Latest news with #LorneZinman
Yahoo
14-05-2025
- Health
- Yahoo
I was living with ALS symptoms for years before I was diagnosed in my 40s. The signs you shouldn't ignore — and the reality of living with a terminal illness
May is ALS Awareness Month — an important cause to Stephanie Thompson. The Ottawa-based mom was in her early 40s when she began noticing the first signs of amyotrophic lateral sclerosis (ALS). The now 44-year-old was experiencing 'weird muscle cramps' that would occur seemingly out of nowhere. "It's normal to get cramps in your feet, and I had those too, so I didn't think much of it," she said in an interview with Yahoo Canada. "But then I'd be brushing my hair and my hand would seize up, clamping around the brush so tightly I had to pry my fingers loose.' The cramping worsened over time to the point that she recalled not being able to lift her head from her pillow. Still, it would be two years before Thompson felt they were serious enough to see a doctor. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. 'My three boys — 15, 13, and 6 — took up a lot of time, and there was always something going on,' she explained. 'I kept putting [my health] on the back burner. But then I had this feeling — it can't be normal because it lasted too long.' In September 2023, two years after she first began noticing symptoms, the cramps had progressed to the point where Thompson needed to brace herself to stand up. Her doctor referred her to a specialist for an Electromyography (EMG), a procedure that measures muscle and nerve function. "My first EMG and physical exam showed weakness, but I didn't get the results then,' Thompson said. Thompson was referred to a neurologist in December 2023 for more tests and a second EMG; a month later, she received an MRI. February brought more tests and another EMG. Five months after she visited her doctor for her symptoms she received the devastating diagnosis: she had ALS. 'I went to a very dark place where I couldn't function…,' she said. 'You think about your life, even just the day before the diagnosis, and you start grieving the future you thought you'd have. It's like, that's not going to happen now.' Despite the heartbreak of learning she has ALS, Thompson acknowledged that she received her diagnosis relatively quickly. Dr. Lorne Zinman, head of Sunnybrook Hospital's ALS Clinic in Toronto agreed. Most family doctors will encounter only one or two ALS cases in their entire careerDr. Lorne Zinman 'In Canada, it typically takes patients one and a half to two years from their first symptom to receive a diagnosis,' he explained in a separate interview with Yahoo Canada. One reason for the delayed diagnosis is that ALS has no 'diagnostic biomarkers' and a diagnosis is made 'ruling out every other possibility. Adding to the challenge is the disease's rarity. ALS affects only two to three people per 100,000 annually, and there's a lack of awareness among general practitioners. View this post on Instagram A post shared by Stephanie Thompson (@alsgetsonmynerves) 'Most family doctors will encounter only one or two ALS cases in their entire career,' says Zinman. 'Stroke, by comparison, is far more common." ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder. It destroys the nerve cells that control muscles, severely impairing speech, swallowing, movement, and eventually breathing. Unfortunately, today, there is no cure. Approximately 3,000 people in Canada are diagnosed with ALS each year; one thousand Canadians die annually from the disease. The life expectancy for people with ALS varies, however Health Canada reports that 80 per cent of people die two to five years after their diagnosis. 'For reasons we don't fully understand, yet, the nerves controlling muscles begin to degenerate,' said Zinman. 'In most patients, the disease starts in one region of the body. If it begins with speech or swallowing, it's called bulbar-onset ALS; if it starts in the arms or legs, it's known as spinal-onset ALS.' Living with ALS comes with a huge financial burden, something that Thompson and her fiancé Devin Duquette, have learned first-hand. They purchased a home in July 2023, seven months before Thompson received her diagnosis. 'Unfortunately, we did not get insurance on the mortgage. That was a financial hit for us because we have to maintain that mortgage throughout this process,' explained Thompson. In addition, the new home required upgrades such as the chair lift to help keep her as mobile as possible. Since the pandemic, Thompson had been working remotely for a corporate bank. Although the job wasn't physically demanding, she ultimately had to stop working. 'I came to the point where the physical requirement to even be at a desk for that long was something that I couldn't do," she said. "Because of the continuous typing, I'll cramp up my hands. And then there was the stress of work and [after the diagnosis] the stress of [learning that] I'm dying.' Despite the public health care system and provincial home care programs that offer some support, coverage is inconsistent across Canada. Families must grapple with the expensive treatments and out-of-pocket costs of medicines and specialized equipment that could provide comfort and care. The ALS Society of Canada says the average financial burden a household incurs with a member living with ALS between $150,000 and $250,000 over the course of the disease. It's considered the "bankruptcy disease" because the yearly cost of ALS care is much higher than that for people living with HIV/AIDS, stroke survivors in their first year, or those with Alzheimer's. With a reduced income, keeping up with everything is challengingStephanie Thompson Although Thompson received help from the ALS Society of