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

Somebody missed me

May 3rd, 2019

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 see anything wrong with this.  Taking this on board does anybody know where someone can go to get all the information on living with MND that they need to know to set them on their way down the MND road? Including continuing health care, direct payments, physio, wheelchairs, walking aids to foot drop or breathing machines etc.

So facebook aside I have done one blog on the world’s fastest electric wheelchair attempt,  which should have more news and pictures very soon as the month of June has been mentioned as the time we are aiming at.  So what else has been going on, well I had a nice visit from Joanne a lovely lady who is also living with our mate MND. We swapped some experiences as we live within the same NHS trust. She also had an impromptu flight in my ceiling hoist followed by an amazing roller coaster ride that is my toilet; I didn’t like to ask if she tried the lady button.  I’d be lying if I said I hadn’t tried it, no words spring to mind but as a last resort I will say it was another part of life’s rich tapestry.

Thought I better explain why I called MND our mate.  Simple really, at the start of my road trip with MND, because really that what it is for people, you choose your vehicle and see how far you get.  If you can’t get on with your vehicle then you might not get far.  When I started out I chose to use a multipurpose vehicle that could adapt.  So hence when things get worse I put another add-on on.  Might I point out that I plan to make it to the end, where ever it maybe.  So I just see MND as my navigator, side kick or however you see it.

So back to the post lol, so as I have said that things change and you have to adapt, well you may be familiar with my off road wheelchair, well I struggle to drive it because it is a lot different to my normal wheelchair.  You wouldn’t think a joystick could cause so many problems.  In a nut shell I need to change the seat because the current bucket seat won’t allow my arm to go right next to my side due to the wrap around seat.  So eBay is looking good for a normal car seat, it is looking like a fiat 500 one.

Still on the topic of seats, I have developed an uncanny resemblance to a motor bike side car racer; you know the ones that move side to side to keep the vehicle on the track. This is normally evident first thing in a morning, usually before a good builders Yorkshire brew, or in the mystery machine with certain people driving who shall remain anonymous.  So reluctantly it was a call to wheelchair services, what a result, we actually got through to the main lady who straight away said I’ll order the bits and send out an appointment for said bits to be fitted.  So last Friday they got fitted, they are called Lateral supports but  now known as flappy bits, make of this what you will. These new flaps are great and I remain up right at all times.

Finally for now I must mention my physio who also will remain anonymous.  First and foremost he is a great neuro physio and as he is private, so as apposed to other physio’s he is hands on.  He along with my trainers at the gym has made my lymphadema nearly go away all together.  To give you some idea of what they have achieved, at one point my right leg at the calf was double its normal size, with slight weeping.  Serious stuff aside it is something I enjoy and it is quality man time.  My wife and girls are all female, also my care team are female and the dog is female, so apart from my orange tree who I named Oscar, I am the only male.  So time with the physio and gym trainers is for a serious purpose but also a great laugh.  We take the piss out of each other and exchange weekly going no’s, like how our families are and where we have been.  There are the not so normal conversations like my physio has young twins so I find out how potty training is going, usually shit, lithely. Or say how many times he has split his trousers that clearly are too tight or how he had to restock with dawg oil, that is the name of what he uses to sort my feet out. .  But a really interesting one was he was going to London with his better half, his sole mission was to find a hidden bar, I was intrigued as to what he meant.  Apparently in London there are secret bars with in establishments so there may be a book case in the corner and if you push it, it takes you into a secret bar.  But they are not advertised so you need to find them.  I must have missed something as I never knew this.  Mean while at the gym I learnt that a form of martial art exists called muay thai, the relevance of this is my gym trainer is fairly well built and his wife is small, but is very well trained in muay thai and uses this when the time calls for it.  I instantly likened life in their house to be like the pink panther with Peter Sellers in, with Kato.  So this makes for great conversation with the bonus of finding out what delicacies he has to eat for lunch.

Finally plans for this summer, fastest electric wheelchair world record attempt is first on the agenda, Lilly and Poppy have a horse each at their big sister’s bar, kitchen and beds  pub near Malton, so there should be plenty of stories and pictures to come. Hopefully plenty of days out with our infamous beagle Popcorn. Most of all lots of great memories.

5 thoughts on “Somebody missed me”

  1. Heather hasthorpe says:

    Keep those memories pouring . We are doing a charity race night tomorrow in aid of Frankies Quest to find that magic pill that can kick that mate of yours called MND in the butt! Fingers crossed we cross the winning post with fund raising.
    Best wishes to all your family xx

  2. June Elliott says:

    Great to hear you are still enjoying life, your girls are lovely, best of luck with the wheelchair racing! Xx

  3. who do you think says:

    Is the only male in the house called Oscar I thought I would have got a small mention even if it was only for making you laugh

  4. Trev Morris says:

    Great to hear from you Jason! So good that they have got the swelling down on your legs. Can’t beat a good physio! There is a comprehensive set of information for those living with MND on the MNDA website, most of it is well written and careful not to scare everyone witless.

    1. thanks Trevor , to be honest I had totally forgot about mnda, I just think that people are totally in the dark about all their options

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