Hey there, time traveller!
This article was published 9/8/2013 (2234 days ago), so information in it may no longer be current.
BRANDON — This is how Heather Garden, the subject of a new documentary titled The Healing of Heather Garden, embarked on the final phase of her fight with multiple sclerosis.
After years of conventional medical therapy failed, Garden, a former gymnast and gymnastics coach, threw herself into the alternative-medicine scene with the single-mindedness of the athlete she had always been.
She started by detoxing her body and followed that with a strict diet, dietary supplements, specifically targeted exercises and large doses of relaxation. She wouldn't allow people near her who doubted her methods. She removed negativity from her life.
She made remarkable progress over a five-year period but still required a cane to get around. The final stage in Garden's odyssey was to relearn to walk.
So Garden and her friend, Bridget Shaw, prepared to go to a resort town on the Gulf of Mexico, near Puerto Vallarta, for seven weeks. They chose the Gulf for its buoyant salt water. Garden could practise walking in deep salt water and not hurt herself by falling.
In an interview, Judith Morrow, the director of the documentary, described the scene of Heather trying to walk for the first time without her cane as she left Brandon for Mexico.
"Bridget looks at Heather and she says, 'I guess you won't be needing that,' and she puts Heather's cane down. And the staff (of Lady of the Lake gift shop in Brandon that Shaw and Garden started together) are all there. And Heather starts to walk and she's hanging onto things. And the staff are crying. They're looking at her and it's a painful struggle for her to get to the van. And the staff are crying. And she can't walk."
I saw the premiere of The Healing of Heather Garden in Boissevain last May. I just happened to be in town that night. The premi®re was in Boissevain because Garden is a former resident, and Morrow is from a hamlet down the road called Margaret. But southwestern Manitoba is also a reputed hot spot for MS. At least three people from the area have tried the so-called "liberation therapy" without success.
After the lights came up, I didn't know what to think. I didn't know how to write about what I'd just seen. I didn't know if I wanted to write about what I'd seen.
After all, alternative therapy for people with MS is nothing new. Many people try alternative medicines without great success. But in the end, should we ignore something just because we don't understand it?
Garden met me at the Lady of the Lake, a kind of funky gift shop and restaurant-slash-pub in Brandon that she manages. Two things struck me about her besides her megawatt smile. One, she is an ordinary person in terms of her politics (not interested) and views. Two, she has extraordinary determination. She doesn't have to gear it up. After the interview, as I was getting into my car to leave, I realized — as silly as this sounds — the theme from Rocky had started playing in my head.
Garden is originally from Muskoka, Ont., and moved from Toronto to Boissevain to be with her future husband, Terry Garden, whom she'd been dating for a couple of years. Friends in Toronto couldn't believe she would move to some small town they'd never heard of in rural Manitoba. People in Boissevain, too, wondered if she would find them boring. But she really took to it. Today, she marvels at all the support she received from people in the community. "In a small town, people are there for you," she said.
She got a job as transport co-ordinator at a plant that makes chemicals for the bleaching process in pulp and paper mills. She would go to work every day smartly dressed in a business suit. Then one day her legs started to tingle and feel very heavy. Within a few days, the condition spread to her arms.
The cause of MS isn't known, but people always want to blame her illness on working at a chemical plant. She doesn't buy it. If anything, she thinks her body had become run down due to her lifestyle. She was working plenty of overtime as the plant was undergoing expansion. She was in a new environment and three months pregnant. She wasn't eating right and getting enough rest.
Her family doctor believed she was experiencing neurological problems and told her to go home and not move. She was taken to hospital the next day and saw noted neurologist, Howard Mandell, now practising in South Carolina.
It wasn't long before Garden could no longer drive and was housebound. Within three months, she was completely debilitated. She had trouble breathing. She often couldn't grasp things with her hands and she couldn't walk without assistance. She had to be lifted up the stairs of her house. There were periods when she couldn't move her limbs. She would get tired quickly, like from just getting into a vehicle. "If I wanted to go anywhere, like watch my son (from her previous marriage) play baseball, it was like packing a baby. And then I got tired so easily," she recalled.
