What do i get where. Part1

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

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 … >>>>>>>

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. Because, according to the study doctor, at best it slows down the progress or if everything is going super well … >>>>>>>

On an island

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 … >>>>>>>

To drive or not to drive

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 … >>>>>>>

The curse of a rare disease

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 … >>>>>>>