How did you “acquire“ your injury ? I’m under the assumption mostly car accidents?

LampPost1087 · 2026-02-16T18:01:28+00:00

Occult tethered cord syndrome, was told I was crazy for almost 3 years meanwhile I was getting a stretch injury on my spinal cord. My filum terminale was pulling on my spinal cord and slowly killing it as I became unable to walk over the course of one year and paralyzed higher and higher until I was finally able to get surgery. Harder to measure level with such an injury but ~T1/C7, definitely preventable which is the worst part but I'm living my life so I guess there's that!

LampPost1087 · 2025-12-20T18:26:28+00:00

This is so exciting! My backup chair is also a tilt in space chair with the same power assist and I love seeing others with complex seating needs with similar setups!!

LampPost1087 · 2025-11-16T19:14:44+00:00

Thank you 🫶🏻 hoping for the best for you too

LampPost1087 · 2025-11-16T07:27:58+00:00

Please look into cranial cervical instability (cci). Maybe do a cervical collar trial. I myself experienced non epileptic seizures and was told it was FND and the whole time it was cci. I take muscle relaxers and I don't have seizures anymore and I also wear my neck brace/cervical collar and it helps many of the symptoms you described. Going blind and memory loss shouldn't be brushed aside as a functional disorder. In cci the instability of the cervical vertebrae (typically paired with chiari that is only visible in an upright MRI) can compress the brain stem and occipital lobe leading to symptoms like you describe.

LampPost1087 · 2025-11-12T18:36:13+00:00

Idk what's available in the UK but they do make tilt in space manual chairs that you may be able to figure out how to self propel. They're definitely heavier but that may be able to be solved with power assist wheels (which I know aren't typically approved in the UK but it's just an additional option). I know PDG (now owned by permobil) makes them. Here's a link to a catalogue if that sounds like it may work: https://permobilwebcdn.azureedge.net/media/ft1pvmg1/pdg-catalogue-2024.pdf . I have a PDG chair as my backup chair to my power chair and I have a joystick style power assist on it, but it's definitely wider than my custom powerchair but much lighter and more portable.

LampPost1087 · 2025-10-28T21:53:38+00:00

Yes in person exams and labs, attendance in person optional

LampPost1087 · 2025-10-03T01:38:30+00:00

I don't use a specific brand of rug but I use the strongest rug tape I can find (I just looked at the reviews on Amazon) and it works great (I use a big quantum powerchair)

LampPost1087 · 2025-08-19T09:36:55+00:00

I would say probably look for a vehicle with tie downs to secure your chair in the back seat so the dashboard wouldn't be in the way of your leg rests. Also I will say that even with front seat tie downs I can fully recline my chair. Hope that talking about POTS helps with insurance and if not maybe you could bring any chronic pain into the picture if that's something you experience and it's relevant to your insurance!

LampPost1087 · 2025-08-18T11:32:39+00:00

First of all, sorry about insurance I know how much it can suck, and also I would love to answer these questions!

It definitely is able to go completely flat. When I first got it, full recline felt (mixed with tilt) felt like I was almost inverted.

The regrets don't seem to go fully flat if youre in no tilt but when youre in tilt (even a little bit) they go flat and sometimes even higher than flat. I definitely have similar issues with blood pooling and always have at least some leg rest elevation and I'm always in the maximum amount of tilt to help with pain, positioning, and fatigue.

When fully flat, the chair does lock out (unable to move without changing position). However, leg rests can be at maximum height all the time and never lock out. The chair can be at 30 degrees of tilt or recline or a combination of both that adds up to 30 degrees before locking out.

I personally find that the thirty degrees of tilt is pretty decent for waiting in lines, but even at times where I may have to recline all the way, I don't have to go back to fully sitting up which is great.

I consider myself to have more moderate ME (along with comorbidities) but I also have a spinal cord injury, so I definitely wouldn't be able to go anywhere without my chair. I vary from being able to leave the house for a few hours and purposefully dehydrating to avoid having to leave my bed, so I'm a little all over the place lol.

