that first night in the hospital was interesting yet scary for me. one of the people that I had worked there with years ago was going over my history and we were talking about TM,well i was doing more listening because i just didnt understand what had happened. she came back in with this report in her hand,,it was from the NINDS website about TM.
that was the beginning of many hours of looking here and there studying about different things to do with the CNS and seen a couple of symposiums about neurological disroders, what was going on in my nervous system as far as signals getting jumbled and the brain confused causing symptoms and looking for the right signal answer back that just was jumbled. Some of the Dr's i read about made mention that trying to find the right recipe to help a patient wasnt the same with every patient and what works today just may not work tomorrow. For me the mental strain of trial and error just does not compute and now that I have zero insurance I cannot afford to play the game anyway. with all the meds I take,so far laughter has been the best medicine. not looking for advice nor do I seek sympathy or empathy just passing time. and a little gas ;) ________________________________ From: Akua <[email protected]> To: Ryota Nishino <[email protected]>; [email protected] Sent: Thursday, December 15, 2011 9:43 PM Subject: Re: [TMIC] How to 'educate' medical professionals about TM and a few related questions Re: [TMIC] How to 'educate' medical professionals about TM While I lay in the local hospital, post diagnosis, but with a small committee of doctors in disagreement over what to do. yes, they included a neurosurgeon consult -- as if cutting me open would restore my ability to walk. I was in incredibly searing pain; only paralysis itself kept me from flipping off the bed. One doctor told me that if what happened to me had happened to him, he would want to kill himself. He asked me if I wanted drugs for my mood because he had read that depression was attendant to TM. I had a mantra for those decades-long weeks: I wanted a laptop, not drugs. If they procured a laptop for me, I could read, communicate, work and my mood would improve. No I wasn't depressed, I told him and a laptop would be cheaper than the psycho-meds. This conversation or variants of it was repeated several times. There was a patient help group in the hospital and they brought me a phone book and I found a (bless them bless them) rent to own firm, that generously brought the laptop i rented to me in the hospital and kindly picked it up when I was being moved to another hospital. They saved my life, because I was able to tell my friends across the country and world that I was knocked down and paralyzed, and they came to my rescue. With the laptop by my hospital bed, I was able to look up things for the doctors to consider, I was able to critique my treatment. I soon bought the laptop that I write from today -- but I needed one to get one because at home I had a desktop, and I had been carried from my house by stretcher (and was unable to return for 2.5 years, but that's another story). I'm wandering a bit but to underscore my points !. Citing other medical advice that was congruent with my beliefs helped me manage my care and persuade my doctors 2. Stand firm in your truth --- we each need what we need. There is a psychological affect to this condition. 3. It's annoying and tiring , but you have to know more than your doctors. If I had a million bucks, I would be mobile, because I could hire the help I need to implement restorative therapies. Since I'm poor, it's about wheedle,plead, present, persuade. 4. TM has laid waste to my life. I sit in my wheelchair amidst the ruins, trying not to tumble on to the shards below, because if I do, I can't even crawl over them. --
