Diagnosed with amyotrophic lateral sclerosis (SLA) three years ago, Yannick Richard refuses to be put down. Thanks to an experimental treatment, he saw his illness stabilize … Now aged 50, this father is preparing a crossing of Canada in an adapted vehicle in order to raise public awareness, to raise funds for research and to give a voice to people that ALS reduces too quickly to silence.
Yannick, how did SLA enter your life?
It started very slowly. One evening, walking with my spouse, I twisted my ankle. We thought of a simple sprain, but the weeks passed, and I was losing more and more mobility instead of recovering it. After almost a year of physiotherapy without improvement, my spouse – who is osteopath – began to suspect something more serious. It was then that I consulted a family doctor, and the diagnostic process started. It is a long elimination process. We pass a battery of tests to rule out all the other possible causes. When everything is eliminated, only SLA remains. My spouse immediately understood … (visibly moved, he adds) when the doctor asked us if we had an idea, she said: “Not the SLA” … Then she broke into sobs. It was an immense shock.
How did you react to this verdict?
We first think of those we love. The hardest part is to have it to announce it to your children. They were told that their father might be going to die in the next six months. It was brutal. We tried to soften the moment by making a chocolate fondue after the announcement, but the weight of this reality does not disappear.
You are part of a very small percentage of people with ALS who have had access to experimental treatment.
About four months after the diagnosis, I learned that my SLA form was hereditary, linked to the SOD1 gene. It is very rare; It concerns less than 2% of cases. And for this type, an experimental medication had just been tested. I was accepted. It is an injection for 28 days. It’s been a year and a half that I receive this medication, and my illness is almost stable, 95%. It’s huge. Normally, after three years, I should have been completely paralyzed or even deceased …
This medication has therefore changed your life trajectory …
Completely, I no longer lose autonomy. Before, each month brought a new loss. Now I’m on a set. When you live with SLA, just don’t get worse, it’s a victory. And then, my lungs still work 100%. As long as I can wash, eat and move a little by myself, I keep my dignity and my autonomy.
How did your diagnosis of SLA transform your look at life?
Before the disease, I was an occupied entrepreneur, still in stress, to run 60 hours a week. When the diagnosis fell, it was necessary to question everything. This is where I took a philosophical turn. I said to myself: “If I still want to enjoy life, I have to slow down, that I savor every day.” It’s a snapshot, but when we say that every day becomes a gift, well that’s exactly that.
And how do your loved ones experience this transformation?
It’s harder for them, especially my spouse. It is she who does everything at home, with the children, in addition to accompanying me. Me, I received a kind of gift – an unexpected stabilization -, but it saw the intensity on a daily basis. So I try to keep the atmosphere at home. I teach my children that we can smile even when it is difficult. This is my new mission.
Where did you come from the idea of crossing Canada by suitable vehicle?
I came across the story of a guy who crossed the country by bicycle for his mother who died of SLA. I said to myself, “Why not me?”. I can’t pedal, but I can drive. I wanted to transform my personal challenge into an awareness mission. If my story can help make the disease better known, then I succeeded. In addition, I want to raise funds for research and share the stories of other people affected. Often, we do not hear their voice, because they die too quickly or their loved ones are overwhelmed. I am lucky to be still in a position to speak, to move, so I want to carry their message.
How will the journey take place?
It will be done on about 35 days. We take a family flight to join the Pacific. Subsequently, it is direction atlantic Ocean, passing by significant stops, with interviews on the way. It will also be an opportunity to meet other people affected by the disease, as well as doctors and researchers. I will be surrounded by mechanical friends who will ensure the proper functioning of the suitable vehicle.
Do you fear the physical challenge it represents?
Of course, but the desire to live something big goes beyond fear. I did not choose to have SLA, but I choose what I do. And as long as I can move, speak, act, I will. Each kilometer traveled will be proof that life deserves to be lived, even with SLA.
What do you hope that people retain from your journey?
That despite everything, there is hope. Research works. That love, solidarity and determination can raise mountains. And above all, that those who live with SLA or who accompany a loved one with the disease are not alone.
Follow the large SLA crossing: 4,500 km of hope across Canada with Yannick Richard, from mid-September, on social networks. On October 25, an event will take place at the old station in the city of Prévost, in tribute to the successful journey. To encourage Mr. Richard’s campaign: www.jedonneenligne.org/slaquebec/don/
