In this episode of When Life Gives You Parkinson’s, I explore how the collision of health, technology and innovation in the private sector is revolutionizing approaches to measuring brain activity and treating brain-related issues, from Parkinson’s to major brain injuries and concussions.
A major part of having Parkinson’s disease is finding out what matches you in terms of diet, exercise, pharmaceuticals, therapies and relationships so you can manage your symptoms and maintain the best quality of life for as long as possible. But are you aware of everything that’s out there that you could be using?
I wasn’t.
From handmade steel stationary bikes designed especially for people with Parkinson’s to a tongue stimulator to improve your balance and walking gait, I feel as if I’ve found a secret Batcave of cool technology that I never knew existed. But all of it comes with a price tag and insurance does not cover it.
DISCLAIMER: I am not a spokesperson for these companies or products, they are not clients and have not paid for this placement. These products and services are part of my journey in exploring all the ways to live my best life with Parkinson’s.
First, the stationary bike — the Theracycle.
“It’s really an amazing piece of equipment,” said Joe Possenti, who bought a Theracycle a year ago and uses it most days. He has had Parkinson’s for 12 years and told me it’s a gamechanger for him.
“I used to ride the stationary bike in the gym, my feet would curl up and then my legs would get real heavy. I couldn’t get a good speed going.”
However, with a 200-pound, motorized cycle designed to improve the lives of people with degenerative brain diseases, Joe says it’s not an issue.
“With the motor, even if you’re struggling with the heavy legs, it’s still assisted pedaling and then the handlebars move like an elliptical machine, the rowing machine,” he said.
The most popular Theracycle costs $4,800 ($6,700 CAD) and is delivered free in the continental United States and comes with a money-back guarantee.
Rich Bloomenthal is head of sales.
“Basically we’re making a pretty bold promise, because we’re saying to someone who’s got Parkinson’s disease that we really feel confident, we’re almost promising, that a month from now you’re gonna be better off than the day you start with the bike and if you’re not (going to) return it,” Bloomenthal said.
Meanwhile, there is quite an operation underway in Surrey B.C. Recently, I toured The Health and Technology District, which is located across the street from Surrey Memorial Hospital.
It’s the brainchild of Dr. Ryan D’Arcy, a neuroscientist and entrepreneur.
“This district was a vision a little over five years ago that you could use technology innovation to make direct impacts on health care for people today,” Dr. D’Arcy said.
“And it’s taken a group of very motivated people that work really hard and well together to bring it to what it is today.”
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Dr. D’Arcy says there are 75 tech companies and 96 medical specialists integrated, collaborating and bumping into each other in one building alone.
“It’s interesting because in physics they talk about how collisions create energy in an in an innovation space and an ecosystem like this,” D’Arcy said.
“Collisions create discoveries. And so what happens is you get your busy clinician with your busy scientist colliding with a company and actually coming up with an innovation that help people.”
As I toured the facility, I realized I was not aware how many available treatments there are for the symptomatic issues of Parkinson’s. For instance, I saw two really cool therapies for treating gait issues so people can learn to walk normally again.
The Lokomat, at NeuroMotion Physical Therapy, reminds me of Iron Man. Patients slip on these huge robotic legs strapped to a treadmill. Through forced and repeated motion, new neuropathways are created which retrains your brain’s communication to your legs and feet.
The second treatment is called PoNS, which is short for Portable Neuro-modulation Stimulator. This lightweight portable device slips around your neck rather snugly and hanging off one end is a rectangle pad which goes into your mouth. It stimulates your tongue.
Sonia Brodie is a neuroscientist and the vice-president of services at the Surrey Neuroplasticity Clinic.
“There’s a whole bunch of different ways that you can stimulate the brain, but this is the easiest way to get to the back of your brain where the cerebellum is in your balance centers,” Brodie said.
“So when you’re teaching someone how to walk again, how to hold themselves and have that body awareness, it’s a complicated and complex movement that require stimulation back here.”
Brodie told me we all have 12 cranial nerves that come off the back of our brain and two of them connect to the front, one-third of your tongue.
One of the ongoing issues with treating Parkinson’s is that the measurement tools for the disease progression and executive function are too subjective. Dr. D’Arcy created The NeuroCatch™ to take the guesswork out of measuring what is going on inside your head.
“We felt it was high time that we had a vital sign for brain function, just like how you manage your heart health with blood pressure,” Dr. D’Arcy said. “So, we created NeuroCatch™to be a deployable and completely rapid and easy to use measurement of how your brain is doing today.”
It’s a six-minute test that measures auditory sensation, basic attention and cognitive processing. Not only is it helpful with measuring brain function in people with Parkinson’s, but D’Arcy is working with hockey clubs to conduct the six-minute test during games to determine if a player has a concussion or not.
Another machine affectionately referred to as the “barf box” measures balance.
The NeuroCom® SMART Balance Master® measures how well your eyes, inner ear and muscles and joints are working together to maintain balance. The client stands in the centre of a metal plate surrounded by three colourful walls. Through a series of short tests the plate moves, the walls tilt, and eyes are sometimes open and sometimes closed.
During my tour, I tested both my brain function and my balance. My scores on both systems were less than impressive, which is no surprise. But what’s surprising is that these treatments and tools exist and I was oblivious to them until now. It makes me wonder what else is out there and available to the Parkinson’s community.
The different tests and treatments cost anywhere from $150 for one test on the NeuroCom® SMART Balance Master® or reportedly between $15,000 and $19,000 for 14 weeks of treatments with the PoNS device.
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Thank you to:
The Health & Technology District
Dr. Ryan D’Arcy, Neuroscientist and Co-Founder of the Health and Technology District
Anne Shaw, Clinic Manager at Neuromotion Physiotherapy and Rehabilitation
Sonia Brodie, Neuroscientist and VP of Services at the Surrey Neuroplasticity Clinic
Matieu Gagnon, Kinesiologist at the Surrey Neuroplasticity Clinic
Rich Bloomenthal, Head of Sales at Theracyle
Joe and Sarah Possenti
Al Coen, Coen Communications; Cameraman, Video and Audio producer, Editor, big supporter of the pod, and all around great guy.
and to my wife and partner in Parkinson’s Rebecca Gifford.
Our presenting partner is Parkinson Canada.
Its toll-free hotline is 1-800-565-3000.
Follow Parkinson Canada on Twitter @ParkinsonCanada.
Find the new Parkinson Clinical Guideline at www.parkinsonclinicalguideline.ca.
Our content and promotional partners
Parkinson’s IQ + You — A free, series of Parkinson’s events from the Michael J. Fox Foundation
Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
WPC2022 — Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.
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Editor’s note: This story has been updated to correct the cost of treatment with the PoNS device.
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