Mobility aids

[onyx bison]

It happens every now and then, not every day but it’s not a very rare occurrence

[fierce isle]

i wish my like were like that but they just stiff and asff

[onyx bison]

Ok so I need some advice. I’m getting some really bad pains, especially in my shoulder which I use to carry my laptop bag and guitar. I do physio, two different types (one from the physio and one from my podiatrist), is it time to see the doctor again? Should I do my physio while I’m in pain? My shoulder really hurts but I’m meant to do it today, most of my physio is centred on my legs and lower body, my legs have also been getting pains again to a degree that’s annoying and can make walking painful but manageable, I’m used to it. This time I wasn’t able to mask the pain after a certain point during class, it’s been going for around 3 hours now but the last 30 minutes it got so bad that I was having to try and focus on breathing to try and make it go away (which obviously didn’t work). I’ve figured out that my pains are related to high stress and exhaustion, which is likely coming from school. At the moment it’s the start of week 7 out of 10, any advice is very appreciated bc I don’t know how much longer I’ll be able to tolerate this without doing anything about it, I have put this in the hypermobility thread as well

[meager eagle]

I think it's normal to not immediately know how to cope with stuff like that.

[meager eagle]

Might possibly get something like this

[meager eagle]

I honestly feel 10000x better using it, when I tried the demo

Lasting impression. I doubt it's just an initial rush of dopamine.

[primal tusk]

Ooh that looks awesome

[primal tusk]

Im so stressed out since i also want to buy a small electric wheelchair for longer distances because of my HSD but my parents cant fathom why i would need one for that, they keep saying things like "you can walk, you dont need one" and "your legs will become weak if you use a wheelchair" well maybe but they also get weak from me not going out much at all!

[meager eagle]

I sometimes have similar worries about a few people who deal with my case suddenly hearing I need one. But they did see me use them before, just for different reasons.

I'm in the process of getting one. I can't even walk to the park next door and come back home without my body begging me to stop walking and being so tired.

[primal tusk]

I'm so sorry you struggle like that aswel :/ i hope you get all the care and accommodations you need!

[fierce isle]

Okay so I've been going college for 2 days now my body couldn't handle it yesterday I didn't listen to it I went in today worst dession ever bc now I can barley move or get clothes off I don't know if it's because I'm sitting down too much ( I have lessons for an hour and half) I get 15 mins of walking between classes always and I have been getting up to stretch and even move in class or it could be because I'm moving around not enough I've been taking a crutch into college to help and it hasn't my legs and lower back are killing me even with meds I'm thinking about using my wheelchair but there's slopes and not enough space to get thru things at times but at the same time I don't want to use my wheelchair due to people having me he dirty looks or teachers asking why I'm using a wheelchair when the other day I could walk I thought secondary school was bad with the pain I was in now it's even worser
Also for the slopes and going up hill and down I don't know If anyone would be able to help me and I honestly don't wanna fall out of my wheelchair again I don't wanna miss out on the learning either one of my tutors thinks it's the course that's made me bad but she don't understand it's not that
I honestly don't know what to do:/

[frail grove]

Use a wheelchair-and this part depends on where you live or if you can afford it but an electric wheelchair might be a good sometimes help. I would recommend seeing an OT and seeing if they can prescribe one and get it even partially funded because they are insanely expensive

Also I have a tilt function on my wheelchair which is helpful when I need to sit for longer periods, for me tilting it back takes the weight off my hips for a bit. It is very unique to your situation what would be best but I would also recommend that you try and walk when you can (not to that degree of burnout obviously but) even if it’s just inside because I learned the hard way how easy it can be to lose that skill.

And you don’t need to worry about what people think. You can explain it to those important to you and if they’re not those important people they don’t matter and have enough of their own ||shit|| to deal with. Or you could use it as a conversation starter if you’re interested in educating people about dynamic/fluctuating disabilities.
It’s really up to you. Personally if I was getting a lot of comments I’d attach a laminated frequently asked questions sheet onto the chair 😜🤍

[wide walrus]

GG @frail grove, you just advanced to level 4!

[frail grove]

Also question. What does that bot do if anything? Are there any perks to advancing levels?^^^

[fierce isle]

I got a manual one but it took like 6 week to make but I don't know if they'll be able to give me an electric one and I'm still on the waiting list for physio but it's aimed for like people that have neurological issues like me

[fierce isle]

Same thing happend with me when I started using my crutch but I just told people to stfu

[fierce isle]

I've never actually wondered what it was i just thought it was like a social level but I'm not suree

[warm aspen]

oh dear i do believe i fit the criteria of reasons to get a mobility aid

this would not be a problem if i did not have parents who were very unsupportive of this idea

[fierce isle]

Why don't they get that you need some sort of mobility aid??

[warm aspen]

i acc do not know

[fierce isle]

Can you get a mobility aid without them being with you so they can't say much but depends what type of mobility aid you need or require

[wicked sequoia]

As someone who's parents dont really want them to have mobility aids, canes are really easy to have- especially if they are fordable, they can also be a way to ease your parents in too

[onyx bison]

So I’m in a situation and I’m not sure what to do. I just learned that we have a wheelchair, it is intended to be for my grandpa if he ever accepts that he can’t walk very far anymore. He doesn’t live with us, and the wheelchair is at my house so he would only use it when my mum brings it to him for outings that involve walking. I’ve been wondering if I should ask if I could try it next time I go out with my friends to the mall or something, bc I do often experience pain afterwards even tho I am doing both of my physios when I’m meant to. I am currently in a flare up again likely because of school stress, exhaustion and burn out. I’m not sure if I should even try it tho or even just ask bc I’m really sure she’s just going to say no. When I first mentioned mobility aids she instantly questioned me further and I’m pretty sure she’s of the firm stance that I don’t need one, which is fair enough bc I can walk fine, I just get pains during or after. For me these pains are painful yes, but not much more than an inconvenience possibly bc I’m just used to them at this point. Any advice on what I should do or similar situations? I want to ask but I’m scared of her saying no

[onyx bison]

My brain is still nagging me about it lol, I’m actually starting to wonder if my physio is actually causing the pain now. The past few days that ive done my physio (today included) my leg pains seem to appear again

[gusty igloo]

I mean I was in a slightly simmilar situation and if you can just try it around the house / around the block when no one is home just to get a feel for it and see if it does help? Thats what I did and I made sure I was really confident with my aid when I asked / told my mum I would be using it. And now a few years later my mum even steals my mobility aids sometimes for her bad knees. But I recognise that everyone's families work differently so this may not work for you!

