Our daily life with Multi System Atrophy
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 … >>>>>>>
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 no idea if it was placebo or not? And whether the drug is doing any good at all. In the … >>>>>>>
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 … >>>>>>>
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 thought consciously, I would perhaps now be in a better situation than I am. Thoughts like “what do I get … >>>>>>>
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 may not be complete. Please feel free to make additions / corrections. The information is based on the pages of … >>>>>>>
Christmas time is the time for donations. We are too small a group, but we fight anyway!
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 it affects my balance, simply my legs do things they shouldn’t. And although my legs are healthy and certainly not … >>>>>>>
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 to say whether I feel better or worse, because it is determined by the shape of the day and the … >>>>>>>
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 agreed on the 23.07.20. So I am the last of our happy WhatsApp group to start the study, with a … >>>>>>>
I have the studydrug. Finally. Now, new questions are coming up. Is this the medicine or a placebo? Is everything coming too late? A year ago would have been good. Because, according to the study doctor, at best it slows down the progress or if everything is going super well … >>>>>>>