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

Making Memories Blog

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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Hello spring, I feel the need,. the need for Speed

Well as is usually the case, you don’t see a new blog for ages and then they all come at once. So the gears of a lathe have started to turn, some of the major parts have been manufactured, these have been custom made for this project, we learnt from the previous attempt, using acquired parts from doner machines just didn’t work. the previous attempt gave us real food for thought.  so with some serious skills behind me the plan was formulated, now it goes without saying that serious skill is...

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  • April 6th, 2019
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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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Is spring here or winter ending

  Well it has been 4 months since my last post; a lot of water has gone under the bridge since then. It’s hard to believe we are now in March, roll on spring. Notably the fastest electric wheelchair world record is still on going and we hope to begin testing soon, this will hopefully coincide with some nice weather.  Regarding this although there has been little news on the project we hope March will see the coming together of all the parts in one place, various people throughout the country have...

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  • March 19th, 2019
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wombles – underground, overground

Well an update is long overdue, and maybe some inside information on my challenges that the media don’t want to say.  Well since my last blog post the weather has changed a little, enough to make me shiver all the time unless I wear ten layers and reassemble the Michelin man. I have mainly been busy promoting our 2 challenges, of which one was successful completed on Monday 1st October, now caving is not something I have never tried and to be honest it wasn’t on my bucket list. So how...

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  • October 10th, 2018
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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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Turkey holiday diary 2018 – Part Two

So the holiday continues. Day three We woke to the fact that the suitcase was on hold, this clearly didn’t go down well with Liz, and she was well restrained to be fair.  First breakfast then down to the pool complete with hoist, inflatable crocodile, rubber ring and Jet Ski.  Once installed Thelma and I embarked on what ended up being a two hour lift ride.  We went to see our new friends at guest relations to get them to ring DHL, (dump, hide, lose) to find out the problem?  We needed...

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Turkey holiday diary 2018 – Part one

As title suggests I have decided to do this post in diary form, but before I start a little introduction. The two weekends previous we were away, the first was at fully charged at Silverstone and the second we went to a concert at the O2 in London, pre booked before the holiday.  Health wise I was not eating due to lack of appetite and been tube feed but drinking. Day one We were 1.5 hrs late setting off as you do if you’re the Liversidge’s, so of course there was then an...

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  • July 4th, 2018
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