When Parkinson’s struck in youth

Parkinson’s is often associated with old age, but the disease can also strike before the age of 40. Facts, advice, and testimony from a mother of three, diagnosed at 36.

“Parkinson’s is a neurodegenerative disease, the second most important after Alzheimer’s,” says Nicole Charpentier, Executive Director of the Parkinson Society of Quebec. It affects more than 100,000 Canadians and it is estimated that it affects 25,000 people in Quebec. The disease, whose exact cause is not known, occurs following the premature death of brain cells that produce dopamine, a chemical involved in controlling our movements.

When the diagnosis falls, the people affected have already lost 80% of these cells. “The disease is manifested in particular by problems of balance and coordination, slowing of movements, muscle rigidity, and tremors, says Ms. Charpentier. It can also be associated with slow speech, trouble sleeping, problems with constipation, and symptoms of depression. The manifestations, as well as the evolution of the disease, vary from one person to another.

Early Parkinson’s

The average age of onset of the first symptoms of Parkinson’s is 55, but some people suffer from the early form of the disease. The latter are diagnosed before the age of 40. “This represents 5 to 10% of people affected, or between 1,250 and 2,500 Quebecers. In general, the disease progresses more slowly in patients with the early form. They also usually respond better to medication that reduces symptoms with molecules that replace dopamine.”

Diane Patenaude, now 55, was diagnosed early with Parkinson’s at age 36. “The first sign I observed was a hesitation going up the stairs,” she says. My right foot had trouble landing naturally on the step. Subsequently, I noticed difficulty in holding a spoon to eat soup and in handling my computer mouse. These two symptoms led me to consult. When I was told the diagnosis, I first thought it was a medical error. After a year, with the arrival of other symptoms such as leg pain, I had to admit that I did have the disease.

A debilitating disease

Diane Patenaude continued to work, but at age 44, seven years after the diagnosis, she gave up her position as director of a CHSLD. “I was terribly tired,” she said. My right hand no longer worked, I could no longer take notes. I had trouble speaking. My words weren’t coming as fast as my thoughts. I had memory lapses, I misplaced files. Before passing for incompetence, I bowed out.

By reducing his stress level, his symptoms decreased. But Diane Patenaude remains very active to fight the disease. She takes medication but does not hesitate to turn to alternative approaches to relieve her symptoms. “I go to a massage therapy in particular to relieve impatience in my legs. For a year, I have been taking an Immunocal protein, discovered by doctors at McGill University. It strengthens my immune system in addition to giving me energy.” Unfortunately, this product is not covered by insurance and is very expensive, she laments.

Tips for living with the disease

Exercising also helps alleviate her symptoms. This strengthens muscles and joints and improves mobility, flexibility, and balance. “I do yoga three times a week,” says Diane Patenaude. It keeps my posture straight because with an illness you tend to slouch. I also run exercise classes for people with Parkinson’s. We do strength training, jogging, and games. We get in shape while having fun. I also cut gluten, dairy, and refined sugars from my diet and since then I’ve been pain-free and haven’t had major constipation issues.” These good habits also allowed him to stop taking antidepressants and sleeping pills.

Ms. Patenaude enjoys the support of her husband, whom she calls her prince charming, and her three daughters. Not everyone has the chance to be well surrounded. This is why she is involved with the Société Parkinson Québec by supervising self-help groups. She also visits patients at home and in reception centers. “We have to talk about the disease, talk about what we are going through. It’s essential to get through it.” She also wrote the book À nous Deux, Parkinson! to share his experience and good advice. She is preparing a new one for the fall where it will be a question of hope. “There is no possible cure, it’s sad to death. I try to give some by talking about the latest scientific discoveries.