Only half of diagnosed Albertans get the specialized treatment they need: Parkinson’s Association

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

Symptoms changed, he had sleep problems and his speech changed – to the point where his wife couldn’t hear him.

„She thought she had lost her hearing, and I wasn’t really loud enough to scold,” said Schneider, a retired production manager at Theater Calgary.

The neurologist who diagnosed Schneider gave the number Parkinson’s Association of Alberta, This got him hooked on boxing.

„I was like a terrier dog. I jumped on it and grabbed it and started boxing two days a week, power moves three days a week,” Schneider said.

Boxing and regular exercise help with movement. Schneider also does voice exercises with the Parkinson’s Voice Program.

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„You put the two together and it’s almost like I’m a normal person,” Schneider said with a laugh.

The neurological disorder causes unplanned stiffness, tremors, and difficulty coordinating, and worsens over time.

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„We want to make sure people have access to the care they need,” said Lana Tortoff, executive director of the Parkinson’s Association of Alberta. „It’s a very, very long, complex and devastating disease.”

He said Alberta’s three movement disorder program clinics lack the capacity to see the volume of patients diagnosed as they progress through the disease.

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

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Patients can only 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 helps fill the gaps.

„I dread to think what would have happened if I hadn’t been locked into this group,” Schneider said.

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

„It’s a win-win situation. Students learn things and get the chance to volunteer with patients, and we collect a huge amount of digital data,” said Dr. Bin Hu, a professor of clinical neurology. Cumming School of Medicine.

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

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„Parkinson’s patients see their neurologist for an average of 45 minutes a year. So the idea is that these university students who want to volunteer can help.

“We started a program called Open Digital Health, where they learn technology. „They start research projects, they do internships and learn how to interact with patients and help patients use the devices,” Hu said.

OpenDH An educational program that allows students to gain hands-on experience with wearable technology, conduct research, and improve the lives of people with Parkinson’s disease.

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

The number of people suffering from this disease will double in the next 20 years.

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„If we can’t take care of them today, what are our plans to do so in the next 20 years?” Dortoff said.

Tortoff said there is no one-size-fits-all approach to Parkinson’s because the disease affects people in different ways.

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Schneider says meeting with others who have the disease is important in terms of building connections and hearing other people’s stories. He said it was also important to his wife.

„All of a sudden you’re dealing with people who have trouble sleeping, eating, walking and all the other things that can be there. I see people who don’t go. I don’t know why. They sit in a chair and say, 'It’s over,’ but it’s not,” Schneider said.

Regular training allowed Schneider to pursue one of his passions: working as a train conductor at Heritage Park in Calgary. He has had to cut back on his shifts a bit, but he still shares his love of trains and meeting new people.

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„I’ve learned how to treat myself better. I hope people see this and know they don’t have to curl up in a ball and they can continue to do things,” Schneider said.

Calgarian Monty Schneider was diagnosed with Parkinson’s disease in 2019.

Provided to Global News

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