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 gene, but in healthy people, it doesn’t freak out and mine does. Overall, ataxia disrupts the work of various things in the body. It is as if you are losing control over your body – over moving, over speech, over writing. Gradually, not all at once. This goes on for years.
How did you feel when you got the diagnosis?
As if my whole world has collapsed. I felt deceived by life, lonely, misunderstood, I roared for several days without a break. So you could say I felt like shit. The word „cheated” best describes this state. We all have dreams, plans, goals and suddenly we find out that it all disappears and we have to revise our lives. Learn to live in the present moment.
How do you deal with the disease on a daily basis?
I am doing everything very slowly and it frustrates me. I take care of my diet and sport. I should be walking more, but walking hurts me. Writing hurts me. Cooking too. So I have to deal with new things that do not irritate me and are fun. Like reading. Reading doesn’t hurt.
Besides, I often visit doctors and go to psychotherapy.
What are the current prospects for treatment/therapies for ataxia: are they inhibitory or reversing therapies?
Unfortunately, this is not known. The disease is still little studied, so specialists are huddling between different proposals, but there is a chance that something will appear soon. I am convinced that in a few years there will be a treatment. Difficulty in such studies is also choosing the right dose or what are the side effects of treatment. If a treatment method emerges, it is also not known to what extent it will „heal”. Ataxia destroys brain cells, so you probably can’t rebuild them, you can’t reverse them. Probably. But it doesn’t have to be that way.
How much is physiotherapy able to inhibit the development of the disease / affect the quality of life of patients?
Pretty much, I think. Physical therapy is everything we do. However, it is not the case that the disease stops during physiotherapy. It moves forward but slower. That’s why it seems to have no sense – you practice and you still have ataxia, even more advanced. So the most difficult thing then is to find the motivation and strength to exercise at all. And then the exercise itself is secondary.
Do you feel satisfied with the exercises or is it just that you are aware that it affects your disease? (I mean, do you feel satisfaction/joy and like to exercise, do you treat it as a duty)
This is exactly the problem that I talked about with my therapist – when I practice, I am aware that I am doing it because of ataxia. And the reluctance increases. So I guess this is something I need to work through. There is absolutely no way I can feel satisfaction or joy. I feel joy, as I feel more stable, but somehow I can’t connect it. Because exercise is a bit of a pain after all.
How ataxia affects sex! This is interesting to me, as long as it’s not a very personal question 🙂
I don’t really know what to say here – no, ataxia doesn’t affect sex in any way. But because of ataxia, you may have depression that affects your libido or you may have cramps that affect your sexual flexibility 😉
What are some understudied, or new medical doctrines that you know of, that you think could make a breakthrough in ataxia therapy?
There are few, but CRISPR-Cas9 seems to be the coolest medical curiosity. It is not as developed as yet to help with ataxia, but it has enormous potential and I sincerely believe in it. If not ataxia, it can affect other things.
If without therapy, how many years would you have until the ataxia becomes terminal, or the neuropathy becomes its worst?
It all depends on the type of ataxia and how who takes care of themselves, but in SCA1 the statistics say – 20 years from onset.
Are the doctors generally aware of ataxia? Or is it difficult to find a specialist?
Usually, they know what ataxia is, and that’s it. But it is hardly surprising, because there are very few sick people, and doctors learn from us what are our difficulties. There is one doctor who knows more about ataxia than I do so I visit her in Warsaw (capital city of Poland).
Does ataxia influence your daily life a lot right now?
Basically yes. Everything I do or don’t do revolves around ataxia.
What is your favorite game and book?
Nintendo games. I recently fell in love with Hyrule Warriors. And the books? Herta Muller. Or Dorota Masłowska – I’m a fan of everything she does and I’d like to eat bread with her one day.
How many specialists do you need to visit?
A lot, although my hopeless geneticist was surprised that I wanted to visit anyone. First of all, a neurologist, and then a speech therapist and a physiotherapist. I think a psychiatrist should also be on this team. Because even if someone thinks he is healthy and doesn’t need anything, I don’t believe him. Ataxia diagnosis is too heavy.
How did your ataxia begin?
I don’t really know. I guess at the beginning I was bumping into walls and when I was walking I had the impression that something was enduring me. As if a strong, invisible wind was blowing on me.
Are you in contact with people with ataxia other than those in your family?
A lot of people talk to me, but only online. Via Facebook or Instagram. But I was also at an ataxia conference in the UK once and I met a lot of people there.
Does age depend on the type of ataxia?
Each type of ataxia has an associated age when it usually occurs, and this is reflected in the statistics. Of course, it doesn’t have to be that way, but statistically, my type – SCA1 starts between the ages of 30 and 40. There are also ataxias that affect children or adolescents, and they vary in course and severity.
Do stem cells based therapies really help because there was a research
No. They help for a while, but it’s not an approved treatment. But this does not mean that this method has been abandoned, they are still researching and perfecting it.
Do you ever dream of Ataxia? Either in a way that you don’t have it or in a way that you have it and it shapes the events of your dream in some way?
I have mild ataxia and it usually does not appear in my dreams. I run in them, fly, I’m a superhero, usually, I do everything I can (well, maybe not necessarily flying, but you understand ;)).
But it is interesting that I dream about my mother very often (she had very advanced ataxia before her death) and she is almost completely healthy. She walks around, drives a car, laughs a lot, jokes, makes ironies. This is interesting to me because she has never been like this. These dreams make me think about what kind of person would she become without ataxia.
I also wanted to ask, but I think it’s at least partly covered in your blog when someone is diagnosed with Ataxia, are they automatically also directed to a psychologist to deal with the psychological aspects? The trauma, the depression, the desperation?
Come on, in Poland? My geneticist was surprised that I wanted to see a neurologist so you can imagine.
But to be honest, I do not know what it would be like with other specialists because I already go to therapy, my other doctors know about it and they do not suggest it. But I doubt if anybody talks to me about mental health.
However, I have noticed that this is sometimes recommended in conference materials, but always with a note ‘get help if you feel unwell’. Nobody says it’s necessary. And I think it is.
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