What is one question you hate to be asked? Explain.
The question I struggle with is how did you find out you had MND / ALS ?
Having to explain the devastating facts of my illness repeatedly is incredibly difficult. Reliving the devastation of that makes control hard to maintain.
The expectation is that I will be stoic and even tempered upbeat because I have always been that way . That is so tiring .
Some days I don’t have the energy to be cheerful. Because I am looking fairly healthy people are always assuming that I am fine they have no concept of my life each day . I now have carers six days a week. To help me .
I listened to a podcast recently , the neurologist that I will be seeing is interviewed and this is the best way to hear about the reality of my life .
The podcast is called “Let’s talk MND “
I hope you find it informative.
Take care
Sue 🙂
suessewbyme 
Sorry you have to go through that, I understand