Hello everyone. I have just joined your group and done so an behalf of my sister in-law who has EA, lives in Maine and has no access to a computer. Does anyone know of a caring doctor in the new england area who has some experience with Episodic Ataxia? I would also be interested to know if anyone has found any sort of trteatment that either helps minimize the symptoms or lessens the progression of EA. thank you for your help. Marcia
Hi Marcia, I don't have EA I have Sporatic ataxia. I know that trial and error on diffrent foods have helped me with my symtoms. When I let go of having Gluten I actually stoped triping after a few months. Then I let go of refined sugar and alchohol which made more of a diffrence. I continue to exsperiment with food, taking babysteps. When I started letting go of Gluten for instance I let go of one thing once a week until I really got on board. My grilfriend said she went Gluten free but was still having some in her diet so she didn't see any resultse. I've been Gluten free now since 2004 and find it so much easier now because they have things to substaute foods instead of just giving them up like back in 2004. Looking at the foods someone eats may not cure or take this ataxia away but I think it helps the body be able to be stronger and fight things better than not having the right vit and minerals that we need.
Currantly I've been working on getting my legs stronger and also my core stonger. My Dr's have told me that it's really important to maintain any funtions with our body. I'm not one that like to exercise just to exercise either. I do it because after a few months of exercising (moving) I am now starting to notice how much more stable I am!