my mnd shuffle

Well now…

It wasn’t so long ago that an update arrived here about an electric Wheelchair Optimus 2. As stated in that update, I felt I needed to encourage things a long when talking about outside mobility as waiting for the fundraiser to get anywhere near the £10K mark would take literal years I simply don’t have.

The biggest concern with all of this, is of course that I want just a hint of my life back! I know I’m never gonna be the same, I accept that. There’s nothing I can do about it and it’s shit! A mobility scooter has less stigma attached (in many people’s eyes) than a wheelchair, it signifies the not quite disabled, to “take the edge off walking” if you know what I mean?
Having and using my foldable scooter has been invaluable, don’t get me wrong I am VERY grateful for having it and, in the last 3 years it has made town life and shopping possible in so many ways. Of recent times I am almost completely reliant on it to get be around places that I never needed it for traditionally.

The biggest thing this recent issue has raised is having the conversation with myself about using a Wheelchair. I knew it was always gonna be on the cards and, to be honest, I (we) always thought it’d happen a lot sooner – given what my physio and specialists have always told me about the nature of the disease. I’ve pushed back, never wanting one, but that’s mainly because I always believed (and still do) that it’s giving up – and giving up on my mobility would cause a rapid decline in my abilities.

What I mean is, I have long since thought (and a lot of you may agree) that it’s mind over matter on this subject. whilst ever I am trying to be more active and doing things, I will be able to keep myself going for longer. The reason I’m not full on Hawking yet is this complete pushback against giving up or accepting the inevitability of the situation! I will try to move as much as I can, for as long as I can and I genuinely believe that this has made me the way I am. I shouldn’t be able to do what I can (I cover this in earliers posts, so I won’t bore you with it again).

The simple, harsh inalianable truth is; If I want to live my life now, I need to be more reliant on a wheelchair.

This stirs a whole range of emotions, many of which you may all understand, after all, who couldn’t sympathise with an active person who now needs a wheelchair right? I think we can all agree it’s pretty shit!

So, wrestling with this played a big part in moving forwards to wanting a powerchair like the Optimus 2. Following my last post, I contacted a mobility company to test drive one – to check if it would indeed be suitable for my needs. I have no doubt that compromises have to be made and that’s fine, As I said in my last post, the pros and cons have to be weighed up. one of the main reasons I was looking at the All terrain scooters I was looking at was their capability – to me, it made no sense to have one that couldn’t do basic tasks off road that I wanted it to do. This is, of course because I know about 4×4 and off road driving with my work with the tanks!

But now, it’s about managing expectations. having the Terrain Hopper would be great, but ultimately, redundant in the not so distant future given my real-life capabilities/limitations. Looking at a powerchair seemed like the logical thing to do to sidestep this.

One of the most frustrating things that I hope readers will have almost certainly picked up on is my Neurology teams incompetance! (if in doubt go back and read a few posts) they’re behaviour this last year especially has seen them (finally) accept there’s “nothing we can do!” which I already knew, but also means I’ve been completely let down yet again by them and been left to it. With no access to any MND nursing services or anything similar, just, left. next appointment is in June THIS year (2024).

The biggest downside to the above, is simply; I don’t get access to knowledge from professionals that would help my day to day living. If I want house modifications or aids, I have to go through my wonderful physio team who fortunately know and understand my position. Having gotten dristracted by now, I need to get back on track so to speak about what it was I wanted to tell you all today.

I contacted a mobiloty specialist/stockist to discuss a test drive of the Optimus 2. which was a mixture of both unhelpful and extremely helpful at the same time. She informed me that whilst the Optimus 2 will, as believed fit into the boot of my car (with a 200kg hoist) and do the advertised 37 miles but that’s about as far as it goes when it comes to performance. the youtube videos it appears are somewhat misleading (according to her) they can’t do soft ground, wet ground or sand. in fact, anything outside of a solid surface’s pathway (yes a compact woodland pathway too which is where the video misleads) it is supposed to struggle with AND doesn’t even fit into a standard sized door frame – meaning visiting places would be difficult as well as home use.

