Personal Parkinson's

I was diagnosed with Parkinson's disease two years ago and during those short two years Parkinson's has become a dominant feature of both my physical and mental life.  It threatens to define who I am and ignores that I had previously lived without it for many years.  The disease itself is relentless and it attacks your existence with a slow but steady progression of infirmity.

In my working life I was a pharmacist for more than thirty years and in those years I dispensed many prescriptions for Parkinson's patients and the Parkinson look was very familiar to me.  I would never picture myself with Parkinson's and yet in recent years when I saw myself in the mirror there was something strange about the the way I carried myself.  My proud tall stature and thrown back shoulders had been replaced by a man who did not throw his shoulders back and had a stooped posture.   My wife did not like this and would frequently remind me to stand up and throw my shoulders back.

Being a pharmacist I also knew something about the pathology of the disease and the pharmacology of its treatment. In the 1990's I had evaluated the drug therapy of many Parkinson's patients when I worked as a long term care consultant pharmacist.  In that role I was always looking for drug interactions that might be making things worse for my patients.  A favorite book of mine at the time was Oliver Sacks Awakenings.  An account of early drug treatment with dopamine of a Parkinson's related disorder acquired by way of a flu outbreak in the early 20th century.  I knew about the disease but I was not looking for myself to have it.

Early Spring 2010 I had began to notice a stiffness and a twitching or trembling tremor in my left hand.  These symptoms appeared mostly when I walked rapidly or ran. With time my entire left arm stopped its natural swinging movement when I walked.  Mild stress also activated tremors that looked kind of strange and made people who were close to me uneasy.   At times my hand shook while my thumb and forefinger twitched as if rolling pills.  It did not take long for these bothersome movements to spread from my left hand side to my right hand side. The tremors on my right side have gradually become even worse than those on the left side.

I had concerns and my wife had concerns as well so I made an appointment and sought the help of my doctor. The stress of a doctor visit activated the tremors for him and he was impressed and promptly set me up to see an excellent neurologist, Dr Gierke.  Dr. Gierke evaluated me and at the times the symptoms were vague enough that he could not determine for certain what was going on.  He did say that "you have my permission to say you have a nasty tremor." A year passed watching symptoms that did not provide definitive clinical clarity to accurately call my condition Parkinson's or something else.  Dr. Gierke decided to take things a step further.  He ordered an MRI to rule out lesions or tumors.  It turned up nothing.  He decided that a second opinion might be helpful and sent me to the University of Washington Movement Disorder Clinic.  There I saw a specialist in movement disorders, Dr. Sammi.  A bright, obviously energetic award winning neurologist.  Similar to Dr. Gierke he examined me by watching my responses to a battery of specific neurologic tests.  This included such things as moving my fingers from out stretched arms to end of nose, rapidly opening and closing thumb and forefinger, tapping the floor with my feet, watching me walk and more.  After we finished he adjusted the glasses on his face and then without hesitation went on to explain why he believed that without a doubt I had Parkinson's. As with others who have lived with the medical uncertainty that precedes a Parkinson's diagnosis I was kind of relieved to finally know what I was dealing with.

I already knew that Parkinson's is a progressive, degenerative brain disease caused by the diminishing ability of certain cells deep within the brain to produce a vital ingredient for transmission of nerve impulses: dopamine. In other words it is as if an unidentified microscopic terrorist has invaded the brain's dopamine factory and blew it up. In this case instead of stopping the flow of oil it is the flow of dopamine that has been derailed.  In its absence all hell breaks loose.  Like other Parkinson's patients this process of diminishing dopamine likely started may years prior to any suspicions on my part and explains some issues experienced in my work as a pharmacist and others such as driving, slow response to stimuli and weight loss to name a few. In fact nearly 60-80 per cent of normal dopamine stores are depleted at the time of diagnosis.  The disease is officially incurable at this time.  It progresses slowly and manifests itself differently in every patient who suffers with it. 

It is now two years later and I think I am living pretty well with Parkinson's. My symptoms are well controlled by several drugs that have been prescribed to cover a multitude of annoying but bearable symptoms. Two of the drugs prescribed, work by either stimulating the brain receptors that are lacking dopamine or by adding dopamine that my brain has quit producing.  Their dosages have been slowly moved up over a period of many months and further adjustment will be needed as dopamine depletion and the disease progresses.  For me these two drugs (ropinarol and carbidopa/levodopa) are fir the present working well.  They have helped not only the tremors but also other annoying symptoms such as a diminished ability to perform basic functions like button your shirt buttons.

There is however another nasty catch to Parkinson's.  It has a variety of other symptoms that extend beyond its primary target of movement controlled by the central nervous system.  In my case so far this has meant a couple of toughies: toilet plugging constipation and urine incontinence or oops, the on and off switch for my urinary tract seems broken.  A trip to the urology department at the VA for these problems was very helpful.  They added a laxative and a stool softener that have done a nice job of persuading my bowels to not sleep on the job and for the other tough to mention problem they added two drugs targeted at two separate pieces of the urinary puzzle.  Dicyclomine was added to block the bladder spasms thought to be a part of Parkinson's. Tamsulosin was prescribed to open the urine pathway being narrowed by an aging prostate.  Thankfully these two drugs have dramatically turned around the problems with the urinary system.

So here I sit pecking away at my trusty computer living with Parkinson's and looking forward to a full and productive finish to my life.  Thank God for my wife and partner who will walk by my side in this process.

As for this, I am looking forward to sharing what I learn about this disease with those of you whom I hope will be my readers.  For now on this particular night I am very tired due to a long day and a persistent sleep problem that wakes me most mornings anywhere from midnight to 4:30.  Yes, Parkinson's causes that as well.

Welcome to Parkinson's

Shaky in Coupeville