National Ataxia Federation

[penelope2]

The NAF in the US ( I am in the UK) has a large website with a different slant to Ataxia UK.

There are several factsheets to download and one is about nutrition and Ataxia also a list of supplements. These are quite high amounts but if you are interested in this approach might be worth downloading for specialists and neurologists interested in this approach. If taking a multi vitamin and mineral then amounts in this need to be added to any other you take separately. So well worth taking expert advice.

[chelpet]

I would agree with all that, and would add that the NAF also put on Zoom a monthly series of Ask the Ataxia Expert programmes, in which an Expert/ Neurologist (I’m not sure of the difference) talks and answers questions, both submitted beforehand or in real time through the Chat function.

I have found these progs. extremely helpful, often leading to huge changes in my approach to life, as one who has Cerebellar Ataxia, albeit with relatively mild symptoms. The, often philosopical as well as practical, approach of these progs. has had some very positive effects on my focus towards life with Ataxia.

[penelope2 in reply to chelpet]

That all sounds good, your approach and how it has helped you.I will look out for the "ask the expert" talks. Join the NAF because help, support and knowledge is what we need. Being proactive goes a long way.

If you don't mind me asking are you in the US?

Compared to others I'm only at the start of the Ataxia journey and realisation has already hit that I need to get as much knowledge to help myself and explore all avenues of self treatment as possible. Waiting for the NHS "experts" takes sooooo long and time is not on.our side!

Apart from conflicting advice, that is if they have any?

Thank you and good luck.

[chelpet in reply to penelope2]

I am in the UK