It’s something the students do every year. It’s their way of thanking him.
Watson, an East Gore resident, speaks to students every year about what it is like to live with ALS, a fatal neuromuscular diseasealso known as Lou Gehrig’s Disease.
“I enjoy that because the biggest problem I had before, during and after diagnosis was ignorance,” the 50-year-old said, speaking into a headset with a microphone that amplifies his soft whisper.
“I felt that was probably the best way to prevent my daughters from being bullied by other students.”
Something didn’t seem right
Watson’s battle with ALS began more than 10 years ago. He was working long shifts as a member of the Canadian Navy during the aftermath of the Sept. 11, 2001 terrorist attacks in New York.
Tasked with helping stranded airline passengers and prepping ships for deployment, Watson started to think he was feeling more drained than he should as an active man in his mid-30s.
Exhausted and exceptionally irritable, Watson sought medical attention to determine why his energy levels had drastically changed. Medical personnel with the military initially believed he was suffering from a respiratory issue.
That theory, however, didn’t explain why Watson eventually started choking on his food to the point that his wife, Brenda, had to perform the Heimlich maneuver.
“For two and a half years, I kept going to doctor after doctor, and all of their tests always came up negative,” said Watson.
Neurological testing alone could not pinpoint the source of Watson’s woes. A tongue twitch, which evolved in 2004, led doctors to suspect ALS could be to blame.
The diagnosis — bulbar ALS — was devastating for the father of two young girls. But the bad news also came with a sense of closure.
Living with ALS
Watson decided to fight the disease with a positive attitude and a willingness to adapt.
“I have to listen to my body and do what my body says,” he said.
That means using a wheelchair to get around outside of the house, breathing through a ventilator at night and relying on a feeding tube to pump liquid food into his stomach.
He still has enough strength to walk on his own and drive his truck, but Watson is always careful to conserve as much energy as possible.
“Exercise is good for everyone but me,” he said.
Watson has a theory: he believes he lives on because he consumes at least 2,700 calories a day and rests often.
“When I was first diagnosed, another individual with ALS told me, ‘You’re like a battery, conserve your energy. Only use it when necessary’.”
Watson links weight loss to strength lost.
“Once you start losing, you lose fast,” he said.
Rallying behind the research
Dr. Victor Rafuse, an ALS researcher and director at Dalhousie Medical School’s Brain Repair Centre, is interested in testing Watson’s theory about calorie intake.
Rafuse felt inspired to shift the focus of his research to ALS upon meeting Watson at an ALS conference in Toronto.
“He’s been able to beat this disease for quite some time now, because typically, you’ve got a two- to three-year lifespan after diagnosis, and he’s now gone on 10 years or more,” said Rafuse.
“He’s doing something right.”
Rafuse’s interactions with Watson have inspired the researcher to explore the link between weight loss and the progression of the ALS, search for answers that may lead to a diagnostic test to detect ALS in its early stages and study how gene therapy could potentially improve the breathing of people living with ALS.
Rafuse said Watson’s good cheer and determination motivates everyone in the lab, veterans and trainees alike, to continue their research.
“He’s just got an ability to change his behaviour and cope with the disease in a way that I’ve never seen before,” said Rafuse, who added that Watson always has a smile on his face when he visits the lab.
It seems fitting that Watson is an ambassador for the 35th annual Molly Appeal, a major fundraising campaign for the Dalhousie Medical Research Foundation. The goal of this year’s Molly Appeal is to raise at least $250,000 to expand the Maritime Brain Tissue Bank.
“Expanding the brain bank will provide ALS researchers like Dr. Rafuse with access to brains and spinal cords from people who had ALS, so they can learn more about the disease and how to diagnose and treat it,” said Melanie Jollymore, a spokesperson for the Molly Appeal.
Making it count
Thanks to campaigns like the Molly Appeal and the ALS Ice Bucket Challenge, which challenged people across the world to raise funds and awareness over the summer by pouring icy water over their heads and sharing it via social media, Watson no longer feels like he is suffering from a disease no one knows anything about.
He’s thrilled to know some of theproceeds from the wildly successful ice bucket challenge will help ALS Canada assist those who unable to acquire the costly medical equipment he’s received through Veterans Affairs Canada (VAC). His wheelchair alone, for example, cost more than $30,000.
“Grade Primaries ask how fast my wheelchair can go,” he said with a laugh, recalling an earlier school assembly starring Mike Watson.
A respirator for the back of Watson’s wheelchair costs about $20,000. The device that amplifies his voice rings in at roughly $500.
Watson played a key role in pressuring Veterans Affairs Canada (VAC) to commit to providing benefits for Canadian Military personnel diagnosed with ALS. He travelled to Parliament Hill in Ottawa on multiple occasions to advocate for his fellow veterans until the battle was won. He’s proud to say one of his daughters, then 14, met Prime Minister Stephen Harper in the process.
Watson is determined to make the most of his time. He plans to hook his custom-built, wheelchair accessible travel trailer to his truck this fall and drive off to Florida with his wife for the winter. The trailer is geared to meet his needs, and the timing is as good as it will ever be.
“With ALS, time is not on your side,” Watson said.