Twenty years ago, Silvester Law noticed a growing pain in his legs and it was becoming difficult to walk. After several tests, Silvester was diagnosed with hereditary spastic paraplegia (HSP) — a rare neurological disorder that affects one in 20,000 people. HSP causes weakness and stiffness in the leg muscles which gets worse over time. For all of his adult life, literally every step taken has been difficult for the local photographer.
“It was very painful,” he recalls. “It made life difficult and it was hard to get around.”
“I will never have a regular life, but I go out and do things anyway.”
He continues with a smile, “I put so much pressure on my shoes. I wear them out. Within months, I have to get new pairs because there are holes in my shoes.”
To treat his HSP, Silvester had to regularly take a skeletal muscle relaxant called Baclofen and receive painful Botox injections in his legs. The medication helped Silvester recover most of the use of his legs but it impaired his mental function making it cumbersome to perform the simplest of daily tasks like going to the store.
As an avid photographer, Silvester needed his mobility to keep up with fast-paced events such the 2010 Vancouver Olympic Games at which he worked for the Vancouver Organizing Committee.
In October 2017, Dr. Scott Paquette and a team at Vancouver General Hospital installed a Baclofen pump into Silvester’s stomach and spine. Less than 100 people in British Columbia use this innovative technology.
Instead of the higher Baclofen doses he was taking orally, the pump injects smaller doses into the spinal fluid affecting Silvester’s mental functions significantly less.
“The advantage is that the medicine is delivered directly into the spinal fluid and does not have to be taken by mouth which causes side effects of sedation,” says Dr. Viet Vu, the spinal cord physiatrist at GF Strong Rehab Centre who helps Silvester manage the pump.
“The pump changes people’s lives,” – Dr. Vu.
“It gets them out of the house and allows them to travel. They can get out and engage in the community which Silvester has done.”
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