Parkinson’s Australia have just launched YOP-X, a free app for people newly diagnosed with Parkinson’s disease. This app is a world first, and includes tools which have been uniquely shaped by the first-hand experiences of people living with Young Onset Parkinson’s.
In this article by Alexandra De Vylder at Aged Care Weekly, Geoff, who is committed to positivity throughout daily battles with his Parkinson’s Disease, talks about how’s he’s determined to share his knowledge through the YOP-X app.
Geoff had a big smile on his face when he was diagnosed with Parkinson’s disease. He was just 50 years old.
“It was the first time in six years I actually had an answer,” he told me 14 years later. “I actually apologised to the doctor. I said, “I’m not happy that I have Parkinson’s, but I’m happy I’ve got a name I can now work with”.”
Geoff had spent the last six years with severe balance issues so that he could barely walk down the street. Finally, he knew what he was dealing with.
But he soon realised what he was in for. His doctor prescribed him drugs and told him what to expect for the rest of his life.
“All that was very negative. It was like, within three years you’ll be looking at early retirement, within four or five years you won’t be driving a car, within 8 years you’ll be needing mobility devices to get around. Within eight years you’ll have maxed out on drugs and you’ll be looking at alternatives like Deep Brain Stimulation.
“I haven’t ticked any of those boxes.”
Now, at 64, Geoff cycles between 200 and 450 km every week. He’s a team leader at his design job and gives presentations about living with Parkinson’s as a Parkinson’s Victoria ambassador.
Parkinson’s app helps people like Geoff
Experts are now more aware of ways to manage Parkison’s so people can live full and productive lives. Now there’s a free app that helps people navigate the condition.
The app, called YOP-X, focuses on key aspects of life with Parkinson’s Disease, including exercise, nutrition, mental health tools, relationships, and work. Neurologist Dr Paul Silberstein worked on the app other experts to support people post-diagnosis.
“We know that most patients with typical Parkinson’s disease will have a very robust response to medical treatment,” Dr Silberstein said.
“Generally speaking, for newly diagnosed patients, we would expect their physical function to improve by 60 to 80% (with treatment). Again, that effect can be further augmented by things like exercise and mental health strategies.
So most people with Parkinson’s disease will live very well with the condition for many years.”
Dr Silberstein said the app is relevant to anyone with Parkinson’s, even though it’s tailored to people with Younger Onset Parkinson’s Disease.
Is exercise a Parkinson’s Disease treatment?
At first, Geoff didn’t know that exercise could help him. It was only after a trip to the gym a year after diagnosis that he realised cycling on a stationary bike relieved his symptoms.
“I found that riding on those for twenty to thirty minutes, released all the stress and rigidity of my legs and the pain disappeared. I could actually walk a lot better for a few hours afterwards.
He progressed to road bikes with big tyres to help him balance. Now he rides voraciously on an “almost normal” bike as well as doing regular gym sessions, tai chi, and yoga.
“It gave ownership back to me a little bit.”
shows that exercise improves mobility and balance, mood, sleep, and relieves pain and constipation. Parkinson’s researcher Professor Colleen Canning writes that “high intensity exercise and exercise that challenges thinking and movement” can directly impact brain function. She recommends at least 30 minutes of “at least somewhat hard exercise on most days” to reap the benefits.
Dr Silberstein said mental health management is another major part of living well with Parkinson’s.
“About 50% of people with Parkinson’s disease will experience at some stage a clinically diagnoseable depressive illness. And typically, about 50% of people will suffer anxiety. And so, management of those aspects of the condition is very important to people’s overall health and quality of life.
“Certainly for mental health, both within and outside of Parkinson’s, exercise also clearly has beneficial effects.”
It’s not easy, but attitude is key
Coping strategies are key for Geoff, who is committed to positivity throughout daily battles with his condition.
“Each day you get up, and you just check yourself in, as in what sort of day is this going to be? and you know very quickly.
“In a lot of ways you’ve just got to accept that it’s never going to be constant, it’s never going to be the same as yesterday or tomorrow.”
Geoff had to find answers on his own, and now he’s determined to share his knowledge with others through the YOP-X app.
“Everything I’ve learned about Parkinson’s is through research. Ploughing in. And it was dogged. I had to really fight to try and get as much information as I could.
“There was so much I learned along the way. I just want to short cut it so that people don’t lose that drive and that initiative.”
The YOP-X app is free to download.