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Only half of Albertans diagnosed get specialized care they need: Parkinson Association

Click to play video: 'Parkinson Association says only half of diagnosed Albertans are receiving specialized care they need'
Parkinson Association says only half of diagnosed Albertans are receiving specialized care they need
Parkinson Disease is the fastest-growing neurological condition in the world. It causes shaking and impairs a person's ability to move and speak. The head of the Parkinson Association of Alberta says only half of the people diagnosed now are receiving the specialized care they need. Carolyn Kury de Castillo has more on what is being done to help people after the life-changing diagnosis – May 14, 2023

Monty Schnieder is new to boxing. The 72-year-old Calgary man donned the gloves to take on the biggest fight of his life against Parkinson’s disease.

The symptoms started off with shuffling, sleep problems and his speech changed — to the point where his wife could barely hear him.

“She thought she was losing her hearing and it was actually me not speaking loud enough to project,” said Schnieder, a retired production manager with Theatre Calgary.

The neurologist who diagnosed Schneider gave him the number for the Parkinson Association of Alberta, which connected him to boxing.

“I was like a terrier dog. I jumped onto it and grabbed it and started off doing two days a week of boxing, three days a week of power moves,” Schnieder said.

The boxing and regular exercise helps with mobility. Schnieder does voice exercises too with the Parkinson Voice Project.

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“You put the two together and it almost makes it like I’m a normal person,” said Schnieder with a laugh.

The neurological disorder causes unintended stiffness, shakiness and difficulty with coordination, and worsens over time.

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Oscar-winning director Davis Guggenheim on new doc ‘Still: A Michael J. Fox Movie’

“We just want to make sure that people have access to the care they need,” said Lana Tordoff, executive director at the Parkinson Association of Alberta. “It’s a very, very long, complicated and devastating disease.”

She said the three movement disorders program clinics in Alberta don’t have the capacity to see the amount of patients who are diagnosed as they progress through the disease.

“Of the people who are living with a diagnosis today in Alberta, it would be generous to say that half of them are receiving the specialized care that they need,” Tordoff said.

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Patients may only be able to see a neurologist once a year, which is challenging when symptoms are constantly changing. That’s where the support they get from local Parkinson’s groups help fill the gaps.

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“It scares me to think what would’ve happened if I wouldn’t have locked into this group,” Schnieder said.

Click to play video: 'Understanding the disease on World Parkinson’s Day'
Understanding the disease on World Parkinson’s Day

University of Calgary students are now using AI technology, music and exercise while volunteering as health coaches to help those with Parkinson’s disease.

“This is a win-win win situation. Students learn things and have the opportunity to volunteer with patients and we are collecting a tremendous amount of digital data,” said Dr. Bin Hu, a professor in clinical neuroscience at the Cumming School of Medicine.

Hu said many patients have very little connectivity with doctors regarding their Parkinson’s diagnosis.

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“Parkinson patients see their neurologist for an average of about 45 minutes a year. So the idea is that these university students, who are very motivated and want to do volunteering work, can help.

“We initiated the program called Open Digital Health, where they learn technology. They initiate research projects, they do the internship and they learn how to communicate with patients and how to help patients use devices,” Hu said.

OpenDH is an educational program that allows students to get experience with wearable technology, conduct research and improve the lives of people with Parkinson’s disease.

Click to play video: 'World Parkinson’s Day'
World Parkinson’s Day

The disease is the fastest-growing neurological condition in the world.

The number of people with the disease is expected to double in the next 20 years.

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“The concern is that if we can’t take care of them today, what are our plans to do so in the next 20 years?” Tordoff said.

Tordoff said there isn’t a Parkinson’s one-size-fits-all approach because the disease impacts people in different ways.

Click to play video: 'Alberta MLA Tracy Allard not  running again after Parkinson’s disease diagnosis'
Alberta MLA Tracy Allard not running again after Parkinson’s disease diagnosis

Schnieder said meeting with other people with the disease has been critical in terms of making connections and hearing other people’s stories. He said it’s been important for his wife too.

“All of a sudden you’re dealing with people who are having trouble sleeping and eating and walking and all the different things that can be there. I see people who won’t go. I don’t know why. They’d rather sit in a chair and say: ‘It’s over,’ but it isn’t,” Schnieder said.

The regular exercises have allowed Schnieder to continue with one of his passions: working as at train conductor at Heritage Park in Calgary.  He’s had to scale back his shifts a bit but he’s still there sharing his love of trains and meeting new people.

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“I’ve learned how to pace myself better. I hope people will see this and know they don’t have to roll up in a ball and they can keep doing stuff,” Schnieder said.

Calgarian Monty Schnieder was diagnosed with Parkinson’s Disease in 2019. Supplied to Global News

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