I can’t stand it if I’m not taken for full due. I used to be a self-confident and active person, I have always made my own decisions, which makes me even more crazy when my mind is questioned.
I know that the reduction can take place everywhere in the body, the mind and the mental condition may be part of it and I question myself often enough. Which, by the way, would also be recommendable for healthy people. Additionally, my speech is getting worse and worse and it is difficult to prove oneself against the person I am talking to. Often one is waving off, finishing the sentence is for one, or some things are understood as a mood, which then will goes away. The fact that I move badly, I am very clumsy and slur my words like a drunk is often interpreted as if I was at the mental level of a four-year-old. I have a lot of deficits, but my hearing is great, and if people speak to me very slowly, as if I am cloudy in the head, it doesn’t help to understand me better, I will only roll my eyes inside.
Conversations on the phone are the most difficult. I make preparations in advance. Sit up straight and stable, suck a lemon candy, put water on the table, take notes. It all depends on, whether my telephone partner knows about the illness or not. So when you are on the phone you meet a lot of things, impatience, irritability. People who “know about it” often speak louder and very slowly, treat me like a raw egg, they might think I hear and understand them better. Or do they simply think I am a bit “batty” in the head? All of you, who might feel addressed now: please just be normal, I will ask if I don’t understand you. Again, there are many who treat me as usual and normal and that works very well. It is still in my memory how I watched YouTube videos with my friend and we laughed half unconscious.
That’s why I have now researched the topic extensively. I wanted to know how MSA is messing with my mind. It is not easy to find something on the internet. And if I find something, it is usually very scientific, even without MSA hardly to understand.
What I have learned, that it can be, but it does not have to be like that. So I am not much smarter now. It is like with all symptoms. I would only recommend all partners, relatives or caregiver to be sensitive to this topic, because you can do a lot of harm and in the long term you are not doing anybody a favor. If this does not affect anybody, they can of course consider themselves lucky. However, I think that more or less, and sooner or later, we all across this problem.
I sometimes I doubt when things bother me and some things bother me, that didn’t matter before. Sometimes I think that is only my personality (which certainly doesn’t make things easier) and then I don’t take myself seriously. Then it all takes its revenge later because everything comes back with a force. I have become more sensitive to tolerance. Now that I have limited time, I am not willing to tolerate many things. What I consciously realize about myself is that I have become much thinner-skinned emotionally, nothing more.
Back to my file found on the Internet, worldwide recognized centers have collaborated on this study, among others my treating neurologist, Professor Wenning from Innsbruck, whom I will ask about this next time,
For me it is always a sign of quality when I read his name.
Dementia is not a feature of MSA, although there is new evidence that cognitive impairment is part of the disease. Cognitive impairment plays a significantly greater role in other similar neurodegenerative diseases. Cognitive impairment in MSA occurs in a broad spectrum, from mild deficits to severe dementia in some cases.
The whole thing actually tells me that it can happen, but not so common in earlier stages.
If you are interested I will send it to you, write me an email if you are interested, I just don’t want to overtax anybody here, because that was me at first.
The fact, that people are more impatient with the speech is the lesser evil. It is worse if you are considered mentally unclean. Have I forgotten what I said? Was what was said so complex that I misunderstood it? Is my current condition only today and will I possibly see the whole tomorrow differently? To doubt oneself is bad. But I think as long as I doubt and question everything is still okay. To come to a conclusion, I observe some things for months to be sure that “I really mean it”.
This disease is already cruel, if you are not taken for granted and you doubt yourself, it’s even worse… I sometimes wish I had a little fog in my head to make it easier to bear. But that brings us to the topic of “Brainfog” which is a completely different topic. And if I have a brain damage, I still don’t know.