We discussed what I was looking for and of course, she reccomended the £23K 4×4 powerchair. (which would need a special car to travel in or trailer). I was a little dejected to say the least, back to square one and realising that I may be forced to spend big on just the basics of what I need. Until she asked what I was currently using as an everyday chair. which led us onto a conversation into more my needs and to what I specifically wanted from an off-road chair. We talked for about an hour, going over my story and why I was looking for what I was, and… to my utter amazement, she pointed me toward some systems that might just work for me.

The powerchairs and scooters I was looking at to be all-terrain/off road are ALL road legal to British standards and THAT’S what you are paying for. So my needs don’t have to be to that standard. After more talking and writing a boat load of information, I went out to research just what I could get that would suit my needs of fitting in the car, and potential budget of about £6000 raised so far.

It has to be able to go over woodlands, pathways, fields and other such places that I would want to go on a walk with loved ones or a military show.
I want it to be able to fit into a standard sized car boot and be able to get in and out on my own with additional hoist/ramp/winch if I got a new car and had one installed as opposed to a trailer or just plain old relying on other people like I do with my 25Kg foldable scooter.

Anyway, We spoke, at length and it turns out that despite the fact I cannot use a self propelled wheelchair, it was suggested that I get one and attach power wheels to it. the idea being that it’s not the self propelled bit I need or use, but the big wheels! (which, makes perfect sense, the 4×4 off roader in me agrees bigger wheels are always better) the system suggested was the TriRide system, which is a front electric wheel attached to the chair, with optional extra rear wheel power axle available to make it a 3×3 power system.

After all the research I did, this system amazed me with how versatile it was as well as just how easy and capable it was off road – and that’s just the front wheel drive system. just for the lightweight chair and front fork power add on it’s about £5-6K which is about the same kinda money I am lookiing at spending on a mobility aid to help off road. so that’s a box ticked, the system weighs approx 5Kg in it’s heaviest component – baring in mind it’s a modular system and all breaks down into manageable parts – perfect for cripples like me who have little to no arm strength. Also, MOST vehicle boots are designed to fit a wheelchair in, which also means I don’t need a new car for it (although I think moving forwards, a new car would be better).

The footage I saw of the system included a guy on a beach, woodland, field, road/cycle path and even Skiing – in the alps (I know right?) so do I think it’s for me?

Yeah, I think given the current situation, the slowlness of fundraising along with the inherent problems regards transport and independance. This particular system is appealing, it gives me the opportunity (given my declining state) to do/go to the places I want to and maintain some level of independance doing it – as the speed of recent progression indicates a scary ramp up.

This brings me nicely onto the great news aspect of todays update post.

Whilst reasearching the shit out of this, I discovered that TriRide aren’t the only manufacturer of this; there’s a few. some cheaper, chinese versions which don’t particularly look convincing (that said, my foldable scooter is chinese and has never let me down) They’re mostly a German idea and therefore come in different varients of the same product – though all coming out competatively price wise at the same ball park figure of £3-4K plus, adding a chair which can come out between £300 – £3000 pending on how much you wanna spend on that.

That’s when I found it.

On Ebay, a seller had a complete system for sale, a Klaxon Klick, Kuschall lightweight chair with some untouched MTB (mountain bike) wheels as an extra (£150). bidding started at £2,500. which, happened to be the same amount in the fund raised thus far! they were based in Rotherham (about 30 mins up the road) So, I bid, thinking if there was a reserve, I’d be outbid and wouldn’t lose out. It was a big decision to take though, given I’d noly just found out about the system that day!

there was an hour left to wait on the Friday night, and I won! I tried to pay but (fortunately) Ebay struggled to process the payment, So I called the chap, who offered me to not panic and to go visit for a test drive and check it out before any money passed hands. So, on the Saturday, we went up to visit.

Turns out, His Wife is Ex RAF, had an accident and is wheelchair bound. She has one and prefers it to her regular powerchair. Thier ‘spare’ unit belonged to her husband who had slipped 3 discs last year who thought he’d need one to keep up their lifestyle. He fortunately and thankfully wasn’t as out of action as long as he thought and so was selling it.

