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. … >>>>>>>
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 … >>>>>>>
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 recently had a visit to the dentist. It is never a pleasure and as the disease progresses it becomes more and more difficult.
My dentist had MSA in the family, so he knows what to look out for.
Regular visits to the dentist are important for all of us. … >>>>>>>
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 … >>>>>>>
So, I’m almost done here. All in all, I can say that the whole thing has not really brought me anything. If, then so much that I speak here more, get up earlier and eat regularly. Because of the pandemic, some activities were cancelled, such as swimming and singing. I … >>>>>>>
Many greetings from Biskirchen from the Gertrudisklinik! I have been here since Monday and will stay for three weeks in total.So over the holidays, but because I’m not necessarily the Christmas person, that’s OK – besides, it is here rich and elaborately decorated for Christmas. But it will be nice … >>>>>>>
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 … >>>>>>>