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Hi Eric and Robyn

By comparison, my neck turning and speech difficulties are very minor. And as for the rest Eric – yes, it is a long list, but to look at me you wouldn’t guess most of it (possibly because of medication). In fact, if I stayed in bed all day or sat in a recliner, I’d be in almost perfect good health! It is just doing anything that starts off the twisting and within hours – exhaustion.

If you saw me in a restaurant you might notice that I tip a bit to the left and am not eating much, and my walking/moving is a little on the slow and laborious side.

I’ve come to realise that one positive for me is that I am the Mother to a very active 9-year old, which means I need to make sure I get my resting/activity balance just right. There’s no feeling sorry for myself or pushing things until I collapse in a heap! When I get the balance right, I am able to do most of what I need to do.

Robyn – thank you for telling your story. I am sure I am not alone in finding the journey to diagnosis quite a long, lonely and laborious one. It helps to read the stories of others. I applaud you ladies for what you are doing with this site. Let’s hope we hear from others soon.