One of the things that I miss very much while living with ataxia, is dance. No, I’ve never been a professional dancer, I didn’t learn anything, but I loved to just listen to music and jump. Just like riding a bike, like running, it’s just something I can’t do anymore. That is why I was surprised when I learned about certain methods of learning dance for disabled people. Wow! NAF organizes some workshops on December 14 when we will find out what’s going on. The method is called dance integrated health method and you can see more here: https://www.ataxia.org/event/intro-to-the-dance-integrated-healing-method/ I
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,
It might seem that how we eat does not matter much, but it does. Especially with ataxia. What we eat is very important. Swallowing problems are not uncommon in ataxia. But there is a lot you can do to help yourself. 1. Identify the foods and the type of food that is bad for your throat For many people these are either thin drinks (like water) or dry food (like a dry cake). In my case these are spices – pepper, chilli, or dry sprinkles – made of cinnamon, cocoa or powdered sugar. My mom had trouble eating cold food.
Fasting is said to be another fantastic health-enhancing thing. It is praised by healthy people, but this approach is also often used by people with various neurodegenerative diseases, including ataxians. Basically, there are several ways to do fasting. You can starve once a week and you can make eating windows in which you eat and a lot of time during the day is spent on not eating. I am not currently fasting, because I have an impression that there are many new things in my life and I don’t want to do everything at once. Fasting also has its own
Okay, so recently I decided to start my own keto diet and show off the result. I like the idea of being on a strict keto only for a few days and once in a while when generally try to eat low-carb. I already have a lot of experience in this and we live in a time when it is easy to find various products. In my supermarket, for example, there are special bread and pasta that have a lot of protein and little carbohydrates. That’s why I bought a Keto diet kit for 6 days, but I can already
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
Since I found out that ok, maybe there is no cure for ataxia, but you can actually do a lot to stop it; I was wondering – ok, so… what to eat? Everyone says to eat healthy. But I eat healthy. Seriously. Lots of vegetables, lots of unprocessed products, good products, and stuff. And no one really said what to eat when you have ataxia. Ok. Some people cannot eat gluten, but only those with gluten ataxia. And those with gluten-free ataxia can eat gluten without resistance. And after some time I found the answer. What not to eat? Carbohydrate.
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
Nobody will say it out loud yet, because there are still many unknowns, so I will say it. Hey, there MIGHT be a cure! I guess. It seems that yes, there is. I am not going to convince you of the correctness of my suspicions, but I will share the information I have gained. I am talking about gene therapy based on the action of antisense oligonucleotides, which are probably effective in reducing the harmful activity of excess proteins that are produced by ataxia. Ok, that may sound complicated so I hope this graphic will help you understand: Unfortunately, I
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