Our daily life with Multi System Atrophy
I was inspired by Marion and I remember, what it was like for me, two years ago. Yes, it was pretty much on the exact day, I first heard about these three fateful letters. Unsuspectingly, I went to the hospital, on St. Nicholas Day two years ago, where I had … >>>>>>>
The You came on a Thursday and after I realized that I would not get even with you I wished for someone to tell me where to go.
Now I’m not a private patient of the alliance insurance (which has someone on the side) but only a patient of the … >>>>>>>
Brocade cushions and other aids
The other day I read another post where the patient/family refused a permanent catheter, but the affected patient was at serious risk of falling.
Why is this so? Why risk a fall where I could break who knows what? I can understand why people are … >>>>>>>
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 … >>>>>>>
I’m now four weeks in isolation. What pisses me off about this, is that I live in chaos – waiting to move. Yesterday, I searched through the already packed boxes, with a lot of effort, because I needed printer paper, which was already packed.
What belongs to my luck in … >>>>>>>
Third week in isolation. There I praise my social incontinence, but slowly the roof falls on my head. But that has only partly to do with this virus, it has mainly to do with MSA. For an independent person like me, it is difficult to think about every step. Just … >>>>>>>
By chance I’ve been left without a doctor. My family doctor has unfortunately passed away, my neurologist on maternity leave and my home hospital is closing the “Neurology” department. In addition to that my physiotherapist is also gone and I get a new one, recently my very dedicated speech therapist … >>>>>>>
Home again after 5 weeks of rehab. A mountain of post and the SIPPA drinking cups – a cup for all with swallowing issues, newly developed by a Start Up Company – are waiting for me. I find it worth supporting Sippa and also impressive that young people are busy … >>>>>>>
It’s almost a year since I got my diagnosis, I’ll never forget that day. A year ago I had “my last unconcerned moments”.
I’m writing this now, to be a little closer to newly diagnosed patients, to provide some assistance to them and to show, that the earth is still … >>>>>>>
We all don’t like to talk about it, but we all die. All of us. And dying healthy is stupid, dying sick with MSA is stupid. A meteorite on my head in old age (what is old age?) would be great…
To deal with the topic, one’s own way to … >>>>>>>