Chris was very tired yesterday, at least he was resting more. I`m very glad we don`t live in some modern, open plan house as Chris comes in and works his way round the rooms holding on to the walls, worktops, furniture, what ever comes to hand. His balance is getting weaker without support.
Chris doesn`t need all of his food pureed, it just makes eating easier, especially with his evening meal when he is more tired. I dug out my Kenwood Chef and used the liquidiser that goes with it, That did a much better and less messier job of pureeing, than the hand blender. Last night I cooked sausage, mash, baked beans etc added some flavouring and pureed it all. It didn`t look too appetising and I thought I'd better taste it first, if it was yuk then I'd cook it again, but I tried it and it actually tasted good. Chris enjoyed it and more importantly, he ate it in a fraction of the time it would have taken him lately and more importantly it took less energy and he didn't choke.
It does makes me feel sad to have to do things like this, I don't mind, but it makes this all so very real. I`m sure it will be another thing we will get used to on this unwelcome journey.
Chris has a phone consultation with his MND nurse today. She covers Devon and Cornwall and taking a whole day to visit one patient doesn`t really make sense. He has also been called by his GP to have an ECG later today. I think that must be to do with his op next week for the PEG.
Each of our own experiences with MND are very personal to us individually. I am going to lose my husband far too soon and in the most awful way and my heart breaks silently while we try to get on with life. I do feel particularly saddened though, for those who have familial MND. One young man in the US is caring for his mother who has MND and has recently been diagnosed himself. That is unimaginably cruel and I can`t contemplate the strength he must need to deal with all of that. A little part of my heart breaks for everyone who has, or will have, this awful disease. I hate MND more and more each day.
Please help us fight this awful disease by donating if you can. Text ICED55 £5 (or whatever you can afford) to 70070 . All funds go to the MND association in the UK or elsewhere check out the MND/ALS charities in your own country. One world fights for one cure.
