In the nearly five years since her diagnosis, she knew her health was going downhill.

“My hand gave out on me two-and-a-half years ago,” said Mrs. Courtney. “I wasn’t even allowed to put things in the oven.”

That changed last fall when Mrs. Courtney went to Rhode Island, USA, for a controversial treatment that is said to reduce the symptoms of MS. The Zamboni treatment, also called liberation treatment, involves a day-surgery where doctors widen the vessels in a patient’s neck.

The Italian doctor who developed the treatment, Dr. Paolo Zamboni, theorizes that blocked neck veins hinder blood flow to that brain and lead to MS symptoms.

Clinical trails have not yet proven the treatment works, but thousands of MS patients are seeking the treatment in private clinics.

For Ms. Courtney, the effects of the surgery were almost immediate and they have lasted.

“I felt the difference in my hand in two hours,” she said.

Before she had suffered limited movement in her hand as well as a pins-and-needles sensation.

Her ability to walk has improved. Her legs no longer give out and she has stopped drifting to one side and walking into walls.

“I’ve never been so happy in my life since I had that surgery done,” said Mrs. Courtney. “I go to bed every night and thank God.”

She said some mild symptoms have remained, but there was an immediate improvement after the surgery and she no longer feels like her heath is deteriorating.

The surgery lead to another side effect. Although she was a smoker, her first puff after getting out of hospital left her queasy. She put out that cigarette and hasn’t touched one since.

Before receiving the angioplasty on her neck veins, Mrs. Courtney said an ultrasound technician determined the veins were blocked. The right side had a 15-millimetre blockage, and the left side had a 12-millimetre blockage.

“My main two jugulars were blocked. How was blood supposed to travel to my brain?”

She said she is thankful for the community support from the entire southwest coast. Fundraisers helped pay the cost of travel, and the approximately $7,000 treatment.

Before deciding to receive the surgery, Mrs. Courtney consulted with Keith Riles, a La Poile native who also received the treatment.

Mr. Riles advised Mrs. Courtney to go for it.

Although he hasn’t been without his own health problems, Mr. Riles said he is still feeling the positive effects from the surgery.

“I don’t get fatigued any more,” he said, “ but I still haven’t got my balance back yet.”

Since his surgery in October 2010, Mr. Riles has been working part time, sometimes as much as 20 hours a week.

Before his surgery, Doctors determined his neck veins were partially blocked. A checkup after the surgery has revealed his neck veins are still wide open, he said.

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In mid-January, the government invited applications in conjunction with its pledge to spend $2.2 million to cover costs for patients selected to participate in the research trial of the socalled “liberation therapy” taking place in Albany, N.Y.

Mark Docherty, a Saskatchewan Party MLA who received the treatment for multiple sclerosis in Bulgaria, said Tuesday he isn’t surprised by the level of interest.

“I figured that people with MS would be more than happy to add their names to the list,” he said. “I think we’re all supportive of this. It’s very exciting for everybody throughout the province. All they’re hoping for is to find out a cause and a cure. We’ve got to get some answers toward ‘Why?’ We’ve been asking that as an MS population forever.”

Applications will close on Feb. 24 for Saskatchewan patients interested in volunteering for the trial. Applications can be made online or by phone, Docherty said, noting he encourages people to participate.

The two-year, double-blind clinical trial at Albany Medical Centre has room for 86 Saskatchewan MS patients. As of Tuesday, about 589 people had submitted applications.

Saskatchewan has one of the highest incidences of MS in the world, at 340 per 100,000 residents, the government says.

An estimated 3,500 people in the province have been diagnosed with the neurological disease, which causes the communication ability of nerve cells in the brain and spinal cord to be impaired or destroyed.

Applying for the clinical trial does not guarantee participation. Potential research participants will be randomly drawn from all applications and then go through a screening and assessment process to confirm they are eligible to be involved in the research.

The first of the eligible Saskatchewan patients are expected to travel to Albany in March. It will take several months to contact, screen and assess enough patients to fill all 86 spaces available to Saskatchewan patients, the government said in a news release Tuesday.