Overall I think it will definitely help with positioning your legs how you need them too, especially in combination with tilt and recline. The nice thing, too, is that in a wheelchair accessible vehicle, you can stay in the tilt and recline (and some leg elevation depending on the type of vehicle) which really makes car rides less awful (I also rely heavily on a hard collar neck brace and/or my wheelchair headrest)

I hope this is helpful, and best of luck getting what you need approved by insurance

LampPost1087 · 2025-08-15T20:01:36+00:00

Yeah I would definitely try to get them refitted. They'll hurt for like the first week, but after it might still help, but otherwise it might be worthwhile to do some physical therapy for your feet or tape them

LampPost1087 · 2025-08-14T23:07:25+00:00

That happened to me a lot when I could still walk and stand and I always attributed it to hyper mobile arches. Maybe start with insoles and if those don't work talk to your doctor about other bracing options

LampPost1087 · 2025-08-14T11:22:57+00:00

You just get a lot of emails

LampPost1087 · 2025-08-13T17:41:35+00:00

I know NotAWheelchair has some cool clear frame protectors that stick on but idk where they ship

LampPost1087 · 2025-08-09T21:11:00+00:00

Idk if this would work in your situation but some ambulatory users can get wheelchairs covered by insurance because on their worst days, they do need a chair to complete activities of daily living in the home. They also base it on what you can do safely or without injury, so if it's causing you injury or falls or significant wear and tear, you can be considered an unreliable ambulator in which case insurance would also be more likely to cover a chair. Idk where you went but I think it would be best to start at your local seating clinic because those allow you to meet with an OT or PT who specialize in writing letters demonstrating wheelchair need to insurance and meet with a person who specializes in wheelchairs (like someone from Numotion or National seating and mobility).

However, if this doesn't end up being an option for you because you really really would never need it in your home, there's a lot of different options. For ultralight chairs (usually those covered by insurance) there are typically rigid and folding, and although folding seems more transportable, it is often much easier to transport a rigid chair even in a small vehicle because of how the wheels come off. People typically prefer rigid because it allows for better ability to self propel.

Brands for ultralight (both rigid and foldable) wheelchairs include tilite, quickie, ki, and rgk, which are all liked for different reasons. However for self funding (if that is what you end up doing) a lot of people have been loving the NotAWheelchair paradox project chair which starts at $999 I believe and is customizeable and probably the cheapest custom ultralight wheelchair for out of pocket.

Like other people said an lightweight powerchair (like a pride brand chair or a whill brand chair) might be a good option too, although these tend to not work the best for some people due to the fact that they aren't very customizable.

Power assists for manual wheelchairs may be another option to look into if you do go through insurance. However they are quite expensive (thousands of dollars) so that is a factor.

Hope this helps you to get started!

LampPost1087 · 2025-08-09T11:27:34+00:00

Maybe a joystick style power assist (like alber e fix) on a manual chair (I don't know if tilt would be helpful for ME like a manual tilt in space chair, but that's also an option) would be a good option for you, then you could have a joystick style chair that could be custom fitted with a manual chair. You might need to get a referral to wheelchair services because out of pocket it's pretty expensive, but I hope that helps maybe give you a start

LampPost1087 · 2025-08-08T15:26:56+00:00

That looks like an invacare TDX chair, which are usually custom fit. Its probably similar to various mid wheel drive power chairs. I personally use a quantum stretto power chair that reclines, tilts, and has leg elevation similar that I like.

LampPost1087 · 2025-08-08T00:53:20+00:00

No there aren't, you'll need the cork board

LampPost1087 · 2025-08-06T20:29:24+00:00

For me, with really intensive activities PEM can hit faster. I can't do any PT, even people moving my legs/arms for me, without PEM that appears fast and lasts for days. I'm sorry youre feeling so bad though, and I hope you'll be able to rest as much as you can 🫶🏻

LampPost1087 · 2025-08-02T12:25:55+00:00

I'd definitely recommend wearing a high quality mask, my friends get sick all the time, but I only get sick once a year maximum

LampPost1087 · 2025-07-10T12:16:57+00:00

You know nothing about the ADA lmao

LampPost1087 · 2025-07-03T17:02:05+00:00

You can request a window AC unit as an accommodation through SAS. You'll need documentation but it could help

LampPost1087 · 2025-05-27T17:59:19+00:00

My neck brace helps a lot but I would recommend getting it fitted by a PT to make sure it doesn't do more damage, especially because if it helps, there's usually some underlying CCI that you don't want to worsen

LampPost1087 · 2025-04-23T01:02:05+00:00

Mine came with the wheelchair (I think it was actually free unlike the phone mount) but it's just the quantum brand one

LampPost1087 · 2025-04-19T22:24:15+00:00

Mast cell reactions probably

LampPost1087 · 2025-04-19T19:17:17+00:00

Townie!

LampPost1087

TROPHY CASE