I am making preparations. I’m going to Bavaria tomorrow and I’m very happy. I was never homesick, for example when I left my birthplace, but I am now. Although I can say that I already have quite good here in Hessen, I have met some great people. And some strange ones too, unfortunately, but at least now I can choose myself who is around me.
I am very happy to see old friends and old places again. Of course the question creeps up on me “what if I accidentally meet my ex?” Munich is too big for that and he wouldn’t recognize me, so I can calm down again. A lot of heart race and bitter crying would be the end.
When I will see my old apartment, familiar areas… when I think about it, I could cry already. It’s all connected with thousands of memories….
It will be all right. I am worried if I will survive the trip health wise? My friends don’t know me that way either. I wonder how a conversation will look like now… In any case, I’m thinking about writing a “leaflet” for my friends, then we’ll all feel easier and we won’t have to talk about illness all the time.
The real reason for my visit is the tour to Innsbruck, to my old doctor who can be called “the Pope of MSA”. In former times this was of course no distance from Munich, now it is a small world trip. I am very grateful to my caregiver for driving me there!
What I expect from the visit with him? Of course not much, because he can’t do magic either. It is just good to talk to someone who knows, for whom I am not the exotic.
What I would like to know (among others) although I know that it is impossible to answer, is whether this rapid progression will continue. I have had last year a lot of stress, with my decision to move into the wrong residential group, and then the move, which was also associated with a lot of stress. I explained my regression back then with that and I hoped when I had all that behind me, I could train myself back up to the old level. No such luck. Since then it goes continuously downward, and I would like to know whether this stops? Or does it continue at the same speed?
So since then my gait, balance, speech, and energy have gotten significantly worse.
What I would like to clarify is the matter of brain donation – can I donate my brain abroad at all? Because I would give my sick brain to him.
Furthermore, I would like to ask him what he thinks about testing for SCA 3? Because I would like to do that. In that case I would have the plague and not cholera, but at least I won’t die from it. The symptoms of SCA 3 are very similar to MSA-C and in my case autonomic symptoms are quite limited, but cerebellar symptoms are more severe.
I would also like to ask what he thinks of my plan to stop using Biohaven for anle138b. (I hope that the trial will take place in my study center). . Because I have the same dilemma as Marion described the other day. I am participating in the Biohaven study, but I cannot report anything positive. The Americans are already done with the trial since last fall and all on the real agent – no one is reporting miracle stories. Of course it is also hard to tell if it helps or not, placebo or not, who knows how it would be without.
If you think of another good question, send it to me.
As I write this, I’m listening to a meddle from the 90s on Spotify, so from my youth. When I hear some tracks… that I danced to, sweated to at the gym, went to the concert… I associate music with memories. Pieces of music that I used to listen to so often, if I had known what was coming… Now “Children” by Robert Miles is playing, with which I recorded my very first CD-ROM…
Now first fingers crossed that my bladder takes the trip and we do not have to stop behind every tree because of 3 drops.