OK, Fessed up!
I've hidden my disorder(s) as best I can and joked them off as much as possible. However, I emailed to all those I mostly deal with what my condition looks like, what they are to do should they find me in that state, and let the chips fall as they will. If they freak, they freak. I as always tried to put a lite & funny spin on the situation as it is overwhelming at best and I'm used to it. The links I used have a video clip with voice overture to explain what it is and is happening. The links are as follows:http://www.wemove.org/dys/dys.htmlhttp://www.wemove.org/et/et.htmlhttp://www.wemove.org/msa/msa.htmlhttp://www.wemove.org/psp/psp.html Hugs to all and I am "officially" out of the hiding stage. Love & hugs
Replies
Hey J,
I watched the first website and I can\'t imagine how much pain you must be in from those repeating movements. The frustration of your body taking over and going on auto pilot so to speak.
I think putting up these websites is a good idea, it may help others to find the help they need.
My godson has tourettes and while he was going through puberty could barely walk, now at 17 it seems to have settled down greatly, no one notices anymore, usually. Will yours slow down over time?
How can we support you and help you? How is your husband coping? So many questions....Does your doctor have a handle on it?
Again I am so glad you posted this, it\'s hard to admit to ourselves that we have an illness, but if we can quit hiding we can move on unapologetically.
I am so proud of you!
Love,
Nan
My dearest Nan, NO SUPPORT, ROFLOL Just let me jerk for 1 1/2 hrs or 6 mins. It\'s all up to my body. I lost 6 lbs in 2 wks with my \"aerobics\". ROFLOL Man, when you jerk that hard and that long (1 1/2 hrs) you will be tired, and lose calories. So now I can tell my dr. YES I DO SO HAVE AN EXERCISE PROGRAM! LOL
No, this is a rare genetic disorder, so I am told. My baby sis has just began to exhibit but have family members (6 including me & sis) who do this to some degree. I, of course, must be the best and therefore, I have it the worst. Theirs is mostly hands/arms or hands or hands/legs. Me, full tilt top to toe and I shimmy like a hula doll on a dash board!
Hubby freaking still.....\"Can you do that somewhere else?\" But now with this med it seems to limit itself to my left hand mostly. So I just sit on my hand! ROFLOL
Neuro freaked the first time he saw all my shimmy boppin\'. He stated that \"most people just have one type of movement, however, you have them all.\" No DUH! The Klonopin has helped and I try very hard not to be evil. The other pill for the evil made me break out and DEPRESSED. Dear Lord! Like I need depression on top of being a Chubby Checker impersonator? ROFLOL
Lots of love to you dear. Yep, April 30 I will have my sister\'s neuro\'s opinion and no, I will not take my meds so he can get the full impact! ROFLOL