#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender
About a year ago, I started operating under a hypothesis that stood my treatment plan on its head. My driving thought was that the pain and disability was caused by my muscles being in spasm constantly. Thus, they could never heal. My 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.
The initial evidence that lead me to this thought was two time periods. The first was immediately following the implantation of the pump. There was almost no medication flowing, but I was doing incredible. For about two weeks. Then things went really bad. The 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.
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. Again for about two weeks following my collapse, my muscles felt fairly good. This 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. As one could imagine, this was a very stressful time. There were many things that happened at the hospital in those following days. I am likely to write more definitive articles on that time period, as my hands seem to have decided to start working again (thanks Myetin!).
Development of the hypothesis
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. The constant spasms continuously injur the muscle tissue. The damage was not severe, but it did prevent the muscles from healing. The next round of considerable spasms would strike, further injuring the muscles. The damaged muscles were then more prone to extreme spasms.
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. The cycle needed to be broken, or affected in some way. With this idea, I went to my neurologist. It 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.
First Attempt: The Cocktail
Literally, it was almost a cocktail. I in the midst of a treacherous cycle of spasms. I was in my fourth day and this particular event had entered its 18th hour. I 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. She had an idea: alcohol is a sedative, her husband loves Tequila. It was either a double shot of Tequila or a trip to the emergency room. If I reacted badly to the Tequila, I would end up at the ER. Same end, different means. At least with the Tequila, we would have exhausted everything we knew.
Fifteen minutes after consumption, the spasms stopped. About thirty minutes into the treatment, I grew tired. I slept for four hours and was a knew person when I woke up. We broke the cycle!
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.
Second Attempt: The Abort! Protocol
Yes, this works so well, my wife and I gave it a name. Part of the credit for development can be attributed to one of my wife’s former coworkers. We continued to look for a method to heal the muscles. I was finally able to align the damage to my muscles with the damage a power-lifter does to his/her muscles. My wife and I, and pretty much everyone, began looking for methods of rapid-healing muscles. My wife’s former coworker suggested power-lifting drinks from a local nutritional supplement store. We gathered the ingredients and I began to see my muscle function return slightly. The pain, over the span of a few weeks, was subsiding.
Research was done on the use of BCAA and protein drinks. I found an excellent article published in a power-lifting magazine. With a few modifications, the Abort! Protocol was born.
Success: The Abort! Method implemented
I now had a sustainable method of stopping spasms and healing the muscles. As it turned out, the BCAA will stop the strongest of spasms. However, it doesn’t address the small ones.
Botox injections into the Adductors
Over time, I blew out my adductors bilaterally. Adductors are the long muscles originating in your grown and attaching at various locations along the femur. The treatment was Botox injections in my inner thighs to squelch the buildup of extreme pain.
I love Botox now. Botox, and the Abort! Protocol are my saviors.
Recovery and Small, Persistent Spasms
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. What I feel when I lay flat and am relaxed are minor contortions and micro-spasms in my muscles…all the time. They do not stop.
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. We, under the distant supervision of my neurologist, developed a method of stifling the greatest of pains. And, it seems to be working.
I still have bad days. When my body wants to spasm. It shall. I can affect a change in the spasm pattern, but the locking of the muscles don’t seem to obey anything. Not even the prescriptions medications. The resulting extreme tightness leaves me a paraplegic and in extreme pain. However, we are working on that.
Credit Where Credit is Due
I find it comforting that we are learning to manage the disorder. My quality of life is improving. That is a really good deal. Moreover, I must explain the use of the pronoun “we.” “We” are a number of people. I hope you, the reader, picked out that there was no one person that developed this path. There are a number of people involved. It was only by the communal exchange of ideas among these people that I have be able to get this far.
I can’t thank the individuals enough. Some, I have not and will never meet. It is by faith, these people were sent to me so they could contribute to my medical successes.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.
***Email subscriptions available by filling out the “Email Subscriptions” block on the upper right of this page.