The Hamilton Spectator
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| Barry Gray, the Hamilton Spectator |
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Eva Marsh has lived with MS for 35 years and has learned to deal with the disease. |
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| Barry Gray, the Hamilton Spectator |
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Eva Marsh recovered fully through exercise and yoga. |
Eva Marsh is an amazing woman with a remarkable story.
Throughout her life she has had episodes of multiple sclerosis that left her immobile from the neck down. Her speech has been slurred and her writing unrecognizable. She has had to crawl on her hands and knees to get around.
If you met the youthful-looking woman today, you would never know she suffered some of the worst symptoms of MS, a chronic progressive disease of the central nervous system characterized by loss of some of the protective myelin sheath surrounding certain nerve fibres. She moves around as well as any healthy woman in her mid-50s. That's because this determined and resilient woman decided to have MS her way.
Her story is about her recovery and how she brought her body back from the hellish changes that MS inflicted so she could lead a normal life. Her condition has been in arrest since 1991 and although it could strike at any time, she is not afraid because she knows she can recover again.
Her MS mantra is: Get moving. In the early 1970s when a severe episode left her paralysed, she amazed friends and her doctors by reclaiming her energy and recovering. How did she regain movement? She devised her own routine of exercises and yoga postures to improve her physical limitations. Some seven months later only a light limp remained in one of her feet.
She got used to the reactions from some who didn't believe she had MS, or said that she had the "mild" kind. Eva knew differently and so did the doctors who treated her. As for the "mild" kind she says, "Being immobile from the neck down three times was not mild."
Eva was diagnosed with MS when she was 22 and a young mother living in Hamilton. She had met her husband when they were both veterinarian students at the University of Guelph.
Student loans didn't exist then, so when they married he continued and she dropped out. In the mid 1960s, she began to experience tingling in her arms and legs and started to drag her right leg. Her doctor refused to send her to a specialist and suggested maybe she should see a psychiatrist.
When her right leg wouldn't move one morning, she went to see her obstetrician who was more concerned. He sent her to an internist who diagnosed MS which was confirmed by a neurologist in Toronto. She was shattered and even more so because her husband offered no support or the love she needed to be shown. At that point, one leg was paralysed, the other had no sensation and her eyes jerked to one side. She was told to get her affairs in order because she didn't have long to live. Her daughters were only one and two-years-old.
Eva has always been a fighter and survivor and considers herself fortunate that she had two little children to look after. She didn't stay in bed. "I literally crawled after them," she says, adding that crawling is beneficial for back and leg strength and right and left co-ordination. Then she made a decision. She was not going to accept there was nothing that could be done for her condition. She began by studying medical journals and she discovered there was regeneration of myelin in MS. That encouraged her.
Her husband moved the family to northern Alberta and there in the late '60s she had another episode that put her into the hospital. She faithfully kept up with her exercises but her marriage was in turmoil and by the summer of 1970 she and her daughters, four and five, were on a train headed back to Ontario. No one she left behind thought she would last very long. But typically, Eva sat forward facing her return and her new life with her back to the West.
Now Eva was a single mother in Hamilton. It was a struggle but she got some financial help from her husband and her father-in-law gave her a car. She started doing yoga and quickly found the benefits from meditation the gentle stretches.
"I became more confident that I could make a new life for myself and my children." On the bad days when she felt alone and helpless with no support except for a few good friends, she kept going out of spite. "No one thought I could survive but I was going to show them."
She had a few more episodes, but she recovered and got stronger each time. She stopped taking prescribed steroids because she found evidence there was long-term effects. She hasn't taken any drugs since 1974.
When a specialist wouldn't allow her physio-therapy because he thought it a waste of hospital resources, she did yoga in her hospital bed. After a particularly bad episode in November, 1972, and a two-day hospital stay, she dug in and did her own kind of physio while caring for her daughters.
She arm wrestled with them and learned to play the violin with them. She measured her progress by the amount of toothpaste she could get on her toothbrush. She massaged her ankles because she wanted to drive again. She was inspired to use her sewing machine figuring the pressure on the foot was a great way to practise gas pedal pressure. Soon she was back driving. And she kept learning. When McMaster medical school was opened in the late '60s, she found a way to do her continued research into MS in the school's medical library. And she never forgot what a researcher had written about how the damage in the nervous system quickly begins to repair itself after an MS episode. Research, she says, shows the more we move, the faster the repair.
She found support in the late neurologist, Dr. Dan Levy, and in her quest for more research, with Dr. Alan McComas, former professor of medicine, division of neurology at McMaster University Medical Centre.
Eva kept fighting. She started a journal about her experiences in 1970. In 1974 she was accepted as a student at McMaster University. A year later, with funding from vocational rehabilitation, she was on her way to earn degrees, first in physics in 1979 and then a masters in electrical engineering in 1981. Things got even better. She met Don Marsh on a blind date and eventually they married. That was 23 years ago. She published her book, Black Patent Shoes, Dancing with MS, in 1996. And soon the BBC sent a producer to interview her in her living room. When it aired in February 1997, there was a tremendous response, she says. It went on to air in South Africa, Australia and New Zealand. She was also interviewed on the CBC by the late Peter Gzowski.
Now today in her farmhouse she shares with her husband, near Copetown, Eva talks about her mission to share the knowledge she has about MS.
"I give no advice because I am not qualified. I share information and try to help people."
About eight years ago, she was at an informal meeting with various MS researchers at McMaster University Medical Centre to discuss possible funding for a research project on MS recovery.
When a doctor she won't name told her that recovery was impossible and bluntly told her she didn't have MS, Eva challenged him and offered to have an MRI (magnetic resonance imaging) to prove it. He agreed. "I had it but I never heard from anyone about the results. Finally when I tracked someone down, I was told that the MRI appeared to indicate that I was incapable of processing any sensory information because of damage in critical areas of the brain."
She says there is research information that supports recovery from the damage of MS. And now she is finding she is making some headway with the information she has been sharing for 30 years.
More people with MS, she says, are being encouraged to stay active by their doctors and their families.
"There are signs that changes are being made. I recently got a newsletter from the MS society in British Columbia describing interviews with MS patients who recovered their health from MS damage by using their arms and legs more and taking control of management of their own lives There are 12 stories of people who took charge of their lives and recovered. Some are now walking after years in wheelchairs."
Dr. McComas, who took early retirement seven years ago, says there is no doubt Eva has MS and that she has periods when she has severe episodes and makes truly remarkable recoveries.
"I can also testify to the perseverance and the intensity of her research," he says.
"She is a unique person because she makes these amazing recoveries and she is researching the condition and the effect of the mind on the body and she is doing all this herself without any research funding," says Dr. McComas.
What she has done, he says, is to draw attention to the way the mind and will can promote and accelerate recovery.
"One has to be open minded. The Brain-Body Institute at St. Joseph's (Healthcare) is looking at this very thing, how the mind can influence the responses of the body to illness."
Eva chose to make a new life for herself and she is enjoying every moment. "I have every intention of living to be a very old lady."
Her book ($19.95) is going into its third printing and is available at McMaster University book store and by writing to her address at Sideroad Press, Box 40, Copetown, L0R 1J0. She is writing a second book on letters and comments from readers that she expects to be finished at the end of the year.
Eva is available to speak to groups. Her Web site is http://www.evamarsh.net/ her e-mail is evamarsh@execulink.com or call 905-627-1017.
sbourret@thespec.com or 905-526-3305.
Eva Marsh website
