The only way we can all fight is to raise awareness or to fundraise to help find a cure. Our eldest daughter Tamara has always wanted to sky dive so has signed up to take part in the MNDA Jump Fest in June down here in Cornwall. She is braver than I as heights terrify me, but she said that no matter how scary it will be, it is nothing compared to living with or watching someone you love, live with MND.
She has a JustGiving page to fund raise for it.
I am busy preparing for our move to the bungalow. I hate leaving Chris, even for just a couple of hours, to go and decorate. It is partly because I worry he may choke or fall while I am out and partly because time is precious. He is happy at home sorting out farm paper work though, we always had our own rolls in our marriage and that at least hasn't changed too much.
Chris showed me his arms yesterday, the muscle wasting has become more obvious in his lower arms and hands, what muscle there is, is floppy, his wrists look so thin. He is maintaining his weight though which is good, I am so glad he had the PEG fitted when he did.
Even living with MND as we do, it is still easy to go into denial a bit about what will happen as time goes on. Hearing about people who have died with this disease, well it is a real and painful reality check.
I still can't think that far ahead, I don't want to, we are still trying our best to take things one day at a time.
