MOOSE JAW – As a mother of twin girls, Nicole Appleby is constantly on the go, but with MS, it is not always easy to be on her feet.
“Shortly after their birth I started to notice some numbness and tingling,” she said.
When the province decided in 2012 to participate in a clinical trial in Albany, New York to study CCSVI, also known as liberation therapy, Appleby jumped at the opportunity. The study aimed to find out how well angioplasty relieves MS symptoms.
“It was huge to know something so expensive, something I could never afford at this point in my life, could be provided to me,” Appleby said, though she knew only half of the nearly 100 Saskatchewan participants would receive the actual treatment; the rest would receive placebos.
Appleby said after a fast start to the process, it suddenly started to slow down. Updates about when she would go were few and far between.
“As things dragged on, so did kind of our hopes,” she explained.
So Appleby was not overly surprised when the province announced Monday, the study was cancelled after few American patients signed up. What upset her the most, though, was she did not hear directly from the province until hours after the announcement was made.
“I was kind of shocked and surprised that I hadn’t been notified personally, whether it was by phone or by email. I heard through word of mouth,” Appleby said.
The government said the news release was issued shortly after they began telling patients because it would likely end up on social media. But through it all, they remain committed to researching treatments. One of their own had the procedure and is living proof it works for some people.
Several years ago Regina-Coronation Park MLA, Mark Docherty, went to Bulgaria, then to California for the treatment and it worked for him.
“I was on the operating table and I started to actually have sensation in my right fingertips for the first time in a decade,” he said.
Docherty said the government will find another avenue for the research because it still has $2 million dedicated to MS.
“All hope is not lost,” he said. “It’s just a glitch.”
Appleby agrees.
“The progress we’ve seen for MS research as far as medication in the last 15 years has been huge, so my hope isn’t gone; we’re just kind of left in a standstill,” she explained.
Appleby said she will wait for updates from the province to see what the next options are, but no matter what happens, she will always put on a smiling face.
“I’m never ever going to let the MS define me,” she explained. “I’m not going to let it drag me down or anyone else.”
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