Chris had a small choking attack while doing nothing yesterday morning, he wasn't drinking or eating. That freaked him a little. I had to go out to my WW's class. I was gone a couple of hours, when I came back he was still eating his breakfast. He said he was scared he would choke while I was out so was eating really slowly, that's not good.
On a good note though, a new appointment arrived for Chris's PEG op. Friday the 5th, only a week away, it can't come soon enough. A Macmillan nurse is coming to introduce herself to Chris later, it seems a bit soon, but it will be nice to say hello I suppose. I'm not really ready to think about when Chris might actually need one, that's a bit scary.
It was really heartening to think of all the awareness that has been raised, but there is obviously still some confusion over the names ALS and MND. I was speaking to a lady yesterday and she said her daughter was going to do the Ice Bucket Challenge for ALS. She told her daughter that she thought ALS was MND, her daughter said that it wasn't, it was a new disease. Of course I put her straight and also gave her the text donation link. It just shows that the message hasn't gotten everywhere. It makes you wonder where she would have told people to donate.
I was also listening to a brilliant interview on the BBC World service with people who have MND. One man said that people in rural areas don't get such good service because they don't live near specialist centres. I have to disagree with that. Chris was contacted within a few days of diagnosis by his MND nurse and support team and it has been on going ever since! In fact sometimes we want to say, 'Enough already', but of course we don't, but here in the UK, you don't have to live in the big cities to get the best care.
Last evening the Ice Bucket funds topped £3,000,000!!! Chris and I sat with my i pad while he was eating his dish of purée and I just kept pressing the refresh button. We yelled out when it reached that number. It was awesome.
On the puréed front, I just purée what Chris usually has and the meals actually taste really nice. The girls suggested I could sell them, like milk shakes, but call them meal shakes instead, not too sure it would catch on. We had a laugh about it. I melted dark chocolate and topped it with Bailey's for Chris's pudding. I think he rather enjoyed that.
What a difference a day makes. The fight and the laughter are back thank goodness. I spoke to a lady I had never met before on Face Book yesterday, her husband has recently been diagnosed too. She said that MND is the last thing on her mind before she goes to sleep and the first when she wakes up. It's the same for us, but this whole thing would have been a great deal harder if I hadn't come across the wonderful MND 'family' that is out there. They've been there for the likes of us, started the Ice Bucket Challenge and are all just pretty inspirational and when I wake up to see videos that have been done by family and friends, well it warms the cockles of my heart. Thanks everyone. This disease used to thrive on the lonelyness it also brought along with the symptoms, but in this modern world of technology, that lonelyness is gone, that's one battle we have won MND.
