W e can’t afford to make the same mistakes some neurologists and government leaders fell into. They underestimated many of our strengths and attributes. Their first shortsightedness included key points. General assumptions about our determination and naiveté would make this a short lived and easily dismissed issue. They thought we were:
1.Few in number
2.Desperate
3.Submissive
4.Easily impacted
5.Cognitively impaired
6.Unable to complete tasks
7.Single focused
8.Ignorant of medical protocol
9.Poor social skills
10.inept
Each day brings a new revelation concerning delay tactics and distractions that are designed to make us reconsider our determination to be treated for CCSVI. Sooner or later it is assumed that the internet frenzy will run its course and come to a dead end. One day we hear reports of a new study or some little token gesture to placate us into thinking that real progress is being made. There actually is truth in the claim that progress is ongoing but not with the aid or blessings of most neurologists and MS societies. Some of us want to keep a cool head and discourage debate with our detractors.That's commendable but not very effective. I don't think we will have a group hug anytime in the near future. We need to focus on our sure and steady course to keep sight of our goal that everyone who desires to be tested and treated will have that opportunity without being taken advantage of anymore than we already have been.
This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
1 comment:
I wish you luck. I can't imagine that $13,000 is considered inexpensive for a treatment that should be in the $1,500 to $2,000 range. I realize that until the treatment becomes commonplace that this may be the norm. It just is not ethical.I am thanful to the doctors who have taken this challenge upon themselves, but they are as susceptible to greed as any other specialty.
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