Living with ALS at 27: Young Canadian with ALS opens up about life after diagnosis that 'throws your future up in the air'
From having to quit the army, to fear of burdening his family, Tre Archibald's life changed after diagnosis.
Tre Archibald, a 27-year-old from Strongfield, Sask., is one of the youngest person in Canada diagnosed with amyotrophic lateral sclerosis (ALS). He has worn many hats in his life, from working as an electrician and cook, to serving in the military reserves. Years into his ALS journey, he's now a full-time farmer, but it hasn't been an easy road.
He first noticed something was wrong during a boating trip when he was 19. "I remember getting these leg cramps in my calf muscle, and they just locked up," he recalled. Although he didn't think much of it at the time and dismissed it as a typical "Charley horse," it was the beginning of a journey that would change his life forever.
"I'd be sitting or lying in bed and notice my muscles just kind of jumping on their own," he said of instances in the following years. This was when he knew the symptoms were becoming serious.
Archibald went to his family doctor who prescribed medications like gabapentin to calm down the nerves, but nothing seemed to help. He then visited a neurologist in Saskatoon for electromyography (EMG) and nerve testing. The specialist used a needle to listen to the muscles, detecting unusual bubbling and crackling noises indicative of muscle damage. Archibald was first diagnosed with benign cramping fasciculation syndrome and put on carbamazepine, but this, too, didn't help.
In July 2020, after a long wait due to COVID-19 delays, Archibald was officially diagnosed with ALS. He was just 23.. "I wasn't surprised," he admitted. "Knowing I'd have to quit the army was the worst part to be honest," he said, adding he feared for his family too.
You might kind of have to be a burden on your family, and your parents might have to lose one of their children.
What is ALS? Diagnosis, treatment & more
ALS, also known as Lou Gehrig's disease, is a terminal neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to progressive muscle weakness and paralysis. The brain eventually loses communication with muscles, which affects a person's movement, speech and eventually breathing.
The average life expectancy for someone diagnosed with ALS is two to five years.
Although the disease is more common in older adults, Archibald is one of the youngest person in Canada to be diagnosed with ALS, and thanks to an experimental medication, his disease hasn't "progressed much," he said.
Shortly after his diagnosis, Archibald was enrolled in a clinical trial for an experimental drug called Tofersen, which targets the SOD1 gene mutation responsible for his type of ALS. "Ten minutes after I got the call that I was diagnosed, I received a call from the research team in Calgary," he said. "I flew out there for a pre-screening visit and barely met the criteria."
My family did not take it well. My brothers and dad don't like talking about it.
Tofersen is an antisense oligonucleotide targeting mutated SOD1 DNA, which is responsible for his specific subtype of ALS. The drug stops the production of toxic proteins that cause muscle weakness. Archibald described the process: "It's administered through an intrathecal injection, a needle into your spine into the cerebral spinal fluid."
The drug has significantly improved his quality of life. "I no longer wear an ankle brace or neck brace, and my progression has stabilized," he said.
But, the diagnosis meant Archibald had to leave the military, where he was on the path to becoming a Master Corporal. "It felt like losing a family," he said.
The news was devastating for his family as well. "My family did not take it well. My brothers and dad don't like talking about it, my mom talks about it a ton — but she worries about everything."
Archibald and his family made immediate adjustments. "We renovated my entire house... to make it wheelchair-friendly," he said. "The whole community came over and helped; even that's a blessing too."
Living with ALS
Despite his diagnosis, Archibald continues to farm full-time and cooks for his family whenever possible. His two miniature dachshunds, Milo and Willie, bring him joy.
His day-to-day life varies. "Some days it hardly affects me at all, and other days it kicks my ass a little bit," he explained. He experiences muscle weakness, fatigue, and soreness, particularly after physical exertion.
Some days it hardly affects me at all, and other days it kicks my ass a little bit.
The farmer has made some adjustments to manage his physical limitations. "Sometimes I work shorter days or take breaks when my body can't handle it," he said, adding his legs get sore. Luckily, his colleagues have been "understanding and accommodating," Archibald commended.
He attributes much of his ability to cope with ALS to the strong support network around him. His family, friends and community have been incredibly supportive, he shared. "People pitched in to help renovate my home — I will be forever grateful."
He also praised the support from ALS Canada: "They're always there if you need someone to talk to." The organization has provided him with opportunities to learn about ALS and participate in research forums.
ALS research is 'promising'
Archibald remains hopeful about the future. "I'd love to see a cure before I die," he said simply. "It sucks. Being younger, it kind of throws your whole [future], having a family and all that, up in the air."
But, he said the amount of research being done and the amount of money pharmaceutical companies are pouring into ALS is "super promising." He also credits the Ice Bucket Challenge for increasing public awareness of ALS.
A team of researchers at Western University have recently made a breakthrough in potentially curing ALS. Led by Dr. Michael Strong, the scientists are optimistic their treatment could reach clinical trials in just five years. This research has been bolstered by a $10 million donation from the Temerty Foundation, The Star reported. Currently, no cure exists for ALS.
"It's challenging to sit in a room with a patient and their family, explain to them this disease, and then say, 'well, I'm not doing anything,'" Dr. Strong told The Star. "You've got to say we're doing our best. We're working with colleagues worldwide to try and figure this out, because nobody should have to go through this."
Strong's team discovered a fragment of a protein, RGNEF, that mitigates the toxic effects of TDP-43, a malfunctioning protein found in ALS patients. Testing in fruit flies and mice showed promising results, significantly delaying motor dysfunction in the animals. Strong's lab is now working with collaborators in B.C. and Italy to develop a human-compatible drug, aiming for clinical trials within three to five years.
Dr. David Taylor of the ALS Society of Canada expressed "cautious optimism" to The Star, emphasizing the importance of continued research.
Meanwhile, Archibald encourages others facing an ALS diagnosis to connect with their local ALS society and participate in clinical trials. "Don't be afraid to reach out to others with ALS," he advised, adding people should "live life to its fullest" while they still can.
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