[pastel mulch]

Does anyone have experience with amazon wheelchairs? Like active wheelchairs.
Like that in the picture for example. Because I don't have the resources for a custom, also because I'm still in the diagnostic process

[gusty igloo]

I used the Karma Ergo Lite deluxe wheelchair (self propelled) it dosent look as nice as that one - but you can pick what size you want, its super lightweight and was reccomended by my ot.

[whole viper]

Mine is very similar and from amazon... i love mine

[pastel mulch]

Could u send me a link?

[wide walrus]

GG @pastel mulch, you just advanced to level 2!

[arctic cove]

picking up my first ever wheelchair today! im very scared but also excited.

[fierce isle]

What kind of wheelchair you getting?:)

[arctic cove]

honestly i dont know. its kind of an emergency solution via a help organisation for homeless people. if it seems helpful to me, my doctor will give me a prescribition to get a fitted one by insurance.
i can send a picture of it if a have it later

[fierce isle]

That would be helpful as I am wanting like a active wheelchair it's not like I don't like the one I have right now there's just some things that could help me. Also are you in the UK?

[arctic cove]

no, germany.

[fierce isle]

Is the health care system better in Germany??

[arctic cove]

it did not work out the way i wanted to anyway. i was under the impression they would give me a standart used hospital chair. i dont not expect it to be a broken one from 1950

[arctic cove]

in worldwide comparison its pretty good i think. but still a lot of fighting for stuff

[fierce isle]

Why have they given you a broken one from 1950?

[fierce isle]

So like basic health care you still have to fight for its crap

[arctic cove]

it was the only one they could get their hands on. mind you this is outside of insurance, its a aid organisation for very poor and homeless people

wait let me get a picture

it would look nice in a museum lol

trying to get one off of ebay with the help of my dad now

[fierce isle]

Are you going to get a new wheelchair that isn't like unusable?

[arctic cove]

yes, because as shitty as this one is, it still felt a little easier than walking

[fierce isle]

Are you getting a similar one to that that isn't broken or a active one??

[fierce isle]

I can defo relate that

[arctic cove]

active is the plan of the future via insurance, i cant pay for it myself. for now im trying to get something usable as quick as possible

[fierce isle]

I hope you find a wheelchair that is better than above and is comfortable!!

[onyx bison]

Wondering which mobility aid/s would work best for me. The best way to prevent my pain (which comes from overuse of limbs, eg walking around to much makes my legs hurt and having a bag on my shoulder can hurt it) is by using said limbs less, so a wheelchair would work but feels a bit excessive for me because I can walk just fine. I was also thinking of a rollator but those are more for balance and I have pretty decent balance as well. Any recommendations are very welcome

I want to talk to my parents about this again but I don’t want to be shut down

My mum has proposed knee braces but now denies ever mentioning them

[meager eagle]

I used a walker before for non-balance reasons

[night lynx]

Been loving my special needs stroler, my knees on flare up days when I have to go out feel much better

[arctic cove]

her name is judie.

[fierce isle]

I've got a similar one but might get one the only has one footplate so I can use a attachment

[arctic cove]

makes sense!

[fierce isle]

You gonna decorate yours??:)

[arctic cove]

yess! im actually considering what to add to her right now. sadly i dont have access to all my stickers and patches right now. but ill figure somethin

[fierce isle]

If you know how to crochet you could do something on the big wheels and like bike spoke things can work foe the wheels aswell:)

But defo show me when you've decorated it:)

[arctic cove]

i settled for stripes. mainly because black pvc tape is the only thing i can use for now. nowhere near to be done, but i made some progress

[fierce isle]

I might do purple for mine I never thought of doing that it'd done similar to one of my crutches but that looks fuckin sickkk

[meager eagle]

I kinda want to get hiking sticks

It's better for me than a cane I guess

I can also use it when I get visual flares because I still from time to time experience them

[river violet]

Hey gang. Ive been using a crutch to support my leg whilst walking for a while, and i cant come off it until my pain goes away, and it wont go away until i get custom insoles and afos, and im not getting them for at least 6 more months. My dad doesn’t understand the excercises physio gave me are for strengthening my leg, and arent supposed to help with the pain. Recently hes been trying to bribe me into coming off the crutch. He told me when i get my dog he doesnt want me walking it with the crutch - what?! And he told me if im going to the gym he doesnt want me taking my crutch because its a public place.

I have tried to explain to him over and over but he genuinely doesnt believe me. Has anyone been through the same thing or have any suggestions on how to get ignorant people to listen? Im seriously questioning his intelligence at this point

[frail grove]

Firstly, I’m sorry, that’s awful to hear.
How do your doctors or physio approach it? Would it be worth having one of them talk to your dad, even as a one off to explain the situation from a neutral/professional party?

[zinc abyss]

wheelchair color options 👀 /pos

(french, sorry)

[wicked sequoia]

The royal blue looks cool

[vivid estuary]

I learnt yesterday that if you put your crutches upside down facing a wall they won’t fall over. Don’t know why I didn’t realize this sooner.

[waxen latch]

That is so smart omg /sincere

[gusty igloo]

I have matte black and love it because then I can change out my decorations and it always looks good!! But all the colours look beautiful! Hard to go wrong 🙂

[zinc abyss]

yeah!! i think im gonna end up picking matte black (or gloss black idk yet) for the same reason!!
i kinda wanted to get it in desert green, but its a bit too.. "bland"? idk.

[celest ivy]

Guess who finally got a cane?

Me :D

[zinc abyss]

yay!

