#KennedysDisease,\n#SBMA, #SMA<\/p>\n\n\n\n
OK. I started off\nfine. I woke up about 15 minutes prior to the outage. I was able to\nfix my protein shake and a pot of coffee. \n<\/p>\n\n\n\n
Near 5:18, the power\nwent out along with the climate control It is now about 40 minutes\ninto the outage. The ambient temperature is rising and I can feel my\nmuscles constrict as breathing gets increasingly difficult. The\ninternal tremors accelerate. My only thought is that I need an\nnatural gas generator.<\/p>\n\n\n\n
Going to sleep is\nnot an option. I require a CPAP. To sleep without a CPAP could very\nlikely put me into the CCU with tubes all over. Next on the to-buy\nlist: A backup for the device.<\/p>\n\n\n\n
\nI\u2019m going to drink a glass of ice-water to lower my core temp then\nmove to my vehicle to use the AC.<\/p>\n\n\n\n
I\u2019m in my\nvehicle. A\/C is on, air cooling and breathing is less strained. It\nwill take a while before my muscles relax. But, I can, hopefully,\nstop the progression.<\/p>\n\n\n\n
I put some music on\nin the car. It is clinically proven that music helps MS patients. I\nhave noticed the same works for me.<\/p>\n\n\n\n
A small spasm on the\nleft side of my torso. No big deal. Just meditate and listen to the\nmusic.<\/p>\n\n\n\n
I am very thankful\nthat I rigged my car up with a power-inverter. I would use it in my\nprevious occupation. I called my vehicle \u201cJay\u2019s Mobile Cafe\u2019\u201d.\n I had full broadband network access and 120 VAC. I many times would\nhandle issues for Ochsner on the side of the road or in a parking lot\nsomewhere. I loved my mobile cafe. I would put on my corporate\nmessenger the location as the mobile cafe and my coworkers knew that\nwhen they needed help, they could drop me a line and then wait for me\nto pull off the road or call me on my cell, depending on the nature\nof the issue.<\/p>\n\n\n\n
When I went critical\nwith my disability, my last status on my messenger was \u201cJay\u2019s\nMobile Cafe\u2019\u201d as I had to leave work because of the pain and\nnever returned. I contacted a former coworker from another division\nmonths later and he mentioned it. He was wondering why I was always\non the road and not at my desk any longer. LOL. I miss working for\nOchsner. It was a great experience. Some good, some bad, but\noverall a great experience. A good way to end a career. \n<\/p>\n\n\n\n
Back to the present.\n As the temperature in the car falls, I am starting to breath easier\nand my muscles are starting to relax. We got this.<\/p>\n\n\n\n
The power is back\non. I move into the house to get my servers back up and running. I\nstart the Abort! Protocol as my muscles are not happy with me. The\npower outage has pissed off the muscle control gods. \n<\/p>\n\n\n\n
As I drink my BCAA,\nI try to remain awake as I am exhausted and in pain from the\nmorning\u2019s activities.<\/p>\n\n\n\n
I really need to get\nan automatic generator for the house.<\/p>\n\n\n\n
In Christ,<\/p>\n\n\n\n
Jay C. \u201cJazzy_J\u201d\nTheriot<\/p>\n\n\n\n