Our daily life with Multi System Atrophy
Being dissatisfied or unhappy is totally taboo. Negative thoughts and feelings in general. We have to deal with the most devastating disease, our lives, and often the lives of our family is out of joint, but whereas we let sadness show through! We are fighters and grateful for every fart. … >>>>>>>
For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought … >>>>>>>
I took a look at how many posts we wrote a month in the beginning, and how many now… It’s getting less. Writing a post is becoming more and more time consuming, difficult and tedious. Meanwhile writing a post takes forever. I make many more mistakes when writing, which I … >>>>>>>
Our paths crossed for a sad reason. And we spent too little time together.
You always had a kind word for all of us. For that I am now a little wordless.
Through you we learned how it is to go when one likes to go.
You broke the ice … >>>>>>>
It would take a few days to realize. Out of the dream…
A few days ago came the press release from Biohaven itself that the drug is unfortunately ineffective. I was a bit surprised about the timing, we in Europe are a bit behind. However, I was not surprised by … >>>>>>>
Somewhere in the parental cellar it still be, my first recording, where I
sang full of fervor. 2 Little Italians was one of my favorites
I was 3. and this is probably my first memory.
I learned to speak in Kuwait. My first words were bilingual
” Yallah ” I … >>>>>>>
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 … >>>>>>>
This is a topic that is rarely talked about, at this point as a warning to all, if you want to read on – it is about one’s own death and it is about active euthanasia.
There are many people who reject such a thing. If you have a partner, … >>>>>>>
I wanted to tell you about my trip… First of all, I am incredibly grateful to my AWO caregiver for making this trip with me, because I couldn’t have done it alone. And second, what you see up there in the picture is my former route to work. I drove … >>>>>>>
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 … >>>>>>>