Chris has had quite a few choking episodes this week, for various reasons too. He is still managing to eat fairly well with soft food, though he has had to properly give up Weetabix now as that was causing problems every day. He is now trying Ready Brek instead. It is the drinks that are getting more problematic though. It really was good that he got the PEG done when he did. Last night was the first night that he had to have a full 500ml feed. The previous three nights were a weaning in process at 250ml a night. It is timed to go into the PEG over a 7 hour period and you set the pump up accordingly. The feed goes in through the PEG drip by drip. It is important that the PEG tube is flushed with water before the feed starts and when the feed ends to stop any blockages. So far so good.
(On a humorous note, one side effect we have noticed so far from the PEG feed is an increase in Chris farting!!! Not pleasant! When your hubby farts in bed it is rather like making a good pasty, you have to make sure the crimping Is good so there is no leakage, likewise with the bed clothes, best seal the bed clothes in really well or there is no escape!!)
Chris's voice is changing too, not just slurry, but sometimes he goes to speak and nothing comes out or it's like a whisper. We have no idea if that is normal for MND or not, but I guess it is. I tease Chris that he will have to start chucking things at me to get my attention. We try to make light of the things that are happening, it just makes all this a little easier to live with if we can laugh at it sometimes.
His hands are playing up too. I noticed he kept shaking one, he said the fingers were numb, I massaged them a bit and it seemed to help them feel a little more comfortable.
I guess this is the progress we dread, not great big leaps from good to bad, but a slow, creeping deterioration. Blink and you almost miss it, but then you notice something different and think 'When did that happen'.
I wondered today how many people at the fashion show actually knew what MND actually was. I think I missed a trick by not doing more to raise awareness. This is all still so new to us. I should have asked Ursie if I could explain why we were fundraising and how important every penny was and what exactly MND is and what it did to the body. I won't make the same mistake for any other fundraising event we may do. I am getting a little more courageous standing up in front of a crowd, it's amazing how passion and anger can also make us a little braver. This shy little mouse is slowly learning how to roar.