After a few “time wasters” wanting to haggle on the price, He just wanted it to goto someone like me who would greatly appreciate the bargain that it is – at £2,500 (rather than someone looking to sell on at a profit). AND because we didn’t go through Ebay, they saved on fees so I got the MTB’s for £100 too.

Needless to say, We took it to our favourite place Sherwood forest on the sunday to give it a good test. The biggest issue we discovered was the tyre, it’s a road tyre as standard fit and doesn’t give good traction at certain times – especially on loose gravel or very wet cement.

However: being familiar with such things, I found a decent off road tyre suitable and swapped it over. took 30 minutes and so far, without a doubt is the most sensible upgrade to the unit shy of purchasing the TriRide system AND the rear axle upgrade.

It is my hope that this will be more than sufficient for my immediate and indeed future needs for a significant amount of time. I shall as always, keep you posted with such excursions and any details of things I might get upto and of course mt feelings on matters.

For now.. TTFN.

Don’t be a dick.

Dave

Happy New Year!

You may have noticed the edit of the main gogundme page, but for those who haven’t here’s an update:
My beloved Terrain Hopper that I wanted so much does not look like a viable thing anymore, as my needs evolve and change, so do my requirements for mobility and, whilst I’d LOVE to be going Deer stalking again or up into the mountain tops, the harsh reality is much different, therefor II am now lookng at an Optimus 2 off road wheelchair, it is still an off road capable machine which would (still) give me back a significant portion of the life I once had back, it comes with lower expectations than the more capable vehicle I was after.
Don’t get me wrong though, there are pros and cons to this, the cons outlined above, but the pros, are much better: not least it’ll (theoretically) fit into the back of a standard estate car with a hoist – elliminating the need for a shed, driveway and trailer (and its associated problems parking).
I have an important meeting with the DWP this next week which I hope to be the catalyst of positive change for my disablilty (been waiting since last January).
it also means, that (hopefully) this brings the total fundraised amount from various sources to about £4700 – much closer to the amount needed (might even find a s/h unit for not far off this amount).

Anyway, Happy new year everyone and thanks for your time.

Don’t be a dick!

The boys 18th, travel and transport.

So I am desperately trying to keep this updated with thoughts.. traditionally I’m shit at this, but the reason for quiet this time has been family commitments to my eldest, Pete. Who turned 18 last weekend. We assured him last year he could do anything he wanted to celebrate… party…piss up… strippers… holiday… anything.

Turns out, top.of his list was to see Rome and its treasure of ancient monuments. So, we saved up and the 4 of us went for a long weekend. Which, whilst knackering, was epic for all the right reasons. Without going into boring details, it was lovely, sights were seen, gelato was eaten and pasta was consumed.

It wasn’t without its fair share of challenges however, renting a mobility scooter would have been an extra £100 per day! (Yep, you read that right) adding another £400 to the trip which would be much better spent on red wine. It meant, for me at least that trips like the Vatican weren’t possible (it’s not accessible – but in fairness, they make that VERY clear before you book tickets) the sad, harsh reality of having this shit show of a body riddled with disease is that things are no longer available to me.

Using the metro at rush hour as a cripple is bad.

Using the high speed train is good.

Flying is a challenge at some airports, but, qudos to Gatwick for their help and support which was top tier.

I believe this trip has signalled the end of an era as far as family holidays are concerned though, for many reasons. Mainly we/I like to go and see/do things. Which, when you’re well is easy and good, especially if you have kids you want to take and entertain (on a budget or otherwise). When you can no longer go and do, it makes you feel like you’ve ruined the holiday because no one wants to go without you, or make you feel left out -which is a fair argument, but an annoying one nonetheless. Of course I can curtail this by planning less physically intensive holidays and hiring a car to help with this, goes far.

And whilst a beach holiday has never really been my thing, perhaps a shift in my own personal attitudes towards these might serve me well… why not spend all day on the beach with a Pina colada?

