Our daily life with Multi System Atrophy
I was recently allowed to participate in a question/answer session , with a luminary in the field of atypical Parkinson’s syndromes.
In addition to the medical questions, it was also about dealing with secretions, in professional circles gladly also called Sekretmanagemet, which means it is more than just suction.
By … >>>>>>>
It is winter and we are all afraid of viruses, germs, diseases in general, which can develop more complicated than usual in our body. Every little cold can degenerate and turn into sepsis. Nowadays we are even more careful, we also have COVID-19, nevertheless or even more we are … >>>>>>>
She is only apathetic in bed, wrote me the other day the friend of a MSA sufferer.
That is already unfavorable, because it does not necessarily improve the situation. One loses then the body feeling still faster
You can try this out for yourself by sitting on your hands for … >>>>>>>
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 … >>>>>>>
Yesterday, 3 years ago, my sister and I were in Belgrade for what was probably the last appearance of our Effzeh in Europe.Â
And tomorrow it will be two years ago that my new neurologist spoke the “magic” 3 words: “You have MSA”! In between there is 1 year.
But … >>>>>>>
A beautiful St. Nicholas Day to all of you 🎅 And 2nd Advent
I often read that caring relatives ask for tips on suctioning or other care tips, that patients are concerned about whether it is part of the clinical picture to no longer be able to roll around … >>>>>>>
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 … >>>>>>>
Christmas time is the time for donations. We are too small a group, but we fight anyway!
For a long time I have been thinking about what is wrong with me. People in general credit me with much more than I can perform. At the beginning of my illness, even before my diagnosis, I often thought I was simply listless and lazy. As if my butt and … >>>>>>>