Parkinson's disease has moved into the spotlight in recent years, to a great extent due to the public lives of well-known sufferers such as actor Michael J. Fox, Pope John Paul II and boxer Muhammad Ali. Michael J. Fox in particular, through the Michael J. Fox Foundation, (www.michaeljfox.org) has brought publicity to young-onset Parkinson's, which affects people diagnosed before age 40, and to the need for stem-cell research to find cures for this and other diseases.
April is Parkinson's Awareness Month. Over 100,000 Canadians and 6.3 million people worldwide have Parkinson's. Find out more at www.parkinson.ca.
Ontarian Lynda McKenzie was diagnosed with Parkinson's disease 20 years ago, when she was just 34. Here she describes her battles with the condition and her attempts to win the war.
It happened quickly. I was late taking my medication. There I was, at our local mall, sitting on a bench, stuck. My arms felt like they weighed a hundred pounds and my feet were glued to the floor. I had my medication in my purse, but the trick was in being able to actually open it. I felt as though I was moving through thick, wet cement as I fumbled in my purse and retrieved my pill box. Finally I swallowed my pills. I tried not to panic as I sat there, rigid, unsmiling, trying to look as though I wanted to be there. I mentally planned my route from the bench to the planter, to the display unit and to the phones. I cautiously stood up, steadied myself and shuffled to the planter, trying to ignore the curious stares around me. When I pointed myself in the direction of the display unit, I heard a familiar voice. It was a good friend of mine who insisted on taking me home. What a relief! But then, it wasn't the first or the last time I got stuck somewhere.
The road from denial
It was an honest mistake when I stood in front of those people and told them that all they had to do to make their symptoms go away was have a positive attitude. My intentions were good. At the time, it worked for me. In my mind, the symptoms did go away. I pretended a lot then. I could conquer this masked marauder that had invaded my body. I could ignore it, get past it, deny it.
How wrong I was.
My gloves were on. I was ready to fight. But every task, every part of my normal routine became more of a challenge. The faster I ran, the slower I got. I was late for appointments, I cancelled plans with friends, I fell asleep during the day because I couldn't sleep at night. I lost my driver's license, and I spent many hours battling painful rigidity and wild, involuntary movements.
How Parkinson's reveals itself
Parkinson's disease is like that. Some people battle with the tremor that begins as soon as they rest their hands in their laps. For others, the ultimate challenge is the leg that drags, the writing that becomes illegible, the soft voice that people have difficulty hearing. For many it is the depression that wraps them in a thick black blanket. All people who battle with Parkinson's have their own unique combinations of symptoms to contend with.
My journey with Parkinson's began when I was 34, in 1987. I thought I had it all. I had my own business, a young son and daughter, a home, a supportive family and great friends. Then one more ingredient was thrown into the soup: Parkinson's. As there is no definitive way to diagnose Parkinson's, no blood test or x-ray that positively says "yes" or "no," I was diagnosed by being prescribed Sinemet, a combination of levedopa and cardopa, and told to come back in a month or so. If I felt better, that meant the drug was working and I had Parkinson's. If it didn't, I was off the hook and I would be still searching for an explanation for my symptoms.
The following month I scoured the library for information on Parkinson's disease. All I could find were pictures of older ladies and men hunched over and using canes. That wasn't me! Meanwhile, I had stopped dragging my right leg on walks with my neighbour, I could write out bills at my store, and I realized that the whole world wasn't going deaf anymore -- I was now able to talk louder. I began to feel better.
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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.
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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