[celest ivy]

I’m not quite sure how I want to have the height yet since it’s a bit more complicated for me, I’ve been told but it’s pretty nice to walk with

( I have very long arms, I’ve been told that if I have it at my hip height that would be bad on my arm and if I have it wrist height then it would be bad for my back so I’m still trying to figure a good middle setting )

( I have it between those two for now and that seems to be going alright )

[celest ivy]

I dared to think I didn’t need the cane for 5 minutes and my legs nearly fell out under me

How???

Apparently my body’s figured the glory of using one and decided we are to use it for all walking

It’s been half a day so I don’t think it’s got anything to do with getting used to one. It honestly might just be that I notice the pain more now?

[onyx bison]

Once again wondering if I need a mobility aid. Didn’t do my physio this afternoon (have been consistent with doing it twice a week for a while now) and I’m immediately in pain again. There’s such a think line and I’m still in pain anyway, the physio just aims to reduce it. I feel like I’m ‘not disabled enough’ or ‘not in enough pain’ to need one tho. I feel like my parents would just say I don’t need one, but they don’t understand how well I can mask my physical and mental pain. Wondering what you guys think?

[solemn gale]

Generally speaking, if you’re wondering whether you need one, that’s already a good sign that yes you do need one

[kind tree]

If a mobility aid would help you do something = that is what mobility aids were meant for

[onyx bison]

Thanks!!! Now to figure out which would help me most, how to get it and to convince my parents that my physio alone won’t be enough

[meager eagle]

Hybrid stroller/wheelchair concept

[river violet]

On my way to an appointment with a surgeon that will decide whether i nees surgery or orthotics for my short achilles (if the surgeon recommends surgery im going to politely decline anyways 🤩)

[dense sphinx]

does anyone have any comparisons between a walking stick Vs one crutch? is the support any different?

for reference I currently use just a walking stick 🙂

[meager eagle]

Dunno but I have a cane and two trekking sticks

I don't use them a whole lot

Depends on your mobility needs, posture, etc

pressure applied on the aid

also if you can fold/store it

[thorn nova]

Generally a crutch provides a bit more support because you can put more weight through it and it's more stable than a cane
(I use a cane, crutches and sometimes just one crutch)

[wide walrus]

GG @thorn nova, you just advanced to level 4!

[dense sphinx]

ooh gotcha, thank you!
also, we have the same name!
always hard finding the same spelling 🤣

[coarse schooner]

Finally got crutches!!! And they FOLD?!😮

BTW does anyone know how to get this rubber thing off?

[solemn gale]

The ferrule? You kind of just have to pull on it/try to wiggle it off

[coarse schooner]

Oki thank u🫡

[wide walrus]

GG @coarse schooner, you just advanced to level 2!

[solemn gale]

Just make sure you’re replacing it and not walking around without one lol

Yeah np

[devout tangle]

How do I explain to my parents that a wheelchair will not make me lazy and prevent me from moving ever

?

[arctic cove]

i hate thats such common experience in young disabled ppl, it sucks :(
some points you could bring up :

1. it might make you move/ get out more because you can prevent exhaustion, pain, falling (whatever applies)
2. a wheelchair is there to make up or prevent disablities, not for ppl to be more "lazy" (which is ableism btw).
3. try to find articles or videos of people with a similar disability that also use a wheelchair and it has helped them
4. you are probably going to be a little more independent
5. make a doctors appointment and have the doctor explain it to them if you can
6. rent out a wheelchair and try it for some time. my dad was against one too at first but after we went out together with the chair, he realized how much of a relief it was for me
7. why would you use a chair or any kind of aid in a society so ableist. its not a light hearted desicion to make because the world is not built for disabled people
8. you are not any less or more disabled with or without a chair, but it will improve your quality of life which is very important!
9. if thats possible to you health and time wise, you could make an agreement with your parents that you are going to do small workouts/ strenght training/ stretching to help prevent futher loss of mobility.

[devout tangle]

Thank you SO MUCH!!! This tips are really helpful

[severe nova]

hi!! i really want to get my first walking stick soon for more stability and balance (i have pots) and i have a couple questions

• do i get a foldable one or a non foldable one? or both? i heard the foldable ones feel less stable??
• what material is good/whats the difference between the materials
• i love the look of neo walk canes, but the handles don't look very soft even with the rubber grip, are they still comfortable to hold/dont they cause wrist pain?
• to follow up on that, any other brands in europe that make pretty canes?
• how do i tell my parents (who think i'm exagerating my symptoms for attention) i'm gonna buy a cane when i know they'll just have a laugh about it
• also how do i learn to accept i'm disabled and need a mobility aid? like i know i do and i am disabled but i cant fully accept it so i've been putting off buying a cane for months though i do need it. I think it's because it feels like thats when i'm officially really disabled since it gets visible to the outside with a cane? Also hearing my parents' words who don't support me in the back of my mind doesnt help with accepting everything.

any other advice is also welcome!!

[dense sphinx]

if you're planning on not using the stick every single time you go out, or don't think you'll need it the whole time you're out, I'd get a folding one for now, it's what I started with as I only needed it after any exertion, but now I've moved on to a non folding as I need it almost constantly, I haven't actually noticed any stability differences between the two with nothing added, but the clicking of the folding one can get annoying!

this is maybe bad advice so fully take it with a grain of salt, but if you're in a position where you don't need your parents to buy something for you and you're independent in that regard, I wouldn't even tell them, just start using it, they might start to realise how much it's helping in time. regarding accepting and needing the aid, for me I gained more acceptance when using my stick more and more, and noticing how much it helps me. I was really easy to dismiss my pain beforehand until noticing the differences. it was also the realisation that at least for me, my disability is progressive, I'll never get "better", so trying to deny it and overexerting myself was pointless, it's better to figure out what is and isn't manageable and live my life to the fullest within that. if I wasn't accepting my disability I'd be more miserable and in pain because I wouldn't learn or accept how to correctly pace myself if that makes sense :))

not the best advice for accepting it, but in short life gets easier when you do : )

