又一位在5/18號做完 Liberation treatment 的MS病患的分享
Valley man who travelled to Poland for experimental liberation therapy says his health improved immediately, dramatically。
Chris Alkenbrack walked down the driveway, a leash in one hand and a neon green cane in the other.
A tiny pug dog at the end of the leash jumped up in friendly fashion to greet a visitor.
Alkenbrack was just back from a walk along the quiet roads of Forest Hill, a hamlet nestled on South Mountain near Wolfville.
He soon had a pot of coffee brewing and kept up a lively conversation as he moved around the kitchen of the rustic bungalow he and wife moved into when they came to Nova Scotia from Ontario in 2006.
Two weeks ago, he said, this kind of mobility would have been impossible.
Diagnosed with multiple sclerosis in 1992, Alkenbrack’s disease had progressed to the point where two canes and a wheelchair were necessary for him just to get through the day.
"Before, when I was walking with my canes, the minute I would lift up my head, the room would spin," said Alkenbrack, 42, a former school principal.
He recently underwent a controversial procedure known as liberation therapy in a clinic in Poland. Liberation therapy is an angioplasty type of surgery, in which a balloon-catheter is used to widen blocked veins.
It’s controversial because the procedure has been touted as an extremely effective treatment for MS, even though medical trials have not been done to verify the claims.
Alkenbrack agrees more research must be done but for him, the evidence is clear.
"I’ve stepped back in time five or six years, and that’s significant," he said.
Over the past several years, his MS developed from "relapsing, remitting" type, when symptoms such as double vision and fatigue would come and go, to secondary progressive.
"I had more and more lesions on my brain," he explained. "It’s a really slow progression downhill."
When the side-effects of his medication, which most recently included chemotherapy, began to adversely affect his heart, Alkenbrack had enough last August.
"My wife and I discussed it and I said, ‘I know what MS can do and I can accept that, but I still want to be alive to see my grandchildren someday,’ so I stopped."
After hearing of liberation therapy in the news and through Facebook contacts, they didn’t hesitate to cash in $15,000 in RRSPs. The money paid for travel, accommodations and all medical work at a clinic in Katowice, Poland.
The improvement after his half-hour surgery on May 18 was immediate and dramatic, he said.
After he and his wife returned from Poland, they picked up his 13-year-old daughter at the airport. She had been in Quebec on a school band trip during that time.
"I was walking with my cane with my wife, at a pretty good clip," he recounted. "My daughter recognized my wife; she didn’t even know it was me. When she realized it was me, she came running to me, threw herself in my arms and cried like a baby. She said, ‘Dad, I’m so happy for you.’ "
Under the new theory, advanced by the Italian vascular surgeon Paolo Zamboni, MS is caused by something called chronic cerebrospinal venous insufficiency, or CCSVI, which leads to blood with too much iron being diverted to the brain because of narrow veins.
Zamboni’s theory challenges the long-held belief that multiple sclerosis is an autoimmune disease, caused by the immune system attacking the myelin sheath that covers nerve tissue.
Groups such as the Multiple Sclerosis Society have urged MS patients to be cautious about putting life savings into travelling to countries such as Poland, Bulgaria and Kuwait that offer the procedure.
Maureen MacDonald, Nova Scotia’s health minister, has said the province needs to be sure the risks and the benefits of the treatment are clearly established.
"It’s still a very experimental therapy that requires more research," she told the legislature in early May, when Alkenbrack and others gathered in Halifax to call on the province to provide the treatment.
"We need further research to determine what the impact of this treatment will be."
But Alkenbrack points out that even if liberation therapy simply halts the progression of MS for some people, it will be worth it.
"There are over 3,000 people in Nova Scotia with MS, about 30~40 % on disability," he said. "Can you imagine the savings if this just worked for just 30 per cent of them?"