Half of those participating in Albany will receive a placebo procedure and half will receive the liberation therapy procedure, which involves opening blocked veins in the neck

The still-unproven treatment is not available to MS patients in Canada and there is ongoing debate in the wider scientific community as to whether it is effective.

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This is proven in Regina filmmakers Leif Kaldor and Leslea Mair’s latest documentary, MS Wars: Hope, Science and the Internet, which is scheduled to air today, 8 p.m., on CBC’s The Nature of Things with David Suzuki.

Due to the many positive testimonials posted on the Internet from people undergoing the controversial MS treatment known as liberation therapy, the multiple sclerosis community in Canada put pressure on the government to introduce clinical trials. Trials are to proceed this year.

“When you start to assemble a large number of anecdotes, that becomes a large body of evidence,” said Kaldor, writer/director.

“These people started to assemble that evidence until it got to a point where they couldn’t just say it’s an individual story.”

Over two million people worldwide are affected by MS, a neurological disease that affects the communication ability of nerve cells in the brain and impairs or destroys the spinal cord.

The documentary centres around Italian vascular surgeon Paolo Zamboni’s findings published in 2009. He discovered people with MS typically have blockages in their neck veins that carry blood from their brains and this could be a factor in MS.

He had conducted clinical trials with Italian MS patients, in which he inserted a balloon into their veins that expanded to widen blocked veins. The majority of those tested reported to have more energy and balance and felt less fatigued.

The medical community was split on what to make of Zamboni’s findings. In Canada, the government initially rejected clinical trials until more research was done.

Waiting was not an option for some Canadians with MS, so they paid thousands of dollars to travel to places that offered the procedure like Costa Rica and Poland. Some that had success with the procedure posted before-and-after videos on the Internet, which showed themselves doing acts they couldn’t before the procedure like walking down the street, jumping or doing a yoga pose.

However, some critics have said liberation therapy advocates don’t mention the fact that Canadians have died from the procedure, the procedure doesn’t work for everyone and, even if it does, the effects don’t always last.

“Like any technology, it is a bit of a double-edged sword,” Kaldor said.

Kaldor was drawn to the topic due to personal reasons. His cousin has had MS for 30 years. The documentary took Kaldor and crew around the world and allowed them to chat with Zamboni and various medical experts.

The crew also talked to people with MS and travelled with a group of them who went to Costa Rica for the procedure. Kaldor admitted it was an emotional experience.

“At one point, one of our crew people was just in tears with the emotion involved with following these people,” Kaldor said.

“For them it’s not immediate life and death, but it is life and death.”

The documentary is also to be shown Feb. 16, 9 p.m., on the CBC News Network.

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In mid-January, the government invited applications in conjunction with its pledge to spend $2.2 million to cover costs for patients selected to participate in the research trial of the socalled “liberation therapy” taking place in Albany, N.Y.

Mark Docherty, a Saskatchewan Party MLA who received the treatment for multiple sclerosis in Bulgaria, said Tuesday he isn’t surprised by the level of interest from Saskatchewan people.

“I figured that people with MS would be more than happy to add their names to the list,” he said. “I think we’re all supportive of this. It’s very exciting for everybody throughout the province. All they’re hoping for is to find out a cause and a cure. We’ve got to get some answers toward ‘Why?’ We’ve been asking that as an MS population forever.”

Applications will close on Feb. 24 for Saskatchewan patients interested in volunteering for the trial. Applications can be made online or by phone, Docherty said, noting he encourages people to participate.

The two-year, double-blind clinical trial at Albany Medical Centre has room for 86 Saskatchewan MS patients. As of Tuesday, about 589 people had submitted applications.

Saskatchewan has one of the highest incidences of MS in the world, at 340 per 100,000 residents, the government says.

An estimated 3,500 people in the province have been diagnosed with the neurological disease, which causes the communication ability of nerve cells in the brain and spinal cord to be impaired or destroyed.

Applying for the clinical trial does not guarantee participation. Potential research participants will be randomly drawn from all applications and then go through a screening and assessment process to confirm they are eligible to be involved in the research.

