by Mark S on February 18th, 2006, 3:23 pm
cjh,
Everyone here has these moments. Everyone experiences the fear and uncertainty. I have been coping with this for nearly one year now - March 19 is my 1 year anniversary. I am fine and, in fact, just lifted weights today but my body is in some sort of electrical meltdown from constant calf and feet twitching to palatal myoclonus. Head to toe I have twitching and subtle jerks.
In all of that time I finally landed on a base that really makes my days tolerable. That is, I have come to realize that I have no control. I want to have it but in the end I do not. You do not. So we must stay in the present moment and also, in many of our cases, start to deeply examine the obsessional tendencies of this syndrome. Some anxiety is rushing in you and it rushes in me - you are looking at your hand and worrying about it to escape another issue.
The keys to this are twofold - one is that you must try to stay in the present moment. Worrying about being in a wheelchair and all of this is a projection into an uncertain future. You are more likely to be hit by a bus but you don't worry about it. Also, you must lose control - don't fight the twitches and symptoms - there is great strength in yielding. You are not in control - accept that and look deeply into the space where everything is under control.
I also highly recommend seeing a psychiatrist. The guy I am seeing saved my life last April and May because I was convinced I had als and would be dead in short order. I didn't want to live. He helped me with both medication and talk therapy - this combined with spiritual direction moved me past those dark times.
I am convinced I'll be twitching forever but it has been both a tremendous curse and a fantastic blessing.
You are welcome to pm me and/or I will give you my email.
Be at peace,
MarkS