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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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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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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Somebody missed me

So here we are, back it would seem by public demand. I was tagged in a post that was asking if Simon Adams and I were okay as we hadn’t been posting in a while. So what have I been up to?  Well regarding facebook I have commented on a few posts but mainly reading other posts and taking onboard others comments. It surprises me how many people join the MND forums and the first thing they need help with knowing what to do at the diagnosis stage, obviously I don’t...

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Things in my head

Just a few things that go through my head on an average day. Does anyone with MND just sit and think there has to be more to life than this? I mean is that it, the finale, like the end of a great series with a naff ending. Seriously  like good night auvoire. I mean really sitting in the same chair every day till you die.  Despite being really active, I get these thoughts , being driven around I see people of all shapes and sizes, I think take care of the...

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Turkey 2018 – part 3, possibly the longest blog post ever

Day seven So the suitcase had proceeded to clearance, does that mean it will be here today asks Liz?  Unlikely as it is still in Istanbul lol, so at regular intervals the tracking was checked but no change.  The girls finally decided to try kids club, which was pretty good.  It includes a train, bumper cars, a carousel and water slide as well as craft, and pizza making.  This would come in handy. The evening entertainment was as a rule very good with dance acts, magicians and even bicycle stunts....

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