A well-known Vancouver billionaire is opening up about his health issues more than 30 years after his diagnosis.
The now-67-year-old said he was in good physical shape at that age, but started being unable to use his arms to swim across a pool. He also started experiencing back pain, so he went to the doctor, then a neurologist and was told he had muscular dystrophy.
Wilson said he took the diagnosis in stride and decided to focus on his fitness and athleticism until his body started to fail him again.
“I started not being able to lift my hand up so I started doing the Grouse Grind,” Wilson told Global News. “I became fanatic about it. I’m a Type A personality when it comes to athletics. I love the endorphin rush. I love the runner’s high, I guess you would call it.”
Then three years ago while in an airport in China, he tripped and landed hard on a newly polished floor – a new challenge had emerged.
“I got up immediately. My ego was like, in check. And then I went about 15 feet and did the same thing again. And then I realized that the muscle on my left foot wasn’t coming up. It was not working anymore. So my left toe wasn’t coming up anymore as I (brought) my foot through.”
Facioscapulohumeral muscular dystrophy type 2, also known as FSHD, commonly affects the muscles of the face, shoulder blades and upper arms. Wilson said people of his age with the condition often cannot make facial expressions anymore.
“But it affects everyone differently,” he added. “And it also can be the case where it will affect one muscle on one side, like my foot, but it will be perfectly fine on the other side.”
He said it also turns the muscle to fat, and about 48 per cent of his body now is probably fibrous fat.
But, he said he’s not letting his years-long illness get him down.
“I choose to be happy 100 times a day,” he said. “I choose life.”
Wilson announced Tuesday he has committed $100 million and created a new venture, Solve FSHD, with the objective of finding a cure by 2027.
“Solve FSHD will accelerate the underfunded development of drugs and therapies to stop muscle degeneration, increase muscle strength and improve the quality of life for those living with this,” he said.
This is now his focus but the well-known figure is no stranger to media coverage.
In 2015 he resigned from the company’s board.
Recently he was in the news for donating $4 million to help the BC Parks Foundation to purchase threatened Coastal Douglas fir ecosystems in the Strait of Georgia. The area includes all of Saturnina Island and about a half square kilometre waterfront parcel on Lasqueti Island.
When asked why he made this announcement on International Women’s Day, Wilson said the choice was “unintentional.”