"A lot of people don't experience pain with MS, but I experienced a great deal of pain," she said. The pains were "like lightning bolts" through her body and they struck without warning.
MS was suspected from the start after tests showed it wasn't a brain tumour. But MS is diagnosed over a period of up to two years by tracking the neurological symptoms. Her condition was finally confirmed as secondary progressive MS, a subtype of multiple sclerosis, which means she had long periods of acute symptoms, then the symptoms would go into remission for up to a couple of weeks.
"Symptoms come and go. Sometimes I needed a wheelchair for a period of time, but then I could get around with a cane again." But secondary progressive MS also means symptoms become progressively worse.
MS is an autoimmune disorder in which the immune system mistakenly attacks healthy cells in the body. The attacks gnaw away at the myelin cells, the sheath that covers a person's nerve fibres like the plastic coating on electrical wires. A great variety of debilitating symptoms results.
Conventional treatment tries to alleviate the severity and frequency of symptoms, but neurologists say there are no interventions that can return a person to full health. About 100,000 people in Canada have MS, and Canada has one of the highest rates per capita of MS in the world.
Garden received regular treatment at the MS Clinic at Health Sciences Centre in Winnipeg. It should be pointed out this was in the 1990s, and conventional treatment has changed since then. Garden underwent an exercise regimen of pushing, pulling and working on strength and stamina. She received treatment for five years but continued to deteriorate.
Drugs and steroids were a big part of her rehabilitation program. The way conventional medicine treats MS is to try to shut down the immune system, because it is attacking itself. "I was getting sicker and sicker with the drugs. I was taking a lot of drugs, and then taking drugs for the side effects of those drugs." She was even starting to lose her eyesight. Doctors gave Garden no hope for recovery and told her to prepare to spend the rest of her life in a wheelchair.
Almost 80 per cent of people with MS try some form of alternative medicine. That in itself speaks to the efficacy of conventional treatment. As well, conventional treatment has adopted elements of alternative medicine over the years, such as yoga.
The problem for Garden was if she stopped conventional treatment, she would lose her disability support payments from her insurer. Some people close to her told her she was crazy to even consider it. Her husband, from whom she is now divorced but remains on best of terms, was completely supportive. She was just getting progressively worse with conventional treatment. So she made the monumental decision. She stopped the treatments, lost her insurance payments and plunged into the alternative-medicine scene.
Her journey with alternative medicine was guided by her friend, Bridget Shaw, who ran Wild Rose Emporium, a coffee house and gift shop in Boissevain. Shaw led an alternative lifestyle — she's still called a hippie by some people in southwestern Manitoba. She had completely rejected processed foods in her diet.
Garden started by drinking a spoonful of charcoal mixed with water to cleanse the toxins from her body.
"You feel like hell. You feel so weak. It's really tough," Garden said. "But you can't rebuild your immune system before you get rid of all the crap in your body."
Then she introduced a super-healthy diet to her body. She gave up all processed foods, sugar, dairy and wheat, and limited her salt. She was helped on her journey by a network of alternative-medicine disciples that included Boissevain veterinarian Dr. Don Hemingway; Paulette Efimenko, a midwife and whole-body healer in Dunseith, N.D. (she provided the charcoal); Brandon iridologist Cathy Dupuis of Cathy's Natural Way in Brandon; organic herb growers Dave and Maggie Neufeld near Boissevain; and others.
She was taking everything from carrot juice to specifically targeted dietary supplements, supplied by Cathy's Natural Way, to build up her immune system. Her diet was super-dense with nutrients to provide her body the building blocks to heal itself. She began an exercise program, and included massage and reflexology and meditation. She made lifestyle changes that stressed positivity.
"You can't start any of this unless your mind is ready," Garden said. "Anything bad or ugly, I did not take in. You also had to mentally believe you could get well." She blocked out people who thought her methods were bogus.
It took more than a year before she saw any results. First the numbness in her left hand cleared up, then the twitching in her eyes stopped. These were small victories. She had expected more. Her friends wouldn't let her get discouraged. She is often approached today for advice by people with MS. "You have to make big changes and not stop. It could go backward for a time," she tells them.
