Hello and Welcome to Neurotalk, Christine !

I don't have ALS so can't help you with that aspect of things but do know how frustrating it is when family don't understand illness. I've been ill since I was 12 years old (i'm now 15, nearly 16) and very few of my family understand what is wrong with me. I'm lucky that my mums been there for me ... if it wasn't for her, i'm not sure where i'd be today!

We have tried everything to get my family and friends to understand my illness. We've given them books to help, told them to look on the internet, spoke to them first hand etc but nothing seems to help. Sometimes I think they don't want to understand!

If you haven't already, I would tell them to look on the internet and do some research into ALS. Hopefully your family aren't like mine and will look into things. Also, try taking them to hospital appointments with you ... hopefully that will help.

Everyone here is so sympathetic and supportive so if you have any questions, don't hesitate to ask. I'm sure you'll find the help and support you need!

Take care
Alison x