The combination of being in a wheelchair and having slurred speech leads most people to the conclusion that I'm mentally retarded and it is becoming one of the worst features of this disease. (I know there will be worse things ahead but it is still infuriating)
I was at the hospital yesterday for something non-MND related and had to put up with a doctor who made little effort to understand me and a nurse who although made more of an effort, talked to me as if I was a 2 year old.
People actually stop making an effort to understand what I'm saying because they have already decided it won't be relevant or important. So as well as the frustration of trying to be intelligible, there is the added frustration of having any comment which is understood, effectively disregarded. I try not to be too judgemental as I'm aware that if the roles were reversed I might be guilty of similar behaviour.
Nontheless I'm getting very intollerant to it and short of being rude dont know how to avoid it. Apart from being made to feel irrelevant, I find the patronising tone and gestures irritating. I was trying to point out to the wheelchair technician that he had left out a part when he was reassembling it and he just smiled and told me not to be concerned, everything was OK. He discovered half an hour later that it wasn't!
I was running a £3m company until 2 years ago designing IT solutions so I'm not used to being treated like an idiot and I'm finding it very hard to deal with now that I am.
When your brain is about the only thing that still works properly you don't want it to be ignored