My Battle with Parkinson’s
By Ryan, age 32, NB

It is 4:30 in the morning and I can’t sleep. Tonight is worse than usual. Most nights I can piece together probably four to six hours of actual sleep in between moments of discomfort. During these times, I have to get up to walk around to try to shake the stiffness out of my body. These little “walks” involve me shuffling out to the living room, thinking about lying on the couch, then deciding against it, knowing the struggle I will face whenever I decide to get up off the couch. Usually I decide to sit at the computer, check on my fantasy teams, email, banking, etc. The computer has a chair with arms of which I can use to push myself up to a standing position when I am done and decide to try another attempt at sleep. If I could just roll over in bed, I might be able to avoid this nightly routine.

When you have Parkinson’s Disease (PD), you have to face hundreds of these mini battles every day. Whether it be putting on a jacket or a shirt, making a meal, or typing (what I have typed so far has been a slow and frustrating task; my pills have not “kicked in” yet). These small tasks, which most people do without thinking about, a person with PD has to fight to get accomplished. My days now are filled with little frustrating “battles” . . . I will use that word a lot.

I have just turned 32 years old. I should be in the prime of my life, fit, having kids, working on advancing my career. I still am doing most of these things, but I have had to change my plans due to this unexpected bump in the road.

I used to be a teacher (I still tell the customs officers that’s what I do when I cross the border). I taught school in various places to different aged children for five years. I had to give up teaching a year ago. It was getting too difficult to stand in front of a group of teenagers with my arm flailing about, and spasming uncontrollably. This whole problem actually started my first year teaching on a native reserve in Northern Ontario. You could say ever since then, I never taught with a clear mind. I still don’t know if I would have loved teaching if I was “healthy,” but I think I would still be doing it.

Teachers have a hard job, but rewarding in many ways. I admire the good ones who do love their job, and give so much to their kids. It is not a job where you can slack off on days where you aren’t feeling tiptop. You must be on point at all times. Now I have times during the day when I feel (almost) normal, and I have times when I can barely move. I had to look for a different career path (I’m still trying to figure that one out).

As far as being fit, if you were to look at me, you would think I was in great shape. I am lean and in the right light I have a hint of a “six-pack,” which I always wanted. Unfortunately it took Parkinson’s Disease for me to get it. Because my body is always moving (usually uncontrollably), and my muscles are usually tensed up, I burn more calories than most people. I have dropped about 20 pounds in the past few years. I am now a lean, mean 6 foot, 175 pound fighting machine. At least this disease is good for something.

Although this weight loss is not entirely due to the disease. I exercise more than I ever did in the past. I have to. I try to start my day with some stretching and weightlifting, if you can call it that. My biggest dumbbell is 10 lbs. I then go on the treadmill for a while to loosen up. I usually have to wait for my pills to kick in before I can go on the treadmill, otherwise, I will almost fall flat on my face. The doctors call this a “shuffling gait,” When I am not feeling my best, my steps are short, my arms are stiff at my sides, and it feels like I could topple forward at any time. The thing is, if I stay on the treadmill too long, or work my body too hard, it really wipes me out for the rest of the day, or at least until I take my pills again.

And every evening my dog makes sure I take her for a walk. She doesn’t let me off the hook either. She will bark and whine until we go for our stroll around the neighbourhood. I put on my MP3 player and we walk. Sometimes we walk briskly and confidently, other times she practically pulls me up the street, and I try to keep up. It just depends on the night.

Actually when I write this down, it doesn’t seem like much. Maybe I should be doing more. Exercise is the only thing that will slow the progression of this disease-the ONLY thing. Sure diet is important, and a positive attitude really helps, but exercise is the key. There are no pills to slow this freight train down, no cure, nothing (yet). But hopefully, that is all about to change.

Well, I might try to get another hour of sleep (5:59).

April is Parkinson’s Awareness month. “You are not alone.” There are 19 chapters/support groups in the Maritimes. To contact the one nearest you, call the regional office at 1 800 663-2468 or go to www.parkinsonmaritimes.ca.

While the cause of Parkinson’s is unknown and there is no known cure, physicians are now better able to diagnose the condition, which leads to earlier treatment. The most common association with Parkinson’s is a tremor. Other symptoms include speech impairment, fatigue, impaired balance, rigidity, depression, difficulty writing, loss of facial expression, and sleep disturbance.

Several famous Canadians in the past year’s news were noted to have Parkinson’s including the Right Honourable Pierre Elliott Trudeau, Maurice Richard, the former Montreal Canadians hockey player, and Michael J. Fox. As a result of Michael J. Fox announcing that he has Parkinson’s many people are now realizing that it is not necessarily an older person’s disease. Increasing numbers of individuals are being diagnosed while still in their 30’s or 40’s.

You can live with Parkinson’s for decades. Since 1993 the average age of diagnosis has decreased to 52 from 63. For young onset, a diagnosis often means early retirement and complete life readjustment. Treatment with medication, and in some instances surgery, help to alleviate symptoms, but more research is needed to find the cause, improve treatment options, and cure Parkinson’s.

Parkinson Society Maritime Region is a health charity whose mission is to ease the burden and find a cure through advocacy, education, research, and support services to improve quality of life for all those affected by Parkinson’s.

For more information visit the Parkinson Society Maritime Region website at www.ParkinsonMaritimes.ca.