OUTLOOK - It’s not the kind of distinction anyone would choose, but as the youngest person in Canada living with ALS, Tre Archibald is walking boldly into his future with optimism and hope.
The 26-year-old from Strongfield, 50 kilometers from Outlook, is farming full-time in the community where he grew up. At the age of 19 he began experiencing some unusual symptoms. “I first showed weakness in my left thumb and left ankle,” Tre explained. “I was also getting lots of muscle fasciculation where my muscles would just kind of jump and twitch on their own. I was also cramping up really bad in my calves.”
A visit to his family doctor launched a series of tests and referrals in an attempt to determine what might be going on. “ALS is a weird disease,” Tre said. “They diagnose it by basically ruling out everything else.”
Since other conditions can mimic the same symptoms, Tre underwent a multitude of tests. “I was at RUH and a nurse was printing all these labels,” he said. “It just kept printing and printing and she asked, ‘Are these all for one person?’”
When the diagnosis finally came, Tre was not shocked. “I kind of knew it was coming,” he said. “I had been reading some things and I saw that a lot of it lined up so I wasn’t super surprised.”
Amyotrophic lateral sclerosis is a rare neurological disease impacting neurons—the nerve cells in the brain and spinal cord that control voluntary muscle movement. It is progressive, so over time the muscles break down leading to the loss of ability to initiate or control movement.
It comes in two forms; one that affects your upper body (speech, eating, breathing), and the other that affects limbs. Tre has the latter.
Clinical trial begins
After getting his diagnosis, things moved quickly. Dr. Kerri Schellenberg, neurologist with the ALS Clinic in Saskatoon had everything lined up for a clinical trial taking place in Alberta. Tre was on the phone with them less than 15 minutes after confirming the diagnosis. Ten days later he was in Calgary for pre-screening, blood work and more tests.
He began a six-month double-blind study in which 2/3 of people were on a study drug and 1/3 on a placebo. Right from the start there were many safety protocols in place. “The appointments were initially eight hours long,” he explained, “so they could monitor bloodwork and do an ECG every hour to see how it was affecting my body.”
The treatment involves flying to Calgary every four weeks where Tre gets a spinal tap. Fifteen milliliters of spinal fluid is extracted and then 10 milliliters of the study drug is injected. The first six months didn’t show anything promising but then they had an open label extension where everyone could go on the actual study drug and that’s when Tre says he noticed a difference. “The data now shows it takes longer than six months to start showing any affects. At one time I was wearing an ankle brace on my left ankle and I had started to wear a neck collar when I drove, but now neither. I definitely feel like I’ve got some strength back so it looks very promising.”
He is also on Riluzole, an ALS approved treatment since the ‘90’s, and Albrioza which just received approval within the past six months. The first is a pill he takes daily while the second is a bit tougher to swallow…literally. “It’s a powdery drink you mix that tastes absolutely horrible,” he said with a laugh. “I have to do that one twice a day; morning and night.” Also, since he tested positive for a SOD1 gene mutation--the first gene researchers understood to be one of the causes of ALS--he also takes Tofersen, found to effective only on SOD1 ALS.
Arming himself with knowledge
Prior to his diagnosis, Tre’s knowledge of ALS was limited to the Ice Bucket Challenge and the name Lou Gehrig. But through his connection with the Canadian ALS Learning Institute he has armed himself with knowledge. “I’ve learned how to properly study papers and see through the hype of the drug companies to see what the actual paper says,” Tre explained. “I spend a lot of time looking things up and knowing all the different research that’s going on.”
In May he and his mom travelled to the ALS Canada Research Forum in Toronto where they heard from scientists and met specialists in the field including Dr. Timothy Miller, one of the foremost researchers in neurodegenerative diseases. Dr. Miller developed the drug Tre is on. “He started working on it 20 years ago,” Tre said. “He’s one of the only people that has been able to see their drug go from theory to FDA approval in the United States.”
Tre did not let the unique opportunity pass him by. “I got to corner him and had a bunch of questions for him. I also got to play against him in a ping pong tournament. He loved that. He didn’t think that was ever something that would be possible.”
The prognosis for people with ALS is that they will eventually be unable to stand or walk, use their arms or hands, form words, or even breathe on their own. Life expectancy is typically three to five years from the onset of symptoms.
But that is not Tre’s story. He is farming full time, taking daily walks with his dogs, and has his eye on the future. “I definitely get tired more than I used to and I’ll get sore easier, so that’s probably the biggest thing. But I’m working. I can do just about everything I need to. It might take me a little longer or make me a little more tired but I’m doing it.”
One area of unfortunate impact on Tre was being unable to continue in the military reserve with the Saskatchewan Dragoons in Moose Jaw. “Any career in the military I had to say goodbye to, so I was definitely not happy about that,” he said. “I was there for five and a half years and then had to get my medical release once I was diagnosed. It was like another little family so it was hard being disconnected from that.”
Support of family
The Archibald family has all been tested. “I was very young, and genetic ALS is more common showing up in younger people, but mine is kind of odd,” Tre said. “Most people with a genetic form of ALS have family history. But I don’t. Nobody tested positive.”
He said his parents and two brothers took his diagnosis very hard at first but now are coming to terms with it. “They are doing better now because they can see that I’m not rapidly declining. They live close to me and are super supportive.”
Tre is grateful for the research currently going on and for the care he is getting through the ALS Clinic, a multidisciplinary center that includes doctors, respirologists, physiotherapists and more. “It’s awesome,” he said. “We have one of the best ALS clinics in the whole country. Lots of provinces don’t have one at all, but Saskatchewan does and the whole team is very good.”
He finds it easy to talk about the disease and encourages people to ask questions. He participated in an ALS Walk in Elbow on June 17 and said, “It’s important for people to learn about what ALS is and see people living with it.”
The successful day topped more than $20,000 for ALS Saskatchewan, an organization focused on patient support, including helping with equipment and mobility costs.
Being the youngest person in the country living with ALS is something Tre approaches with great composure and a tremendous amount of optimism. “There’s lots being done and things look very hopeful,” he remarked. “I’d say it definitely used to be a death sentence but there’s a lot of hope out there now with all the research going on. It could be that very soon it will be seen as, if not curable, then treatable. It’s very, very promising.”
Getting a chance to meet Tre you quickly see that his attitude is playing an equally important role as any treatment he is taking as he lives with ALS. “I have this,” he said, “but I won’t let it limit me. I want to live my life as much as I can while I can.”
