  

Parkinson's affects my whole experience of life.  

The oddest thing is the rapid and unpredictable changes in the state of my mind.  

Doctors who treat chronic disease are fond of saying, “You are not your disease.”  But who  are we if we are not our conscious self, our mind.  And what is our mind but a reflection of the function of our brain? So when the disease affects the brain, it does affect who you feel you are.  There are many times when I feel totally normal, like my old self.  But often I do not, and it feels like an act of faith just to leave the house.  

But,  whatever the state of your health, it is important to maintain your sense of humour.  When you stop being able to laugh at life,  you are lost.