My husband was diagnosed in June 21. The diagnosis of MSA C completely shocked us. Soon after, we heard something about a promising new substance that was soon to be … >>>>>>>
Between hope, anger and despair
The final result
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 … >>>>>>>
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 … >>>>>>>
Travel plans
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 … >>>>>>>
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 … >>>>>>>
What does science know about myoclonus?
Actually, we all have our problems and fears with this. To understand all this a little better, I have looked around. My information is based on American sources, so it … >>>>>>>
Christmas donation for research
Christmas time is the time for donations. We are too small a group, but we fight anyway!
The simplicity of walking
It happened. I can’t gloss it over anymore, I can’t blame it on the time of the day or on the psyche, my gait has become worse. I don’t think … >>>>>>>
Changes
Since I have participated in this trial, I observe myself differently. Now I am afraid of any deterioration, because it would (probably) mean placebo.
In general it is very difficult … >>>>>>>
Here we go – another stage
Here we go – another stage
Last week on Wednesday I received the mail that Biohaven considers me suitable to participate in the study.
As final start date we had … >>>>>>>