#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender
Many glorious thanks are owed. I remain in shock that we have come this far. At this juncture, my words fail me. I think we just closed a chapter.
Several nights and days have passed since my wife and I ceased work on developing the Abort! method. We are now holding the method static and putting it to use. It continues to work. However, there are caveats.
- The concoction only stops the spasms. There are many other symptoms that rage on while the event is occurring (as I was so brutally reminded).
- I must notice when I am getting into trouble early. The earlier I react with the BCAA the better chance I have at stopping the spasms.
I have had two long events. The first, lasted about 13 hours on Saturday and the next lasted about 6 hours Monday night. My muscles are sore, but no where near as destroyed as the have been.
Finding some way of stopping the spasms was only a battle in a long war. However, it was a major battle. I feel this was my Normandy. We now have a foothold. I remain in amazement.
As for how I am doing? I’m walking. I want to shout from the rooftops. However, I feel despair. I had a good friend have a massive cardiac arrest and has now left us. The whole thing took 24 hours.
I have been fighting a critical stage of Kennedy’s Disease for 21 months and running. It took my friend less than 24 hours to die.
I am lost for words. Instead of thoughts about our miraculous achievement, my wife is breaking down at a nail shop and I the mental picture I have is of his wife and two daughters, holding one another weeping.
I grieve for my loss, but even more for there’s. The were a devoted loving family. You could see it in their eyes when you asked them about their kids. I can’t imagine where they are. I pray they find peace.
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.