Chris is up lateish watching an episode of The Avengers on SKY, one of his favourite programmes and I stay awake as he needs help to get undressed and to get his PEG feed started. Likewise in the morning, but in reverse. This is not to complain or moan, but to show what this disease does to people. It is slowly taking Chris's independence and as it does his dependence on me grows more. I don't mind a bit, but feel more for Chris. Trying to get his trousers, thermals leggings and pants off while he stands and holds on to me for balance has been problematic. I asked the physio for tips as they leaise with the OTs, but she just suggested undressing Chris on the bed with him laying flat and raising his bottom up while I pulled everything down. This resulted in lots of giggles from us and left Chris in not an entirely dignified position as well as it being quite tiring for him so we will go back to him standing and holding on to me for now. When he goes to the loo he said he supports himself by holding his head ahead the wall!! Needs must I guess.
The physio came today to check on Chris and they are going to get the OT's to put a hand rail up in the shower for him. The speech therapist also came with a low tech comminucation aid for Chris to try, which is coincidental as his Eye gaze tablet has to go off for repair. The low tech board has the alphabet laid out around it in different colours. It is a bit hard to explain, but it is a simple idea which works pretty well. It will be useful in the future if the high tech aid breaks down again.
Chris is coping well with the daily feeds, though we have cut the volume during the day slightly because he was gaining weight quite quickly. We have to make sure we time things right if we go anywhere too as it can be a bit problematic if the feed finishes while we are out, as you have to flush the PEG tube with water straight away to stop blockages. We went for a nice walk on Sunday and then realised we had to turn back because the feed was finishing quite soon.
Chris says he doesn't mind us eating in front of him, but I find when we are on our own that I am eating in the other room away from him. I just feel guilty and bad for him. He did say though that he dreams of food like fish and Chips and steak. It is so cruel, he used to enjoy his food so much.
The speech therapist checked Chris's mouth for thrush while she was here and she said it was looking much better. I looked in his mouth the other day as he said he could feel a hair in it and I was shocked at how much his tongue was twitching. I know he has festiculations all over his body all of the time, but I never thought about his tongue. Of course it makes sense it would as the tongue is a muscle too and his speech is affected quite obviously.
Chris struggles with his breathing a bit when he is lying flat lately and sometimes he said he finds it hard to inhale after exhaling. I so hoped this disease would not affect his chest muscles yet as they are the most life threatening ones if they deteriorate. On the plus side though, he has had no chest infections or coughs and that is a positive thing.
We are settling in nicely to the bungalow, there is still loads of mess for me to sort out in our old house, but it is getting sorted slowly. The ensuite bathroom tiling is getting done slowly too. We need a second bathroom as Chris takes so long to wash etc in the morning and others need it as they have to go to work, so I am working hard on that project so that the plumber can fit the toilet etc.
So, life goes on, still MND rules our life and changes our life, but we do the best to make the most of everyday inspite of what life throws at us. We are going up to see Chloe in Brighton in a couple of weeks so we have that to look forward too. Gotta keep smiling....in between the yawns.
