Establishing a New Norm

Establishing a New Norm
#KennedysDisease, #SBMA, #ExtremeSpasticity

Wow. We’ve come a long way. My medical team, members of the Kennedy’s Disease Patient Group, friends, wife and my self have all contributed substantially to the Journey. Now, I feel, we are going to have a new norm to establish.

With the implementation of the Abort! protocol, my muscles are beginning to heal. My pain level has dropped, considerably. While my pain has fallen, my perceived bulbar issues are able to be vividly noticed. The bulbar nerves address sensory issues. I consider where I am in my disability, “sustainable.” Prior to arriving to this level, I was having a very difficult time imagining the next 30 or 40 years writing in pain 13 out of every 14 days. I could not see that as sustainable, and even changed my stance on CBD oil and Medical Marijuana. They remain as they are. If I ever back-slide, I want them available to me. I will likely utilize them in the future, but as of yet, I have not.

The “events” continue to be 96-hours long. They have reduced themselves to four- to six-hour pulses followed by a four or more hour-long fatigue recovery per pulse. After the event concludes, I am left considerably famished and fatigued and desiring red meat. During the pulses, spasticity is increased and nearly non-responsive to medication. The increased spasticity is dramatically painful and the only reason I don’t scream for stronger medications is I have the ability to cloister myself, drop the ambient temperature in my room to near 60 degrees Fahrenheit and wait it out, riding the wave.

The inability of my medications to stop me from looking like Popeye feeling like my muscles are going to rip from my body are the reasons why I am not discounting the use of MM in the future. Frankly, I don’t care about if I get “high” on it. I’ve be “low” enough in the last two years that I would welcome a little escape. I have seen portions of my makeup that I don’t care to ever see again. Nor, would I ever wish it upon my enemies.

Neuropathy, ghosts and feed-back loop issues reign supreme. I just don’t feel large portions of my body’s skin. When I do, it is usually a warm pressure, considerably similar to the placement of a heating pad. The ghost will disappear from one area of my body and reappear elsewhere. I have found running cool water over the area confuses the nerves and it will dissipate. Likewise, tickling my back confuses the nerves and will dissipate pain.

Typing is problematic, but executable. My fingers don’t always hit the right keys, or they get out of sequence. I am making forays into developing my Dragon Dictate profile so that I may be able to extend my abilities when I will need to.

Muscle weakness, the cornerstone of Kennedy’s, is definitely taking a hit. Sometimes, I can’t lift a full over-sized coffee cup of the table. I have tools to assist me in opening jars and containers. Transporting food is an issue. My puppies don’t even react when I drop five or six pills on the floor. I still remember the last time I tried to work a shovel… It didn’t turn out nice.

Of course, there is fatigue. My nerves fire my muscles 24/7 and relaxation is a myth. Internal tremors make it difficult to sit for a relaxation break. Occasionally, the tremors are strong enough to make me see double and chatter my teeth.

Heat, even as low as 72 degrees Fahrenheit, will greatly accelerate my issues. I find 67-68 degrees tolerable. Anything higher and my muscles begin to seize, and the multitude of symptoms cascade.

Yes, we have a ways to go on this journey. But, the absence of spasms, as long as I stay vigilant, is a welcome change of pace.

In Christ,

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.