[severe nova]

okayy thank you so much!! i am actually thinking about maybe getting the foldable cane without telling my parents and just using it when they're not around. sadly just starting to use one around them would just lead to them laughing about it with their friends and family (they already find it insanely entertaining to laugh about my disabillity with everyone and are annoyed when one of their friends does take me seriously).

i'm hoping i'll truly realise i need to take better care of my health soon😭 hopefully when it's in my medical records? (my pots has been confirmed by multiple doctors/specialists but for some reason its not in my medical records yet)

only problem is i dont like the look of most foldable canes aahh why are they all designed for grandmas and why cant they let grandmas shine with their canes

[severe nova]

i'm back again😅 i found 2 foldable ones that look uh practical and i might get one of them but i cant find out what the difference between them is

[solemn gale]

They look basically the same, different grip and tip but functionally likely very similar. The second one does have a collar, which prevents clicking, while the first one does not as far as I can tell, and they may fold down to different sizes and/or have different minimum/maximum heights

[wicked sequoia]

Im not sure if this is technically a mobility aid but
Does anyone have any good ankle, knee and wrist brace recommendations for joint support and stability, that are relatively cheap?

[meager eagle]

my cane

[fierce isle]

I kind of wanna use washi tape for my crutches but I don't use them when I'm out tho. I might be getting a new wheelchair so hopefully I can decorate that like my old ones

[wide walrus]

GG @fierce isle, you just advanced to level 14!

[meager eagle]

I haven't customized my cane more than a sticker till today lol

I used some chalk markers

[fierce isle]

If your into art and like drawing or doodling posca pens are good or ant type of pen that would work on metal

[meager eagle]

thx for info 🙂

[fierce isle]

Hey does anyone in here have experience with NHS powered wheelchairs??

[whole viper]

This is the one I am most likely getting!

[fierce isle]

Looks sick yk i'd get smth similer to that but cant atm

[whole viper]

thats fair. hopefully someday you can!

[fierce isle]

im getting a powdered chair cuz me and my care team want me to be more independent and plus ive lost some strength in my hands and arms not as bad as my legs tho

[vivid estuary]

What’s the smaller part in front of the wheelchair used for?

[radiant quiver]

Isn't it the wheelchair folded?

[celest ivy]

I think it is

[vivid estuary]

Ohhh yeah that makes sense

[sly marten]

Any one have recommendations for durable canes or crutches because walking has been getting very painful recently and I have Tourettes and one of my ||tics|| is throwing things/slamming something im holding to the ground

[wide walrus]

GG @sly marten, you just advanced to level 2!

[arctic cove]

id say get something thats not foldable, because those canes/crutches are more stable. and id go for a rubber tip to ease of the impact in case you slam into the ground while holding it. no specific recommends tho

[sly marten]

Thank you sm!!

[coarse schooner]

It seems that I have been injured. Does anyone have any advice for what I’m supposed to do when I need both of my crutches

[radiant quiver]

Hii does anyone have advice to make "normal" crutches work like those. Like attach to the arm. I tried to use a scrunchie (the hair thing) but I am not completly happy with the result. So I was wondering if someone has an idea😅

[waxen latch]

I wonder if you could use one of those snap-on reflective bracelet thingys somehow

These ones
I think there's also non reflective ones

[stray zinc]

what are normal crutches

the underarm ones popular in america, or the french ones

(probably exist in countries that arent france but im in france so thats where i know them from)

[west raven]

it would be helpful to share an example of the "normal" too haha since these are the normal over here and usually pretty cheap (like 20-30 euros)

[radiant quiver]

Ohhh I have one of this I will try thanks

Oups sorry those are the normal ones where I am/for me😅

[radiant quiver]

French one I would say as I am in france too😅

[stray zinc]

i have a solution for this actually! i ran into this exact problem in september

french crutches are so evil

this solution might only work if you are a fibrecrafter

i knit these flat. then sewed them together for the top part, and added a button around the back (beneath the hand grip)

(the button isnt featured in those photos)

[radiant quiver]

Ohhhh yeah I can do that

Just I don’t understand how to do the top part

Thanks a lot

[radiant quiver]

Yeah and I am not sure that my parents would be okay to let me buy new crutches. I am not even sure to find ones in France without shoping online abroad 😅

[stray zinc]

i have no idea why the ones without forearm cuffs are so popular here

they are so inconvenient! if you take your hand off the grip to open a door or check your phone, the crutch goes tumbling to the floor

tomorrow i might be able to explain more of how i knit the cuffs

it was quite simple but bc its 3d/round it looks more complicated

[radiant quiver]

Oki thanks a lot 😁

[radiant quiver]

Exactly ! It's also why I only use 1 while 2 would give me a better position. Like I won't be on a side

[radiant quiver]

I was confused yesterday as it's written "english cane" on my crutch 😂😂 like why is it called english 😂😂

[radiant quiver]

I tried to do it. Succeed but my yarn is too big so the whole thing is too big and so kind of weird on the crutch. And I don’t have any other crochet and yarn....

I tried to glue an elastic on the crutche I will see if it works.

As I will use them more often. (My parents said that the knees braces may have weaken things in my knees so it would be better to not weat them anymore, so more crutches for me, I think I managed to explain to them that 2 crutches are better than 1)

But I need to find a way to "attach" correctly my crutches to my forearm if the elastic doesn’t work 😅

[stray zinc]

can you send a photo of what yours looks like? i dont think size of the yarn should be a problem

[radiant quiver]

It has different holes to adjust the button

I think I will try to re do it but I will remove a part to make it less big

It's normaly yarn to do amigarumi so pretty big and soft as it's for plushies

I will have to think fast and re do it fast if the elastic doesn’t work as I re start uni next week and will take public transports to Paris. First time with both crutches

[stray zinc]

it looks really good! i think the forearm part on mine might be shorter than yours

its not a perfect solution to evil french crutches but i have found it really useful :) better than nothing!

