One woman's battle with Parkinson's

Enjoying the honeymoon period -- when the meds work
I remember driving to that follow-up appointment. I remember how incredulous I felt, sitting in my neurologist's office, thinking that this couldn't possibly be happening. But he confirmed it. I did have Parkinson's. I don't remember much about the trip home, other than the words "I have Parkinson's" playing over and over in my head. I had no idea what effect it would have on me, my family and my friends.

The first few years after diagnosis and taking the correct medication are often called the "honeymoon." I could function almost normally and took great pride in hiding my Parkinson's from people. I continued my business, sewing and creating teddy bears, rocking horses, kittens and much, much more to sell in my store.

Then I began to lose ground. One step forward and two steps back. The rigidity, tiredness, tremors, all began to take their toll. In 1990 I sold my store, the business I loved and had devoted myself to for the past seven years. It had become just too much.

Exploring alternative therapies
I decided to concentrate my efforts on beating the marauder. I told myself that although others had succumbed, I would not. I tried every new drug, every new complementary therapy, from acupuncture to reiki, massage therapy to neurofeedback and experimental surgery. Some helped a lot, some a little, and some not at all. Although I felt my mobility, my communication skills, my independence, my way of life, my wishes and dreams all slowly slipping through my trembling fingers, the disease couldn't take away my hope.

I kept up to date with the latest research findings through the network of friends I had made in support groups and on the Internet. In 1996 I heard of a study based in New York and Denver on a new surgical technique. I applied to participate and was accepted. After two rounds of brain surgery, I was convinced that I had finally won the war against Parkinson's.

Results slowly trickled in from Denver and New York City: "disappointing," "surgeries not successful," and "patients show little or no improvement." Well, that was everyone else, not me! No, I did feel better. But to this day I'm not sure whether I actually showed improvement or if I was just a powerful example of a long-lasting placebo effect.

Deep brain stimulation -- the last resort
Within the next five years I realized that I was slipping again. My husband and I discussed my options. I really only had one, deep brain stimulation, the implantation of a "brain pacemaker" that has helped many people with Parkinson's. It takes about two years to go from the decision to have this surgery to the actual procedure. I had gone through it once and changed my mind at the last minute. But when the muscle cramping became too painful and the involuntary movements more violent, I got in line again.

It has now been two years since that gruelling six-hour surgery. Finally, after many, many visits to my neurologist, I think we have found almost the correct settings on my pacemaker. My borrowed wheelchair now sits unused in the garage. How amazingly wonderful it feels to be able to stand up, put one foot in front of the other and actually walk! I have even begun to draw again, tentatively, but at least I can put pencil to paper and turn out something recognizable. And I haven't been stuck at the mall for a very long time.

The battle won, but not the war
However, being "still" remains a rare treat. My grandma would have asked me, "Must you fidget so?" Little bits of stress throw me into an uncontrollable tangle of moving arms and legs, and my left leg dances madly under the covers every night when I try to go to sleep.

Despite my best efforts and thoughts, I still have Parkinson's.

Unless a cure is found, Parkinson's will eventually win the war for control of my body. But until then, with the support of my husband and friends, I will keep my fists up, gloves on, ready to do battle.

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Lynda McKenzie is a wife, mother, proud grandmother, writer and artist living near Freelton, Ont. Since being diagnosed with Parkinson's disease 20 years ago, she has actively campaigned for awareness of this degenerative, dehabilitating condition. Unable to continue with her retail business, and forced to slow down, she has turned her creativity toward writing articles and stories, drawing whimsical characters and photography.

For more information:
• The Michael J. Fox Foundation for Parkinson's Research
• Parkinson Society Canada

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