My Journey

By Rex Moore

Diagnosis

I was first diagnosed with Parkinson’s disease on November 18, 1993.  I was 41 years old, and looking back now I realize that some of my symptoms had first surfaced years earlier.  But as they say, hindsight is 20/20, and before that fateful day I was cruising along in life unaware of that big monkey that had already jumped on my back.
 
However, in the months preceding my initial diagnosis I started to notice that my handwriting was getting smaller and it was more of an effort to write up my weekly sales reports.  I was also bothered by the way my left arm hung limply by my side while walking.  When competing in my beloved weekly badminton, squash or tennis matches my left arm curled up on my chest like a grasshopper’s leg.  Some of my competitors had noticed my new court posture and made comments about me being a one armed bandit.  At work, I even joked that maybe I had suffered a stroke.

After my initial diagnosis, I hastened back to my family doctor and requested a second opinion.  He referred me to a movement disorders specialist.  After a few questions and some introductory remarks the doctor asked me to walk down the hall, turn around and walk back. After that short walk we sat down in his office and he told me “You’ve got Parkinson’s disease.”  It was a confirmation of what I already knew in my body and mind.
 
Still, my first reaction was “You’re kidding! That disease is for old people, isn’t it…what is Parkinson’s disease anyway?”  I was given some explanatory literature about the disease.  After I picked myself off the floor, I drove home in a daze.  I broke the news to my wife Laura and we hugged and cried in the middle of the kitchen.  We had been married for barely a year and from that fateful day, December 7, 1993 (the anniversary of Pearl Harbour) we have had to learn how to cope and adapt to that surprise attack on my life.

Symptoms

In my experience, I have found that every Parkinson patient has a different combination of symptoms and his or her own way of coping with their illness.  My symptoms are rigidity, slowness of movement (bradykinesia), trouble getting started when walking, weak or lower voice volume and frozen facial expressions.  I do not suffer as much as others with shaking (tremors) or involuntary movements (dyskinesias).

As my disease has progressed, I have found that I encounter more “off” periods during each day.  There are the “on” periods of the day when I feel like a million bucks, but there are periods when I feel like I’ve been run over by a truck.  It’s hard to explain to the able-bodied, the feeling of my body on “total reject.”  There is a frustrating and maddening period of time (usually 1-2 hours) before my medication kicks in, during which I experience a complete and utter feeling of unease with my body.  There is no real distinct pain, just an overall shutdown of my system.  I call these periods my “Frankie” moments.  Hide the women and children, Frankenstein is on the loose.  I am transformed into a stumbling, bumbling, lurching monster; albeit a kind-hearted, misunderstood monster.

Sometimes, after my morning shower, the effort required to shave, floss and brush my teeth leaves me a sweaty mess ready for another shower.  It’s lucky I don’t have to wear a tie. We PD people have to work 50% harder to get anything done.

I like to use a pastime from childhood as an analogy to my condition.  My family always took our summer holidays in the Okanagan Valley.  We occasionally enjoyed heading out to the local go-cart track for a family challenge race.  My brother and I always tried to grab the carts that had the most power, as opposed to those carts that were outfitted with a “governor”, a mechanism that limited the top end speed of the cart.

I’m like one of those go-carts, I’ve got a governor on my system, and it only allows me to complete so many tasks in a day!

Medication

I think about my disease 24 hours a day, 7 days a week, 365 days a year; I have to…I take 25 pills per day.  It’s always easy to locate the pill bottles for the person with PD; their bottles are the ones without the lids screwed on tightly or properly.  Every day is a chemistry experiment in my body as I strive to offset my lack of dopamine with a plethora of prescription pills.

Depression can be a major side effect of PD for some people. I tried an anti-depressant for a brief period of time.  I found it had little effect on my disposition, and I actually was more depressed about not being able to have the occasional beer or glass of wine with dinner! However, I know that for others these prescribed medications can make a major difference in helping them maintain a positive outlook each and every day.

Coping

I have had to make adjustments in my lifestyle in order to get the most out of life. I have endeavoured to lessen stress and physical exertion on a daily basis.  I now work from home and find this arrangement better suited to my condition.  I am able to schedule my sales calls around my on/off periods and still be productive.  It would be impossible for me to handle a nine-to-five job now, as I cannot be in front of people constantly and be effective.  I have also curtailed my strenuous games of badminton, squash and tennis; they just take too much out of me, so now I play for fun. Golf is a good fit because with its handicap system you can have a good game with anyone.  It is a sport that you can play all your life, and if walking becomes difficult you can take a cart.  Exercise is paramount in dealing with PD; I try to do a workout 2 to 3 times a week.  My workout involves riding a stationary bike, pushing light weights, core bodywork, stretching and flexibility.

The last ten years have been both the best and the worst of times.  A debilitating disorder has overtaken me.  But I don’t think too much about where I might end up.  There is no cure at this time.  I don’t want to know too much about the stages of this disease.  That is why I have not sought out any support group. Sometimes ignorance is bliss. I am aware that many others find comfort in the support, camaraderie and vital resources available through support group meetings. As they say, "Whatever gets you through the night!"

Over the last ten years I have had the pleasure of starting a family and I couldn’t imagine a life without our 8 year old boy, Nigel and his 3 year old sister, Olivia.  They too are adapting to our situation.  Laura has been a lifesaver in this sea of physical torment.  She didn’t sign on for this duty, but she has been a great supporter and knows when to employ empathy or use the velvet hammer to keep me moving.

The financial burden of PD cannot be understated.  Our family has been lucky enough to keep our heads above water due to Laura’s excellent performance at her job, my part-time sales revenue and help from our families.  Unfortunately, Laura has not had the time at home she would have liked and we are juggling kids and duties to fit a tight schedule. I know it is a difficult challenge for other families and individuals who are having a hard time financially due to the fact that they have to spend more (on support and drugs) while earning less due to the onset of PD.

Conclusion

Parkinson’s disease is a disorder of the brain not of the mind.  It can be embarrassing for many because of the tremors, slowness, and other symptoms that often accompany this affliction.  There are probably many people with PD who are afraid to leave the house.  For them it takes a great effort to go out in public, and any undue attention induces further stress and side effects.  Yet we who struggle can take some solace in the words of Michael J. Fox; “everyone has his own bag of hammers.”  We all have something we have to deal with in our lives.  We are all lucky to have Michael as a spokesperson, and we must remember to continually thank our families and friends, our doctors and support staff, the researchers and donors, all those who strive to find a cure and make our lives more liveable.

Rex Moore is a Board Member of the Parkinson Society, British Columbia