[radiant quiver]

🤔🤔

Yeah I will really re do it and shorten everything and removing a part that I think is not usefull 😅

[radiant quiver]

Exactly and like I show on a picture before it's written english crutches on it like how confusing is this thing

We are really not good in france for those kind of things😅

[stray zinc]

honestly the hand grip for the crutches is way more comfortable than the one my friend has back home

so france has got that part right

[radiant quiver]

Ohh it's not always the same ?
I saw ergonomic hand grip but after they seemed to look kind of all alike 😅 (personaly mine is not really comfortable but better than old ones that I had before)

[stray zinc]

the french one i have is made of rubber i think

whereas my friend's one is hard plastic

[radiant quiver]

Oh mine is made of plastic 😅

[stray zinc]

i just got lucky then i guess!

[radiant quiver]

Yeah maybe 😂😂

[stray zinc]

i got mine in a shop that specialises in disability aids (full spectrum: wheelchairs to incontinence pads)

they were looking at me kinda weird bc i was walking "normally"

[radiant quiver]

Uhg horrible

[stray zinc]

years ago my classmate had crutches, and she put grip tape (for (field) hockey sticks) around it to make it more comfy to hold

[radiant quiver]

Ohh😂😂 smart

[stray zinc]

i can send photo of what im talking about if you need

[radiant quiver]

Yeah if possible to be sure that I have understood

[radiant quiver]

My dad said that we may go to the pharmacy to see if they could have advice for the forearm part

[radiant quiver]

I was thinking of wearing gloves to help a little bit at least when I will be outside

[stray zinc]

maybe get cycling gloves, as theyll grip the plastic better

[radiant quiver]

Oh and it's not too rough ?

[stray zinc]

its actually quite soft, tho photo may not look soft

[radiant quiver]

I will look at that thanks 😁

I think I have a little bit of leather on my gloves so it won't be too slipery but not perfect indeed😅

[radiant quiver]

Oki thanks 😁

[strange talon]

It's better not to take it off, because it prevents slipping.

[strange talon]

I'm kinda late.

[strange talon]

when after the operation I was on crutches and riding in a wheelchair, the bicycle gloves helped to keep my hands from slipping and I didn't get blisters

[radiant quiver]

Ohhh great😃

[strange talon]

but baby powder also helps, but gloves are better

[coarse schooner]

I had to replace it because it was so worn down it had a hole and gravel was getting in

[west raven]

yeah it's important to replace it once worn down

[vale gorge]

I replace mine every few months when I start to feel it’s a little bit out of balance

[strange talon]

yeah, not because then crutches can be unstable

[west raven]

you have to take them off to replace them tho

[strange talon]

Yap

I know, I just remembered. That's what I was supposed to do when I was on crutches for about 4 months.

[strange talon]

...

[harsh lake]

aid blisters. 🤢

my enemy

[coarse schooner]

I spent so much time decorating my cane only for me to end up on crutches🤦

[west raven]

see it as ✨ experience ✨ you're now a professional mobility aid decorator 😎

so now you can do the same for your crutches

[primal tusk]

I'm going to Efteling with school again soon but i'm debating on wether i should rent a wheelchair again and suffer weird looks from my schoolmates or let my wrists and ankles suffer from using a cane/crutches. Both are not ideal because wirh a wheelchair i'll be depending on my friends which i'd feel very guilty for or my wrists will be in agony from using crutches. If anyone has any tips or input at all please let me know! Or even if you just like efteling in general i'm curious since its one of my special interests :)

[stray zinc]

have you talked to your friends about it? asked their feelings on supporting you throughout the day?

i know if i had a friend who needed to use a wheelchair while we were out, i would definitely want to support them in any way i could

[primal tusk]

I now have yea :) i'm glad i did because they are very supportive

[radiant quiver]

I had a small fight with my dad this morning because of my crutches. My dad is complicated and I still feel very insecure by using both crutches. (I think I shouldn't that I just exagerate etc ..)

Does anyone have like advice to feel more comfortable in the idea of using them and not caring about what my dad (maybe parents) and my not nice thought tell me ?

[fierce isle]

Hey does anyone in here have experience with NHS Power chairs? I'm used to manuals and ones that aren't as bulky and ones that fold. I'm anxious because I dont know if they would listen to what I want with this chair because the one I have right now doesn't help my back or hips like posture wise I think anxious is a understatement I'm terrified

[onyx bison]

Hopefully going to get some knee braces off Amazon this evening!!! Finally!!!!

[solemn gale]

Psst - I posted a survey regarding mobility aid design in #promotions , if anyone here would be willing to fill it out I would be eternally grateful

[zinc abyss]

hellos!

finally learned how to do wheelies!!

i can hold a wheelie for over 1 minute, and im training to go forward in a wheelie + turn in a wheelie + be more steady LOL

[unkempt tusk]

Well done <33

[warm aspen]

hey

have been thinking about mobility aids for a good 10 months or so and yall seem like qualified people to ask about validity and all that good stuff (i'm half joking)

so i've got tourette's right and that's incredibly sexy except for the fact that not only does it cause me horrible pain now and then it also makes me fall over, compromises my mobility and exhausts the hell out of me

i probably won't be able to get a mobility aid of any sort for about 2 years but if i did what would yall suggest if you think i need one in the first place of course (up for giving more info if needed)

[dense sphinx]

what type of way do you fall? I'm thinking a pair of crutches might be best

[warm aspen]

my knees kind of give out like they bend and pop forwards and so i end in like a spiderman-style kneeling position but less cool and more scraped-knees-like a-child

[warm aspen]

crutches might work but i think it would hurt because i would fall but the crutches would stay up and therefore also my arms however i would be able to lean on them so i wouldn't fall completely, so you mught be right

[severe nova]

if falling is a problem i think a wheelchair might be best?

maybe you could see if there's a mobility aid rental center thing in your area to test it out? some of them even let you rent them for free for quite a long time (like the ones in my area let you rent for free for 26 weeks)

[warm aspen]

i'll look that up - that's actually really helpful, thank you

[radiant quiver]

Does anyone have recommandations for gloves for crutches ?
I will try to find some because my crutches are not very good and it hurts my hands.

