Now struggling with speech problems, radio host Mario Hudon is taking his last chance to talk about amyotrophic lateral sclerosis (ALS) in person, before eventually asking for medical assistance in dying.
• Read also: Lou Gehrig’s disease: Mario Hudon wants to make things happen
Shamelessly, he laughs, he cries and he fears that he will soon be a prisoner of his body. But eye to eye, he continues to want to enlighten the population on Lou Gehrig’s disease, in memory of the baseball player, who died of ALS.
Mario Hudon, a communicator, is losing his ability to speak.
“From next year, it will be pretty much over for my vocal releases. In my head, I can still describe a match, but it doesn’t come out anymore. It was my life to speak. Börje Salming also no longer spoke, ”explains this great sports fan about the former Swedish hockey player, who died last month of ALS.
Always combative, Mario Hudon, 62, denounces the fact that people are dying when there may be a drug that could prolong their life. In his case, the incurable disease progressed faster than he expected. Time is against him.
A request rejected
Health Canada approved Albrioza in June but the National Institute of Excellence in Health and Social Services (INESSS) refused this drug and the request of patients who claim it as an exceptional drug is rejected, deplores-t- he.
The pharmaceutical company Amylyx pays for him, however. For the others, Mario Hudon crossed his fingers following his meeting with Minister Christian Dubé, but the answer was not conclusive.
“It’s the first hope in 120 years of this disease and we don’t have access to it because bureaucracy prevents us from doing so. It is too long. Me, I am lucky to have it and I did not think I would be alive at Christmas.
The idea of dying does not frighten him but the fact of being completely dependent on others does not thrill him. His wife now has to help him eat. “He always makes me laugh. He has not changed even if he is sick, ”launches Nancy Bérubé. Mario even drinks his wine through a straw. For other care, the importance of family caregivers also hits him hard.
“I am pampered but it scares me. I’m afraid I won’t be able to take my grandchildren anymore. I try to keep my spirits up because I don’t want people around to perceive me as an unpleasant old man always cursed! I don’t have time to get angry,” he adds between tears and a smile.
A form of respect
Mario Hudon sees medical assistance in dying as a form of respect for people who have reached their limit. So far he is not in pain.
“I just have my eyes moving. I don’t want her dusting me every once in a while. We settled it with the family. Organ donation too. Even though my brain isn’t big, it’s going to go looking like the spinal cord. Assistance in dying, they’re going to take me to the hospital so they can take whatever they want. I want to be able to say enough is enough.”
Despite the illness, the holiday season promises to be pleasant surrounded by his family.
“Christmas makes me happy because this year it’s a bonus,” ends the host who hopes to see the Remparts at the Memorial Cup and the Canadiens, whom he still likes to hate, eliminated from the playoff race.
ALS is the most common disease affecting the motor neuron. Gradually, its deterioration leads to the inability of the brain to initiate and control any voluntary muscle movement.. In Canada, there are 2,500 to 3,000 people affected and two new cases per 100,000 inhabitants are discovered each year.