And while I’m typing this here and the Effzeh is playing against the glittering city in the city duel, it happens again, nothing dramatic but it can get you into embarrassing situations.
The inspirational sigh.
It is one of the characteristics that speak for an MSA. Mostly we only sigh when we are annoyed by something or when we are connected to an older Dräger ventilator (like the EV-A) (intermittent sigh). However, if you do an exercise that your therapist knows you don’t like and you sigh, your therapist will respond with an equally annoyed sigh. At the latest then the time has come to explain that the sigh is a characteristic feature of the MSA and does not express that you are possibly max. annoyed by your counterpart! I then always explain that I can’t help it – that would be MSA breathing.
By the way, the Effzeh plays a classic derby – so a certain nervousness on my part is part of the game.
Back to the characteristics of the MSA !
The sigh is now rather a negligible characteristic in relation to others that have a much more negative impact on the well-being and everyday life of an MSA patient. Like for example:
the combtocormia
the disproportional anterior collis
contractures of the hands and feet
Myoclonic hold or action tremor
Pathological laughter or crying
and any disturbances that affect speech!
The above mentioned characteristics can occur when a hypometabolism (low metabolism) is detected via FDG PET. This means that marked sugar is injected and one hour later a kind of MRI of the head. If the image of a hypometabolism is then visible, one can assume that one has MSA.
I started this blog post about 14 days ago.
Why did it take so long? I do not know. I know that it is not finished – maybe it will come sometime. But I would like to get rid of him. Well, I could have just deleted it, but I didn’t want to. In these 15/16 days a lot of very sad things have happened – heathen death, which has thrown me, just like Marta, off track. More than I wanted to admit to myself. People, in my environment, who are seriously ill.
Then Amy, our dwarf princess, died. Something that always gets me when a furry nose leaves. It always has.
So I just started to bluntly expand my training schedule, if I don’t have therapy it’s the exercise coach’s turn. In the morning after the 2nd wake up, exercises to get upright. Ect. Ect.pp What can I say: at the moment I stand a little more upright, I can walk/crawl about 800m slowly or 500m faster.
What I am missing is laughter, simple light-hearted, ironic or sarcastic laughter. That’s what I’ve been missing for a long time, I chalk it up to Corona!