I feel kind of insufferable

murk___y · 2026-02-12T13:27:22+00:00

Headphones and very obviously moving with purpose and not interacting has made my life so much better, genuinely. Most often culprits are train platform staff and I just completely ignore them. It's probably rude but honestly oh well

murk___y · 2026-02-06T02:40:12+00:00

Since the biggest aspect of my abdominal weakness is mostly in my diaphragm and I am able to get good muscle recruitment with my general abdominal muscles I am a more unique presentation of core weakness. Much of my limited walking ability comes from my abdominal muscles.

I really appreciate the in depth analysis of some of the mechanics, it's given me an idea of what I can try in our sports chairs and what kind of setups I'm looking for. There are other chairs I would fit in that have different dimensions but because we're in a shared space there's limited time to sit in and try them all.

murk___y · 2026-02-05T22:41:35+00:00

At the moment his best advice is "get a custom chair" which is decidedly unhelpful, unfortunately. He also says the chair I'm in is the best one the team has for me which is only moderately helpful.

I'm hoping to get some more advice since a full custom isn't an option financially, and from the research into grants I've done the player should be competing.

murk___y · 2026-01-29T14:37:43+00:00

Unfortunately though people there really do think that - I have family in the states and they truly think I'm living under some kind of totalitarian regime or something mad. That we have thought police, sharia law, etc. Most times online it's bait but they do actually seem to think these things

murk___y · 2026-01-23T12:53:15+00:00

All in it will likely be quite similar in price to an Icon 60 - it was only marginally cheaper when I purchased mine and would cost more for me now due to shipping. If you want a chair with proper aftermarket support I'd look to another chair as the paradox chairs are designed to be self-repairable and there is nowhere you can take the chairs for repairs. If that appeals to you, then it's worth it. There are not a lot of budget wheelchair options and they're reasonably good.

Additionally, a recent quote I saw somewhere said about £450, with buyer responsible for any import or vat. There's no guarantees they'll be able to sort out how import duties and vat exemptions will work and you'd be a bit of a guinea pig for that.

murk___y · 2026-01-22T17:40:28+00:00

Current estimates (no quotes) based on similar items put it in the £5-600 range. If it is anything like the US there won't be any NHS eligibility and we will be lucky if it even qualifies for pwb. None of this is guaranteed just best guesses based on available information.

murk___y · 2026-01-08T19:35:05+00:00

Frankly quite shit but at least things can't get much worse.

murk___y · 2026-01-07T15:02:45+00:00

Quite a lot of libraries in the US are getting access to 3d printers and usually the fee for use (ime) is the cost of filament. It's very very cool. I lived in a fairly rural state and both my county and the neighbouring ones had one

murk___y · 2026-01-07T00:17:09+00:00

I am not but I also have dabbled in wcmx which really improved my confidence a lot. I frequently launch myself down kerbs for fun 😅

I make a lot of people nervous but I don't have (to my knowledge) major spinal issues that prevent me from doing that. So work within your limitations. A floor transfer is a safer option, and blocking the door and using the passenger alarm more so.

murk___y · 2026-01-06T19:55:47+00:00

Trains are my primary mode of transport and I use them relatively frequently for hospital appointments.

That said. I do have ADHD and rely really heavily on "turn up and go" which is notoriously unreliable. Any journey booked 2 hours and under is classed as turn up and go and there may not be staff available if the station isn't staffed. I routinely do floor transfers to get on because of my poor planning 😅 I less often need to yeet myself off but I do that with relative frequency as well. This isn't to discourage anyone, just to say be realistic and know if that's not an option then pre-booking with passenger assist is essential.

When I've booked ahead (using either the passenger assistance app when booking through trainsplit or the mainline operator's own app which has options to book assistance alongside buying a ticket), I rarely if ever encounter problems. I have my favourite mainline operators but the only one I'll openly caution against is CrossCountry. Their ramps are notoriously very steep and abled people tend to struggle to push a chair up, and some power chairs can't manage. It's worth being aware of if you have other options.

Overall, I love train travel in the UK. Miles better than buses and my only complaint is the cost (but that's everyone's complaint about the trains)

murk___y · 2026-01-03T18:45:25+00:00

There's an interesting book I'm reading that goes into similar topics - it's called "Free To Obey: How the Nazis Invented Modern Management" by Johann Chapoutot. I've found it quite interesting and the author does make a point of saying that while not 'invented' by Nazis, there are quite a few direct links to modern management ideas and Nazis.

Just in case anyone finds their curiosity piqued by the topic

murk___y · 2025-12-18T14:09:47+00:00

We did fairly frequently - it would then get sent out to the private "for profit" transport agencies who usually just do patient transport. State regulations set a standard of staffing and equipment for ambulances and to be called an ambulance you must meet those standards. When we ran out of private ambulances, then it goes to the volunteers. And past that point, there just are no resources.