Very, very slowly, over a period of five years, symptoms started to diminish and she began to feel herself getting stronger. "I was always an athlete. When I regained some of that strength, that was amazing."
She couldn't have done it without Shaw, her friend. Documentary director Morrow said Shaw became Garden's life coach. "Bridget is what you would call her ass-kicker. Heather would be overwhelmed and sick and Bridget would help her refocus her mind."
The improvements weren't enough for Garden. She wanted to be able to walk and play ball with her two sons. Part of her treatment was to keep using her legs. MS had caused a disconnect between her brain and her legs, she said. She had to will her legs to move. Morrow called it "neuromuscular re-education." Garden would repeat the same motions over and over, retraining the brain to make her legs move.
Most people wouldn't think of taking the time and money to spend seven weeks in Mexico. It was just one of many extraordinary moves she made. Even then, it was only in the last week she had her breakthrough.
It had been coming bit by bit. Shaw had been helping her walk into and out of the ocean, but less each day. At that stage, it was purely a matter of keeping her balance, not a matter of strength. She had built up her strength. The buoyant salt water, by keeping her from injury, allowed her to adopt a different posture, one that didn't fear falling.
Finally, she walked out of the ocean on her own, just like any other person on the beach. She had found her balance. She has not looked back since. It was excitement mixed with relief that she experienced, she said, not emotion and crying. She says she's not an emotional person. "Honestly, I cannot remember the words that came out of my mouth. I just remember being excited and smiling and laughing."
Garden is a reluctant poster child for alternative medicine, however. She only did the documentary because Morrow is a friend. That's the reason the story has come out now. Garden was first diagnosed with MS in 1991. She started alternative medicines in 1996. She has been symptom-free for almost 12 years now.
My biggest concern writing about Heather Garden's case was I might promote false hope. It isn't as though Morrow and Garden are hucksters selling elixir out of a caravan. There's no profit for them. But hope, like that contained in Garden's story, is a dangerous thing. Look at the hurt caused by the 'liberation therapy' controversy. People with MS have often tried alternative medicine, but most people haven't had the same outcome as Garden. I certainly don't want to start a mini "liberation therapy" frenzy.
It's important to know MS is at the top in terms of villainy among diseases. Its symptoms can rise, fall, change, disappear, come back, steadily worsen, suddenly improve, and no one knows why. The disease teases, taunts and tempts. It's the most psychotic ailment — a Dr. Jekyll and Mr. Hyde and all the Hollywood bad guys combined.
"MS is unpredictable. MS is nothing if not unpredictable," said Dr. Michael Cossoy, a neurologist at the MS Clinic at the Health Sciences Centre.
Cossoy has never seen Garden, but when told her story, he said MS activity can throw people not just curves but also change-ups. Cossoy said he has seen cases like Garden's, in which the disease comes on ferociously at first, but then the symptoms start to stabilize or retreat. "You don't have people where the disease just gets worse and worse and worse. It will slow down over time," he said.
Symptoms will go into remission for no apparent reason, he said. Patients often mistakenly conclude a certain treatment caused a remission when it had no real effect at all, he said.
"Even if treatment is useless, you see improvement," Cossoy said. He could not say this was the case with Garden but raised it as a possibility.
In one case known to the Manitoba MS Society, a person with MS had symptoms go into remission for 10 years, then return.
However, attitude is very important, Cossoy said. Things such as depression or obesity can definitely worsen symptoms of MS. People who change their lifestyle and live positively see marked improvement, he said.
Cossoy is considered one of the more open-minded neurologists treating MS. He understands people with MS often may want to try alternative medicines. He pointed out conventional treatment has become more holistic over time, adopting some practises from alternative medicine.
But people with MS should always let their physician know of any alternative treatments they want to try. The physician may, for example, know an alternative medicine has been proven ineffective. One touted alternative treatment, and one Garden employed, is ingesting evening primrose oil because it has the fatty acids used to make myelin. It's "a simple-minded thought" and doesn't work, said Cossoy. There is no shortage of food ingredients that help to make myelin in the human body, he said.
