A hockey video specialist and a policeman at the Sûreté du Québec, Martin Jarry is also the father of two children. In April 2016, his life changed when he was diagnosed with Inclusion Body Myositis, a degenerative disease of the muscles that very rarely affects people under the age of 50.
Neuromuscular conditions affect more than 50 000 Canadians and have an impact on their mobility with many having to rely on assistive devices or a personal care assistant.
In 2017, Statistics Canada reported that 13.7% of the impaired Canadians had a disability that impacted their daily life activities. As mobility becomes challenging, it affects an individual’s integration with the community, hobbies, work, and sport practice.
Martin Jarry shares his story about his journey living with myositis and the impact on his mobility.
“Mobility. A benefit we don’t value until we know it’s threatened. Especially when one has an active life-style as I had. Officer at the Sûreté du Québec, coach for a hockey team, father of two; my life was full of movement.
In 2016, I was 46 and I discovered that I was going to have to live with Inclusion Body Myositis, a rare degenerative neuromuscular disease with no cure. I felt like the sky had fallen over me. After the shock, I decided I had to look for information about this disease, to know it and somehow, try to manage it.
First symptoms of Inclusion Body Myositis are weakness in the limbs, simple movements you can’t do anymore, loss of mobility and autonomy in everyday activities. You can’t get back on your feet after you fall, having a shower gets complicated. After you’ve been diagnosed, you know it’s not going to get better; but you can choose to motivate yourself and use the time you have left as much as you can. That’s when I started my race against time.
I began looking for solutions – unfortunately, research on muscular dystrophy is essentially made in the US, not in Canada – and then I focused on looking for communities of people living with my condition, to give me strength. I decided to slow down the progression of the disease by taking care of my muscles with the help of a kinesiologist.
My quest reached its peak when I discovered an innovative walking assistance technology that helps people regain their mobility called KEEOGO for ‘Keep on Going’. It is a powered device and has advanced software to read and support my movements so I can walk longer, go up and down stairs without using the railing, and pick up something off the floor without falling. It was a chance to live with independence while having an incurable condition that was slowly weakening me.
I learned that it is designed and developed by a Canadian company, B-Temia Inc. in Quebec City. I reached out to them and had the chance to try the device…. I rediscovered what it was like to have my mobility back, and my autonomy too. I felt mentally and physically well again.
It allowed me to get the upper hand on my daily activities such as walking, running, climbing stairs, or getting back on my feet by myself. Last year, I ran a 10km race in Ottawa, to raise funds for Myositis Canada! And just as importantly, it lightened the burden of my family who constantly had to watch me.”