The first of the eligible Saskatchewan patients are expected to travel to Albany in March. It will take several months to contact, screen and assess enough patients to fill all 86 spaces available to Saskatchewan patients, the government said in a news release Tuesday.

Half of those participating in Albany will receive a placebo procedure and half will receive the liberation therapy procedure, which involves opening blocked veins in the neck

The still-unproven treatment is not available to MS patients in Canada and there is ongoing debate in the wider scientific community as to whether it is effective.

But Docherty said the possibility offers hope to patients.

“When you’ve heard nothing but, ‘There’s nothing we can do’, when there’s a glimmer of hope and there’s some science behind this, this pushes things forward,” Docherty said. “I’m very proud of our government for leading the way in Canada. There’s more work to be done, but this is a step in the right direction. I’m very hopeful.”

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Three weeks ago, Tessier traveled to the clinic in Albany which will be offering clinical trials for more Saskatchewan MS patients starting in March. After feeling the results she said she feels like everyone should get the treatment.

Before she was diagnosed Tessier said her first symptom was vertigo. She described waking up feeling like she was drunk but she wasn’t. After being diagnosed with MS in August 2008 she lost her sight in her right eye and feeling in her hands and feet.

Tessier’s husband first started looking into liberation treatment. She said she couldn’t decide at first. Then her girlfriend had it done last year. Tessier said hearing that it worked for someone else helped give her the motivation to contact the Albany Medical Centre.

Tessier was on the waiting list at the clinic for about a year before having the surgery on Jan. 11. She said she wasn’t nervous going in because it sounded very simple.

“During the procedure they talked through everything,” Tessier said, describing the 45 minute surgery. “I felt the tube going up. I heard the swish of the dye in my neck. “

After two hours of recovery she felt the effects immediately after walking out of the clinic.

“I went shopping afterwards. I felt great,” Tessier said.

Before the treatment Tessier, who works as a teachers’ assistant at Weyburn Comprehensive High School used to sleep away all of her free time. Within days of the liberation treatment, her energy came back and her some of her symptoms disappeared.

“I don’t have numbness in my hands and feet anymore,” she said. “I used to suffer from a lot of migraines I haven’t had any migraines since.”

The Saskatchewan government first announced funding for clinical trials in Albany in September 2011 and they are still accepting applications until Feb. 24. About 3,500 people in Saskatchewan suffer from MS and since the announcement the government has received 550 applications.

The funding for the trial will cost $2.2 million and 86 patients in the province will be chosen to participate in what the Premier Brad Wall called the largest double-blind liberation therapy study to date.

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The seven Canadian and U.S. teams were given $2.4 million in July 2010 to probe the connection between multiple sclerosis and a condition called chronic cerebrospinal venous insufficiency, or CCSVI, put forth as a possible cause of MS by Italian vascular surgeon Dr. Paolo Zamboni.

Zamboni has theorized that MS could be caused by narrowed neck veins, which he suggests cause a backup of blood in the brain, leading to iron deposits that destroy brain cells and set off the cascade of nerve damage characteristic of MS.

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system, which interrupts the flow of information within the brain and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. An estimated 55,000 to 75,000 Canadians have the disease.

“The research underway is significantly advancing our understanding of CCSVI and what its relationship might be to the MS disease process,” Dr. Tim Coetzee, chief research officer at the U.S. National MS Society, said Friday in a release.

The research groups have recruited and performed neck-vein scanning of a broad spectrum of people both with and without MS to see who may be affected by CCSVI. They are also refining imaging methods to reliably verify the occurrence of CCSVI and to understand its role in disease progression, the U.S. society said.

More than 800 people have been scanned with various imaging technologies being used in the studies, including the Doppler ultrasound technique used by Zamboni and his collaborators, and various types of MRI techniques.

The combined results of the research projects will be used in the design of an early-phase clinical trial in Canada to test the ability of balloon venoplasty — which opens up narrowed neck veins — to improve blood drainage in MS patients found to have CCSVI. That trial should launch in late spring.

