#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender<\/p>\n\n\n
About a year ago, I started operating under a hypothesis that stood my treatment plan on its head. \u00a0My driving thought was that the pain and disability was caused by my muscles being in spasm constantly. \u00a0Thus, they could never heal. \u00a0My hypotheses was if I could get my muscles to heal at an accelerated pace, then I could avoid extreme pain and maintain a bit of function.<\/p>\n
Signatory Events<\/strong><\/p>\n The initial evidence that lead me to this thought was two time periods. \u00a0The first was immediately following the implantation of the pump. \u00a0There was almost no medication flowing, but I was doing incredible. \u00a0For about two weeks. \u00a0Then things went really bad. \u00a0The rapid escalation of pain and the return of the disability encouraged my medical team and I to rapidly increase the amount of Baclofen injected into the base of my spine.<\/p>\n This practice led to the second time period I felt great –the period immediately following my collapse and time spent in the hospital from my potential hasty retreat from the land of the living. \u00a0Again for about two weeks following my collapse, my muscles felt fairly good. \u00a0This led to our internal joke that if I could just stop breathing for a while every six months, I’d be fine. — hey, you look for humor where you can. When you see the bright light and come back to tell me about it, then you can criticize my jokes. \u00a0As one could imagine, this was a very stressful time. \u00a0There were many things that happened at the hospital in those following days. \u00a0I am likely to write more definitive articles on that time period, as my hands seem to have decided to start working again (thanks Myetin!).<\/p>\n Development of the hypothesis<\/strong><\/p>\n The two time periods remained an enigma until we developed the hypothesis that addressed the thought that muscles never had a chance to heal, that there were “micro-spasms” occurring around the clock. \u00a0The constant spasms continuously injur the muscle tissue. \u00a0The damage was not severe, but it did prevent the muscles from healing. \u00a0The next round of considerable spasms would strike, further injuring the muscles. \u00a0The damaged muscles were then more prone to extreme spasms.<\/p>\n I needed to figure out how to give them a chance to heal at an accelerated pace, and so method of squashing the micro-spasms. \u00a0The cycle needed to be broken, or affected in some way. \u00a0With this idea, I went to my neurologist. \u00a0It was his thought that if I were correct, then as time progressed, things would degrade for me until I would have another collapse or figured out a “reset” of the muscles to give them time to relax.<\/p>\n First Attempt: \u00a0The Cocktail<\/strong><\/p>\n Literally, it was almost a cocktail. \u00a0I in the midst of a treacherous cycle of spasms. \u00a0I was in my fourth day and this particular event had entered its 18th hour. \u00a0I was exhausted, in pain reaching the upper levels of the stratosphere and all I could do is put my head in my wife’s lap and cry. \u00a0She had an idea: alcohol is a sedative, her husband loves Tequila. \u00a0It was either a double shot of Tequila or a trip to the emergency room. \u00a0If I reacted badly to the Tequila, I would end up at the ER. \u00a0Same end, different means. \u00a0At least with the Tequila, we would have exhausted everything we knew.<\/p>\n Fifteen minutes after consumption, the spasms stopped. \u00a0About thirty minutes into the treatment, I grew tired. I slept for four hours and was a knew person when I woke up. \u00a0We broke the cycle!<\/p>\n My neurologist mimicked the affect of the Tequila with medications so I didn’t have to worry about the potential deadly side-effects of alcohol.<\/p>\n Second Attempt: The Abort! Protocol<\/strong><\/p>\n Yes, this works so well, my wife and I gave it a name. \u00a0Part of the credit for development can be attributed to one of my wife’s former coworkers. \u00a0We continued to look for a method to heal the muscles. \u00a0I was finally able to align the damage to my muscles with the damage a power-lifter does to his\/her muscles. \u00a0My wife and I, and pretty much everyone, began looking for methods of rapid-healing muscles. \u00a0My wife’s former coworker suggested power-lifting drinks from a local nutritional supplement store. \u00a0We gathered the ingredients and I began to see my muscle function return slightly. \u00a0The pain, over the span of a few weeks, was subsiding.<\/p>\n Research was done on the use of BCAA and protein drinks. \u00a0I found an excellent article published in a power-lifting magazine. \u00a0With a few modifications, the Abort! Protocol was born.<\/p>\n Success: The Abort! Method implemented<\/strong><\/p>\n I now had a sustainable method of stopping spasms and healing the muscles. \u00a0As it turned out, the BCAA will stop the strongest of spasms. \u00a0However, it doesn’t address the small ones.<\/p>\n Botox injections into the Adductors<\/strong><\/p>\n Over time, I blew out my adductors bilaterally. \u00a0Adductors are the long muscles originating in your grown and attaching at various locations along the femur. \u00a0The treatment was Botox injections in my inner thighs to squelch the buildup of extreme pain.<\/p>\n I love Botox now. \u00a0Botox, and the Abort! Protocol are my saviors.<\/p>\n Recovery and Small, Persistent Spasms<\/strong><\/p>\n My pain level, now dropping, coupled with the “awakening” of nerves by Myetin, allows my body to feel things I haven’t felt in a long time. \u00a0What I feel when I lay flat and am relaxed are minor contortions and micro-spasms in my muscles…all the time. \u00a0They do not stop.<\/p>\n What I hypothesized in the very beginning, when I didn’t think a way existed to prove “micro-spasms,” my body and logic told me they had to exist. \u00a0We, under the distant supervision of my neurologist, developed a method of stifling the greatest of pains. \u00a0And, it seems to be working.<\/p>\n I still have bad days. \u00a0When my body wants to spasm. \u00a0It shall. \u00a0I can affect a change in the spasm pattern, but the locking of the muscles don’t seem to obey anything. \u00a0Not even the prescriptions medications. \u00a0The resulting extreme tightness leaves me a paraplegic and in extreme pain. \u00a0However, we are working on that.<\/p>\n Credit Where Credit is Due<\/strong><\/p>\n I find it comforting that we are learning to manage the disorder. \u00a0My quality of life is improving. \u00a0That is a really good deal.\u00a0 Moreover, I must explain the use of the pronoun “we.”\u00a0 “We” are a number of people.\u00a0 I hope you, the reader, picked out that there was no one person that developed this path.\u00a0 There are a number of people involved.\u00a0 It was only by the communal exchange of ideas among these people that I have be able to get this far. In Christ,<\/p>\n Jay C. “Jazzy_J” Theriot<\/p>\n\n\n
I can’t thank the individuals enough.\u00a0 Some, I have not and will never meet.\u00a0 It is by faith, these people were sent to me so they could contribute to my medical successes.<\/p>\n