Monday March 19th 2018

Feeling liberated

With the help of her mother, Wilma Carberry slides off her wheelchair and onto the seat of an exercise bicycle. Her feet locked tightly into the pedals, Carberry pushes forward to make the wheels turn. After a few awkward turns, she gets into a steady groove, legs chugging along like slow pistons.

“I got MS,” Carberry says, “but MS don’t got me.”

The 55-year-old from Milton has been battling secondary progressive multiple sclerosis since she was 34. For the past 10 years, she’s been confined to a wheelchair.

Now, for the first time since her confinement, she feels hopeful she will one day be able to walk again.

Carberry returned from the Hospital Clínica Bíblica in San José, Costa Rica, on Nov. 6, after undergoing the controversial Liberation Treatment.

The angioplasty (inflating a balloon to widen narrowed veins) procedure is believed to relieve the symptoms of MS. It has been sparking controversy since Italian surgeon Paolo Zamboni published results from a 2008 study that classifies MS as a vascular disorder — rather than an autoimmune disease — caused by vein blockages that leads to a build-up of iron in the brain.

According to Carberry, the first thing she remembered after waking from the 45-minute procedure was the swell of warmth in her hands and feet. Before the surgery, Carberry said her limbs had such poor circulation they would often ache.

Doctors in Costa Rica told her she had 80 per cent blockages in both jugular veins.

Carberry was discharged from the hospital within a couple of days and spent her remaining week in Costa Rica undergoing physiotherapy to rebuild her atrophied leg muscles.

Since returning home, Carberry has been keeping a routine of exercises. She does a few bicycle sets a day, a few minutes for each set, and after each set she feels stronger.

“I feel alive,” Carberry says. “I’m doing little things every day that I haven’t done for years.”

She remains in a wheelchair, but can stand using a walker without help — something she couldn’t do before the treatment.

“I was so tired all the time,” she says, remembering how fatigue and dizziness would drain her energy.

Now, she no longer needs help sitting up in bed. She can use the washroom by herself. Fed up of “being hung up like a side of beef,” she banished to the basement the personal lift she once used to get in and out of her chair.

She has even cut back on her weekly home care services.

Carberry’s follow-up care consists of a month of self-injected prescription blood thinners (to help the veins in her neck heal) and regular exercise.

Carberry, and many other Canadians, travel abroad for Liberation Treatment because it is not offered in this country. Canada’s medical community has not approved the procedure.

According to the Canadian Medical Association Journal (CMAJ), in order to become an accepted method, Liberation Treatment must be shown as beneficial through scientific tests, not just anecdotal reports.

“Unless we do the proper studies, a lot of people are going to be exposed to surgery for this potential abnormality and may get a risk from the surgery without getting a clear sustainable benefit,” says Dr. Anthony Traboulsee, medical director of University of British Columbia’s MS clinic, in a CMAJ release earlier this year.

In September, Newfoundland and Labrador announced it would fund up to $320,000 for an observational study to evaluate how the Liberation Treatment affects the symptoms and progression of MS patients who have been “liberated.”

The province will not pay for patients to have the treatment performed; only to record what happens to those who undergo the treatment on their own.

Eastern Health did not reply to a request for comment.

But Tansy Mundon, director of communications for the Department of Health, said the observational study recently passed approval from the human investigation committee and the province expects to release an update within the week.

Carberry has not been in contact yet, but possesses medical documentation — from blood test results to X-rays to ultrasound clips of her procedure — from her stay in Costa Rica.

“If anybody wants to look at it, I’m OK with sharing the information,” she says. “Why not help somebody else?”

Right now, Carberry is just thankful her future is finally brighter.

“I’m eternally grateful to everyone who helped me in any way,” she says, noting that much of the $20,000 cost to undergo the procedure was from donations and fundraising efforts of family, friends and neighbours.

“I’m very optimistic — by Easter, I’ll be able to walk into church,” she predicts.

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