2021. Ataxia notes #6

The end of the year is often associated with various summaries and resolutions. In my case, the year 2021 was really bad, but I decided to take the challenge and try to find anything that I was able to do and that I can be happy about. 1. I started a blog about ataxia and I keep on it. I have always had a problem with being systematic, so if I manage to persevere with any new idea, it is already a success. And because I decided to start a blog and a website, I talk to some new people,

Can I have hope? Ataxia Notes #5

I recently wrote a post about the potential treatment of ataxia (link), and however exciting the concept seems, let’s talk about what this news actually means to us. I remember the first time I talked about it with a psychiatrist. And after listening to my revelations that they must be testing something on mice, and it seems it works, she told me „be careful with this hope.” So according to her, I can be happy, but only moderately. After a while, I realized that I can’t be like this. I can’t be moderately happy. For me, something has to be

Let’s talk about mental health. Ataxia Notes #4

I have mentioned it many times, but I can write about it again – I suffer from the anxiety-depressive disorder, and I am treated with therapy and pharmacology. I have the impression that my ataxia is inextricably linked with mental difficulties. I have had an anxiety personality for a long time, but it was the ataxia diagnosis that suddenly brought depression and anxiety into my life. I have the impression that even if we think that we are somehow coping with the ataxia diagnosis, therapy is obligatory. It is impossible to pretend that it is ok. The ataxia diagnosis is

My image of ataxia. Ataxia Notes #3

When I was a child, my parents showed me the world. As I grew up, my mother showed me ataxia. When I got the diagnosis, my first image was the one I knew because of my mother. I really didn’t want it and I was rebellious, but when I thought about ataxia, she was what I saw. My disease was her. I saw that she is weak and helpless, and that’s what I felt. Uncertain of the future. Unable to plan. Ashamed, reluctant to talk. And I was like that too. Little, ashamed, vulnerable, scared, and insecure. Inside me. That

Are you ashamed of your ataxia? Ataxia Notes #2

Are you ashamed of your ataxia? Ataxia gives a lot of reasons to be ashamed. How do you look, how do you walk, how do you talk. Ataxia is something so unusual that it is very interesting to outsiders. You can’t hide it and the worst part is – you look bad. It’s easy to feel ashamed in such a situation. It seems best to stay home so that no one can see you. „Keep it hidden for as long as possible” – you may even think. The problem is that because of shame, it is impossible to accept ataxia.

Hello! Ataxia notes #1

I was diagnosed with hereditary ataxia three years ago. But as I say often, even if I have ataxia on paper, I don’t have it 'yet’. Most people will not see a difference but the sharp eyes of my family members already noticed in me some ataxia traces. For a lot of time, I was trying to comfort myself with a thought that I should be happy because I am still healthy. I can still do things. I can still work. But I was not happy. And I could not understand why. I imagined there is some kind of „ataxia

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