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 … >>>>>>>
Here we go – another stage
The Magic
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. … >>>>>>>
Everyday life
I have no idea whether my condition comes from the removal/change, or from MSA. I am somehow out of rhythm, I have fears for the future, questions, concerns, I am … >>>>>>>
After the rain comes always sunshine
I was surprised to find that my last post sounded “darker” than I meant it. Well, that wasn’t my intention. Friends and acquaintances contacted me asking “if everything would be … >>>>>>>
Preparation for rehabilitation, summary of my trip to Canada, new symptoms and about the BIOHAVEN trial
Everyday life at home has me again and I am busy with the usual things like PT, OT, speech therapy, psychologist… First I try to get out of jet lag, … >>>>>>>
How time goes by
I haven’t had a computer for almost a month now. That is the reason for my absence. Typing on my mobile phone is a great exercise, but I couldn’t and … >>>>>>>
Hope and Plan B
Hello, everybody, sitting around at the hairdresser’s right now, so I can write something!
It was in January, Marta and me knew eachother just 2 weeks, we had 1-2 times … >>>>>>>
Last week
Actually, the week started quietly. Monday we went to the study day at the DZNE in Bonn. And since there are still holidays, the trip was relaxed and free of … >>>>>>>
The most important people in my life – how is it vice versa?
I wonder if I want too much. I want a doctor who knows me well and takes care of me. Who is interested, curious, ambitious, inventive, a doer. When I … >>>>>>>
The magic pill, trials, research
The hope of all of us. That one day – as soon as possible – there will be a medicine that will help us, slow down the disease, even reverse … >>>>>>>