Posted on August 9, 2018
Soft Claim of Victory; I think we have a method
#KennedysDisease #SBMA #ExtremeSpasticity
I believe that I will softly claim a sort of victory. I’m going to do this softly so no one hears, as every time I say I am doing well, my body proves me otherwise.
I have been having sequences of spasms that occur over four days. Four seems to be the operative number. Each cycle consist of three phases: 1) Active Spasms, 2) Fatigue recovery 3) waiting. The first two phases last four hours each.
My body will transition from waiting to full-fledged spasms in 25 minutes. The transition has become very abrupt. Taking both Lortab and Zanaflex together at the initial onset of symptoms appears to have the most beneficial affect. My hypothesis is the body will ramp up faster than the meds can gain effectiveness. Once the body is fully ramped up, the meds can’t surpass the body’s desire or strength to damage itself.
During the “Active Spasm” phase, I generally isolate myself and get as comfortable as I can. I have a ton of pillows on my bed and a few stuffed penguins to make me happy. During this time, my dogs may or may not be with me, depending on the veracity of the spasms. Occasionally, just the gentle-caring touch of my wife’s finger on my skin will cause intense pain. Having a pup that only desires to snuggle me when I’m at that level is not a good deal. I try to sleep, but it is usually useless. If I do manage to get to sleep, it is very troubled, with strange dreams… that is, until I get brutally awoke by a massive spasm.
It is interesting to note that once awake, regardless if I was awoken by spasms, I can feel the initial damage caused by the contortions of my muscles. The spasms may have ended, but the damage is evident. Drinking a BCAA during this phase is beneficial in that it effects a significant reduction in muscle pain.
Fatigue recovery is just that. Sleep, gracious sleep. After the first phase, my mind, as well as my body is gone. I generally sleep about four hours…like the dead. I generally wake up confused. It takes a while for me to remember what day it is and the activities that I was doing immediately prior to the event. And then, I get out of bed, and realize….ugh. I realize how much damage my neurological system has inflicted on my skeletal muscles. Over the next few days, bruises my appear as some of the muscle fibers tear and release blood. My most dramatic bruise was not only a target bruise, but was accentuated by a dark squiggly line of blood. I can only imagine that I tore the underlying muscle. I know it hurt like I did.
During the waiting phase, I ingest as much protein as I can. Super-loading my body with protein (hopefully) gives the muscles what they need to repair. The goal is to get the muscles as healthy as they can be before the body transitions back to phase one. I generally have about 13 to 18 hours before the next event takes place. We have added an additional supplements to this phase: electrolyte-infused drinks. I have found that drinking cheap Gatorade-inspired drinks in at 1:2 drink-to-water ratio helps reduce the amount of cramping during this phase (thanks to one of my friends for educating me on this ratio).
Rest, and healing are the focus during this phase. Depending on the damage inflicted, It is common for me to use a wheel chair at this point.
Finally, after four days, the ordeal is over. I continue to drink protein and electrolyte drinks, albeit it at a slower rate. During this time period, I am at my most functional level. I can drive (about 15 minutes), write, and do other minor things. Lifting things over ten pounds seems to have faded from my list of abilities. I can, but the effort extolls a high price in muscle damage. I have knotted muscles from rapidly lifting a full gallon of milk.
I have found that my next quest is to find an effective treatment for inflamed muscles. During the period between cycles, aside from sprained, pulled or torn muscles, they are considerably inflamed. I am looking at dietary supplements that I can use to decrease the inflammation. A short talk with my guru gives basically, three cups of a high-quality chai tea, coupled with turmeric and avoidance of inflammatory foods may considerably help. I love chai. I take turmeric daily. I’m not currently avoiding the foods, but I am beginning. This is the next quest.
The victory is in the knowledge that we have found a treatment plan that is working. Let me remind you, that there are a lot of other medications that I ingest on a daily basis. The chemicals mentioned in this article are only the ones that I take special to the event. Without my base of medications, I would not be able to survive. Some meds sedate the sensory abilities of my nerves. Some meds sedate the ability of my nerves to contort my muscles, and the list goes one. I don’t have a current count.
The victory is the routine seems to be working. My good days are getting better. Unfortunately, I may only have one day before the next cycle starts. I did have one six-day run of good days last month. I went crazy. I had lots of fun doing things that I haven’t done in a while. With the knowledge that we have built, I know, I have faith that we can achieve that again.
The victory is we have lowered the overall aspects of the disease to where the steps we are taking are having affects. We have yet to address the chronic stage, that is, stopping the spasms from ever occurring. There are meds that I’m in line for that may begin to combat those.
The victory is knowing that Christ is with me every step of the way, especially when I cannot make those steps myself.
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.