No.61. Highs and lows.

Boy, I woke early again this morning. Things have been preying on my mind a lot lately. MND has been on my mind non stop. 

Yesterday was all about family time. We spent the afternoon at a dog show where Chloe performed her music for 30 minutes. We were really pleased that we could get the wheelchair into the Kangoo and all of Chloe's music equipment. I was her roadie, but I could tell it was very difficult for Chris watching us do all the humping of her stuff while he sat and watched, we didn't mind, but he did. It was good to be together away from the farm though and to share a proud parent moment together. It was the first time he had really heard the song Chloe wrote for him and I saw a little glint in his eye as she was performing it.

The evening was about Tamara's boyfriend Karl doing his Ice Bucket Challenge. Karl has always liked to live life to the extreme and wanted to do it under a Matbro bucket full of water, so we just had to oblige. Jordan filled the large handler bucket up and Karl stood underneath while Jordan poured it on him. It was brilliant, he was absolutely drowned from head to toe and we all laughed our heads off. He nominated his parents who live up country, so hopefully passing the baton on and raising more money and awareness in the process.

Chris is beginning to acknowledge that he is struggling a bit more every day with his meals. He is constantly clearing his throat as the food gets stuck. It is quite hard for him to physically get through a meal now and it really tires him out. I think this PEG getting fitted can't come soon enough. This disease is certainly progressing and we don't like it one bit.

I forgot to mention that Chris had also had a letter from the DVLA as you have to inform them when you have MND. He hasn't driven the car since we went up to my brother's and he admitted that using the pedals is quite hard now. He actually asked me yesterday if he should tell them he can't drive anymore and I said that if he doesn't drive I doubt it makes that much difference to them. Yet another thing he loves taken away from him. I hope we can get his TR7 back on the road again soon, so that I can take him out in it. He can still thankfully drive his old Nuffield tractor and the Matbro handler.

We talked a lot about things last night and there was an acceptance, but sadness in him and it is quietly breaking my heart. It was a tough day for Chris in a lot of ways, problems with eating and having to sit by and watch Chloe and I carry heavy equipment, but it was a happy day too as we all went out together and had fun and had an even greater laugh watching Karl get wet. I think that is how it will be now, highs and lows, we just have to make sure the highs outweigh the lows.

The progression though, that makes me sad, very sad. Please stop stealing my husband MND, I don't want you to take him from me.

Here is Karl's challenge.( Excuse the understandable profanity.)