Friday, April 8, 2011

Wake up Canada! Your indifference is destroying the quality of life for some of your best citizens!

This is in response to Canada's continuing failure to address their citizens with CCSVI, irrespective of what other conditions they may have. Once again, we have a crisis for one of our own who needs treatment , yet is refused solely on his past diagnosis of Multiple Sclerosis.
Many of us have been so over stimulated by the constant barrage of movies, documentaries, and slanted news coverage of abhorrent behavior that we dismiss it when it becomes personal. PwMS are commonly told that many of their complaints or symptoms are in their heads. Most of us can relate to that. In addition, the hypoxia we suffer can cause paranoia, depression and other psychological issues. These are transient situations but they brand us sometimes as being unstable. Since we are aware of this, we may over compensate by becoming overly trusting and dismissive of much of the negative in other people. Most children, especially in my generation were taught to respect authority and defer to professionals, particularly physicians. It is in our nature to be supportive of people in situations in which we can relate. One of the reasons that social networking for common illnesses has been so successful is because we can relate to their pain, limitations and despair. How many times have we heard someone say that no one can understand Multiple Sclerosis unless they have the condition? You may have said so or at least had those thoughts yourself.

What happened when you were first diagnosed with MS? Typically you would have searched for every scrap of information about it. With the advent of the Internet the amount of reading material was overwhelming. For the newly diagnosed there
is a trilogy of hope they simply cannot resist. The number one weapon is the neurologist. We hung on his or her every word as a thirsty man in a desert who has found an oasis. Enter the Multiple Sclerosis Societies. Smiling and cheerful with a plethora of information and offers of assistance we quickly added them to our arsenal of weapons against this MonSter. Lastly, our salvation came in a handsomely designed box or brochure with pictures of people playing Frisbee on the beach or flying a kite. Along with an application for your drug of choice was information written in microscopic print with medical verbiage and characters that the average individual could not decipher. Avonex, Rebif, betaseron, Copaxone, Tysabri ... Exotic sounding medications to protect us from the damage that MS was sure to bring. Never mind that the cost was exorbitant. You get what you pay for, right? The FDA would never allow people to take these injections and fork over the price of a house every year unless they were miraculous life saving drugs. They are our ever watchful eye to protect us and shield us from scams, snake oil treatments and fraudulent entrepreneurs.

After decades of building fortunes on the ever increasing numbers of PwMS, a theory that predates the autoimmune sham by maybe 200 years rears its ugly head. An obscure vascular surgeon from Italy, himself the victim of a neurological condition rises above the radar and a beacon of light is seen around the world and sends the world of MS into a frenzy. Thousands of people with varying degrees of disability, disillusioned by the drugs and treatments that have failed every promise decide to reach out for yet another ray of hope. The premise of the vascular connection to Multiple Sclerosis was so foreign to the accepted causal factors that even our own were largely scoffed at as just another in a long line of wasteful treatments and dubious assertions. In the beginning, we couldn't even convince our own friends that Chronic Cerebro-Spinal Venous Insufficiency could be at the root of our condition. The "Trusted Trilogy" of all MS patients worked diligently to feed their doubts and fears. They have been largely successful; but perhaps not enough. After all, desperate ,cognitively impaired, and compliant patients were beginning to network , research and support each other in an attempt to secure the angioplasty or venoplasty procedure. Some began to believe that this might give them the thus far elusive second chance they had been seeking. Were we not promised by our neuros and "support" organizations that a "cure" was right around the corner? If only we could heighten awareness of our plight by massive fund raising, it would just be a matter of time and our dreams and hard work would come to fruition.

Well the fairy tale is over folks and we know we have been lied to and duped for decades. The real purpose was never to treat us with viable options for a better quality of life. It was all about money, career opportunities and building reputations and fortunes. We aren't talking about small accomplishments here. Neurologists by the very nature of their reputations are accustomed to residing at the top of the food chain. They are not taking this well as their impeccable reputations, medical practices and lifetime of dedication to the poor and pathetic people unfortunate enough to own this disease are at stake. The only way to assure the $150,000.00 + that it takes to care for one MS patient per year is not going to disappear is to stop the spread of the very notion of CCSVI, which for the opposition has become like a cancer they must irradiate. They will not be squeamish in their pursuit of this goal. If you are scared by this truth, you are wise. It is very real. If what I have gone through since my decision to remain as an advocate for myself and others is any example, there is no doubt in my mind, they will do whatever it takes to make all of this disappear and be filed away in the "phew that was close" file. We lose one life everyday to the complications of MS. That is an estimate for Canada alone. Remember the cute little button that said, "MS may not kill me, but it can make me wish I was dead"? I used to wear one, until I nearly died in hospital myself. Without the procedure I would not be here to write this, and if by some miracle I were still alive, I still would have been unable to complete the first paragraph of this post. I personally have nothing to lose since I have considered myself living on borrowed time for about two years. Every day is a gift. We can't let them take any more of these gifts away from us. They are our rights and not theirs to play with as they see fit.
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