It is very important to take care of yourself. Don’t be ashamed of your illness, be active, join groups associating with other patients, look for solutions to help yourself. The first step is reading this and other blogs, because in this way you admit, only to yourself so far, that you have ataxia.
Here are few of my ideas!
Follow other people with ataxia:
- read blogs (Meg)
- watch youtube (Kelly and FA)
- browse Instagram (Ataxia Warrior, Kyle Bryant, Living on Lifes Terms, The Wheel Sammy Rose, Fighting FA, Being Leah)
Join ataxia communities:
- facebook groups (NAF, Ataxia Support, Ataxia Fitness, Ataxia Friends, Living with Ataxia, Ataxia Sucks, Hope for Ataxia, Ataxia Group)
- healthunlocked (Ataxia UK)
Look for local groups, websites, associations and initiatives:
- NAF – National Ataxia Foundation working in the US. They organize a lot of science events but also work on bringing people together.
- Ataxia UK – they do the same as NAF but for the UK community. Their actions are more achievable for people in Europe.
- Other countries – you need to use google to know what is going on in your country. You can also ask on international ataxia Facebook groups about people from other countries. But be aware that ataxia is a very rare condition so if you live in a small country it is possible that you will not find any Ataxian living close to you. But don’t worry! Being alone with ataxia doesn’t mean you have to deal with it by yourself.
Visit my site about being informed and listen to my advices 🙂