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 … >>>>>>>
My new companion the Multi System Atrophy
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 … >>>>>>>
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 … >>>>>>>
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. … >>>>>>>
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, … >>>>>>>
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 … >>>>>>>
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 … >>>>>>>
Outlook
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 … >>>>>>>
When one door closes, another door opens (whether you like it or not)
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 … >>>>>>>
This is also part of it
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 … >>>>>>>