I don't know if anyone can offer any advice? My darling Mum was diagnosed last October 2018 with MND bulbar palsy. Her symptoms started in Feb 2017 and her speech has deteriorated slowly since then. She commented last week that she doesn't think it will be too much longer before she will finally lose the ability to speak all together and also she is struggling with excess saliva and is finding it increasing difficult to eat mashed foods as the whole thing becomes too exhausting for her.

She was fitted with a PEG in March but has been reluctant to use this. She is taking Fortisip (twice a day) and four spoonfuls of Calogen a day because that is what her Nutritionist has recommended. I am concerned that because she is barely managing to eat 2 meals a day that the Fortisip/Calogen supplements are not giving her all the nutrients she needs. She assures me that they are but is there anyone out there who thinks Mum should be receiving more in the way of supplements? Are there any others available?

Although Mum has recorded a Voice Bank she was quite disappointed with the final result and the length of time it will take for her to communicate in the future. Can anyone offer any advice on alternative communication methods? I was thinking of all the family learning sign language but is this an unrealistic/unworkable idea? Are there any other technologies available?

I am also worried about Mum's mental health in the coming weeks and months. She lost her husband a year before being diagnosed and is still grieving his loss. She doesn't share her worries and concerns with my brother and I because she doesn't want us to worry. Although I have asked her to share everything she won't because she's just being a protective Mum. I feel helpless and hopeless because I simply don't know how she is really feeling. Can anyone give me an idea of what she might be feeling/concerns she may have?

She doesn't yet have any symptoms in her legs and arms but is it usual for bulbar palsy sufferers to eventually lose muscle control in their limbs too?

Finally, does anyone know of any MND groups or people in the Dorset area who meet up for chats/advice and general support? I know that Mum would dearly love to meet with people affected by MND but no such support seems to be on offer through her designated hospital (Poole General).

Thank you for listening. I just want to do the best I can for Mum but am struggling a little with knowing the right questions to be asking?

Love Martha