When Terry Loustel was diagnosed with ALS in 2022, it was the answer to years of uncertainty around his health. “For three years I was frustrated as to why they couldn’t tell me what was wrong. And when they finally did, it was almost a relief because I now know what I was going to have to do moving forward with my life. It was going to change drastically, but at least I knew,” Loustel said. As June marks ALS Awareness Month across Canada, Loustel is one of many advocates sharing how the debilitating disease can impact those diagnosed, and their loved ones. “I think it’s very important that we get the message out how devastating this disease is to people and the impact it has on their family and people around them,” Loustel said. Saskatoon is home to the ALS / Motor Neuron Disease Clinic, which delivers care to those impacted, and conducts research about the disease. Kerri Schellenberg is the clinic’s medical director and an associate professor of neurology at the University of Saskatchewan. “It is sometimes very difficult to diagnose early on because it looks so different ... so the ALS Awareness Month really allows the community [and] the health care providers to be able to gain information and awareness so that more timely access to health care can occur,” Schellenberg said. “Things change every year because there is so much interest nationally, internationally [and] globally for ALS care and research. Some of the new things that have come recently are more treatment trials and one approved medication for the treatment of genetic forms of ALS.” The medical director added there’s been an “explosion” of interest in ALS in recent years. “ALS is such a devastating disease. It has relentless progression of weakness of arms and legs, speech and swallowing problems [along with] breathing challenges,” she said. “It really is very, very difficult for patients, for their families to live through.” Loustel shared that at the time of his diagnosis, he was able to walk with a walker and had the full use of his arms. His illness has since progressed to the point where he uses a wheelchair, and he estimates that the disease has claimed 90 per cent of his mobility. But one thing Loustel is still able to do is speak. And since his diagnosis, Loustel has been an advocate for ALS awareness and seeks to help others who have been impacted. “It made me feel that I was able to contribute something new again, because in the state that I’m in, I don’t have the ability to do anything to help people anymore,” he said. “So all I’m left with now is my voice and my mind,” Loustel said. According to ALS Canada, most people who are diagnosed with the illness die after two-to-five years. Loustel said that the difficult outlook can often take a toll on one’s mental health. “I’m having some survivor’s remorse because most of the people that I met in 2022 and coming forward have all passed by now. The average lifespan after diagnosis is two-to-five years. Well, I’m seven-years in now from when I first started having difficulties ... watching all these people dying around me and sometimes feeling guilty that I’m still left behind,” Loustel said. While there is currently no cure for ALS, Schellenberg emphasized there are still treatment options available for those who have received a diagnosis. “We know that people who go to a specialized ALS clinic have a longer lifespan, fewer hospitalizations, better access to medications and intervention, and most importantly – an improved quality of life. We are always doing research out of our clinic, and some are local projects with local expertise. Some are national and some are international projects,” Schellenberg said. She added that while the initial diagnosis can be scary, there are still options available for those impacted by ALS. Schellenberg added that while receiving an ALS diagnosis can be scary, but it doesn’t necessarily signal the end. “Sometimes people are told, ‘Well, ALS is a terminal disease. Get your affairs in order, there’s nothing we can do.’ And that is simply not true. There is so much that we can do, not only to improve people’s survival, but also to improve people’s quality of life ... Not everyone wants to live longer, but everybody wants to live better with ALS,” Schellenberg said. Loustel expressed that while having an ALS clinic in Saskatchewan makes a big difference, he hopes the facility will one day be able to attract the attention of more clinical trials. “There are some drug trials happening across Canada, but they only happened in the major centers ... Calgary, Vancouver, Montreal. And to participate, you would have to travel there,” Loustel said. Loustel explained that travelling for a clinical trial is not possible for most people with ALS, which means Saskatchewan ALS patients would need trials to come to them in order to participate. “I would like to see our clinic in Saskatchewan have a nurse permanently assigned to the department as well as a psychologist, so that we can try to convince drug companies to come to Saskatchewan to do trials,” he said. Loustel added that he plans to continue spreading awareness and supporting others impacted by the disease as long as he is able. “Look back on your life and think about the good things that happened. Don’t focus on what you’re losing out on now, up to that point in your life, there had to be lots of good things that happened. So remember those and use those memories to help you move forward,” Loustel said.