There are also other facts I need to consider, like.. now the boys are grown up (18/16) they’re not bothered about family holidays like we used to have.. is this a handy time to stop them?

Travelling when a cripple ( disabled ) is like having a toddler again, you have to plan, leave early, have contingency plans in place, sacrifice, compromise… take shit with you “just in case”, you even need to take a stroller (wheelchair/scooter).

But I digress!

There’s a few people I know on twitter who have MND accounts specifically on ‘travel’ and it’s issues as a sufferer. So I won’t go into details on this (you should totally check them out though.)

As difficult as it has been, it has highlighted the need to keep it simple. having no car/mobility scooter in Rome was such a bad idea, I don’t think my future holidays will be without one or the other now. it’s an expense of course, but a required one. The simple harsh truth is that life is never going tobe the same again, this is one of many things that will change (quicker than I’d like) but, that said, as many of you may know, this is now my 5th year since symptom onset.

Given I am well and truly on borrowed time compared to others, I will take this on the chin. The biggest thing about this isn’t the restrictions, it’s the sudden and collossal realisation that my body is so fragile. just one more thing I can now no longer do.

Oh yes, that reminds me – in other news:

My fundraiser has had some local news attention, for those who are here from the Chad, Welcome! for those new who are unfamiliar with things, I am trying (deperately) to fundraise for a 4×4 wheelchair (or similar) we are currently about £2300 in of at least £10K which sounds a million miles away, but I keep chipping away at it. whether it’ll come in time for me to benefit or not we’ll just have to see.

I encourage new viewers to go back and read a few older posts, let me know what you think, and more importantly, ask questions and feedback what posts you liked – remembering that views are my own, I make no apologies for them or my feelings – I am, afterall trying to come to terms with the fact that one day, I will likely suffocate! and nobody knows when! so until then, I will likely be dark, funny and sometimes…. philosophical.

as always peeps, Don’t be a dick!
Love you
Dave

Busy busy busy

Well hello everyone!

First of all let me start by doing as I normally do and apologise. I wait far too long between posts, but this time, there’s a reasonable explanation:

I’m pregnant.

Joke, I’m not. Nor is Toby, but I have recently made a baby in the form of a fundraiser idea. As many of you will no doubt know, I’m a model train enthusiast. For a fundraising idea I made a suitcase layout. This is not just to sell and for the profits to go towards the terrain hopper, but also to hopefully go viral and signpost people to the gofundme page.

It’s taken me approximately 5-6 weeks of work but I’m finally at a stage where I’m happy to show people the finished article.

I want to encourage my blog fans to use the social media links to view the video of the layout rather than post it on here, this will help with the views and of course encourage you all to like and share it. The more people see it, the more traffic the fundraiser page gets (hopefully)

1 minute preview

3 minute details

There’s 2 for your pleasure, with my life being on hold, I have to find ways to occupy my mind before I go totally bonkers. I hope you enjoy watching it, I’ll post some behind the scenes stuff and here soon too if that’s what people want. It is for sale, happy to ship anywhere for the right price (I’ll get a weight quote) it’s approx. 20″x35″x12″ in size. If I get no reasonable offers I’ll likely auction it.

***EDIT***

Here’s the youtube link should anyone care to watch, like and subscribe

As always, much love and don’t be a dick.

Dave.

Spring break & a Birthday Rant!

Woohoo spring break… Or at least those in the USA would be screaming that! I however spent the week at the very top of Scotland, a solid -2/-6°C all week, sometimes snowing… But mostly ok actually. Granted this was curved by the somewhat luxurious nature of the hot tub which held itself at 38°C

Not everyone was happy to get in the hot tub in the cold.

One thing that our trip away highlighted though, was the sheer restrictions I felt. A younger me would have been all over the mountainsides, rivers and lakes. Nothing quite makes you feel down when on holiday than looking at things you would love to do and be physically unable/incapable to do it!