I will try to look at Décathlon (a sport shop) monday but if anyone have recommandations it would be great too 😁

[small wing]

I have a love/ hate relationship with crutches, they give support for legs and feet but are so tiring for the upper body
I tried bike gloves with fingers and without, i d recommend without cause for me it was way more confortable and adapted to wether
My go to with crutches are fingerless compression gloves , but mitains also works well ! No specific brand to recommand
You say your crutches are not very good, maybe you could search for some more adapted, with ergonomic handles or arm rest to manage your hand pain ?

[radiant quiver]

Thanks indeed it's so tiring and sometimes not even enough my legs are still screaming... but the next level would be a wheelchair for when I go outside for a long time... my parents won't agree... even if we have a wheelchair stock somewhere in the family... so I will have to keep suffer I thing..

I choose bike gloves without the finger yesterday at the store😃

Yeah indeed I am thinking at buying new one but my parents don’t seem very okay with that. They think my issues will disappear soon...

[small wing]

If wheelchair is not possible for the moment, you could try a deambulator or a rollator as they give support for the legs and also permit to sit down and rest
Sorry your parents aren t that much supportive, and i hope will be able to get a mobility aid more adapted for you or at least get more support by your relatives !

[radiant quiver]

Thanks🫂
Yeah indeed I thought of it but I would have to buy one as I can't borrow one for my family (nobody has one...)
And when I look at them online it's really expensive and without the place to sit. I have to find some with a seat so if anyone have a website or recommandations 😅

Thanks a lot I hope too because yesterday with just my crutches I struggled a lot and has to always find a place to sit...

[small wing]

Cane with a seat system exists, but i don t know about crutches with this system
Also only remembered now but to prevent pain in your arms with crutches you could try pads / cushion on the hand grip and the underarm, wear braces on your wrists, elbows and shoulders, or also kt tape

[radiant quiver]

Mine are like that I added a rubber to close the "gap" and so they don’t fall but indeed pads or cushion on the hand grip can be a good idea.

The only brace that I have for my upper body is rigid and for my left wrist but thumb too so I can't really use it with the crutches😅

-# don't mind the red thing it was to show something at someone😅

Thanks for the advices😃

[tacit radish]

what makes it worth it to get a mobility aid? i have like crazy differences in what i can do, like i can’t stand for a long time without getting dizzy + legs hurting but also i can usually walk a couple miles with no problem, just my knees give out sometimes never sometimes almost constantly and so i feel like it’s not worth it to talk to my parents about anything unless something gets worse but when i feel really bad it’s hard to get out of the house on walks without constantly having to sit down

however i am also very active and okay with being active except for the random times that i am extremely exhausted - the main times i struggle is when i have to walk while at least somewhat tired or stand for long periods without walking much (like at museums or in lines)

the only physical disability i have that impacts this is either HSD or hEDS (doctors not sure which) so joint issues/pain and also dizziness/lightheadedness for mystery reasons and i don’t know if it’s worth even looking into mobility aids - i’ve considered borrowing one at a museum because going there hurts and they’ll give you one for free so it could be a good way to try it out?

[radiant quiver]

Tomorrow I go to a big museum. I have to take a lot of public transports before. And I am on crutches. I saw that the museum may provide wheelchair if you ask. And I am really thinking about it as walking is more and more difficult and draining even with my crutches and I would like to really enjoy the museum. Even with the crutches standing is really hard and I have to sit as much as I can.
I would be with a friend so I want them to enjoy the museum and not caring about me having to sit.
I have been thinking of borrowing a wheelchair (someone in my family have one in their house) but my parents were always against it (I think because they don’t want to push me even if I think I can do it myself)

But Tomorrow there won't be there just me my friend and a museum where we may borrow wheelchair.

I am really thinking about it but also scared I don’t know if it's a good idea or not and if I have the right or not ...

[waxen latch]

I think it sounds like a good idea. That way you can try out if it helps you without your parents interfering. And you can possibly enjoy the museum better, as you said.

[radiant quiver]

Thanks✨️ I think I will ask for it.
I don’t know if I should tell it to my parents that I am thinking about that.... I am quite anxious both to not tell and to tell them....

[radiant quiver]

Ouah I used the wheelchair at the museum and it was incredible. I was really able to enjoy the museum etc.. 😃✨️✨️

[jagged cliff]

I'm looking for a compression shirt to help with my chronic pain (probably not caused by any type of hypermobility but maybe by something as ME - I think the difference can be important in that case as I don't need to "hold my joints together" but more to support my muscles). Do you have any advice about it? Any brand recommendation (preferably in Europe)? Also, I am masque so I'd rather buy a "man shirt" but as my body is not the one of a cis man, do you think it will fit me, or should I buy a "woman shirt" ?

[radiant quiver]

I managed to borrow a wheelchair in my family 😃
I have to clean it a lot because it hasn't be used for ages but it's in good shape.

It's a bit big for me but better than nothing.

I will try to see if I can make it like taller. I saw that I could and also saw how to do it but I will see if I will be able to do it with my dad. And if not it's not a big issue.

I am proud of me because I push through to put my pov first and didn’t let my parents stop me. I am proud because I was scared and someone remind me that I was 19 and so an adult and that I should be able to make this kind of choices for my health without being block by my parents

It's one like this but without the black thing behing the calves

[stray zinc]

im really proud of you!

ive been reading your updates in #1457148337588539452 and im so glad to hear that youre advocating for yourself and putting yourself first :)

[radiant quiver]

Thanks a lot✨️✨️

I will keep updating it as the diagnosis journey has now started😁

[stray zinc]

whoo!! very cool

im hoping you will get all the answers you need

[radiant quiver]

Me too thanks ✨️😁

I hope you will have your answers too✨️

[stray zinc]

im getting so tired of reminding myself that im allowed to use mobility aids

usually i use them for dystonic/tonic tics in my legs, but i suspect im hypermobile, and i can never stand straight

idk how people just stand. i always end up putting all my weight into 1 leg. so i also use my crutches to take weight off of whatever leg or joint

but i overthink whether or not i "look disabled enough" and then people around me (teachers, classmates, new acquaintances) look at me like i must have some Great Illness if im using crutches. when i dont really. so it makes me feel like a faker

(even tho im not. i just use crutches for a purpose theyve never heard of before)

if anyone has advice on how to feel confident in my mobility aid use, id appreciate it :)

[celest ivy]

Anyone else find it a little funny when people draw crutches or a cane with no base?

