The hotel was lovely and everyone there was too. We met Ba again, Chris's MND AV and also caught up with Tracy his MND nurse. They are all so supportive and helpful. What a lovely bunch of people everyone there was, they were all were so very kind and all have been touched by MND in one way or another. We also caught up with Christine and her daughter Emma, great MND stalwarts and now I am glad to say friends. I am so pleased to have gotten to know them both, they are very supportive to us and the wider MND community in Cornwall.
The meal was really nice, though it was a bit of a struggle for Chris. We chose something that he would probably be able to eat, cottage pie. He didn't do too bad with the mash and mince, but couldn't eat the veggies as they were too hard. He could have had it pureed, but even at an MND event he didn't want to stand out as different. The puds on offer weren't really suitable, but they had some ice cream so Chris had that instead. At home his ice cream is usually melted by the time he has finished it so he ends up with ice cream soup which he still always eats. Because he takes so long he was still eating his melted ice cream by the time the waiters were clearing the tables. He was a little indignant that someone whipped his bowl away when his back was turned, but we understood they needed to get on and clear things. My meal was lovely, I even won a couple of little prizes on the raffle which is always a bonus, so all in all it was a lovely get together.
Chris does struggle with his meals now. He just doesn't fancy very much. I am so glad he had his PEG fitted when he did. I can't believe this man who used to eat enough for three people is now struggling to eat something so simple as a bowl of ice cream. This is one cruel disease. At least the PEG feeds are keeping his nutrition levels up and he is still maintaining his weight.
The irony of this disease is that we would never have gotten to know such lovely people if MND hadn't entered our lives, but it did and the one blessing is the never ending support that is out there from the wider MND family and for that we are truly thankful.
