Chloe came home for a few days last week which was lovely and we went to Porthleven for an afternoon. It was the real first opportunity for Chris to try out the new wheelchair and it coped with the hills brilliantly in fact Chloe and I couldn't keep up at times. We went into the Harbour Inn for a coffee and access was fine, though the wheelchair couldn't fit under the table. We had a cappuccino served in a cup and saucer and for the first time Chris was unable to hold the cup and saucer up, it was too heavy for him, so I had to get a straw and hold the cup for him while he drank it. It was quite busy in there and I could see Chris felt really uncomfortable. Eating out now is becoming an awkward experience as it makes Chris feel so embarrassed. It is easy for me to tell him not to worry, but he is a proud man and although no one stared at him, he felt exposed I suppose.
There has been progression generally in his physical strength. He still walks short distances with a stick, but at times he is very unstable so I am not sure how much longer he will be able to walk. His arms are getting weaker too. He used to drink the daily Fresubin shakes, but it would take him three hours to get through one, so I have pursuaded him to let me put them down his PEG. He has a tiny soft sandwich for his lunch and sometimes just ice cream for his tea, but that is OK, he has very little appetite now. Unlike me he has always been someone who ate to live and not the other way around. He is getting all his nutrition via his PEG during the day and at night, so is still maintaining his weight. It means he can just eat what he fancies, like those Lindt chocolate balls or a hot chocolate with Bailey's. He has thrush in his mouth again though, just another side effect of weak muscles we have been told.
Soon we will be in the bungalow, it will be a wrench for Chris, but he will be able to use his new wheelchair more as there is more space and there is an easier to access shower.
On slightly more positive notes, Tamara is slowly raising funds for her JumpFest event in June, she is doing a tandem parachute jump and Chloe is releasing her single 'Levels' on iTunes on April 10th to try and raise some funds too.
MND truly does change lives in so many ways we almost can't remember life before MND, this becomes so 'normal'. I can see the progression in Chris, but I still can't bare to think ahead too much. Taking things one day at a time though, well that isn't always that easy.
