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

Making Memories Blog

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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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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