Raising awareness of Parkinson's

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Like all good weekend fishermen, Wayne Dawe would not reveal his "secret gullys" in Long Harbour and along the Southern Shore, where he has gone to fish with friends in the past. Yet the locations spring to mind when he is asked about how his life has changed over the last six years.

It began with a small thing, really.

"I started getting a tremor in my left hand," Dawe said.

"You've got a tremor in your left hand and you're trying to put a worm on a hook," he said, trailing off.

Wayne Dawe with his son Michael. - Submitted photo

Like all good weekend fishermen, Wayne Dawe would not reveal his "secret gullys" in Long Harbour and along the Southern Shore, where he has gone to fish with friends in the past. Yet the locations spring to mind when he is asked about how his life has changed over the last six years.

It began with a small thing, really.

"I started getting a tremor in my left hand," Dawe said.

"You've got a tremor in your left hand and you're trying to put a worm on a hook," he said, trailing off.

He went to his doctor about the problem.

Over the next six months he ran through a variety of medical consultations as well as a CAT scan. Following the testing, he was told he had Parkinson's disease. X-rays do not show Parkinson's, but can be used to rule out other potential causes.

Parkinson's is a neuro-degenerative condition named after Dr. James Parkinson, a British doctor who first described the illness in 1817. The symptoms of Parkinson's are caused by the death of dopamine-producing cells in the brain. Dopamine is a chemical that normally controls body movements, carrying signals between brain nerves.

"No one in my family had Parkinson's," said Dawe, who said the diagnosis in 2004 was not something he really expected, in looking at his family history.

Yet, as he would discover and as the Parkinson's Society of Canada has continued working to disseminate, Parkinson's disease has been shown to have a potential genetic component in only "a small percentage of cases."

Research into Parkinson's is exploring the significance of a protein called Parkin, as it has been shown to be mutated in some people with Parkinson's disease.

As well, the potential for environmental factors to affect the development of the disease are being looked at. However, nothing conclusive has yet been found in terms of the true cause(s) of the disease.

The exact number of people affected by Parkinson's disease in the country or the province is also not known, although there is a general idea.

"In Canada, we have no definitive study, so we use statistics from the U.S.," said Patricia Morrissey, executive director of the Parkinson's Society of Newfoundland and Labrador. "We say one in 300 people have Parkinson's. If you take that and divide it by our population, we have 1,600 people with Parkinson's."

The average age of onset for Parkinson's is 61, yet 10 to 15 per cent of people are diagnosed before the age of 50, she said.

Morrissey said she understands the effect Parkinson's can have on an individual and on families. In addition to her work through the society, her father lived with Parkinson's.

"Parkinson's is like this onion and you just keep pulling off layers, because it affects so many things," she told The Telegram.

Every individual living with Parkinson's has a different experience, dealing with different symptoms that progress at different rates.

She noted the consistent, full-body "shaking" or involuntary muscle movements that are a symptom of Parkinson's (seen in the cases of famous individuals from Muhammad Ali to Michael J. Fox) is a result of the use of certain Parkinson's medications, not a symptom itself.

Yet, there are two immediately recognizable symptoms of Parkinson's, she said. One is known as the "Parkinson's mask," wherein individuals may not blink as much, or the face is a little slack.

"That interferes with how they're received in public," Morrissey said.

The second is sometimes known as the "Parkinson's shuffle." It is a slumping of the shoulders, a hunching forward.

Each of these symptoms can lead to other problems. For example, the reaction of others to the unusual facial expression or movements is observed by those living with Parkinson's and sometimes leads to withdrawal or depression, she said.

"That postural part, that bending forward, is also hard on the lungs," Morrissey said.

There are also many other symptoms that appear in some, but not all, Parkinson's cases. These include: difficulty sleeping; freezing or hesitation in movements; difficulties with speech; and coughing or trouble swallowing.

Dawe said, in his experience, his energy levels have been affected.

"Some days you think you can jump over the moon and other days you got to pull in your horns and say, 'OK, this isn't a good day. I've got to rest,'" he said.

"The loss of this chemical in the brain affects the muscles and so this all gets affected," said Morrissey, adding that, again, there are associated concerns with each.

"If you're coughing all the time when you're trying to eat, you may not want to eat," she said, explaining proper nutrition then becomes an issue.

While hooking worms is the first thing that comes to mind for Dawe when he thinks of his symptoms, he went on to add his post-fishing tradition of sitting with a cold beer as another challenge - holding a can or bottle and drinking from it being difficult with his hand tremor.

Berry picking is difficult these days, too, he said. In the regular day-to-day, working buttons and tying shoelaces are two items he now has help with. His wife puts his contacts in every morning.

"That's the new normal," Dawe said simply. "The hardest part is coming to grips with it yourself.

"Studies have shown that it can induce compulsive behaviour, like gambling," he added. "But there's no sign of that in me yet.

As for treatment, there are better drugs available today than there were yesterday, with fewer negative interactions. There are also surgical therapies, but there is no cure.

Morrissey said this province has been "very good" in covering Parkinson's drugs.

"Actually, our government covers medications some other (provincial) governments don't," Morrissey said.

Under the umbrella of treatment and therapy, some interesting developments have been made in non-invasive therapies, using everything from magnets to laser pointers to nursery rhymes to jumpstart the brain. Exercise is important as well. Dawe said he attends an exercise class at the Miller Centre every Wednesday.

Chewing gum has even been proven as a potential therapy.

According to the Parkinson's Society of Canada's "Research Highlights: 2009-2011," Dr. Mandar Jog and speech pathologists Angela South and Stephanie Somers started asking people with Parkinson's disease, who came into Jog's clinic, to chew gum for half an hour before meals. Jog reported his clients would return saying they were swallowing and speaking more easily.

It was the simplest of informal studies and a far cry from the lab-intensive work now being funded to delve into the Parkinson's mystery.

The work is being done on behalf of individuals such as Dawe and those who have yet to be diagnosed.

"I'm thankful for my wife and son, for their support and continued encouragement," Dawe said. "And the same thing for my brothers and sisters, family and friends."

Since 1981, the Parkinson's Society of Canada has provided $16.8 million for Parkinson's research across the country.

As of last month, according to a statement by federal Minister of Health Leona Aglukkaq, the federal government had similarly invested $72 million since 2000. That includes $9 million spent on research in 2008-2009 alone.

These numbers are small, however, when compared to the "in excess of $450 million per year" the federal minister of Health estimated, in April 2009, as "the total direct and indirect costs to the Canadian economy associated with this disease."

As for those receiving a diagnosis of Parkinson's this year and in the future, Dawe recommended they develop their own tools to survive until a cure can be found.

He also provided us with his list of "Tools to Survive":

Ask for help when you need it.

Try to see the positive in everything.

Be nice to your caregivers.

Don't lose your sense of humour.

Remember: God doesn't give you trials without the strength to endure.

Know that Parkinson's does not affect individuals. It affects families.

For more information on Parkinson's and to connect with local people who have experience with the illness, contact the Newfoundand and Labrador chapter of the Parkinson's Society Canada at 709-754-4428, or by e-mail at parkinson@nf.aibn.com.

afitzpatrick@thetelegram.com

Organizations: Society of Canada, CAT, Society of Newfoundland and Labrador The Telegram Miller Centre Newfoundand

Geographic location: Long Harbour, Southern Shore, Canada U.S. Labrador

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