No. 203. 'Back to life with MND.'

The communication people from Dame Hannah Trust came down today. They brought a stand for Chris's wheelchair to hold the computer tablet and camera so he can practice much easier while in his wheelchair. They also updated and reset the Tobi i software as it kept crashing. They recalibrated Chris's eyes a few times, but he was getting really tired, so they showed me how to do it. His speech therapist came along too. She felt Chris needed some more Nystatin for his mouth as he was still showing signs of thrush.

The gagging episodes are still continuing. OK the suction pump helps get rid of the phlegm from Chris's mouth, but he still has to get it from his lower throat to his mouth. You can hear it is around his vocal chords as his voice sounds very bubbley. We spoke to the physio last week and she confirmed that there is no access to a cough assist machine in Cornwall. The powers that be just won't fund them. Chris has an appointment next week at Derriford in Plymouth again, where he has been told they would provide a machine. Thankfully Chris's niece is a physio on a stroke ward and has loads of experience with cough assist machines, so she could give advice if needed. These gagging episodes, are very distressing for Chris and can continue over a period of hours. I feel pretty helpless when they happen.

It is Chloe's last day here tomorrow, it has been lovely having her home and it has gone way to fast, but she has to get back to Brighton. We are going out for a meal as a family tomorrow, I will always hate that all Chris can do is watch us eat, I shall never get used to that.

I still feel sad about things, but people are so very kind and supportive. This wonderful MND family to which we reluctantly belong, are an absolute life line and we are blessed to have them there if we need them. Mutual support, sharing mutual pain.