Tuesday 19 August 2014

No. 63. Jokes strictly between meals only.

The boys have been busy on the farm getting the farm machinery ready for the sale on Saturday. Chris wanted to do his bit too. He had been getting his sprayer ready for sale. It was one of the first things he noticed that he couldn`t do back earlier in the year. The booms fold up for transport and Chris found he couldn`t lift them back down, he didn`t have the strength. He found that quite upsetting at the time. He managed to do it yesterday, I think he was VERY determined! Now it is the finer things that cause problems. He said he was finding it hard to use his table lamp light switch, so I am getting a rocker switch to put in the cable and hopefully that will solve that problem and make it easier for him.

I have been busy making fliers to hand out at the sale. I thought it would be good to explain why it is happening and use it as a fund raising opportunity. Sales are advertised on line these days and there could be a lot of farmers turning up from all over. I`m sure a certain amount will be there out of curiosity. Word spreads quickly in the farming community and most people know Chris has MND by now. Whether they are genuine buyers or just plain curious, they will still get a MNDa bucket shook under their noses. I just hope the reputation of farmers being tight doesn`t hold true on Saturday. I am forever hopeful. 

After the success of pureeing the stew, I thought I would puree the chicken curry and rice I made last night. Chris had said rice was tricky now too. I have been using the hand blender, but I think I had better borrow a welding mask if I use that again as the fall out spray was going every where and it was hot !! I might try the food processor that`s hiding at the back of the cupboard next time.

I telephoned the physio about the wheelchair and it was the size she ordered. She suggested we try it first as there may not be a smaller one available. I did try phoning the people that supplied it yesterdat, but they didn`t get back to me. I`ll try again today. 

I had written my blog, well I thought I had and then this happened.

Chris had been out working quite late. I was a little cross with him as I knew he would be very tired, which he was, it also meant he was eating late too. He was slowly getting through his puréed curry and we were chatting and having a laugh. He started telling me a joke, you know, one of those ones where you are laughing too much yourself to actually tell it. Well Chris suddenly choked, he couldn't catch his breath. I slapped his back a few times, no change, he was getting quite distressed so I tried the Heimlich manouver. I just couldn't do it. I then shouted for the girls and Karl. Karl tried too, but he said Chris's tummy muscles had gone into spasm. It was making his gag reflex kick in too. We then bent Chris right over and gently slapped his back and slowly it cleared. I could see the girls were terrified. I was. He has choked before, but never this bad. It really scared Chris too. He is having the PEG fitted next week and it can't come soon enough. I think he was especially tired, his speech was slurry and I think that probably meant the muscles in his neck were tired too, hence the problems with swallowing. I understand he wants to be out side doing all the things he wants to do, but I think this scared him so much that he realised he has to look after himself a bit better than he has. Pride won't keep him alive, not in this instance anyway. His health has to come before the farm and I think we'll keep the jokes for between meals. I think I need advise on the best thing to feed him too. He has a visit to the dietician in two weeks.

There is no doubt that this choking event scared the hell out of us all. It really scared the girls as they hadn't witnessed it before. There is no right way or wrong way emotionally to deal with this situation and this disease, especially for our children. We are all made differently and all react differently. It doesn`t matter if we are over sensitive and emotional at times and it doesn`t matter if we put up barriers to block things out as long as the door is always held open for them to talk. There should be no guilt either way. I do the latter most of the time, but then the barriers come down and the emotions come out, that`s how I cope. I also talk about it a lot and I write this. What ever way we cope with MND is OK. Our children are old enough to know everything, it`s how they wanted it, no mater how painful and that way I hope they are never afraid to talk to me about it or ask questions. Scary things will happen and I don`t always have the right answers, but we support each other in anyway we can. 

I don't think I 've hated anything in my life as much as I hate MND, it is the most evil disease ever.

  If you would like to help the MND association to fund research and help those with MND/ALS please donate at www.justgiving.com/icebucket4mnd/ Thank you.