Video of Episode - WARNING it can be upsetting

Posting this video has been very difficult. I am so embarrassed, humiliated, scared  the words for it go on and on. Tuesday night I had another episode and it was a bad one. I was horrified that my daughter had to see her Mom that way; Never mind she is almost 18. To me, it is something I am terrified of, I always have been. I do not want to scare my kids or anyone else for that matter.

It's interesting i hadn't really taken the option to view the videos  until tonight. My first feeling honestly is "that doesn't really look like a big deal." Why is this such a concern? My thoughts immediately returned to how horrible it is to be that person in that position. Feeling like every minute is at least an hour. Playing games within my mind thinking I can of course make it stop. Right? We always are in control of our body's movements. Why is it when I tell my leg, arm, even hand to be still it doesn't listen. If anything it almost feels like if I focus on one body part to make it STOP - it gets worse.

Then there is the pain that accompanies the even itself. The realization that our bodies aren't supposed to move that way, they aren't built to move in that direction that many times, Sometimes one of those already painful movements will decide to be tonic - locking it in the most painful position possible. Then my pattern is to shake the leg/hip that already hurts unreal - as fast as it possibly can go. Faster than I honestly until a month ago was clueless the body could really move.

I am exhausted and I don't know that I can blog much more. I'm going to try to finish watching the football game and my Fantasy football before i go to sleep. I see the neurologist tomorrow so 1. Praying I get through the night without a trip to the ER, 2. Praying for an effective visit.

Asfor dinner tonight - thank you Matt and Windi  for dinner tonight. Taco Salad is always a big hit. The chocolate macadamias from Hawaii were the perfect addition. Others that brought dinner please now it means just as much - if not more if I wasn't up to blogging at the time.

God Bless Everyone and again please share this in hopes we get some sort of medical insight.