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

Making Memories Blog

Mini series and the unexpected

Well what an interesting few weeks, just a quick note to say that it has been brought to my attention that our website is less than mobile friendly. So as a result we are in the process of redesigning the site and any ideas are more than welcome. The main news is the release of the video series of our trip to the Bendrigg trust courtesy of the Masonic charitable foundation. The video series explains how and why we went. Recently I had an unexpected trip to hospital. I was completely unaware...

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Past, future and present

So my second attempt at this post, reason – I am so busy I do it in bits, forgot to save it and windows rebooted, #epic failure. So here goes! Exciting times have been and are coming. What have we been up to? Getting on the news twice in one week. Firstly the premier Inn saga, this for us cast a big shadow over our invitation to meet Princess Anne. The premier Inn situation is ongoing and in true style my wife has the bull by the horns and isn’t letting...

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  • February 5th, 2018
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New year, new hopes and dreams. Oh and challenges

It’s been a while since my last blog post.  Unfortunately there isn’t any amazing challenges or videos to report. Instead the news is more about the challenges of living with motor neurone disease.  Thankfully in the last 6 months my condition appears to have remained fairly static, even minor improvement in kidney function and night time breathing.  I would like to say this is due to medical advice, however given I drink excessive amounts of energy drink and refuse my ventilation machine on a night, I have to say currently my...

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  • January 22nd, 2018
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Politics and Flying high

It has been a while, as normal we have been super busy. In fact to be honest I don’t have a clue where to start. Since mount Snowdon we have done several separate photo shoots with Marie curie, one was for their latest campaign and is featured below. While filming Snowdon I also did some separate filming for a story video which is due for release anytime now. A couple of weeks ago we were photographed as a family for their annual daffodil appeal early next year. Filming and photographs...

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  • November 26th, 2017
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Cohl’s second poem, just as great as the first

The Abseil There was the sense of anticipation, in the air that day, as they all waited, with, raised eyes, under the Humber Bridge, in the wind they stood, beneath the cold autumnal skies. Gulls in their numbers, swirled over their heads, silhouetted again the pale skyline, as they watched from above, this unusual event, that would soon make the news headlines. Suddenly, there were, gasps from the crowd, as Spider Man came into view, over the side of the bridge he appeared, dressed in his costume of red and blue. The wind tugged at the wires, as he began his descent, accompanied by...

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  • September 19th, 2017
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It’s been a month of highs

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...

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  • September 16th, 2017
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It’s blog post time

It’s blog post time again I now have an appointment with ENT with regards to my trachy, quite quick, in September.  I have compiled a list of questions, I a few might be a bit silly, a teacher once told me providing its relevant there isn’t such a silly question.  I kind of figure as it will be the next part of my MND journey I need to be prepared. It’s now less than 2 weeks to the abseil, Liz as ever is working hard to make it a success financially.  She...

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  • August 29th, 2017
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Yorkshire Dales

Time flies when you’re having fun, which is exactly what we are doing.  Mnd doesn’t stop us at all, that includes going camping. We went back to the Yorkshire dales for our wedding anniversary.  Camping is something we used to do a lot, before the girls came along and indeed something the girls now love, nature is something they are fascinated with.  We visited Tan Hill, the highest pub in England. It still has the same landlady who was there when we got married there with a sheep called Clorisser as a...

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  • August 18th, 2017
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What’s next?

Well after Mt Snowdon you would think some rest might be in order, errr no.  Planning for the Humberbridge abseil is well on the way for 10thSeptember. Meanwhile my health continues to deteriorate at a slow pace, of which I am grateful for as it gives me time to plan for the future, whether it is an adventure, trip away or even the next step in keeping me alive in the way of a tracheostomy. My breathing has got worse at night, I use a none evasive ventilator for around two...

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  • August 11th, 2017
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Planning for the future

Yesterday we spoke to consultants regarding an elected tracheotomy, not the easiest conversation i’ll be honest. All seem to be up for it, and now agreeing a what stage it can be done can begin. nothing planned soon though. Rather daunting but we feel we’d prefer to tackle this head on. Plenty more memories to be made. Read the full article
  • July 28th, 2017
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