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Living Happily with MS by Steve Garvie

I have Multiple Sclerosis. I have a brace on my left leg and I walk with a cane most of the time. On longer walks, I use a walker, and when I take Magoo, my golden lab for a walk, I use a taxpayer-provided electric wheelchair. I love the fact that I have a life almost like anyone else. I feel normal and I love that. My girlfriend tells me I’m semi-normal, which I take as a sign of normalcy. I’m very, very happy to be this normal.

On the operating table, even before they had taken the wire out of my body I felt something was different. I tried to raise the arm that had been useless for five years – and I could and did. I reached over and shook the nurse’s hand with my previously lifeless left hand. I bent my leg as I had not been able to do for years – all while still lying on the operating table. Did that make me happy? Do you have to ask?

Twice in my life, I’ve been anything but normal. Until January 29, 2010, I was almost a basket case. I could not stand, let alone walk. My bladder did not work at all. I had such brain fog that I could not think and I certainly could not hold any positive thoughts in my head. The fatigue was ever-present and, by itself, was enough to be debilitating even without all the other symptoms.

Eighteen months later, my veins had closed up again and I was once again in terrible shape. This time I knew what to do. With the procedure banned in Canada, I, like thousands of other Canadians, became a medical refugee and went to the USA for this simple, effective procedure. After the operation, I was back to my new normal and even better self because with improved diagnostics they found another point of stenosis and treated that too.

With what we knew of Multiple Sclerosis then, I did not hold out hope of ever getting better. I thought I might live in an ever-worsening condition for up to five more years, but I had no desire to do that. The suicide rate among people with MS is seven times the average, and I know why – from firsthand experience. I moved into government housing because I was completely incapable of looking after myself. I was given an electric wheelchair to use for the remainder of what was expected to be a short life. I got decent care but I was aware that I was in a dead end facility from which no one comes out alive. It was a very, very low point, and I was sure that I would never be happy – or anything close – ever again. Now we know that most people with MS have blocked veins that affect blood flow in the brain: usually one or two jugular veins, and often the azygos vein as well. The condition is called CCSVI for Chronic Cerebral Spinal Vascular Insufficiency and is found in significant numbers of people with Multiple Sclerosis, Parkinson’s, Alzheimer’s, Chronic Fatigue Syndrome and Autism. If you have CCSVI the blood does not drain properly from your brain, and sometimes the blood even flows in the wrong direction. We don’t yet know exactly what this does to your brain, but it’s not good. The treatment is simple and safe and almost identical to the routine angioplasties that are done daily in hospitals across Canada. In fact, it’s correctly called veinoplasty, because it’s done on a vein, but the principle is the same. They go in with a wire that has a little balloon on the end of it, find where my vein is stenosed (narrowed) and inflate the balloon to open the vein and allow the blood to flow as it should. I was lucky to get this treatment before the procedure was banned in Canada.

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Now, I’m back at work, I can bathe myself and I can function as a man and have a girlfriend who considers me half-normal. That’s something to celebrate. Actually, I have two jobs. In addition to selling real estate as I’ve done for 30 years, I started a foundation that funds this treatment for other people. So far, we’ve supported 50 people so they can leave Canada to get the treatment. Not all results were as dramatic as mine were, but all were positive. I’m not happy that I have MS, but I’m happy that I’m in as good a condition as I am. I’m really not happy that we can’t have this simple, safe procedure done in Canada, but I’m happy that there are generous people who are willing to help others get it done even if it means going outside our borders. I am living my life, I’ve met wonderful people in the proCCSVI movement. I’m working and I’m making a difference for the better. I have MS, I walk with a cane and have it on good authority that I’m only semi-normal. I’m a very happy guy.

Steve Garvie is president of the CCSVI Foundation of Canada www.ccsvifoundationcanada.org and a member of the CCSVI Coalition www.ccsvicoalition.org

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