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

Spring may well have finally arrived

Well is this the start of some nice weather?  If so it will go blog crazy as the Liversidge’s will be out everywhere in search of fun.

Health update – still here lol, lung capacity is static and so is my weight despite lack of appetite and the odd feed in my gastronomy tub. The bed saga continues due to the simple fact people can’t deliver what you ordered.  A visit to Sheffield mnd care centre saw me fall asleep during a survey complete with snoring, think I was a bit honest. My voice continues to hold up all be it being on its last legs.

That brings me nicely on to the Hornsea 3rd marathon put on by the Hornsea rotary club.  I was asked to open the marathon which I did by feebly lowering a union jack flag to accompany the official race starter with his air horn.  As well as starting the race I took part along side with my own Marie curie nurses, my wife Liz and a few supporters.  We had a cunning plan to avoid being last, we diverted down a green lane which suited my four wheel drive chair however not my neck, I had to wear my trusty neck brace for this bit.  I came in 1h 28mins later. The whole day was a great success raising over £4500 for Marie curie thanks to the entrance fees of over 400 runners going towards the total. I would like to complete the whole event next year if possible so watch out for more antics.

Popcorn had her first proper outing this weekend in the form of East Park, the beach was on the agenda but my four wheel drive chair had a puncture so that stopped that.  Popcorn appeared to enjoy the girls showing her round and introducing her to all manner of other dog’s even fellow beagles.

The rotary club disability games have come round again, this time in Hull at Hymers College. It was as always good fun and I had a chance to shoot again with the help of an instructor and technology, but still the trigger was pulled by me when I felt the shot was good.  Unfortunately due to elf and safety the girls weren’t allowed to take part.  I did win the electric wheelchair dash. Yes that is Lord Prescott presenting the trophy.

Just to round things off, i got out with the drone.

  • April 16th, 2018
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You couldn’t write this stuff.

So welcome to our new website.  Hopefully you will find it much easier and more mobile friendly.  Please feel free to comment on your thoughts and suggestions.  Our new site has been created and built by Grant Hood who is the husband of one of my carers; he has done it for a few Sunday dinners and drone flying.  We can’t thank you enough for giving up your free time to help us.

My previous post mentioned an operation well we got there in the end is all I can say.

After waiting 6 hours to get a wrist band they finally sorted it on the way to theatre.  Nearly forgot they lost my notes and found them at another hospital, as a result of this they took a brief medical history! I have two life limiting illness, it’s never going to be brief.  We were meant to see the anaesthetist prior to surgery and as we hadn’t Liz wanted to come down to surgery to see what the plan was.  Brief notes appeared, MND and fibromyalgia? Err no, Liz asks to look and sees Fabry’s crossed out and fibromyalgia written in, so then this is debated.  Next up the anaesthetist, he knows none of this, refuses sedation on the grounds it could turn into a general anaesthetic and they may not get me of ventilation and have to perform a tracheotomy, with no ICU bed was available.  In pops the surgeon, I have never fitted a portacath under a local anaesthetic.  Oh well first time for everything.  30 minutes in and should be done , one hour in pipe won’t fit, lots of hard pushing on a weak chest, Liz is asking questions, 30 minutes later and into recovery.  I became unresponsive and paralysed, oxygen saturation 90% and falling, I was aware of what was going on, I know how you feel Simon Adams.  Liz asked for my ventilator, still in surgery and when it did arrive no one but Liz knew how to use it.  Guess what next, the machine appears to have a fault and is breathing far too fast for me, no way to tell anyone, Liz knew something was wrong so checked the machine but it needs a specialist to unlock it and alter it.  Meanwhile after 45 minutes I had gained the ability to groan slightly, not great as no one knew what I was saying, not any different to normal then, over the next half hour my voice came back and movement.  No one knows why this happened but I have done some scary stuff but this had me seriously worried. The event started at 3.30 and we got back on the ward at 9pm.  I kid you not but you couldn’t make this up.

Popcorn is now fully installed and being just as much a nuisances as me, although I don’t chew things. The girls love her to bits and won’t leave her alone. The garden is getting the dog proof perimeter treatment.  She fits right in lol.

Night care is finally happening with 2 new carers and our 18 month battle with the CCG over a new bed has been won by Liz and is arriving on Monday.

Liz and Jason with Archbishop Sentamu at St Lawrence ChurchFriday was Easter school church service, which is a laugh with our vicar and Archbishop Sentamu, which was a surprise and great fun. We also got invited to our local church for Easter Sunday with an 8.30am start, hmmmmmmm but there is a bonfire to symbolise the sun rising and oh yes bacon sandwiches, count me in and I can get there in my wheelchair as it’s at the road end.

Lilly and Poppy clip n' climbSaturday the school holidays, joy. Only kidding, first off leisure world Bridlington, thanks to Julie my carer. Her birthday present to Poppy was clip n’ climb followed by swimming and water slides. The girls had great fun as did Liz and Julie. We don’t have much planned for Easter but then again this blog post all happened in 6 days so it’s unlikely to be quiet.

Operations and Puppies

So a fairly quick post to say I’m off to hospital again, this time for a portacast, a small device near my shoulder so they can get a line into my veins as they are rather poor to say the least.  It will also make my fortnightly infusion a lot easier.

That wasn’t my reason for this post through.  In my last post I mentioned Poppy getting a puppy and I asked you all to hold that thought.  Well here are my thoughts behind why I pushed for it, right or wrong I may never know.  For as long as Poppy has been talking near enough she has wanted a dog and basically 3 years in a 5 year olds life, well I don’t need to say it. Everywhere we go and see dogs we have to say hello, as long as the owner allows it. Then there are my thoughts on this, Poppy won’t remember me walking or picking her up, putting her to bed and so on and I feel exceptionally guilty for that, letting her down.  This in no way is isolated to just Poppy; Lilly does remember these things but not amazingly well.  Popcorn as she has been named is something I can give the girls that they can remember me for. Not just a book, picture, video or even this blog but a living breathing creature. I guess in a way I can live on, first we need to do what our site says, making memories . Having said this I am not planning on departing anytime soon. Besides Thelma one of my carers tells me she wants to finish paying for her sofa and wants a new car, so that’s that