Saturday, September 11, 2010

Time is on the side of the opposition!

September 9, 2010

There are many sides to every story. Just because something is in print, it doesn't make the assertions true. Like many of you, I have read and heard a great deal concerning CCSVI. A few weeks ago I left the website I had been a member of for a couple of years. I realized that I was spending 6 to 8 hours a day on the internet. Most of the time I wasn't learning anything new, I was rewriting the same information repeatedly. I decided to take a look around to see who else is lurking around MS websites. I have given much thought to the organizations and groups who stand solidly against the angioplasty procedure that gave me back my life. In order to judge fairly, I took some time from all this fun and diversion to look at all possible sides of the CCSVI issue in order to justify my own conclusions. It has been an enigma to me that all the people and organizations that have a vested interest would not want the best care to be made available to people with Multiple Sclerosis. Years ago, talented and capable individuals worked incessantly to help provide physical , medical and emotional support for the MS community. Out of their concern was born the various Multiple Sclerosis Societies.

The diagnosis of MS was devastating. I knew very little about this disease. I vaguely remembered that I had a cousin with it, but we live apart and her struggles with disabilities didn’t touch me directly. Not a person to wait for someone to enlighten me I searched everywhere for information that might tell me what sort of life I could expect . My neurologist didn’t have the answers to the questions I had running through my mind. She mentioned the National Multiple Sclerosis Society, so I started there. The lending library gave me a great outlet for all of my research. The website was easy to navigate. Once a person avails themselves of the offerings they provide, they are soon given ample opportunity to pay for services rendered. Every magazine I received or book I borrowed was accompanied by a self addressed envelope and a request to donate money to help cover the cost of their generosity. In the beginning I became involved with bike ride fundraisers. Later an invitation to become a resource locator came in the mail. It seemed like a wonderful idea to have ready access to local resources for PwMS. Before long I researched and gathered names and addresses for groups, organizations and individuals who collectively had a fairly large inventory of new and gently used equipment like wheelchairs, hospital beds, bathroom equipment, lifts, ramps, etc. In fact there was no lack of goodies in my community for people with disabilities. Most of which was sitting in storage closets. I felt good about my score and sent my list to the NMSS as requested. About six months later, the church I belong to had the need for a hospital bed for a member who had orthopedic surgery. I dug through my file box and called a person from my NMSS list and took the chance there might be one available. When we went to pick one up, the storage owner said, “you are the first of any of those Multiple Sclerosis people to come here to get anything.” So much for my “resource locator “ efforts.

It would be disingenuous for me to say that the MS societies are only filled with greedy people who have ulterior motives for their jobs. I have been very curious about the private thoughts of people at the NMSS. What we see and read is only a portion of the story, regardless of the subject matter. The majority of people who seek service oriented jobs start their careers with the best intentions, I assume. Behind that "Fortress of Attitude" there are many very pleasant and goal driven individuals. Some of them are embarassed by the fool hardy decisions of their organizations. One blunt young man told me that he wasn't going to walk out on his job over politics, "Everybody wants a hero, as long as it doesn't cost anything." Well said, I think.

Anyone with MS would be happy to share their thrilling discovery of neurology. My answer to their resistance of the CCSVI theory has very little to do with conviction, or money. MS takes only a portion of their time and practice. Some don't work with us at all. My first appointment with one neuro was a big let down. He had an assistant who took care of all his MS patients because his passion was sleep disorders. They won't go hungry for lack of patients even if all of us fired ours. Their reticence has more to do with peer pressure and embarrassment. Although Multiple Sclerosis has never been shown definitively to be an autoimmune disorder, it remains the most popular theory. It has been treated with drugs shown to be of little benefit. MS by it's slowly progressive nature gives credence to almost any postulation or treatment. It takes so long to prove the efficacy,of any treatment that it is veritably immune to criticism. (Pun intended.) In other words, it is what they were taught. That's their story and they're stickin' to it! They have been led down the garden path primarily by the next group of detractors.

Pharmaceutical companies are a breed apart from the rest. They will be the ones losing a lifetime committment of around $30,000 from each patient who gives them the old heave ho! Drug reps are trained well in their selling techniques.They know how to misrepresent the negative side effects of their wares. Out right lies aren't necessary. They need only leave their samples and the most eye popping advertisements in the industry. When my neurologist wanted me to began Tysbari, his assistant gave me a canvas bag with handles and a pocket on the front with the cute little Tsybari Logo stamped on it. I told her (and him) that I had absolutely no interest in that treatment, but the goodies were tempting! Inside the bag was a box with pictures of dancing women on it. Maybe they were just skipping, it was hard to tell. There was a DVD and a book about Multiple Sclerosis approximately the same size as the King James version of the Bible. I took it home and stuck it in a closet. I knew I should have left it home. The Avonex people were still calling me ritually every month. Now I had the Tysbari people breathing down my neck!

As worried as they might be about their jobs, fund raising and bottom line, we are the ones who stand to lose the most. Each day they delay their studies and treatment, PwMS are continuing to decline. We have our place and they are determined to keep us in it.
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