Several of the teams have presented, or are planning to present, preliminary results at medical meetings. But the complete results will be available only after completion of all the studies, which will involve more than 1,300 people representing a spectrum of forms of MS, as well as individuals with other neurological diseases and healthy controls.

The U.S. National MS Society, which is jointly funding the research projects with the MS Society of Canada, said Friday the next update on the seven studies will be reported in six months.

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Twenty-seven-year-old Pam Lozon, diagnosed in 2009 with Multiple Sclerosis, is convinced a “liberation treatment” available in California will allow her to be the mother she has always wanted to be for her son, Joey.

Today her world includes a walker, a wheelchair and a bathroom equipped with rails, bars and other supports.

In the past 14 months Lozon has suffered through six MS relapses, each of which “takes something away from me and makes me weaker than the time before.”

Symptoms of MS can include balance problems, dizziness, bladder dysfunction, bowel problems, cognitive impairment, depression, dry mouth, difficulty swallowing or speaking, fatigue and difficulty walking.

The surgical procedure Lozon is hoping to undergo in the spring isn’t available in Canada.

Fundraising efforts to date by Lozon and her family have managed to raise approximately $3,400.

An online auction aimed at raising funds for Lozon is planned for Feb. 1 on Facebook.

Fundraising dinners are scheduled for Feb. 11 at the Dover Kinsmen hall in Grande Pointe and March 12 at Smitty’s restaurant in Chatham. A fundraiser is also planned for March 17 at the Active Lifestyle Centre in Chatham.

Lozon said she’s fully aware that the surgery may not help, or if it does, it may not be permanent.

But she said it’s a risk she’s willing to take for Joey.

Lozon also remains optimistic, having spoken with others who have had positive results with the surgery.

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What makes her community work even more awe-inspiring is the fact that she does it all from an electric wheelchair.

In 1996, Proulx was diagnosed with remitting-relapsing Multiple Sclerosis (MS).

“I went from walking, to dragging my foot, to walking on my ankle and walking with a cane, to (being) able to walk at times, using a manual wheelchair … and graduated to an electric wheelchair in 1999,” Proulx stated. It doesn’t mean she isn’t capable of standing up for what she believes in.

“If you don’t like something, get involved and change it,” she said.

It’s just what the Sudbury woman has done, put the challenges aside and made a decision to be the best she could be.

“I have to be (positive),” she said. “I cannot allow myself to be negative, but that’s my character. I always see the opportunities.”

Despite the fact she’s only able to move her left arm, she is still able to maintain her involved, engaging lifestyle, thanks to her helping husband Charlie St. Germain, as well as some assistive devices.

When she attends events as the keynote speaker, she brings her own microphone, and she converses over the phone using the speaker function.

“We don’t focus on her disabilities — we focus on her abilities,” St. Germain said.

It’s taken a considerable amount of commitment from the people around her, but St. Germain said watching his wife succeed is worth every long car ride, home renovation and tiring day spent at conferences.

“She has so much to offer,” he said. “If she stays in these four walls, it’s such a waste of life.”

Everyone with MS experiences “exacerbations” of symptoms a bit differently, but for Proulx, it often starts with her eyes. “(I see) through a fog,” she said. “It’s sometimes difficult to find clarity in it.”

There is currently no cure for the disease — Proulx said before they can find a way to fix it, they have to figure out what causes it.

An option that some sufferers say has been providing relief is something that has been dubbed “liberation therapy”.

Liberation therapy, developed by Italian researcher Dr. Paolo Zamboni in 2009, is a procedure in which MS patients are treated by having balloon angioplasty in their neck veins. The hypothesis is that by increasing blood flow to the brain, MS symptoms are reduced.

Unavailable in Canada, in July the federal government agreed to fund clinical trials.

Hundreds of Canadians, though, are paying thousands of dollars to undergo the surgery at private clinics outside the country.

Proulx believes it is worth taking a chance. She will be receiving the treatment in Albany, New York, in February.To assist the community leader in her quest for wellness, Proulx’s long time friend, Monique Forsyth, has set out to help.

“Rachel and I have been friends for over 40 years,” Forsyth stated. “I have watched Rachel experience the ups and downs of this terrible disease, all the while continuing to be an advocate for women’s rights, education and the disabled. She and Charlie both amaze me.”

