#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
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One month has passed since my last article and considerably longer since my last update. \u00a0Much 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. \u00a0I’ve had a few successes and my condition remains.<\/p>\n
What we know:<\/strong><\/p>\n The condition is a slow-progressive degenerative neuro-muscular disease causing many issues throughout my person. \u00a0A gross number of my muscles are implicated. \u00a0We thought they were just skeletal muscles, but now non-skeletal muscles are being affected as well. \u00a0The involuntary spasms occur globally and continuously. \u00a0Most are on a small scale resembling internal tremors, which I call micro-spasms. \u00a0Others are insanely painful and instantaneous, lightning spasms. \u00a0Some spasms efface as an undulation and finally some as cramps and twitches. \u00a0All are damaging.<\/p>\n Micro-spasms, Pain Level 1.5 – 4<\/strong><\/p>\n These spasms occur continuously. \u00a0To 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. \u00a0Internally, I can feel them every time I relax, making sleeping very difficult. These micro-spasms had us befuddled for the longest time. \u00a0We thought they were internal tremors, like Parkinson’s or Alzheimer’s, but they are not. \u00a0I have no seizures. \u00a0Everything is electro-chemical. They are just constant, tiny spasms firing off in all of my skeletal muscles. \u00a0They feel like small explosions going off in my muscles, randomly, throughout my skeletal muscles, diaphragm, bladder, prostate and throat.<\/p>\n 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. \u00a0These two dietary additions have proven very beneficial to my overall daily health.<\/p>\n Diaphragm, Throat, Bladder and Prostate, Pain Level 5-6<\/strong><\/p>\n Urine doesn’t leak out. \u00a0It’s just the opposite. \u00a0The bladder and the prostate bind together, causing intense pain and a blockage. My diaphragm and throat will react similarly. \u00a0I have breathing difficulties as my throat will close and my diaphragm will spasm all at the same time. \u00a0This creates a extreme negative pressure in my lungs. \u00a0When my throat relaxes, I get a super-fast inhalation of air expanding my lungs tremendously. \u00a0When this happens during the night, the CPAP blast air into my lungs as they rapidly expand. \u00a0The combination of the CPAP-blast and my diaphragm rapidly pulling in air is a jarring sensation.<\/p>\n Twitches, Undulations and Cramps,\u00a0Pain Level 3-5<\/strong><\/p>\n Elevating the strength of the spasms a little, brings us to twitches, undulations and cramps. \u00a0The three generally occur together. \u00a0My big toe or fingers will tap out a rhythm. \u00a0My skeletal and abdominal muscles with perform an action like bread when it is being kneaded. \u00a0My brow will furrow. \u00a0All culminating in an occasional cramp. \u00a0Many times, these will be strong enough to tear muscle fibers causing bruising throughout my body. \u00a0I had my oldest daughter photograph the bruising and discolorations after a particularly horrible event. \u00a0The bruising usually takes two days after the event to appear.<\/p>\n Violin Strings, Pain Level 7-10<\/strong><\/p>\n Single strands of muscles will slowly tighten, sometimes tearing. \u00a0I 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. \u00a0We have not found an effective method of addressing these.<\/p>\n The pain generally ranges from 7-10 during these events.<\/p>\n Lightning Spasms, Pain Level Disorientating<\/strong><\/p>\n Devastating, global, instantaneous spasms occurring out of the blue. \u00a0These 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. \u00a0If I can ingest a BCAA, I can reduce or prevent lighting spasms from causing excessive damage, and possibly occurring.<\/p>\n I dread these above all else. \u00a0They can take me down for days, if not weeks, in an instant. \u00a0The pain is complete and off the chart the instant these occur. \u00a0The level of the residual pain depends on how many muscle groups are affected.<\/p>\n What works<\/strong><\/p>\n The 23 prescriptions I take do absolutely help in maintaining my baseline. \u00a0My wife went on a business trip. \u00a0I was equally exhausted from attending church service and excited that my oldest daughter was spending the week with us while she was going. \u00a0I didn’t take my medications the second-half of the day. \u00a0In the morning, I reverted to the level of event I haven’t had in almost two years. \u00a0I damaged muscles globally. \u00a0Torn muscles gave way to numerous bruising. \u00a0It was a dramatic confirmation that we are doing something right with the medication.<\/p>\n