Making memories for our young family as we live with Motor Neurone & Fabry's Disease

It’s been a month of highs

September 16th, 2017

Well what a few weeks it’s been! Abseiling, raising loads of money for charity and making choices about my future.

First a brief summary of the abseil, I don’t see a need to dwell on it to long as the media did a good job of covering it. Look North did a great piece thanks to Jo Makel and it’s in our video section as well as at the bottom of this post. To sum it up it was a fantastic experience for both Liz and I, it was a little chilly as the hundred or so spectators will vouch. A fabulous turn out and unbelievable support from an army of helpers. A special thanks to Humberside fire brigade, HFR solutions and the Humber bridge board for the massive support, they all gave to make it happen. The final figure is yet to be confirmed but without gift aid it’s close to beating £8000.Through out my adventures I get to meet some pretty amazing people and generous ones, this was no exception, some people may remember a poem was written about the Yorkshire voice, by Cohl warren-howles, well we finally got to meet her and her husband Saul. They travelled from Stratford apon avon along with their two friends to not only watch the abseil but to present a cheque for £1000 from The old tramway pub, what an amazing thing to do and a pleasure to meet them.

The question of what is next has been banded around; there is always a next, lol. The very early stages of the next challenge are being explored, so until further information is gathered I won’t be announcing anything.

Matters of health, seems weird to say that, given just about all of me is knackered, lol, I do laugh because if I don’t I’ll cry. Some of you may remember I mentioned a tracheotomy, well we had the appointment with the consultant and the outcome was very positive and we are looking to have it in the next 3 or so months. I am not phased by it, in fact I was very pleased with the answers to my questions, one was “aside from sky diving is there anything I can’t definitely do? “The answer was you can do sky diving for me. That answered that, not sure my respiratory consultant would agree.

The consultation was videoed and hopefully so will the operation as part of a documentary been made, but it may be used as a stand alone video like my feeding tube you tube video to help others, although these are not routinely offered in the UK.

I am now coming to the point where I need to take action regards toileting, not a pleasant subject, but top and bottom of it is on a night I can currently sit on the edge of the bed, not for not much longer I suspect. We have other means but it means lying down to wee, I just can’t do it lol, apparently this is a common male problem. A solution may have been found but it means another hole in m, I am getting close to more holes than a tea bag.

Slightly better news and it’s a trip to London for the British Medical Awards, more news to follow. Also it’s the heart of East Yorkshire awards this week and I am shortlisted for the charity champion, fingers crossed.

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