A long day of travel saw a few issues, espeically when we left at 4am! What I did notice, above all other things mind you; is the fact I had to constantly take a break, stop and rest – even drinking beer in a pint is difficult! A PINT… IS DIFFICULT! *sighs in mnd*

**** UPDATE ****

It’s July, my birthday, I realise I was meant to share this post back in May, so Sorry about that! The hot tub was amazing, Scotland (as ever) was amazing and so was quality time with the family.

There’s a few interesting developments that have happened over the last 2 months.

1st, I am STILL awaiting a PIPs renewal I submitted back in Feb, I have no idea why they needed me to do it (since my current one isn’t due to expire until September) but they did, so I did it… so far: Nothing! just another reminder that the system here in the UK is banjaxed! (new favourite word btw).

2nd, I’ve had another group of Hydrotherapy, big props to Amy and her team at Kings Mill Physio dep. I only get a 6 week stint every year due to waiting lists, but it’s incredible how it lets me move muscles that I would not normally get a chance to had I not been in water to help keep me upright!

3rd, The Rituximab infusions I had last August were, as it seems, a failure. When I say that, it’s important to know that I mean it did wonders for my kidneys – and sweet FA for the MND. This came as no surprise to me, those of you who know me, will know that I have a good grasp of how things are affecting me and whether I think something is working for me or not.

4th…. It has, however, come as a massive shock to my Neurologist. Who, by all accounts admitted to me at my last visit in June; that she’s been treating it as an Autoimmune disease like the Kidneys and is quite surprised non of her treatments have worked. she further went on to disclose (her parting words to me actually – and yes, I was alone for the appointment as I usually am for these nowadays, largely because nothing ever happens anymore.) “maybe it’s genetic? I don’t know… I don’t think it’s treatable, there’s nothing we can do then!”

*** gentle reminder ***

As I’m sure you’re all wondering, let e elaborate on a few things I believe to be the ‘brains’ behind my neurologist: my current Nuero was the very first one I saw back in 2017. with the cramps, tingling, mucsle wastage and walking like a shitting dog. AT THE SAME TIME – they discovered the Kidney issues and I was sent to a specialist at the City Hospital Nottingham. it took the Renal (kidneys) team a grand total of 9 days to see me, biopsy, diagnose me, give me a prognosis and create a treatment plan.

9 freekin’ days!

Anyway, after faffing and f*cking about, the first Neuro (I’ll refer to as ‘H’) ordered some electroconductivity tests and shrugged her shoulders, exclaiming “it’s interesting for sure”. A few months go by and another set of conduction tests ordered along with bloodys, MRI and Lumbar puncture, nothing for a few months.

Then a possible ‘diganosis’ of Multifocal Motor Neuropathy (MMN) – it’s worth remembering at this stage that this is a Chameleon disease for MND/ALS to which I was told this at the time and to not worry as “we’ll not make THAT diagnosis yet anyway.” A final treatment plan of IvIg Immunoglobulin infusions was ordered as this is the ONLY treatment for this degenerative disease – which will only get worse, disabling but NOT fatal. The ONLY thing that separates the diagnosese is the treatment – MMN is an Autoimmune in which the IVIG treatment is effective – if this treatment in ineffective – it’s NOT MMN but MND instead.

something happened later that year at Kings mill which saw its entire Neurology department go overnight, never to be seen again. 6-8 months later I get referred to a clinic in QMC – an MND clinic with a man who I’ll refer to as ‘W’
At the time it was widely accepted that the kidneys were literally pissing out the protein based IvIg at the time, so the IvIg was put on hold whilst I had a 6 month stint of Chemotherapy. Fast forward to the end of that year – Chemo was a success! Kidneys were back to a more tolerable level to the point I was classed as temprary remission.
Consequently I was put back onto the IvIg treatment – 2 runs to see what it would do, all the while monitoring my kidneys with so much clinical data you could shake a stick at! —- and the result?? —- Nothing! no change in Neurology at all.

all the while, the symptoms got worse, more muscle wastage, more fatigue, unable to walk, some slurred speach when tired. Asked ‘W’ a few months later who simply shrugged his shoulders and said “what do you expect?”

