Our daily life with Multi System Atrophy
I recently had a visit to the dentist. It is never a pleasure and as the disease progresses it becomes more and more difficult.
My dentist had MSA in the family, so he knows what to look out for.
Regular visits to the dentist are important for all of us. … >>>>>>>
I sometimes get scared when I walk by a mirror. Is it me or is it someone else? I am so completely a different person than I used to be. People who used to know me probably wouldn’t even recognize me. Just because of the cut off gray hair and … >>>>>>>
I have not been in touch for a while now. I am busy with setting up my new apartment, my new life. And I would have liked to train myself to the old level – which is unfortunately difficult. According to my study doctor, I haven’t changed much, but I … >>>>>>>
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 … >>>>>>>