Wednesday 21 August 2019

'I didn't choose Parkinson's. But I make the best out of the time I have'

We talk to John MacPhee, a 50-year-old Parkinson's sufferer who credits an app developed by an Irishwoman with slowing down the deterioration in his walking and smoothing out his gait

John MacPhee uses the beats medical app on his daily walks. Photo: Alan Richardson.
John MacPhee uses the beats medical app on his daily walks. Photo: Alan Richardson.

Vicki Notaro

When you're diagnosed with an illness that has no known cure, it can be really difficult to imagine a future without constantly thinking of your health further degenerating. But alongside modern medicine, improved technology is also helping those live with long-term diseases to live a more independent life for longer. In this instance, it's Smartphone software that's aiding those living with Parkinson's disease; and in an era where we hear about the need for digital detoxes and social media anxiety, it's refreshing to discover a personal technology that's actually helping.

The product is Beats Medical, an app devised by founder and CEO Ciara Clancy, 25 from Dublin.

"Helping people with Parkinson's was one of the reasons I wanted to become a physiotherapist. However it was while working as a therapist that I discovered a clinically proven treatment called auditory cueing, or metronome therapy. The treatment had a profound impact when provided in clinic on the walking and movement symptoms of Parkinson's disease."

The therapy has been around since the late 1960s, but according to Ciara, was difficult to come by. "Access to the treatment was limited, and I felt that if we could assess and individually prescribe this treatment daily in the home, we could help give people with Parkinson's the tools to take control of their symptoms.

"In recent years smartphones have gotten even smarter, which allowed us to harness these capabilities and make Beats Medical happen."

So how does it work? "In a healthy brain a signal goes off that cues normal movement. In a brain with Parkinson's disease, this signal is impaired. It is thought that by providing metronome therapy, we give them back this signal to help control movement," says Ciara.

"Parkinson's presents differently for everyone so we provide all our users with a free trial to try out the product for themselves."

Beats Medical has been proven to work best in stages 1-3 of the disease. "Unfortunately we can't help those in the later stages of the disease at this time, but we endeavour to keep innovating," Ciara says.

One person who feels he's benefited greatly from using the app is John MacPhee, a 50-year-old from Perthshire in Scotland. Now retired from a job in the tourism industry, he was diagnosed with early onset Parkinson's Disease three-and-a-half years ago.

"At the time, I felt somewhere between devastated and confused. I had been having tests and suspected the diagnosis but when the doctor actually says the words 'It's Parkinson's', there was a mind numbing reality that only let in fear and the feeling of not knowing what to do next.

"Eventually, the feeling of fear gave way to determination to do something positive."

John says he was determined not to retreat in to a shell, so when he heard about Beats he was intrigued.

"The company got in touch with me via Twitter; they had seen my tweets about a charity event I had in the works. I was planning a walk from Lands End to John O' Groats, and was going to do it in a straight line."

John was curious, and wanted to find out more. "I didn't know quite how it would work but really wanted to try it out, whatever it did! Beats and myself quickly built up a rapport and they were brilliant in supporting the 'Long Straight Walk' and ended up sponsoring my support vehicle."

John completed his walk over a month-long period last winter, and credits Beats for helping him achieve his goal.

"Using the app has made a great difference to my walking, it smoothes out my gait enormously. At one point, my iPhone was playing up and I couldn't use the app. Not being able to access it highlighted what a difference regular use of the app made to my mobility."

It's been important to John to continue walking, even after he completed his big endeavour.

"Every day I walk with my dogs and choose a section of the ramble when they are off lead to set up my daily treatment. You start the app and walk as steadily as you can for two minutes to measure how you are doing that particular day using various algorithms.

"After that, the app displays your BEAT whether it is 78, 90 or 106, and that's the beat you walk to. Your phone gives out the metronome sound, and the pitch has been researched to have maximum effect.

"You then step to the beat for 10 minutes and that sets you up for the day. I sometimes top up in the afternoon with a second burst of 10 minutes beats."

Unfortunately for John, Parkinson's is a progressive disease, so his symptoms are steadily getting worse. "But by using the Beats Medical app I'm fairly sure the deterioration in my walking has been slowed, and certainly when I use the app my steps are smoother. I sometimes say it is like pouring oil on to my rusty joints."

John is optimistic about his future, and tries not to dwell on his condition. "My family and I have come to terms with it for the moment; I am lucky to have the support I do from my wife. We try to plan for the future but we don't dwell too much on what it may be like, the only thing we can do is enjoy the here and now as much as we can.

"Having Parkinson's is not what I would have chosen - who would? But the reality is that I am still the same person and I make the best out of the time I have when my Parkinson's symptoms are still manageable."

For Ciara, it's all about helping patients stay on an even keel.

"We aim to help people with Parkinson's take control of these symptoms now and keep active and independent. Our users have had great success to date with many using it to help with their symptoms and to improve their overall mobility, and we have some add-ons launching next year including speech therapy and dexterity (fine hand movement) training delivered via the mobile phone."

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