Our daily life with Multi System Atrophy
Currently I am dealing a lot with pain. Primarily out of my own need and distress. Almost daily people ask me how I am and I have several problems with that. Often I answer the question with a general “As always”. But often the question is not meant superficially at … >>>>>>>
Lately I have noticed a change – among others – in myself. In the evening, when I lie on the couch, I have unusual breathing. I have to take deep breaths more often, it’s like I’m bubbling. As if I needed more air. I have been observing it for a … >>>>>>>
What is it like to be stuck in an MSA body? I often wish it on those around me for just 5 minutes. I also don’t know how another MSA sufferer feels. We are too different.
In any case, I feel primarily like someone who is very-very drunk. For almost … >>>>>>>
I was outside on Sunday – of course with my electric scooter, I can´t walk mainly outside, anymore. I have audio books with me, something to drink, sunglasses and baseball cap. I always go into nature, where there is less going on, and not in the city. I prefer to … >>>>>>>
When I move, I remind myself of a baby. I walk, stagger, like a toddler who has just learned to walk. When I move my hand, I am imprecise, I hamper myself. Quite often I overshoot the target, so if I want to scratch my nose, I may give myself … >>>>>>>
The day before yesterday was the day. First time in the emergency room. Urinary retention. I guess it was a coincidence that I saw urologist about two weeks ago and we figured out self-catheterization. The urologist thinks it’s also a good way to postpone a permanent catheter, because he says, … >>>>>>>
I am making preparations. I’m going to Bavaria tomorrow and I’m very happy. I was never homesick, for example when I left my birthplace, but I am now. Although I can say that I already have quite good here in Hessen, I have met some great people. And some strange … >>>>>>>
Dysautonomia is something that catches all of us in the course of the disease. It can be confusing, it can be anything and in the symptom-variety you often do not know, what comes from the disease and what not. But it is a little bit like our body is a … >>>>>>>
Each one of us has his/her horror symptom. Mine is antecollis. And I am sure I am not alone. For that reason, I want to know how it comes about and what I can do about it.
Antecollis is the term used to describe excessive forward flexion of the neck … >>>>>>>
It is winter and we are all afraid of viruses, germs, diseases in general, which can develop more complicated than usual in our body. Every little cold can degenerate and turn into sepsis. Nowadays we are even more careful, we also have COVID-19, nevertheless or even more we are … >>>>>>>