[meager eagle]

Others who use forearm crutches, especially ergonomic/smartcrutch types, how is it like?

[devout tangle]

Honestly, I've just started using mobility aids (currently have a cane and a rented wheelchair), so maybe I'm not the most "qualified" person to give advice on this. Yet - from what I've gathered so far, there's really no way but through. You are going to feel uncomfortable and are going to have long explanations for people you know who've never seen you using a mobility aid before, and the only way to start feeling more confident and more like yourself is to just keep using it. Also, I've never done it, but decorating your aid may also help by making it feel more yours. Hope it helps.

[devout tangle]

Oh, I also want to know. Sometimes I feel like using a cane isn't enough stability for particular days

[devout tangle]

I totally get that too. But the general rule I'm trying to keep in mind is that if an aid helps you, then it's for you. If you didn't need it, it would feel annoying and cumbersome. So it sounds like you are totally right to use an aid.

P.S. I also suspect I'm hypermobile and can't stand straight either. Though in all fairness I also have some form of dysautonomia

[stray zinc]

thank you for saying all of this

i think when i return home at the end of my study abroad, ill decorate my mobility aids more

being near all my friends will give me more confidence i hope

[stray zinc]

honestly, my crutches are annoying and cumbersome, and the fact that i know this but i use them anyway actually makes me feel validated

like i take up more space on the street and its more difficult to access shops and classrooms

i frequently carry my crutches with me in a bag when im not using them (but might need to) and ppl often stare to try figure out what im holding

i took them to a night out the other night and i didnt really want to, but i also didnt want to not have them with me; i brought them anyway

and i realised if i didnt want to bring them but did anyway, surely a "faker" wouldnt do that :)

~
i saw your post in the EDS forum but unfortunately i cant help as i have no answers on my hypermobility either, and i too have no idea whether my joints bend back far enough to be hypermobile

[devout tangle]

Yes, you are totally valid!! BTW, how is it to use crutches? I'm thinking of maybe getting some because some days my cane isn't enough support. Also, which ones do you have that fit in a bag?

[devout tangle]

Ohh, it's good to know someone else is going through the process as well. I mean, I've been asking my family and friends a lot if they can do the things I can, and most of the time the answer is no, so I am likely hypermobile. The thing is, though I have a lot of the commorbidities that come with EDS, I don't think I meet all the criteria - so I was thinking maybe my diagnosis would be along the lines of gHSD. But I have to try and find a doctor who knows about it

[stray zinc]

using them to support my body while standing has been very helpful - i can take weight off of (leg) joints without putting the weight on other (leg) joints

using crutches to support 1 leg is easier than using them to support 2, for me if i use 2 crutches to support 1 leg, that leg feels very supported, but if i use them to support both, i dont feel as supported

unfortunately the ones i have dont fold up, i just shorten them as much as possible and put the forarm parts in the bag, so the legs of the crutches stick out and are very visible

i prefer the weight distribution with a crutch to a cane (i have never used a cane bar trying it out in a shop)

[wide walrus]

GG @stray zinc, you just advanced to level 14!

[stray zinc]

finally, there are things to consider when using 2 crutches. i cant bring them (grocery) shopping with me as i cant carry a basket or pull/push a cart while using them. opening doors is a longer process. luckily i happened to get crutches with a rubbery hand grip so my hands rarely get sore, but with hard plastic its a different story

i have to stop to check my phone bc i cant walk, use crutches, and check my phone all at the same itme

all in all you learn to adapt, and i love my crutches :)

[dense sphinx]

I always put my crutches in the trolley/cart when shopping, you still have support with pushing the trolley itself!

[covert burrow]

okay mobility aid people, i fear my crutches have given me nerve damage because for a few weeks i have not been able to feel two of my fingers on my left hand

has anyone dealt with this

[stray zinc]

the supermarkets that i have access to do not have trolleys :( just cart-baskets that you can carry/pull (has 2 wheels)

sorry for the ping, forgot to turn it off

[waxen latch]

Today I realized I could probably store a pair of crutches in my room to try if they help on "standing wastes more energy than I'd like" days
Bc I remembered that I saw not one, but two pairs in the basement when I was looking for other stuff (I think one pair was my grandma's and the other was from when my mum had a knee injury)

I could probably store one pair under my bed so they are not in the way but I can reach them relatively easily when I need them when

[west light]

I just used a wheelchair for the first time today. I've been having repeated seizures/fainting, brain fog and trouble walking or keeping upright, like usual, but this episode was much longer (24 hours and counting) At the local mall you can borrow one for free with no need to show medical ID, so I reluctantly did, after trying without several times and it not going well. It gave me the chance to go food shopping without falling to the ground, and I didn't need to spend so much energy trying to make myself walk either. My emotions are all over the place about it

Part of me feels almost guilty for using one. And many times I felt restless and just wanted to walk. Sometimes I tried, but it didn't go so well. And the wheelchair helped so much 🥹

[radiant quiver]

I am so glad that you have been able to use one and that it helped you ✨️

You don’t have to feel guilty you used it because you needed it.✨️✨️
I know it's easier to say than to do I felt similar when I tried like you to use a wheelchair (in a museum for me)

[west light]

It's weird, because I would never tell anyone else to feel guilty for it! But I got most worried because I know one's supposed to do as much normal stuff as possible. I felt anxious that I was training my brain not to let me walk. But I got through shopping, and there were no incidents of lying on the floor with people crowding around me either 💗

And it's so much easier to think about what to get when you're not just trying to keep your body functioning!

[radiant quiver]

Exactly !