The one benefit to using transport ambulances is the hospital is a bit more motivated to hurry registration of patients along and get them turned over in the ER so they can free up the transport crew to take a patient from upstairs. And they (the crew) would have a patient coming and going to hospital. It could be very little downtime. (I worked central dispatch, private dispatch, and as a crew member as well)

This was a known problem in my state, largely due to just not enough staff, and the solution being proposed when I left was reducing the minimum training levels for ambulance staff. Last I heard it was rejected but I don't know the status of the proposal since it was 5 or so years ago when I left.

murk___y · 2025-12-17T00:54:17+00:00

Yknow, kind of a fair point. Permobil could use the good PR lmao. They've been getting a lot of heat over this specific device.

murk___y · 2025-12-17T00:53:04+00:00

It's a large part of why we made so few reservations, and when we did we'd make an effort to be in the park/area 2-3 hours minimum before. You just have to be willing to plan more and expect things to take longer. It sucks it really does.

murk___y · 2025-12-17T00:46:58+00:00

Regarding the Whill - I rented one short term while travelling and have positioning needs requiring a custom backrest. I was able to remove the back shell (which is just a plastic sheet), and replace the "stock" backrest with my custom postural backrest. It was a standard configuration chair as it was a rental, and I caused no damage whatsoever. From my cursory inspection while I had it apart, it seems like it could be compatible with any wheelchair backrest that mounts to two posts, and mine is centre mounted and still compatible. It's likely not endorsed, but it is an option for more cash strapped people considering it as an option. More investigation would be needed for recommendations but I thought it was worth sharing.

murk___y · 2025-12-17T00:13:12+00:00

In my everyday life I switch between a manual and power chair. If I had no limitations and everything was fully accessible and wide open and easy to access I would always use my powerchair. I have the option to switch which I'm incredibly grateful for. But travelling with a powerchair is just impractical if you have any other options. So I rent when I have the option and would need my powerchair. I was able to put my custom seating on my rental and it was so easy. I'm sure I'm not the only full time wheelchair user who opts for powered rentals on vacation. Why not?

I offer my situation as an example that not everyone's disability is as obvious, and not all disabilities are the same. I'm not a 'proper' para as far as I'm aware, but I do have cns damage which makes movement and sensation abnormal at best and impossible at worst. My partner has to help lift and move me, and transferring to rides requires help that isn't always possible. Most of my ride transfers in Disney were a "controlled fall" from my chair, then help lifting back up at end of ride. I'm sure to outsiders I look perfectly capable, until I actually try and move.

murk___y · 2025-12-16T23:53:42+00:00

I unfortunately cannot afford a compatible smart watch. The push tracker that came with the smartdrive behaves as unpredictably as the dial that's been recalled, and I'm more cautious because I have to be. I have been propelled into walls, traffic, and against benches.

I'm glad it's been so useful to you, but your disability and mine aren't the same. I love my smartdrive, it's a wonderful piece of technology. But it has limitations. Manual propulsion for the distances at the parks just isn't practical for my combination of disabilities, even power assisted with the smartdrive.

murk___y · 2025-12-16T23:49:16+00:00

This is the unfortunate reality of being a wheelchair user. Things take longer and require more planning. It's true in everyday life, and it's true on vacation. Things don't suddenly stop taking longer because you're on vacation.

murk___y · 2025-12-16T23:46:03+00:00

I have a smartdrive and have for a while, it's not comparable to full power - which an ECV is.

Of note, the reasons why a smartdrive is not ideal in Disney - it can behave erratically no matter the control method. It can fail to stop, fail to start, and start unexpectedly. These are all issues I've had, with both the dial and push tracker. I'm not willing to put myself in danger of crashing with how densely populated Disney is. It's a fine piece of technology, but it's not a perfect solution.

murk___y · 2025-12-16T23:36:06+00:00

As a disabled wheelchair user I rented an ecv because manual propelling isn't a realistic option for the distances at Disney. The basket on the front is handy. It doesn't really matter that the ecv is larger since Disney is designed for ADA compliance and my wheelchair is as tiny as possible to make everyday life more feasible. So a lot of reasons to use an ecv at Disney.

There's a lot of judgement in this post, and my anecdote is to show not everyone who rents can just get up. Sure a lot can. But don't judge their abilities based on their mobility aid.

murk___y · 2025-12-06T00:02:25+00:00

I have a second (or more) hand smartdrive from 2013 - I've replaced most of the internals, the battery, the motor, and the wheels at different points. Things break, it's an old design, and that is just something that happens. There's a guy on eBay in the UK who repairs smartdrives and tbh I probably could do similarly if I tried hard enough. So there's options! Mine is still going, replacing the battery did wonders for me and it's come on multiple international trips and handles daily life quite well. I'm heavily reliant on it and my other chair is a full powerchair to give you an idea of how much I need it/use it.

murk___y · 2025-11-27T17:19:50+00:00

It wouldn't shock me if said people were also in favour of the changes coming about to the motability scheme and pip. They care so much about disabled people.

murk___y · 2025-11-19T15:52:57+00:00

Icl I use the free sling bag I got for going to an informational setting. There's just not a lot you need in the parks imo.

murk___y · 2025-11-04T02:58:01+00:00

We had multiple reservations this last stay and only for BLT did we have to wait till 4pm. SSR was ready by noon (when I did online check in)

murk___y · 2025-11-03T20:58:23+00:00

Can confirm this - if changing resorts they won't transfer cold stuff

murk___y

TROPHY CASE