30 Days of MSA Awareness. 9. For many years doctors who were stumped by my many varied symptoms suggested that at least in part it was psychological, so in frustration I found myself a shrink. He was in my opinion, brilliant, intuitive, and crucial in my fight to get a diagnosis pinned down. A lot had come to depend on getting one, namely status as disabled with little to no chance of recovery which would mean a pension albeit a very small one. Of course none of us expect to get sidelined in their early forties. I had imagined being active well into my nineties and retiring was never a consideration. I had assumed after the kids were on their own ai could turn to building that retirement fund. It didnt happen that way, and I needed every dime. At the point when finally I received the diagnosis I had already needed to sell of anything that had any value at all, and the kids and I shared a small basement apartment from which I was about to be evicted because the house was sold. The final word, a second diagnosis came from a neurology clinic at UBC, my shrink must have lost the coin toss, a copy of the report had gone to my family physician as well. He was noticeably uncomfortable. His clumsy preamble was, it isnt good. Looking at his unease I made an equally clumsy attempt at a joke. I asked if it was MS, to which he said, no worse than that. Simply he just said It is Shy-Drager, as I thought. He must genuinely have wanted to be wrong. The only words I could utter were what do I do now? To which he replied equally simply Live carefully. In two words all dreams and hopes for the future, returning to dance, travelling, a few years of overseas volunteer work, all of it evaporated with two words Live carefully. Not something I was good at and not something I wanted to be good at. I liked my little adventures, doing things because I wanted to, freedom to come and go as I wanted. That day my diagnosis which I can necessarily sought turned into my own personal sword of Damocles imminent and ever-present peril. What luck to have something no-one had ever heard of, something which had no well funded association like the better known diseases. I contacted both the MS and Parkinsons associations and both had no knowledge of the disease and they did not know of a support group. In a final irony I outlived my shrink who died about four years later. His cause of death were complications following a fall, the result of an episode a low blood pressure. The same doctor who tested me for postural hypo-tension in his office, died as result of just that. Not my family doctor nor the first few neurologists I had seen thought to test me for that, all of them probably convinced it had to do with being female, middle aged and having her marriage break up. It took a shrink to find enough evidence to send me back to neurologists with some backup. to anyone still going through the diagnostics, I suggest getting shrink as a good way to go, it gets the monkey off your back. --more: https://facebook/notes/aletta-mes/30-days-of-msa-awareness/10152235479847179
Posted on: Mon, 10 Mar 2014 10:34:17 +0000
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