anyway, long story short, he sent me to Sheffield to see ‘S’ who assured me it “not the bad kind of MND yet so don’t worry” then sent me back to ‘W’ who’s longest time I was in seeing him was 7 minutes (yes, I timed it on my phone) and that was when he was conceding it ‘might be’ MND/PMA but was holding off a formal diagnosis “just in case”

‘W’ duly orders MORE conduction tests, then retires before any results can be discussed. I’m then BACK to ‘H’ this time still at QMC who orders yet ANOTHER Conduction test. At this point, I’ve not seen ‘H’ in nearly 3 years. She’s my original and first neuro, who I was referred away from! but I’m back with her and it is what it is… She ordered me to go on Rituximab – a well known drug in Neuro terms AND Renal but very expensive. I’ve seen numerous posts about it being a trial drug for those on MND to stop the neurons form being attacked/dying. So obviously I agreed whole heartedly that, alongside the Renal reasons, it’d be beneficial to at least try it!

Anyway, after that long but succinct recap, we’re back to this year and last month in which she has admitted that she’d been treating me for (and was thinking) it was still an autoimmune disease, now, you’d think, reading my notes would have prompted her to understand my case and not think this. but – “what do I expect?”

Those of you who have been reading my blog since the beginning, will remember all that as well as the reluctance to diagnose me oficially – yet MND or Poly Muscular Atrophy (lower MND) has been heavily discussed and talked about by ‘W’ and physios and the GP.

I fear the new diagnosis line she’s going down mentioning genetic conditions is a red herring – one thing my other professionals (renal and Physio/GP) quickly realised, was that I’m no Dr. but I do have a firm grasp and understanding of biology and My conditions specifically (I researched them).

So here I am now, struggling to walk (still) more muscles weaker and getting worse, in need of help and unable to get it, my Consultant has her head buried so deep in the sand that she’s looking to raise her head in austrailia!

Having come to terms with this over the last 2 years, after being told “it’s likely Lower MND, PMA, which leads to upper MND within 3-5 years typically – but, everyone’s different so we just don’t know” (by ‘W’ and ‘S’) To have ‘H’ take me back to square 1 is not helpful or wanted. She has however (after a somewhat heated comment from me) relented to it FINALLY being NOT what she has beeing thinking it was. my plathora of clinical data (from my rare kidney disease researchers) has finally convinced her (after finally actually looking at it) that she’s wrong and literally EVERYONE ELSE who has commented on me is right.

I have no Idea what to expect moving forwards – apart from yet ANOTHER conduction test – and my next appointment with ‘H’ – which incidentally is NEXT June 2024!!!!! So she’s in no real hurry to have me back in her office to discuss matters or come up with a prognosis or treatment plan!

I have no clue moving forwards, I want ot complain to Patient liason, but I did that a few years ago to no avail. I have an MND diagnosis in all but written form, no idea what that means for me, no way to access MND services, no way to access funding for home adjustments and no help with how this affects mental health of me or the family!

As I’m sure you’re all bored now, I’ll wrap it up. In summery, Scotland Good, QMC neuro’s Bad, another birthday down when 3 years ago I was told by one neuro that my 40th may not happen!

Anyway, as always, Don’t be a dick…
if you can https://gofund.me/4e0469e1 help the gofundme for the new off road wheelchair.

Dave x

Coronation street.

So there’s a long standing British drama called Coronation Street and they have been working on a plot line about mnd. Now there’s a few things to say about it… It’s both good and bad. Not the acting, but the principle of the premise.

It’s good to see the disease is on mainstream TV, but bad that it forms part of a drama. I think of recent months from doddie weir to rob burrows ‘awareness’ is being raised, as was the ice bucket challenge when it was a thing. Wonderful awareness and funds raised.

So far, what has struck me, is how a resounding echo of peoples Collective experiences match regards diagnosis: or seemingly lack thereof. People are told it’s “likely” to be mnd, then (if they’re lucky) given a prognosis, but even then, a diagnosis of bulbar onset (ALS) doesn’t come until breathing is affected.

