WOLFVILLE - Wolfville area resident Christopher Alkenbrack makes no bones about it.
© TC Media - Wendy Elliott photo
Christopher Alkenbrack and his wife Claire Mallin are both passionate activists when it comes to advocating for improved treatments for Chronic Cerebrospinal Venous Insufficiency.
While scientists argue about the success of the so-called Liberation therapy for Multiple Sclerosis, Alkenbrack passionately promotes what worked for him.
Alkenbrack is the president of the National Chronic Cerebrospinal Venous Insufficiency (CCSVI) Society. The volunteer-run society is dedicated to bringing together patients and researchers and keeping everyone updated on the latest information about surgery via major blood vessels, especially as it relates to the treatment of MS.
Alkenbrack says group members are interested in how blood flow issues affect a whole range of afflictions, such as Alzheimer's, Parkinson's, Lyme disease, migraines, chronic fatigue and irritable bowel.
Living with MS
Alkenbrack gave a speech about living with MS on Parliament Hill in 2010. He and his wife, Claire Mallin, have lived with MS since 1992.
“We weren’t even married when I was diagnosed, and I thought that this uninvited guest in my life would prevent my beautiful girlfriend Claire from committing her life-long love to me,” he said.
The day after his diagnosis at the age of 24, Mallin was not willing to break up the relationship, despite the fact they’d only be dating a few months. They’ve now been married 21 years and she has become an activist as well.
Alkenbrack, an educator, kept his MS to himself until 12 years ago, when he began a series of attacks that landed him in and out of hospital for the next two years.
“I finally had to leave the job that I loved in 2003, when my relapsing remitting MS had moved into the secondary progressive stage,” he said.
The former school principal said his children, Nick and Leah, have always lived with MS.
“MS not only had its grip on me, but on every member of this family,” he said. “We’ve had an amazingly fulfilled life, despite my battle with this illness.”
Over the years, Alkenbrack went through the many phases of MS - vision problems, balance and gait problems, numbness, inability to concentrate, overwhelming fatigue and bladder issues. He’s gone from using a cane to no cane, back to two canes and then found himself in a wheelchair.
“We just never know where tomorrow will lead us,” he said, but over time he’s witnessed “many hopeful new avenues of research for MS. In fact, what was sure-fire science a decade ago is now only a memory in the annals of medical history.”
Eventually, his neurologist told him that there were no more treatment options for his form of MS. That’s when his journey took an unexpected turn. He got a
phone call from an excited neighbor, saying, “Christopher, did you see that W5 show last night about the new theory on MS?”
He responded with little interest, thinking “it was just another hoax – a word that we`ve all seen and heard far too often from the medical community since that time.”
His sister sent him a clip from the show and Alkenbrack’s daughter watched it with him.
“Leah started to cry. She wrapped her arms around me and said something like, ‘Dad, my two dreams are going to come true. We`re going to Italy, and you`re going to get better!’”
Dr. Paolo Zamboni had been working on a vascular condition called Chronic Cerebrospinal Venous Insufficiency. Tests in Montreal confirmed Alkenbrack had a blocked jugular vein. A year later, he and Mallin travelled to Katowice, Poland, for Liberation Therapy.
A surgeon used a balloon-catheter to widen blocked veins in Alkenbrack’s neck, a procedure akin to angioplasty that heart patients routinely receive in Nova Scotia.
The travel costs and procedure at a private clinic cost $10,000, but Alkenbrack felt positive effects immediately after the 30-minute procedure. The next morning, he was able to walk without a cane. Mallin felt like she’d regained her husband.
His roommate, Steve, a man from Scotland, suffered from primary, progressive MS. Less than an hour after his surgery, his once claw-like hand seized Alkenbrack’s in a firm handshake. Steve was walking again.
Zamboni may not be a saint, Alkenbrack says, but he indeed is a pioneer - a professor of vascular surgery who allowed himself to think outside the box. He even performed the procedure on his own wife.
Alkenbrack’s symptoms improved after going to Poland, though he can still have bad days.
“In my case, I feel like I‘ve turned the clock backwards by five or six years on my disease progression,” which no conventional MS therapy had been able to do.
New Hope for MS
In 2011, an enthusiastic Alkenbrack got involved in a cross-country project with New Hope for MS founder Tim Donovan. Donovan crossed Canada in an effort to make CCSVI treatment available. He had spent 20 out of every 24 hours in bed before he had the vascular treatment.
During his stop in Wolfville, Donovan spoke about the fact that the suicide rate for MS victims is seven times the national average. MS is a depressing and debilitating disease, he said, that 400 Canadians die from annually.
“Somebody’s dying today to MS, and we’re allowing them to die because we’re not treating them,” Donovan said.
Today, Alkenbrack is careful about diet and lifestyle. He can see that a second CCSVI surgery may be in the cards and that’s fine with him. He looks at fellow sufferers and finds inspiration.
“With my dedicated wife and my beautiful children,” he celebrates his regained life every day. “Unfortunately, I still live with the constant awareness that MS has its hold on me.”
This is what motivates this couple’s activism.
Aid from FedEx
Recently, FedEx, which runs a contest on its Facebook page to support registered charities, gave the CCSVI $5,000. Alkenbrack said the money will come in handy for the society’s continuing communication efforts.
"We are an all-volunteer society, and this $5,000 will help us continue our mission,” he said.
The money will go towards updating the website, creating information flyers and improving communications with doctors and patients on the latest research.
Alkenbrack says his expanding group of about 200 tries to work with the Canadian MS Society, but, he said, they have different aims.
Zamboni, Alkenbrack says, “exposed a CCSVI iceberg – and the tip of this iceberg is slowly emerging. We must not let those who want to push it down under the surface of the water take control of this research.
“We don’t have all of the answers, but we have a glimpse of some of them.”
He lauds researchers like Dr. Salvatore Sclafani, Dr. Bernie Juurlink and National CCSVI Society board member Dr. Bill Code, who believe in an open dialogue between patients and researchers. A medical doctor in British Columbia, Code was treated for CCSVI himself in California three years ago.
“We’d like to get all the community together,” he says. “We’re on a long journey to see if we can change the paradigm.”
Mallin said 20 years of studies are indicating that drugs aren’t helping MS patients.
“In fact, they make you worse,” she said.
The couple believes the CCSVI procedure should be standard practice if it helps 60 to 70 per cent of MS patients.
Mallin recalls the era in the 1970s, when angioplasty was unknown. CCSVI is safe, she maintains, “but they just put up roadblocks. Someday, it will be the standard of care, just like that.”
The couple say they feel discouraged about being in the middle of a turf war between some of the greatest medical minds.
“It is confusing and frustrating as patients with a chronic, life-long disease to see the division in the medical community, and how this separation creates unnecessary waits to potential treatment,” he added.
There are more than 3,000 people in Nova Scotia with MS and about 30 to 40 per cent of them live on disability, he says.
“We must not give up hope. We must continue to march forward. We must believe that we will be the last generation of people ever to hear those words that resound in our ears as a life-long sentence of uncertainty and despair, the words that I heard on that day back in April of 1992 – ‘Mr. Alkenbrack, you have Multiple Sclerosis’.”