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

Making Memories Blog

Thanks to Tony

Well let us have a bit of positivity. So, a while ago I did a post on a friend Alan, retired engineer who has helped me no end in keeping my independence by making solutions to daily issues.  Well I have another friend, also a retired engineer, slightly different though.  Tony was an engineer on oil rigs, but now he loves his gadgets, this how I met him.  it was because of the #fastestelectricwheelchair project, I wanted to have it filmed from a drone.  I put a post on face book...

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It’s a jacket of 2 halves

I wrote most of this a week or so ago, things have changed so much in a week but hopefully it will bring a smile as you read. So as the possibility of a test session comes close, I dug out the leather RST bike suit, this was donated by 5 ways motor cycle centre in Hull and RST.  Now it was hard to get on a year ago, so now it would be impossible. Clearly given the challenge ahead requires me to wear it, it also looks really good, so...

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The year that was 2019

Blimey, third attempt at this blog, keep starting it, failing to save it, get on with something else and lose it. so here goes and it was meant to be like the last blog of 2019. There simply is no other way to say it, 2019 was the worst year of my life, it had some stiff competition, losing my father 2 days before my 13th birthday, diagnosed with fabrys 2012 and being diagnosed with mnd 2013.  2019 beat the lot. It was a year that put untold stress on our...

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A tango with pneumonia

Let’s make no mistake about it, this was some serious stuff.  Sit rep, motor neurone disease, pneumonia, fabrys disease and for good measure a heart attack. So how, I believe the pneumonia could have been avoided, but as there is no proof it’s life.  I contracted a cold, no big bother other than I don’t like them but it’s made worse by my inability to cover my nose and mouth.  I dealt with it in the normal way, even avoiding the last top speed event at Elvington, to avoid the chill. ...

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  • October 24th, 2019
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I lost my way

I wrote this a few days ago and have deliberated about it , oh well here goes. In my last blog post, I touched on the fact that communication on holiday was hard. It was virtually impossible at some times and this had a massive impact on me. I lost my way for a few days, by that I mean I could have given up the fight. I have up to now always been able to make myself understood in one way or another, but perhaps due to the heat my voice...

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  • October 10th, 2019
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Tunisia 2019

Well it’s that time again, the infamous holiday blog, we had a few issues to contend with along the way but would you expect anything else. So this year we went back to Tunisia, the same hotel we went to in 2015 and had a great time,  Last time I could transfer, which made life somewhat easier, but you all know easy is not a word we do, anyway on with the show. As normal everything had been planned, TUI and Emerald at the Kingwood branch in Hull were brilliant in organising...

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Summer 2019

I deliberated on doing a face book post, then I thought nope, I have a whole summer’s worth of information so blog post it is. Well what a summer, busy busy, nothing unusual there.  It’s summer holidays and no school, great really what are we going to do with the kids?  I can say now with less than a week to go before school, it has flown by, the girls have really surprised me. So what have we done, dance camp, gymnastics , horse riding x lots, drag racing, going in...

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  • August 30th, 2019
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Rings

original rings

Well a nice blog post for you. I like to do things for the girls as memories for when I am no longer here; this has come in many forms.  Some examples are cards for their birthdays, which I enjoy throwing away when another birthday goes by, one more I get to see.  I have some gifts for birthdays like Disney ear rings from when we went to Disney World and so on. This one has been on my bucket list since day one.  So I actually have lymphoma to thank for...

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How amazing people can be.

L6ve life Tunisia

So as it is MND awareness month, which I have not seen advertised much, begs the question has it been forgotten? Anyway I could sit here with a load of advice that is no use to anyone as they live under a different NHS trust or their thoughts on MND are very different, hence I don’t bother anymore. So this post is all about one person, not me, not my amazing wife or children, not even my carers that do an amazing job of keeping our lives as normal as it can...

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MND awareness month 2019

MND month blog 2019 Well I for one am excited, this marks another MND awareness month.  I appreciate that not everyone will have this view but if every day is a gift like me, then another year is something like a miracle. It goes without saying that I would prefer we didn’t need an awareness month, because it had been eradicated but unfortunately not at the moment.  Since the last awareness month many people have suffered and lost their battle with this disease, I for one would like to pay my...

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