I’m sure I’ve said all this before, years ago.. my point now is that absolutely nothing has changed. I kinda wanna scream forget the cure, and focus on a diagnosis. Then patients know what they are dealing with.

I hope they continue to show the reality of living with it, including all the good, as well as the bad. The dark humour that gets some of us through those stressful times.

But more importantly, I hope it highlights just how much patients with slow progression onset are simply left to it. With literally nothing for support until the beginning of the end!

Let’s hope it raises the profile of my blog and twitter account – lord knows I need it.

Anyway, more rants and ramblings soon, I promise. As always: don’t be a dick!

Dave

Living with it.

For most, living with mnd is a short-term sufferer thing. Now don’t get me wrong… I am very pleased to be in the category of long-term.. it’s the sufferer part that bugs me. I think people forget what it must be like for those affected to do everyday tasks.

Ever since I started to take control of my abilities and decided to go for a 4×4 wheelchair, the fundraising and awareness that takes place is almost exclusively for the research charities. I hear about and see so many wonderful people raising so much for these charities. (Which is great, by the way)

But.

The infrastructure in place by these charities, are so setup for the devastating short-term patients who need massive home changes quickly, but for patients who are diagnosed with a slow progression poly muscular atrophy (or similar lmnd variant) they are virtually ignored until the disease progression speeds up towards eol care.

It’s interesting to hear this same story repeated across the world: not only is a diagnosis bloody complicated to get (and long) but until things progress to that upper motor neuron stage, getting any input from medical services and neurologists is almost impossible. This worrying lack of support for long term sufferers is a standard it seems (in the UK at least) we are left to things on 9jr own with no clear timeline or prognosis for what to come next.

I’ve mentioned it before, but it doesn’t make it better… It’s very disheartening to know that you’re on your own until it gets to the stage where you finally see the end. I have zero interest in getting there any time soon, so I just have to make the most of a bad situation (Hence the fundraiser).

If you’re thinking about doing something to fundraise, find someone with the long term, they need help in all sorts of ways that are currently not being met.

This fundraising lark.

This fundraising lark is bloody hard work. I’m caught in a perpetual loop of “this is begging” Vs “how the hell did they get £84k for a £4k vet bill”

I kinda think this would be easier if I was furry. It’d certainly be easier to go viral. Cute and cuddly wins any race. Just a shame I’m not! It fills me with both hope and despair at the same time. Like it’s obvious that large goals like mine can be met, but also despair in how they manage to get there.

It all seems so slow at the moment. I know it’s early days, and don’t get me wrong. The donations received in my first 2 weeks have been extremely generous and I am very grateful for the support.

I’m planning on doing further fundraising post 4×4 wheelchair but for the mnda or other such groups. Like an otherwise impossible challenge for someone with mnd. But with the wheelchair – possible (if that makes sense).

If anyone has suggestions on how to increase traffic on the gofundme, please message me.

Many thanks people.

And remember; don’t be a dick!

Neurophysiotherapy.

UPDATE: So, as some will be aware, I visited the physio last week. It’s noteworthy that my physio (Amy) has been one of the most consistent people throughout my ordeal over the last 4 years.
I tend to go bi-anually these days as it’s seldom worth the frequency unless something major happens.

This months check up really highlighted the progression in an offical sense. Like I know how bad it is, I’ve experienced it on a daily basis, but there’s something about hearing a professional confrim things and tell you just how bad it is.

having 85% muscle LOSS on the left side and approx. 40% on the right, reducing the overall strength I have available.

So it means, I have to pick and chose what I do in a day. As almost everything has an affect on me these days, I only have so much energy and have to divide that up depending on what I want to do.

Sacrifices have to be made.

it’s interesting how and what choices are made, fortunately, I have the foldaway scooter to help with the basic tasks such as shopping, but where that’s not useable, it aint half a difficult choice to make sometimes as to if I can go or not!

