Parkinson’s symptoms unpredictable, ever-changing

Danette Dooley
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Norma Dutot works on a puzzle in her Port aux Basques apartment. She has been battling Parkinson’s Disease for 20 years, and raises money each year for research into the disease.

Special to TC Media

Norma Dutot of Port aux Basques is so disabled with Parkinson’s disease that she cannot put on her socks or tie her shoes. Oftentimes, she’s unable to raise her arms above her head to take off her T-shirt. But one thing the disease has yet to rob from this friendly woman is her voice which she uses to help raise money for the Parkinson Society Newfoundland and Labrador.

In September 2012, Dutot participated in the SuperWalk for Parkinson’s and raised $1,170 for the cause.

“I’ve got lots of friends and when they found out I was doing this, they sent me money,” the 77-year-old says.

Dutot is originally from Cape La Hune on the province’s southwest coast. She moved to Port aux Basques with her parents and siblings when she was 14 years old.

She and her husband Maxwell were married 53 years when he died in 2009 from complications of kidney disease.

Dutot has been living with Parkinson’s disease for 20 years. She didn’t let her own illness stop her from caring for her husband for over a decade after he became ill.

“He’s what kept me going. I knew I had to look after him or put him in a home. And I promised him I’d never do that.”

When her husband needed regular dialysis, the couple moved from Port aux Basques to Stephenville as dialysis wasn’t available in their hometown.

“We were in there 11 years and then he got really sick. The doctor told me he only had days left to live so we brought him back to Port aux Basques. And that’s where he died.”

After her husband died, Dutot moved back to Stephenville while she waited for a suitable place to live in Port aux Basques. She now lives in an apartment complex in Port aux Basques where home support workers help her with her daily needs.

“I try to do what I can but that’s not much. I get tired really quick and it’s getting worse and worse. That’s what the doctors tell you, that it only gets worse. They don’t give you much encouragement.”

Parkinson Society Canada describes Parkinson’s as a neurodegenerative disease. Movement is normally controlled by dopamine, a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die, the symptoms of Parkinson’s appear.

Parkinson’s can affect a person in so many different ways - from moving freely one moment to being frozen in the next. It also causes problems with loss of voice and swallowing.

Dutot says she was devastated when a physician in Corner Brook told her she had Parkinson’s disease. She was 57 years old at the time.

“(The doctor) told me you’ll never get better. You’ll only get worse. I was scared to death.”

Dutot asked the doctor if he had any printed information about Parkinson’s. His answer, no he did not.

“I went out and sat on the stool and I started to cry. This lady came along and put her hand on my shoulder. She said ‘What’s wrong, my dear.’ I told her I’d just be diagnosed with Parkinson’s. She said, ‘My dear, I’m the right woman. God must have sent me here today.’ She said, ‘You come on down to my place now. I’ll get you a cup of tea and give you all kinds of pamphlets.’”

The woman was Joyce Humphries.

Humphries become a great advocate and volunteer for the Parkinson’s Society when her husband Noel Humphries (who passed in 2003 at age 68) was diagnosed with Parkinson’s. She received several awards for her dedication in raising awareness about Parkinson’s disease.

Norma is a rare person in that she freely tells you that Parkinson’s is not pretty. She is also a great example of a person who does not give up easily. Norma inspires me and I think she inspires others just by her determination and her sense of independence. – Patricia Morrissey, executive director of Parkinson Society Newfoundland and Labrador

Humprhies and Dutot have remained good friends.

Dutot’s early symptoms of Parkinson’s disease was a twitching in her knee. Within a couple of years she found both legs tired easily. Just as doctors foretold, her symptoms progressed over the years. After an extremely bad episode about two years ago that left her unable to walk, one doctor told Dutot she’d have to move into a seniors’ home.

However, another doctor explained to Dutot that she could go home to her apartment if she had a personal emergency response system known as a Lifeline. Dutot’s family put the system in place and she’s been living in her apartment ever since.

While there is no cure for Parkinson’s, people with the disease can live for years once treated with medication.

Dutot said her drugs have increased in numbers over the years.

Initially, she was taking one pill a day she now takes 25 pills a day.

“If I didn’t take them I wouldn’t be able to move. I got a job now getting out of bed.”

Dutot spends her time doing puzzles and socializing with the other people living in the apartment complex.

Her son and daughter and their families are good to her, she says, and the other tenants bring her meals and check in on her all the time.

“I’m in a good place.”

Parkinson Society Canada is the national voice of Canadians living with the neurodegenerative disease. Through its ten regional partners and 240 chapters and support groups, the society provides education, support, and advocacy on behalf of over 100,000 Canadians living with Parkinson’s. The society also funds innovative research on the disease.

Patricia Morrissey, executive director of Parkinson Society Newfoundland and Labrador says an estimated 1,600 people in this province have Parkinson’s disease. Most of them are over the age of 60. With anaging population these numbers will grow, Morrissey says.

Morrissey is the only paid staff person with the society in this province. Therefore, she says, volunteers like Dutot are invaluable.

“Not only is Norma active in raising funds but, more importantly, she is the face of a disease that few people understand,” Morrissey said.

Not many people in the general public realize what an all encompassing disease this is, Morrissey said.

“Norma is a rare person in that she freely tells you that Parkinson’s is not pretty. She is also a great example of a person who does not give up easily. Norma inspires me and I think she inspires others just by her determination and her sense of independence,” said Morrissey.

While it would be easier to just stay in bed some days, Dutot says, people with Parkinson’s need to push themselves to be as active for as long as they possibly can be.

“I try the best I can. I’m never going to give up.”

For more information on Parkinson’s disease visit www.parkinson.ca

 

danette@nl.rogers.com

Organizations: Parkinson Society Newfoundland and Labrador.In, Parkinson Society Canada, Parkinson Society Newfoundland and Labrador

Geographic location: Port aux Basques, Stephenville, La Hune Corner Brook

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