Hello @pattygail, I'm hoping others with the condition will answer your question. I have found a few sites that may give you the information you are looking for. CNN had a story in 2014 on stiff person syndrome - http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/. There is also a site that provides the progression and stages of SPS - http://thetinman.org/progressionandstages.html. Please don't give up hope!