Canada, she and Duquette turned to GoFundMe to help raise money for bedroom equipment 'With a reduced income, keeping up with everything is challenging. The ALS Society of Canada provides some devices and equipment, but you don't have a say in what you receive. For example, I had to pay out of pocket for specific bathroom equipment,' she said. View this post on Instagram A post shared by Stephanie Thompson (@alsgetsonmynerves) As per the ALS Society of Canada, the direct costs associated with ALS (including medical expenses, mobility aids, home modifications, and specialized services) on average add up to $32,337 per year, with families paying about 61 per cent of that — approximately $19,574 — out of pocket. Indirect costs, which are a result of loss of job or unpaid caregiving responsibility are an approximately an additional $56,821 annually. Private insurance has been crucial in covering ALS-related expenses. 'Critical illness insurance helped with some costs, and the Assistive Devices Program will partially cover a specialized electric chair— which costs as much as a car— but I'll have to cover the rest,' she said. Thompson has also turned to social media for support. In addition to her GoFundMe page, she has an Amazon wish list that includes items like a hydration system for people with limited mobility and a hand splint to help straighten her fingers. 'I'm grateful to social media for connecting me with the community. If someone wants to help but can't donate directly, an Amazon wish list with a $30 item could be a way. I'm happy with whatever works for them,' said Thompson. Social media is not only a way for Thompson to connect with the community but also raise awareness for ALS. She's documenting her ALS journey on Instagram through her handle ALS Gets On My Nerves. The guilt of this is something that I'm still working through. I'm proud how of Devin and my kids have adapted into our new Thompson 'This happened [to me] for a reason and I'm going to make the most of it to spread awareness because there's never enough awareness," she said. Amid the chaos, Thompson and Duquette got engaged on Dec 31, 2021. 'The future we thought we would have isn't there. To pivot and to become one of my caregivers has been inspiring to me. He has to carry the household plus take care of me,' she says. 'His workload has increased substantially and he does it out of love. It's not the future that I thought we would be having. But I can't control it. The guilt of this is something that I'm still working through. I'm proud how of Devin and my kids have adapted into our new normal. 'We had a few detours and side quests along the way but are planning on getting married this year. Creating memories and finding our own joy and happiness throughout this journey is our primary objective.'
Toronto Star
12-05-2025
- Health
- Toronto Star
Canadian researchers reach ‘major milestone' in search for ALS treatment
TORONTO - Standing in an MRI control room packed with fellow ALS researchers, Dr. Lorne Zinman excitedly points to the brain scan on his phone. There's a white spot on the image, right where Bill Traynor's motor cortex is. The 70-year-old patient is lying on the MRI bed with his head inside a dome that sends focused ultrasound waves to his head in the experimental trial.
Toronto Sun
09-05-2025
- Health
- Toronto Sun
Canadian researchers reach 'major milestone' in search for ALS treatment
Published May 09, 2025 • 4 minute read Sunnybrook Hospital is shown in Toronto on January 26, 2020. Photo by Doug Ives / THE CANADIAN PRESS Standing in an MRI control room packed with fellow ALS researchers, Dr. Lorne Zinman excitedly points to the brain scan on his phone. This advertisement has not loaded yet, but your article continues below. THIS CONTENT IS RESERVED FOR SUBSCRIBERS ONLY Subscribe now to read the latest news in your city and across Canada. Unlimited online access to articles from across Canada with one account. Get exclusive access to the Toronto Sun ePaper, an electronic replica of the print edition that you can share, download and comment on. Enjoy insights and behind-the-scenes analysis from our award-winning journalists. Support local journalists and the next generation of journalists. Daily puzzles including the New York Times Crossword. SUBSCRIBE TO UNLOCK MORE ARTICLES Subscribe now to read the latest news in your city and across Canada. Unlimited online access to articles from across Canada with one account. Get exclusive access to the Toronto Sun ePaper, an electronic replica of the print edition that you can share, download and comment on. Enjoy insights and behind-the-scenes analysis from our award-winning journalists. Support local journalists and the next generation of journalists. Daily puzzles including the New York Times Crossword. REGISTER / SIGN IN TO UNLOCK MORE ARTICLES Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account. Share your thoughts and join the conversation in the comments. Enjoy additional articles per month. Get email updates from your favourite authors. THIS ARTICLE IS FREE TO READ REGISTER TO UNLOCK. Create an account or sign in to continue with your reading experience. Access articles from across Canada with one account Share your thoughts and join the conversation in the comments Enjoy additional articles per month Get email updates from your favourite authors Don't have an account? Create Account There's a white spot on the image, right where Bill Traynor's motor cortex is. The 70-year-old patient is lying on the MRI bed with his head inside a dome that sends focused ultrasound waves to his head in the experimental trial. The white spot signals that the immunoglobulin Traynor received intravenously has crossed the blood-brain barrier into the precise area the researchers wanted it to go. In an interview just before the procedure, Zinman talked about how significant this result would be in the search for treatment of the devastating neurological disorder. 