Living With Motor Neuron Disease Part 4 

Well done, you are doing a great job, both for your family and those watching your videos. I do not know what your going through but I work for an mnd association and know just how important it is for people to hear from others going through the same thing. Your videos are also raising awareness. I learned a lot from your videos, thanks for sharing.

Thank you very much :) comments like that really lift my spirit, especially when I know the videos are helping people who need the help and to teach other people what life is like with a family member who has MND. It's people like you who work for the MND that really help us though so thanks for doing what you do, it's amazing :)

you are doing such good video diary's i found talking about everything helped. steve talked about everything every day.i still find it hard to come to terms with loosing my lovely brother and see my niece chloe who is 9 now every other week, she writes down her thoughts about her daddy.we help her and she helps us she had councelling before steve passed and has just finished,but meets with young children who have lost a parent or loved one its a living nightmare.we just wanted to scream stop x

hi Ben all you say just sums up how we all felt angry etc. I had to have time off work through stress, i find when people talk about trivial things that they find bad very boring.You are doing the very best for your dad, as you say the time will come when you will follow your own path in life,how is the eyegaze for your dad.this mnd takes everything with it from our loved ones and us, its self consuming, how old is your brother, how is mum coping always take each day as your best love to all x

Very true.. It's hard enough as it is, without the stress of work. I couldn't even handle part time work with my x boss without arguing. Sounds like you coped as well as what's possible though and made it through as best you could. The Igaze is tough, he's still trying to get used to it. In time I hope he'll work it out ok, my brother is 26, and mum is not too bad luckily her work has allowed her to do most work from home giving her time with dad, how have you been? I hope you are all well xxxxx

my da was diagnosed with motor neuron disease the other day, we are upset, i dont know what to do as we are shocked at hearing about it

as i said steve had the litewritter but you need to use one finger, steve needed us to help him with it but got his head around it. i have good and bad days i just think we were increadibly fortunate that we were there for steve all along his journey does dad have the mask for air.steve used his all night at first, this helped his voice for while it is so so hard watching them getting weaker each day,has dad got any movement left, i dont want to say things if dad is not too bad.love to all xxxx