#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
One month has passed since my last article and considerably longer since my last update. Much of the reason for not publishing is due to the fact that I became disgusted with thinking about my condition and tried to focus my sights on getting things done. I’ve had a few successes and my condition remains.
What we know:
The condition is a slow-progressive degenerative neuro-muscular disease causing many issues throughout my person. A gross number of my muscles are implicated. We thought they were just skeletal muscles, but now non-skeletal muscles are being affected as well. The involuntary spasms occur globally and continuously. Most are on a small scale resembling internal tremors, which I call micro-spasms. Others are insanely painful and instantaneous, lightning spasms. Some spasms efface as an undulation and finally some as cramps and twitches. All are damaging.
Micro-spasms, Pain Level 1.5 – 4
These spasms occur continuously. To provide an outwardly visible indicator, all I have to do is hold a firm piece of paper by one end and you can see the other end shake. Internally, I can feel them every time I relax, making sleeping very difficult. These micro-spasms had us befuddled for the longest time. We thought they were internal tremors, like Parkinson’s or Alzheimer’s, but they are not. I have no seizures. Everything is electro-chemical. They are just constant, tiny spasms firing off in all of my skeletal muscles. They feel like small explosions going off in my muscles, randomly, throughout my skeletal muscles, diaphragm, bladder, prostate and throat.
Once we realized what the tremors actually were, increasing my protein intake to repair the muscles as well as drinking electrolytes to help the chemical process became increasingly important. These two dietary additions have proven very beneficial to my overall daily health.
Diaphragm, Throat, Bladder and Prostate, Pain Level 5-6
Urine doesn’t leak out. It’s just the opposite. The bladder and the prostate bind together, causing intense pain and a blockage. My diaphragm and throat will react similarly. I have breathing difficulties as my throat will close and my diaphragm will spasm all at the same time. This creates a extreme negative pressure in my lungs. When my throat relaxes, I get a super-fast inhalation of air expanding my lungs tremendously. When this happens during the night, the CPAP blast air into my lungs as they rapidly expand. The combination of the CPAP-blast and my diaphragm rapidly pulling in air is a jarring sensation.
Twitches, Undulations and Cramps, Pain Level 3-5
Elevating the strength of the spasms a little, brings us to twitches, undulations and cramps. The three generally occur together. My big toe or fingers will tap out a rhythm. My skeletal and abdominal muscles with perform an action like bread when it is being kneaded. My brow will furrow. All culminating in an occasional cramp. Many times, these will be strong enough to tear muscle fibers causing bruising throughout my body. I had my oldest daughter photograph the bruising and discolorations after a particularly horrible event. The bruising usually takes two days after the event to appear.
Violin Strings, Pain Level 7-10
Single strands of muscles will slowly tighten, sometimes tearing. I get the sensation of either being stabbed by a stiletto knife where a tear is occurring or that I have parachute cords being held taut. We have not found an effective method of addressing these.
The pain generally ranges from 7-10 during these events.
Lightning Spasms, Pain Level Disorientating
Devastating, global, instantaneous spasms occurring out of the blue. These horrible spasms bolt my body and have caused considerable damage with a single strike. I generally have a crescendo of symptoms preceding the gross spasms. If I can ingest a BCAA, I can reduce or prevent lighting spasms from causing excessive damage, and possibly occurring.
I dread these above all else. They can take me down for days, if not weeks, in an instant. The pain is complete and off the chart the instant these occur. The level of the residual pain depends on how many muscle groups are affected.
The 23 prescriptions I take do absolutely help in maintaining my baseline. My wife went on a business trip. I was equally exhausted from attending church service and excited that my oldest daughter was spending the week with us while she was going. I didn’t take my medications the second-half of the day. In the morning, I reverted to the level of event I haven’t had in almost two years. I damaged muscles globally. Torn muscles gave way to numerous bruising. It was a dramatic confirmation that we are doing something right with the medication.
The Abort! Protocol is incredibly useful for cessation of an event and repair of the muscle tissue. I can tell a definite difference in both pain levels and function when I do not drink my shakes. The protein shortens my recovery time from a significant event exponentially.
Sleep and resting are considerably important in resetting the muscles once they are locked up. Two- to three-hour naps will help release the muscles once they are bound. My muscles bind as the day progresses. I am considerably better in the morning than I am later in the day. After a significant event, I usually sleep for 18 hours in a near narcoleptic state.
I have not found a treatment for when my throat, diaphragm, prostate or bladder spasm. We are trying a new medication for the urinary track spasms.
The word paraplegia is in my medical records. I don’t like it. However, I generally have use of my hands, as long as I can keep the tremors at bay. I have tubes I place on eating utensils when things go bad. I cannot pick flat objects up any more.
If my pain levels are not too high, I can drive for about 15 minutes, or be a passenger for about 30. Any longer, and I am asking for significant trouble.
Mobility ranges from walking short distances unaided, to needing a cane, a walker, a wheelchair and finally, non-mobile. Mobility level is dependent on the level of muscular damage as well as the level of my global neuropathy.
Occasionally, very few times, my wife has had to feed me. It may have only happened a time or two during the latter part of a meal. More often, she will have to cut my meat or other items because I cannot get the knife to do its job.
Numerous accommodations were made to my home to enable me to do things like make coffee, watch TV, go outside, shave, perform personal hygiene or work on the computer. My wife, mother-in-law and daughters continually assist me in finding devices or methods to aid in performing mundane tasks.
I use photography as a therapy. Each session extracts a toll on my health and requires a bit of recovery. However, I love it. Creating intriguing photos give me a bit of beauty in my life.
Getting better is a team effort. I get exhausted, frustrated and out-right angry at my situation. But, with God’s help, there will be a better tomorrow.
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.