Do you know it was Ataxia Awareness Day a few days ago?I asked my friends to ask me about ataxia 🙂 And here you can see all my answers! Remember that these are my answers and that I have SCA1 and I have no idea how your ataxia looks like. That is why I can’t tell anything for sure. What is ataxia? Ataxia is a neurodegenerative and hereditary illness. I have no influence on it, I inherit it and it is. It’s encoded in my genes. This is not one bad gene, but a bad effect. We all have this
Ataxianka Trip! There are many different travel tips on the internet, but traveling with ataxia is slightly different. I will write about the most important things that came to my mind during my last trip and combine my tips with photos of beautiful views. 1. When and where The decision of where we are going and when is very important and you should take into account possible weather conditions and your abilities. For advanced ataxians, I won’t advise the Alps; my cousin with ataxia also tells me that it is difficult to walk on the sand with ataxia, and it
During the last NAF Conference I was able to try something called Chair Yoga. What is Chair Yoga? Chair Yoga is a specific form of yoga as therapy developed by Lakshmi Voelker-Binder in 1982, practised sitting on a chair, or standing using a chair for support. The poses are often adaptations of asanas in modern yoga as exercise. Wikipedia I really liked imitating the movements of the leader and even though I do not like yoga, I found these exercises easy and pleasant and I actually felt refreshed and energetically charged after such a session. As if I had spent
Since I got the diagnosis, I have made a few changes to help me deal with the impending difficulties. I suspect that each of us has our own plan to fight ataxia (no such plan is a plan too!). And while I normally approve of each of us’ s right to feel awful and free to decide for ourselves, I consider the lack of any preventive action to be stupid. I’m sorry. But since you are here and reading this blog, this is some step in becoming more familiar with ataxia. Maybe you are not ready to face it yet.
What I think about Kyle? Kyle Bryant is a person with Fredreich’s Ataxia and because of his activity he become someone like a celebrity. He is a very active person on the topic of ataxia and helps others learn more about the disease. I think it’s great and I wish there were more people like that. Talking openly about your illness is not easy (I understand it a little more now, while I am becoming a kind of public person) so Kyle deserves admiration for it. Although my ataxia is very different from his (in SCA there are no heart