The whole thing started with the diagnosis, first came Marion, that was the birth of this blog. Then came quite quickly Manuela, Heide, Sandra… and then the WhatsApp group was … >>>>>>>
Hope dies last
Since yesterday my trial is over. When I think back how much we expected in the beginning and what hopes we had!
Now one year is over and I have … >>>>>>>
Trip
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 … >>>>>>>
About Dysautonomia
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 … >>>>>>>
Once upon a time…. Me – and what remained of it
I sometimes get scared when I walk by a mirror. Is it me or is it someone else? I am so completely a different person than I used to be. … >>>>>>>
What should I do?
I remember how much hope we had in the Biohaven study.
Now we are almost 2 months away from the end of the official phase. And the question arises:
What … >>>>>>>
To accept?
I ask myself again and again the question whether one can accept this condition ever. Through conversations, the topic now comes up again. Others say, they have the effort to … >>>>>>>
The horror symptom
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 … >>>>>>>
Not obvious
I live my everyday life, day in and day out. The highlights, the special moments consist of banalities, so in comparison to the past at least. In the past, the … >>>>>>>
Brain donation: A gift for the future, or where to put my brain when I don’t need it
In this country and for many, this is a topic that people like to “skirt around”. In my opinion, however, the topic is important, and if earlier generations had also … >>>>>>>