Loooong Event in Process – Why Not Go to Doctor?

#KennedysDisease #SBMA #ExtremeSpasticity

Loooong Event in Process – Why Not Go to Doctor?

My 15 year old daughter asked me a simple question last evening: “Dad, at what point are you going to go to the doctor to get some help?”

I shrugged my shoulders and responded, “You don’t. This is the disorder.”

When she asked me the question, she had been watching me “enjoy” level 8 and above pain for 29 hours. I am now 40 hours into the event. I’m not sure how long it will last. I can tell you the continuity of the pain is due to a series of spasms that left me with significantly damaged muscles on the right side of my body. Predominately in my right thigh and groin, but also in my right arm and lesser pulls on the left side of my body. I have taken more pain meds in the last two days than I have in months. Needless to say, I am in my chair most of the time. Only when I forget that I really need it do I stand up and walk about 15 steps…and begin to wish I hadn’t done that.

The pain is exquisite at times. I dive in and out of delirium when it spikes. My body and mind are exhausted.

My record is 96 hours. Sessions of that length have occurred enough for me to assume them the regular length of the events.

Two items of interest in this particular event:

  1. The damage is done mostly on my right side.
  2. My muscles were in fairly good shape when all this started.

I am interested to see the shape of my muscles when it ends.  Until this iteration, my damage was generally on the left side of my body.  I wonder if there any information can be gained from that factoid.

In Christ,

Jay C. “Jazzy_J” Theriot