And while MS is regarded as incurable, it is important to point out some people do make almost full recoveries from it. Cossoy said about 15 per cent of people will make nearly complete recoveries, where they are left with only residual symptoms of MS. "The nature of the disease is that people can get better on their own or at least the symptoms can stabilize," he said.
But Garden was diagnosed with secondary progressive MS. Do those patients make that kind of recovery? No, said Cossoy. "That sounds too good to be true."
Perhaps her type of MS was misdiagnosed, he said. He added, however, there is still much to learn about the disease. "The answer is, we don't know everything. There may be things helpful for MS that we don't know about yet," Cossoy said.
Dr. Terry Wahls, a physician and clinical professor of medicine at the University of Iowa Carver College of Medicine, is aware of Garden's case and doesn't believe she was misdiagnosed.
Wahls has the same secondary progressive MS. Her condition worsened over a period of seven years under conventional medical treatment. By the end of seven years, she couldn't even sit up in a chair for 10 minutes. She was confined to a tilt-recline wheelchair.
Then Wahls, who has seen The Healing of Heather Garden, underwent a program with alternative medicines similar to Garden. "I went from wheelchair to an 18-mile bike ride with my family," she said.
"Why do you call it false hope?" she asked me. Autoimmune and other diseases are the result of "the hundreds of different genes you have and the interaction of genetics with your environment," she maintained. "We all have much control over the environmental factors that drive 70 to 90 per cent of diabetes, heart disease, high blood pressure, mental-health problems, autoimmune problems. It's time that we as society start paying attention.
"I'm continuing to improve," said Wahls. "I'm presuming it will take 10 years to replace all the myelin on my nerves. It takes about 10 years to replace what's been damaged, and I'm five years into it." There is more information on her website, terrywahls.com. She also has a book titled Minding My Mitochondria: How I overcame secondary progressive multiple sclerosis (MS).
It is worth noting detoxification and dietary supplements are being used to fight other diseases, too. For example, the prescribed treatment for Lyme disease, spread by black-legged ticks, is antibiotics but that has had mixed results. New York physician Dr. Richard Horowitz now treats Lyme disease by first detoxifying the body with dietary restrictions to starve the bacteria.
Then he uses dietary supplements to strengthen the body's ability to fight the disease.
Ellen Karr, client service co-ordinator with the Manitoba MS Society, has also seen The Healing of Heather Garden but is cautious with her comments.
"To me, it's not a movie about MS, really. It's an inspirational story about a person being challenged with a disease. To me, it's more of an inspirational story," she said.
"I think it's really important that people are inspired to take this positive approach for whatever is wrong with them."
The director herself cautioned she is not an expert on MS and her documentary is just one person's story. "Everyone is unique. There is no attempt for this to be a prescription for anyone else," she said.
Morrow, who worked for many years as an inner-city social worker and therapist in Winnipeg, learned of Garden's story through a mutual friend and felt it would make a great documentary. The problem was she had never made a film before. Morrow began her own odyssey to make the film eight years ago.
The film has been screened at Cinematheque and the Gas Station Theatre in Winnipeg. A DVD or Blu Ray can be purchased from McNally Robinson and the Winnipeg Film Group, or through direct contact with the filmmaker (http://thehealingofheathergarden.com), which can also arrange group screenings.
As for Garden, she simply says, "I don't have (MS) any more. People say, 'Oh, you have to have it because it never goes away.' All I know is, whatever it was, I don't have it anymore."
Garden, 49, continues with her healthy diet, regular exercise, plenty of rest and stressing the positive. She has another man in her life, her two sons have grown up, and one recently returned from university in the Maritimes to live with her in Brandon, where she now resides. Not only can she walk, but she can run and went on a four-hour bike ride earlier this year.
"It wasn't fun being disabled. It wasn't in my makeup. I was just a go-go-go-go kind of person," she said. She summed up her story this way: "It's about people realizing there are alternatives. It takes time, it takes tenacity, and it takes patience."
Bill Redekop has been covering rural issues since 2001.