'This is a major milestone,' the neurologist and director of the Sunnybrook Health Sciences Centre's ALS clinic said Wednesday. 'Now that we have the capability of opening up the blood-brain barrier to exactly target where ALS starts, I'm really excited about the future.' Your noon-hour look at what's happening in Toronto and beyond. By signing up you consent to receive the above newsletter from Postmedia Network Inc. Please try again This advertisement has not loaded yet, but your article continues below. Traynor is the first of six patients in a Phase 1 clinical trial to determine the safety of administering drugs through non-invasive ultrasound waves to ALS patients. He's the world's first ALS patient to receive a drug this way, said Zinman, who is co-lead investigator of the trial. Sunnybrook researchers have previously studied the experimental procedure, called focused ultrasound, for patients with Alzheimer's disease, and those with essential tremor, a neurological disorder that causes uncontrollable shaking. 'The blood-brain barrier is there to protect us, so it keeps viruses, bacteria (and) toxins outside the brain,' said Dr. Agessandro Abrahao, co-lead investigator of the clinical trial and Traynor's neurologist at the Sunnybrook ALS clinic. The problem is that it also blocks access to the brain for drugs that could potentially treat ALS. This advertisement has not loaded yet, but your article continues below. Temporarily opening the barrier to let those drugs through is a solution, Abrahao said, noting that it's critical that the barrier closes after the therapy is delivered. Traynor's day began with an intravenous infusion of immunoglobulin, an antibody therapy. He also received an injection of microbubbles. Researchers then placed a helmet, invented by Sunnybrook scientist Dr. Kullervo Hynynen, on Traynor's head. The helmet has 4,000 transducers that deliver focused ultrasound waves that cause the microbubbles to expand and contract in the small blood vessels in a targeted area. Those expansions and contractions open the blood-brain barrier in the precise spot where the immunoglobulin circulating in the blood needs to get through. Traynor laid down with his helmeted head inside an MRI machine so that the research team could see in real time that the focused ultrasound targeted the correct part of the brain. This advertisement has not loaded yet, but your article continues below. In future trials, they hope to eliminate the need for the MRI by personalizing a focused ultrasound helmet for each patient's brain where the target points are pre-set and the MRI imaging isn't needed during the procedure. 'MRIs sometimes are limited resources. They're (also) difficult for patients. Imagine being in a tiny tunnel for a long period of time,' said Abrahao. Traynor tolerated the whole procedure beautifully, both Abrahao and Zinman said. Afterward, his blood-brain barrier closed as hoped and he was expected to be discharged from hospital Friday. The researchers emphasized that this was a very early-stage trial and will not result in a treatment for ALS. Later stage trials, with more participants, will be needed. But it's an important step, they say, because it will allow them to start testing different drugs that show promise. This advertisement has not loaded yet, but your article continues below. Zinman and Abrahao are constantly reminded of the urgent need to find a drug. Their ALS clinic cares for about 700 patients. They're expected to survive about three to five years after their first symptom. 'ALS is a horrible, terminal, incurable neurodegenerative disease that results in the progressive decline of motor neurons in the brain and spinal cord,' Zinman said. 'Sadly, we have about three or four deaths a week in our clinic alone, and it's awful. Literally, thousands of patients have died on my watch. And I think about that every day and how we haven't yet had major interventions to change that,' Zinman said. For this trial, they decided to use immunoglobulin because it suppresses inflammation, he said. 'We know that the immune system is not normal in ALS. We know that it shifts to sort of a pro-inflammatory state where the immune system is assisting in the destruction of these motor neurons,' he said. This advertisement has not loaded yet, but your article continues below. Researchers actually tried immunoglobulin in the 1990s as a possible treatment for ALS, but it showed no effect, he said. But it wasn't given a fair shot, he said, because less than 0.01 per cent of a dose can cross the blood-brain barrier and reach the motor cortex. The researchers will be looking for biomarkers of inflammation in Traynor's blood and cerebrospinal fluid to see if the immunoglobulin had any effect, Abrahao said. They've cautioned Traynor that this trial is not expected to result in any form of treatment. But Traynor still sees the study as a source of hope. 'It's kind of exciting to be a guinea pig,' he said. He said his first symptom appeared about 10 months ago while walking down the street with his ex-wife. 'She said, 'Bill, your right foot is kind of like slapping the ground.' And being a guy, I said, 'Nah, it's nothing. It'll go away.'' 'It didn't go away,' he said, noting that he now uses canes to walk. Getting an ALS diagnosis felt like a 'death sentence,' Traynor said. But he's determined to continue living his active life and not give up. 'I'm one of these kinds of guys that I'm super positive.' NBA Canada Toronto & GTA Toronto Maple Leafs Columnists
