Recently Jake came up with the idea of raising more money for the MND Association. Daniel and Luke agreed and the ideas came thick and fast. They eventually decided to put on a little variety show for our families, charging a very modest £5 a head. The show is now online through
Last week we went away for two nights for our anniversary (the one of our first date which is a more representative 18 years than the 2 years of the wedding ). Tracy booked the surprise break at The Moreton House Hotel in Corfe Castle, Dorset and our mums were given the task of looking after the boys. Given only 3 days notice meant that I didn't have too long to worry about the practicalities of it. Tracy had ensured that everything was wheelchair accessible and that there was sufficient room for a hoist. Despite this I'm sure tracy shared my apprehensions.
The journey was good and on arrival we realised we had eaten at the hotel's restaurant a few years earlier when we stayed at cottages down the road. We ate there again on both nights mainly because the food is so good but also because it was the most convenient option.
Despite the freezing weather we ventured as far as the nearby beech at Studlands which was perfect for the wheelchair and we walked for a good mile before the icy wind persuaded us to turn back. Later we walked around the village of Corfe castle and paid a brief visit to the castle. Not much effort had gone into wheelchair access. I appreciate its a ancient building but a few ramps on the steps would have been quite simple and would have opened up a much larger area.
A brief spell of retail therapy resulting in the addition of a jade elephant being added to our mantle piece elephant collection ended the day before a puncture forced a slightly earlier than anticipated retirement to the hotel.
It was unfortunate that my speech had taken a turn for the worse during the preceding weeks as it meant there wasn't much conversation going on but having been stuck in the house so much recently, the change of scene was very welcome, and you can't beat a walk along a beech!
If you have been reading the earlier posts you will know that I spent some time researching the Evans family tree. Well the other week I was contacted by a lady who had been researching hers and she cross referenced my tree as my paternal grandmother was her aunt.
So we spent a few days emailing each other old family photos and filling in missing names, although she had considerably more information to share with me than vice versa.
Anyway of all the pictures, I liked this particularly. It was fantastic to be able to show the boys their Great Great Great Grandfather, especially as it appears he was Abraham Lincoln!
Anyone with boys at junior school will be familiar with the words "Match Attax" and "Yugioh". For those of you that aren't, they are the current flavour of trading cards which appear to occupy said children during every free minute of school. I remember having a similar thing in the 70s called Panini which which were stickers, I'm currently trying to track down my completed 1978 album to show Jake as he seems to have been bitten by the bug.
I'm actually very much in favour of them, not least because it gives them skills in negotiation which will be invaluable when they are older. Lets face it, almost every aspect of life involves negotiation of one sort or another and the better you are at getting the favourable end of the deal the further you'll get in life.
Unfortunately the only lesson Jake was learning is that bad deals are a lot easier to do than good ones!
The other problem was, when Jake rushed up to me after getting home from school shouting " dad, dad you'll be so proud of me, I swapped Torres 100 club ( purchased on ebay for nearly 10 quid two days earlier ) for a man-of-the-match and 3 shinies (sum value £1.50) " I just didn't have the heart to tell him he'd been shafted and that I wouldn't be bothering to bid at 11.30 at night again in future.
However the thought of, at the exact same moment the father of Torres' new owner, slapping his son on the back with pride, while saying " thats m'boy" was sufficient provocation for me to suggest to Jake that he might like to reassess the match attax exchange rates.
It didn't matter that Jake was £8.50 down on the deal, more that someone had got the better of him or that he'd get the reputation of being an easy target.
In fairness, after giving him some guidelines on card values and explaining the term 'poker face' the swaps have got, well... less bad since Torresgate, but whatever they are I always agree that, yes I am very proud!
A bit quiet on the blog recently due to various factors. Have been spending a lot of time emailing people sorting all sorts of stuff including eyegaze technical issues, hoists, broken eating machine, mounting bracket for getting eyegaze on wheelchair, getting old bed collected, chasing online purchases for the boys birthday - the list goes on.
Yesterday I had to go to wheelchair centre to swap indoor wheelchair which took ages and today was at Parkside hospital getting a little lump removed from my eyelid, before it grew big enough to stop me using the eyegaze!
so I seem to be spending hours at the computer without having contributed to the blog.
The other activity which has consumed vast quantities of time is trying to archive old video footage. Ever since the boys were born we have not just taken video footage, but religiously edited each hour down to 15 or 20 minutes before copying to dvd for future viewing. It has been worthwhile as we have got round to watching them and they are actually watchable. Problem is that recordable dvd media is notoriously susceptable to scratches and equally fickle about which player it will work with. So through various methods I'm recovering the videos and making new masters so the many hours of editing don't go to waste.
OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good.
I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do!
For those of you who really want to, you can check out my "status" on my web link.
Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!