#KennedysDisease #SBMA #ExtremeSpasticity
What I was afraid would happen, happened. The Abort! method worked wonders, when I caught the spastic event early. However, I always wondered, what would happen if I couldn’t start it until after significant symptoms started?
The answer is: It still works! I wish I was cognizant enough to get times. When these events start and your muscles feel like they are tearing from your bones, little things like science and timing for research don’t always become the priority.
I don’t have much decisive information for you other than this: After beginning the protocol, I began having relief from the cramps and the spasms. It didn’t seem to take long, about 30 minutes or so. I’m not real clear on that. I know that I prepared myself for a rough night and I was asleep not long after the house was quiet. However, I did go full-court press.
I was asleep, fatigued from the last three or four days of events. I woke up with a couple cups of coffee, provided by my youngest daughter. I quickly realized I was in trouble. Evidently, the event started while I was asleep. I took a Zanaflex and a Lortab, two BCAA drinks and a electrolyte drink. And then I waited. There were some screams. But, eventually, they stopped. The outcome was my left leg around the knee, my right groin left pectoralis, right lateral back muscles and left facial muscles were pulled. The worse was the leg muscles. However, this is minor compared to the events that went unchecked prior to Abort! Nothing tore. I’m walking, with a cane and pain, but I’m walking. I’m at the point where you probably should use the walker, but you really don’t want to. So I don’t. I bang into a lot of things. But, I’m walking. What could have been a terrible event, became a difficult event.
We are making progress in managing this disease.
There seems to be an increase in neuropathy. The left half of my tongue does not task food. The result is that many things I consume taste like plastic. It is odd that when I drink coffee, the right side of my tongue burns, but the left doesn’t have any sensation.
Putting caps on pens are a challenge. Punching my PIN into the ATM is a considerable challenge. Typing is a minor challenge. Typing is special. I’ve been typing for 37 years now. When I type, there is no aiming like the two previously mentioned tasks. The keys are there. My fingertips are partly numb, but I can feel the pressure of the keys. The letters occasionally get out of sequence. Or, if I place my hands on the keyboard in the wrong location…. Well, there’s some funky stuff that gets written.
But, things are progressing. I look forward to attending this Sunday’s church service. I made it last weekend, and cried after Communion. This week, I’ll be a warrior for Christ. No tears. I am going to enjoy the service.
Jay C. “Jazzy_J” TheriotDigital Communications Provider