Hence all this nonsense about fundraising for an off-road wheelchair. If anyone has ideas on where to share the info or what to do raise more, please do, shout up.

anyway,
Rant/update over!

Vlogging and fundraising.

So, some of you may have seen on my social media that I am looking to fundraise. The reasons are simple:

As a patient with ever growing mobility issues, the harsh reality of every day tasks is that they just get worse. Many of my regular subscribers will already know my views on certain things. My mobility is one of those things that I have traditionally just ‘got on with’ so to speak.

I do find myself increasingly struggling with everyday tasks, just moving around the house for example requires hand rails all around on most days, smaller steps, balance is an issue now where it wasn’t before. The atrophy to my left side now causes the rest of my body to work overtime. Which, makes me out of breath, high blood pressure and off balance when trying to walk independently.

So, having got to a point of no return, my head and heart now tell me “No!” I shouldn’t just “get on with it” and I don’t have to, I can and should have the life I had before hand back – or at least some. I’ve been looking at mobility scooters. I have one already (which you may remember for a few years ago) this light weight foldable scooter does, however, have its only set of issues in that it only really does flat road/town/pathways only. It is (despite its light weight) too heavy for me to manage on my own and therefore I lose any independence gained from it.

I’ve found a 4×4 wheelchair/scooter. This would completely hand back my independence, albeit for the immediate future. Allowing me to go back into the countryside, goto military shows, go for walks around Sherwood forest again with the family. It is my belief that the preservation of lifestyle and quality of life at this stage of the disease. I’ve had my years of making do, of getting on with the hand I’ve been dealt. It’s time to move into the next phase of dealing with reality.

As you can see, the terrain hopper is an extremely capable vehicle. It’s a class 3 mobility scooter so it’s both road and pathway legal. It has its downsides of course, namely it’s inability to be packed away into the boot of the car. A standard class 3 (large mobility scooter) you’d go from your home and around town, my foldaway scooter like others are the midway point. It does mean, that I’d need a trailer to transport the scooter to locations of desire such as Sherwood forest. It’s not a problem, just requires extra planning for parking etc.

The biggest issue I personally face with this, is financing it. Such a useful, capable vehicle costs way more than anything else on the market. A standard class 3 costs about £3-4K this is contrasted by the tramper off-road scooters (as seen on top gear) going for between £8-12K. The terrain hopper is an eye watering £16.5-18K (depending on batteries).

If you wanted an off-road scooter as a disabled person, the cost is catastrophic. It is simply not attainable to the regular disabled person unless they have significant funding at their disposal. Grants are available in the UK, but they max out at £3K (which, given the cost of a standard class 3 here is £3k I get that!) This doesn’t work for people like me who would want a lifestyle back that I once had.

Making the decision to get one has been an interesting one, on one hand, I can’t afford it and never will – it’s too much money and why should I? I’ve always tried to keep my head down, not make a fuss and get on with it as there’s nothing I can do about it. But the more I find my mental health affected by this feeling of imprisonment, the more I feel obliged to do something about it.

There’s nothing worse than feeling a prisoner in your own home or even body. Especially when you think you are becoming a burden onto others.

It was recommended to me that I start a gofund me. Which is (I agree) a good idea. But things are tight for everyone, is it ok to ask others for money to fund something so expensive for just me? Besides, it’ll probably take years (which I don’t have) so is it actually worth it??? After talking to a few people, friends and family. I’ve decided to go for it.

I’ve created a Facebook page for it along with my Instagram account. I’ve been encouraged to take up vlogging (video blogging) to add to this, giving updates, insights and even sometimes highlighting the everyday plight. I am pretty shit at updating people, so this might be good. Encouragement for me to actually do more blogging and the like.

Anyway…

I’ve gone one long enough, I’ll include links below for people. Please do let me know if you prefer writing and videos and any general feedback as the weeks go by. As usual, these are my own opinions, yours may vary and that’s ok. But let me know your thoughts.

Once again many thanks, take care folks, and don’t be a Dick!

For those interested:

Instagram

Facebook page

Go fund me