Since I have participated in this trial, I observe myself differently. Now I am afraid of any deterioration, because it would (probably) mean placebo.
In general it is very difficult to say whether I feel better or worse, because it is determined by the shape of the day and the time of day.
Sometimes I have the feeling that my balance/gait has improved, sometimes I think it is worse. Sometimes I think that my pronunciation is better, I feel easier, other times I have the feeling that I have a knot in my tongue.
All this is also difficult to judge. The area where I moved here is very hilly, I cannot leave the house without company. Just yesterday I made the experience that I can hardly get into a car when the road is mountainous. I have now been prescribed an e-scooter, I also get it from the health insurance company – I hope now I dare to move with it. I generally hope to be able to motivate myself a bit more soon, I used to do a lot more. At the moment I have motivation problems and also a bit more stress than it is good for me. Getting old and sick also requires nerves.
I have had this diagnosis for two years now, and I have to say that a lot of things have changed in these two years. But there are still some things I can’t get used to, and there are many things I can’t accept. Work gone, car gone, man gone, hobby gone… you have to put up with all that first… But what still happens to me, that I walk away and then I am reminded that it is not like before. That I have a walking weakness and I can only stagger along holding on to objects. That blood pressure fluctuations force me to my knees and I have to stop. All just slowly and one thing at a time. I wonder what happened to the person I was before. So much has become trivial, everything revolves around this this one thing.
It’s the madness of the thoughts this trial triggers in me, even if I don’t want it to. It is madness how noticeable time has become.