Our daily life with Multi System Atrophy
I remember how much hope we had in the Biohaven study.
Now we are almost 2 months away from the end of the official phase. And the question arises:
What happens next?
What are the possibilities?
There is the “Australian” Alerity with ATH 434, but they are only starting with … >>>>>>>
Sorry, I haven’t been in touch for a while, I had a physical and mental slump, which culminated in the first week of my 30-day rehab in Loipl / Bishofswiesen. One or the other may now ask how I ever came to Loipl. I had the following priorities in, exactly … >>>>>>>
On 10.02 I go to Bischofswiesen for rehab. The invitation came unexpectedly and pulled a lot of bureaucracy behind it.here a phone call (KV, KlinIk, HA, neurologist, Ergo, DB ect) there an order (medical supply store, pharmacy) and where I just do not speak so understandable. Too fast, too high … >>>>>>>
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 … >>>>>>>
Yesterday, 3 years ago, my sister and I were in Belgrade for what was probably the last appearance of our Effzeh in Europe.
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 … >>>>>>>
It’s Sunday night, the referee has just blown the whistle for the last game!
My club got the first point and got well into the game in the 2 half time. It is not all lost yet. 🐐🐐🐐
I already have the first Christmas present.
If it wasn’t for this … >>>>>>>
Go back to the beginning…
…go there immediately. Do not pass go, do not draw 4000 Euro!
I filled up like this or something like that on 12.08 when I was lying in my bed on the periphery and could not even wash my face, let alone bring a spoon … >>>>>>>
By the way, I slept through almost 4 days after visiting the zoo
On the one hand because the weather was so
#hot and oppressive, on the other hand I had a meeting at GBH on Tuesday after the physiotherapy and that gave me the rest. Sorry for all the … >>>>>>>
Apparently, it’s time to add one or two more of my MSA’s capital.
Monday 14 days ago my sister, my nephew and I, after a guided eternity at home, went to the zoo.
The last time I was there with the boss and there I was already driven the last … >>>>>>>