#KennedysDisease #SBMA #ExtremeSpasticity
From 3:55 pm on Wednesday, until Friday around noon. Somewhere close to 44 hours. That is the span of time which spasms were pillaging my person. During this time, muscles were torn, speech impaired an a host of other things just went wrong.
There is hope. According to https://www.nola.com/expo/erry-2018/05/0cddf748039280/medical_marijuana_is_coming_to.html, I may be in-line for a go at a substance I have never ingested in my life. To be honest, this has taken some emotional soul searching to arrive at the point that I will allow myself to have this. My childhood friends that have stayed with me for the journey, and surely some that have been lost along the way, are laughing at me and saying “I told you so.” In fact, I’ve got a litany of people who duly earned the right to say “I told you so.”
My wife, whom I have known as a friend since I was 7, has been telling me I needed to chill out for almost 40 years running. I’m chuckling to myself as I am writing this.
Heretofore, little has been found to be effective against the acute stage of the disorder. When I go into a spasmodic event, they last up to 96 hours. They generally are 96 hours of Hell on Earth. Those of you lucky enough to converse with me during this time period will likely realize that I am not all there. It is impossible for me to be.
My condition makes its appearance in my handwriting, in my article writing, in my speech and in my ability to eat. The acute stage is pervasive, affecting all aspects of my person. Even basic bodily functions are affected. I sit in amazement.
During this particular event, a spasm destroyed a groin muscle as well has pulling and straining a multitude of other muscles. I even have sore facial muscles this time. I was as hungry as a horse last evening, having eaten scant food for the two prior days. Pervasive is a good word.
During the event, with my muscles in constant fire mode, my body generates a considerable amount of heat. Thus, I can generally be found sitting on my bed, in 60ish degree temperatures, in a pair of shorts…sweating. My wife and daughter freeze when they come visit me.
Pervasive. During this time, I want people, but don’t want people. I loathe my own daughter visiting me because, aside from the pain the activity it causes me, I don’t want her to see me this way and cause her further stress.
Pervasive. The word is not strong enough. The disorder takes over and you are wondering if it will ever end and if you will mentally snap during the process. I call the mental fatigue “getting thin.” You can think of nothing. You try to. You want to. But, alas, you cannot.
When the spasms finally subside, you are left with recovery. Fatigue then becomes pervasive. Everything must rest.
God remains with me. I changed the mantra of this page. My Biblical passage was Philippians 4:13 “I can do all things through him who strengthens me.” I have extended the passage one before and one after.
12 I know what it is to have little, and I know what it is to have plenty. In any and all circumstances I have learned the secret of being well-fed and of going hungry, of having plenty and of being in need. 13 I can do all things through him who strengthens me. 14 In any case, it was kind of you to share my distress.Philippians 4:12-14 New Revised Standard Version (NRSV)
During the event, I commonly reach to The Good Book for strength. In doing so, I never fail to learn something I knew was there, but I was too blind to see.
I realized that 12-14 says a lot about how I feel about life, this blog and the people that choose to read it.
I have found that the people that read it, do not ask me how I have been. They ask me how I am doing now, as they know the volatility of my condition. It avoids a lot of unpleasantness, as I despise recounting my situation and people generally don’t want to know the truth. I tell them I’m getting better. Which in itself is a lie. I am learning to manage the illness and my time left on Earth better, but I shall never…get better.
I am glad that I have people that push me to do things. Those of you that do this, know who you are. I appreciate the effort above all else.
I can see that this article is winding and my fingers are starting to bounce. I must end it. I hope all of you enjoy your freedoms, respect your friends and love your families. I’m going to leave the pets out of this, because they are covered under “families.”
Jay C. “Jazzy_J” Theriot