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Click here to view the embedded video.

Anyone following the tortuous politics in the battle for CCSVI clinical trials in Canada over the past two years couldn’t help but read the comment as a not-so oblique reference to the fact the CIHR, which did an about-face on a previous decision not to fund clinical trials last year, has yet to announce its research team into Phase I trials (Phase II trials aren’t on the radar). Or that the MS Society, which allocated $700,000 into ongoing studies reviewing only the efficacy of CCSVI scanning, not treatment, has not exactly been a trailblazer on the issue, one that has dominated MS-patient activism in the past two years.

In sending Canadian MS patients to the U.S., after failing to get a home-grown trial off the ground, the premier is also debunking any myth that Canada is “a leader” in CCSVI research. Though the Albany trial is expected to take two years, Wall is already strategizing. While saying he didn’t want to get ahead of himself, the premier did allow that “if we find any symptom relief for MS, treatments that work for the many who suffer—the 3,500 plus in this province—I think it will be incumbent on the province of Saskatchewan to provide those proven and efficacious treatment to those patients.” Those are compassionate words. They’re also fighting words, suggesting that Saskatchewan, the home of once-universal Canadian health care, could also be ground zero for furthering CCSVI science—and possibly providing new treatment for a mysterious, incurable condition that afflicts so many Canadians.

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“We’re keeping our promise to help find answers for patients,” Wall said. “Saskatchewan has aggressively pursued options to advance MS research, and we will continue to support studies that will accomplish that goal. We owe that to the 3,500 people in Saskatchewan with MS.”

The province is providing $2.2 million in funding to have 86 Saskatchewan MS patients included in the two-year, double-blind clinical trial at Albany Medical Centre in Albany, New York – the largest double-blind liberation therapy study to date.

“It’s exciting to be able to offer Saskatchewan patients an opportunity to be involved in this controlled, reputable clinical study,” Health Minister Don McMorris said. “We hope it will answer some of the questions about Liberation Therapy as a treatment for MS.”

Applying does not guarantee participation in the research. Prospective candidates will be randomly selected from all applications to ensure that everyone has an equal chance to participate. They will then be screened for eligibility and medically assessed. Those invited to participate will be contacted over the next few months, with the first patients expected to travel to Albany in March 2012.

Patients interested in volunteering for the study may apply online at www.health.gov.sk.ca/ms-clinical-trial or by calling 1-855-690-9901. Applications will be accepted until February 24.

“Our research team is ready to accept patients and begin gathering data,” vascular and interventional radiologist who is leading the Albany research team Dr. Siskin said. “Patients will need to understand that half of those participating will have the angioplasty procedure and half will not. As a result, this research will give us sound, scientific evidence upon which we can base decisions about the role of treating CCSVI in patients with MS.”

A Regina neurologist will assist the Albany research team with assessment, referrals and ongoing monitoring of Saskatchewan participants.

“The MS Society of Canada commends the Government of Saskatchewan in taking this bold step on the path to improving the health and well-being of those living with MS,” Government Relations Chair and Member of the Saskatchewan and National Boards of the MS Society of Canada Eugene Paquin said. “We anticipate that it will result in new information and answers for MS patients and their families. Saskatchewan has shown outstanding leadership on MS research and we look forward to partnering with them in support of this initiative.”

McMorris stated that Saskatchewan remains interested in participating in pan-Canadian research into the Liberation Therapy, announced last summer by the Canadian Institute for Health Research.

In 2010, Saskatchewan was the first province in Canada to commit funding for research into the Liberation Therapy’s effectiveness in treating MS symptoms. Other provinces have since announced similar intentions, or initiatives to create MS patient registries or databases on those who have received the treatment.

Multiple Sclerosis is a neurological disease in which the communication ability of nerve cells in the brain and spinal cord is impaired or destroyed. An estimated 3,500 Saskatchewan residents have MS. Canada’s prevalence rate of MS is among the highest in the world at 240 per 100,000 people; in the prairies, the rate is 340 per 100,000 people.

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