If you saw Richie Kohorst walking down the street, you’d notice the limp and the stiff right arm bent in front of him. They’re noticeable, but not debilitating.
What you might not realize is how much of an improvement he has undergone since he had the veins in his neck opened up by doctors more than 18 months ago.
Nor might you realize that he had to leave his own country to undergo a procedure that had no guarantees of working and that has been so controversial the Canadian government won’t pay for it.
But talk to Kohorst and you will realize this is a man who believes in the surgery and its effectiveness as much as he believes that all Canadians with MS should have a right to the same relief he felt in October 2010, when he underwent what’s called liberation surgery.
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Kohorst was 33 when he was diagnosed with progressive multiple sclerosis. Within a couple of years, his right arm was weak and cold and he walked with a heavy limp.
With nothing else working, he turned to chemotherapy in a last-resort attempt to stem the MS. It didn’t work and everything was looking bleak.
“That was desperation. You’re looking for answers,” he said.
A nurse in Kelowna told him he’d be in a wheelchair by 40.
The loss of mobility was difficult enough for an active father of two in his 30s. As a lifelong hockey player who also coaches goaltending, it was devastating.
So Kohorst had no hesitation about getting the surgery.
On Oct. 13, 2010, Kohorst was in Mexico at an American-funded hospital having surgery for chronic cerebrospinal venous insufficiency (CCSVI). The controversial procedure, founded by Italian Dr. Paolo Zamboni, involves opening up constricted veins affecting blood flow around the brain.
The relief was immediate. The day after his surgery, he and wife Suzie went for a day-long walk in the 35-C heat — heat that two days earlier would have made him wilt in minutes.
Not all CCSVI patients have touted success. Some have had little in results, some have suffered severe problems afterward, some have even died.
Kohorst believes the option should be available. He never questioned having the surgery, even knowing the possible consequences.
“I still tell people, what’s the worst that can happen to you? You’re going to die? We’re all going to die,” he said.
“You’ve got to want to do it. You’ve got to fight back.”
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Twenty months after his surgery, Kohorst said he has had some backward steps, but he’s better off than he was and he’s finding other ways to help keep the MS at bay.
Now 38 years old, his mobility has improved from when that Kelowna nurse predicted he’d be in a wheelchair by age 40.
No way is Kohorst going to let that come true.
Simple things in his arsenal are working, like taking vitamins and using a vibrating platform machine to loosen up stiff muscles on his right side.
“I feel like a million bucks right now,” he said after spending a few minutes demonstrating how he uses the machine and how it has made his MS-stiffened right arm and hand warmer.
What bothers Kohorst is that he had to leave his home country to get his surgery. Since he has experienced the positive results first-hand, he’s become an advocate for CCSVI to be done in Canada.
Friends and family put together airfare for him and Suzie, so they were left to cover the actual medical costs of about US$12,000.
Kohorst said it would be cheaper, in the long run, for the Canadian government to fund CCSVI surgery for patients than to pay for them to be on disability and to cover years of MS medical costs.
“I wish they would pursue it,” he said.
“I don’t consider myself disabled. I’m as active as I could possibly get.”
He enjoys even the most mundane activity, like laundry or mowing his steeply sloped backyard, just because he can do it.
If need be, he’ll get the surgery again — gladly. At this point, however, he’s comfortable with the improvement in his life.
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Kohorst was about 12 years old when his mom had an MS attack.
Suzy Gionette lives part-time in Invermere and part-time in Calgary, where she works on movie sets.
She recalled the attack, which started in her right optic nerve and made her feel like she was having a stroke. Her vision went double and she couldn’t stand or walk. She spent four weeks half paralysed on the right side of her body.
Eventually, her muscles and vision were restored. Gionette said her form of MS is different than her son’s — his is progressive, while hers mostly flares up as attacks when she gets stressed.
“If I get stressed, my right cheek and the fingertips on my right hand tingle.”
She takes some minerals — mostly zinc and iron — and removes herself from stressful situations. That’s put her MS into remission for years.
Her own situation gives her some insight into her son’s condition and she was fully supportive of him getting liberation surgery.
“He had nothing to lose,” she said.
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Kohorst has a nine-year-old son, Zachary, and seven-year-old daughter, Hillary. Zachary plays hockey, just like his dad. Goaltends, in fact, just like his dad.
Although Kohorst has just taken on a new job as goaltending coach for the TRU WolfPack hockey team this fall, he also plans to get to his son’s early-morning practices, too.
The kids were too young to really know their dad before MS. It was just another part of him. Now that they’re older, they’re asking more questions, like what was he like before he had MS, or what would he be doing if he didn’t have it?
Kohorst doesn’t have time for what-ifs. He’s working, coaching, being with family, and mowing that daunting backyard lawn.
“I don’t know what’s in store. I’ve been having so much damned fun.”
When he coaches goaltending, he passes on the occasional sports cliché.
His favourite is this: “Winning isn’t everything, it’s the only thing.”