Our daily life with Multi System Atrophy
I read a forum post the other day where relatives were complaining about how stubborn their patients are. Then I thought about myself, yes I am stubborn too.
In the forum someone had complained that the father refuses to “pee in the bottle” and that is why he falls on … >>>>>>>
I’ve been in the „living group” in Hessen for a good three weeks now.
Such a move and “inventory through the own life” is without MSA already exhausting and stressful. Anyway, I am glad to have made it. Now I would not have the strength anymore. To the end I … >>>>>>>
First of all, the niece has recovered except for an annoying cough. Thank you very much for all your recovery wishes!
Like many others I am stuck at home with my butt for more than 2 months now and slowly it presses a little bit on the mind, you just … >>>>>>>
What’s happening out there is still very surreal to me.
I feel like I’ve fallen asleep in one world and woke up in another, suddenly Disney has no magic, Paris is no longer romantic and keeping your distance is caring.
But it only gets interesting when you have relatives who … >>>>>>>
It’s been over a year since my diagnosis now, a lot of things have changed into “habit”. After the diagnosis I was in shock for about three months, badly eaten, badly slept, spent the whole day in bed and cried, non-stop, every day.
I believe that, if you have no … >>>>>>>
I know that many people have their hair stood on end from the idea of going to a concert with multi system atrophy, with several thousand others – especially not to a concert by Lindemann, who is known as a provocateur anyway. And this time he did honor his name … >>>>>>>
I want to tell you what I found out after being busy with it and doing some research, why I sometimes feel particularly dizzy. Maybe someone else recognizes themselves here?
My research always leads me to the POTS. The term “postural tachycardia syndrome” (POTS) is common.
What is “POTS”?
It’s … >>>>>>>
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 … >>>>>>>
So, it’s New Year’s Eve, I’m not really impressed. As Harlad Juhnke – a famous German artist – once said “I hate New Year’s Eve, even the amateurs drink there” – a friend of mine reminded me of this saying today. But I think that everybody can celebrate on New … >>>>>>>
Dinner for one up Kölsch is currently on TV! I am sitting in my armchair and think about whether I should take another IBU or whether it has to be a little stronger because Ralf Schmitz as a butler is outstanding and when I laugh it all hurts!
Which is … >>>>>>>