Camptocormia and what else is on my minds

Today is World Down’s Day. To draw attention to it, one should wear two different socks. Actually, I should be sitting in the Müngersdorfer Stadium with my 2 different socks to see the glorious effzeh win. Actually! Actually I am sitting in my armchair and watching forever soccer – The greatest games !

How do I get the idea. I have copied pictures from the iPhone to the hard disk. And I found 2 from some tour to Rehacare with the boss and her disabled Qui Gong group. 5 or 6 years I was allowed to accompany them and even if this day was always stressful, it was always nice and something special. So today I put on the socks for Konstantin. The only boy with Down syndrome in her group.
So many things fade into the background during these days. Understandable, no question.
My orthopedic physiotherapy practice is closed until Easter. Probably my speech therapy will follow soon and the neurological physiotherapy practice will have finished by curfew at the latest.
So my complex therapy on Helgoland is done for now.
The start of the Biohaven study will be postponed, probably until the end of the corona pandemic. Whenever that is.
Friends of mine are stuck in Brazil, so I hope to be able to leave today.
Also cancelled were the Miljötour through Veedel, Roncalli visit, zoo visits, the Photokina and of course the soccer league. So almost the whole leisure program. That would not be dramatic, but with MSA patients the clock ticks differently.
When I was diagnosed, everyone said to me: “Only do what you enjoy”.
But how? First year, I was all about the authorities. So the second year, I’m on Corona. It’s a shame you don’t get better.

Right now, I’m plagued by increasing camptocormia. It’s a rarely described symptom. In the so-called Camptocormia the torso bends forward by more than 45° as if pulled by a rubber band, only with extreme will and effort one can straighten up for a short time. Only a few develop this bad posture, which makes it almost impossible to sit, stand or walk straight for a long time. One is helplessly at the mercy of involuntary bending when walking or standing. While lying down the symptoms disappear and the spine returns to its neutral position. This impairs the quality of life and further restricts independence and motor skills. The risk of falling also increases.
After intensive googling I found a Camptokormier backpack. For this I need a prescription to start the test phase. Afterwards the doctor has to write a statement and then the health insurance will check it. Otherwise it costs about 450 Euro!
Of course there is still the physiotherapy, the corset and a forearm rollator.
I also found the deep brain stimulation, which is normally not for us MSAs. I will continue to find out more about the THS!

Stays healthy ??

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