Like you can actualy think about what you are doing and enjoying.
No need to wander where the next seat is and if you will fall or not

And no pain from walking

[west light]

If I continue to have episodes with this hefty and long lasting symptoms, I might ask to get a wheelchair at school 🌷 But I'll wait and see, if I get better and only get small episodes after it should be fine 🤞🏻

[west light]

I think I need a wheelchair now, unless I get a cure for my mystery symptoms first. I've been losing all power in my legs. A cane, crutches or a rollator seems like a less drastic first step, but i don't think they would help

I'm scared, but i think I will ask my doctor soon

[devout tangle]

I'm in the same process! Keep it up and let me know if you ever want to talk

[elder gale]

Anyone have suggestions on how to ask/advocate for yourself when speaking to a PT or doctor about mobility aids? Even when I brought up the idea of braces for my very hypermobile joints I was told no because I’m young and should be strengthening the muscles (which I am also doing it just hurts 😭). I’m okay with being told “no an aid won’t help you” if it genuinely won’t, but I hate it when people say no just because I’m not 80, yknow? How can I get people to even take the idea seriously?

[solemn gale]

Hey guys! I've mentioned this previously, but I'm part of a design team focusing on mobility aid design for my design class and would love some input on the design we are working on right now.

Our final design is a mobility device that is intended to both collapse to fit in a bag and also convert between use as a cane and crutch, as can be seen in the overview in the first attached image. The specific subsystem that I am working on design, testing, and validation for is the cuff, which is designed to fold in on itself to allow for easier storage (i.e. in a bag when not in use). When in use, straps around the exterior in combination with plastic tabs ensure the joints remain open to the right angle without hyperextending. I've attached images of the CAD drawing for this part (with each hinging piece being a different color) as well as images of a 3D-printed prototype below. Any feedback on this design, be it critical or complimentary, would be greatly appreciated! If there is anything you would like clarification on or that I have not explained fully, please also feel free to send any questions you have my way.

Thanks!

[celest ivy]

The dimensions don’t make sense to me

Also, I’m not sure how the cane conversion works in terms of the handle

[solemn gale]

The handles can be attached in either a forwards or backwards oriented position

Hang on I can maybe find the other sketch I have

[celest ivy]

Yea, the cane part doesn’t work

At least imo

[solemn gale]

that isn't really my area so mechanically I'm not 100% sure how they will be connected but this is the general idea. I was more concerned with feedback on the cuff.

how so?

[celest ivy]

So, this is mine and then the next picture is how I hold it

[solemn gale]

The hand would sit more like this, where the finger doesn’t wrap around the front as much

(Ignore that my cane is still folded lol)

Or similar to an offset handle cane if you prefer to make that comparison, where the fingers just wrap around the handle

[celest ivy]

I’ve never seen a cane handle like that :0

[solemn gale]

Don’t have my one of those on me so you’ll have to forgive the lack of demo in that regard

It’s by kmina! It’s their palm grip cane and it’s sooooo comfy, it’s actually my favorite thing ever

[celest ivy]

That explains that, I still don’t get the measurements

Are you rather tall?

( if you’re basing the design off your mobility aids )

[stray zinc]

the 4 sections are adjustable i believe

it does mean that every time you want to unfold it you have to adjust it 4-5 times

[celest ivy]

Okay, apparently everyone has a cooler cane than me and also probably have like multiple inches on me height-wise

I was confused cause the measurements list it as, like, 90% the height of me

Okay, I got the conversions wrong, American units are weird

Anyways, last is probably the most normal thing that I’ve gotten confused about with this is: how are you gonna account for the lack durability in the design created by the amount of moving parts?

Regular adjustable folding canes are already pretty finicky even with just a few parts that move around and the more parts that move the more you risk repairs being needed more often

[solemn gale]

Again, not really my subsystem/not the component I'm working on so I don't have a great answer to that one. The first sketch was more to illustrate the overall idea to give context for what the specific subsystem (the cuff) was

that being said, we are using a pin/clip method for adjustability (similar to coolcrutches or walkeasy) rather than the push button and plastic collar method most folding canes use, which likely is more durable

because the design collapses rather than folds, we also don't have the elastic string in the middle a lot of folding canes depend so heavily on

we also did weight testing today though and I think we got upwards of 300 lbs of force without signs of failure (didn't actually test to failure - goal was 250 and testing to failure wasn't something we had the equipment to do)

(also, I'm aware my experiences are far from universal but I've had my folding cane for about two years and havn't ever had an issue with it breaking or anything)

hopefully that answers your question at least a little bit though?

and yes that is maximum height, it can be adjusted to be shorter

[waxen latch]

If you take out the crutch extension, is there just a hole in the front of the handle while using it as a cane? Or do you plan on making another optional part to put there to close that hole?

[solemn gale]

I believe the original plan was to have some sort of optional part but is something we will be discussing at a later date

Again, we are currently focused on individual subsystems right now, which generally corresponds to pieces that are more functional than they are aesthetic

[waxen latch]

Oop right, my bad. I read back and you said you're working on the cuff (I thought you said you were working on the handle and I thought that would've been part of the handle)
But yeah that does seem like a thing that can be easily added in at the end bc the connection part could be the same as for the handle so nevermind 😅

[dense sphinx]

what little, small maybe unknown aids do people use to make their life that little bit easier? like for example I keep a folding chair in the kitchen so I can sit and cook or clean dishes, and I have a "crash cart" trolley next to my bed filled with stuff that will help me with bedbound flare ups, just wondering what other people may use that often go overlooked!

[waxen latch]

I also use a stool in the kitchen sometimes
Also having a place to sit down while brushing my teeth can be helpful on flare-up days (that could be on the toilet lid or the edge of the bathtub or something like a folding chair)

[dense sphinx]

I have the exact same pair!

[jagged cliff]

I finally asked my parents if we could try to take my ancient grandfather's wheelchair and they said yes without hesitation. My mom will ask our friends to bring it when they visit us next week because they are in the same city as my grandparents' house, I hope it will fit in their car so that I'll have it soon 🤞 it is not an active wheelchair though, as the 4 wheels are small, but at least I'll be able to use it when I go out with friends or family!

[radiant quiver]

Nice 😃✨️✨️

🤞🤞🤞

[jagged cliff]

Yes I'm very happy and greatful

[waxen latch]

Good to hear it went well and congrats on having a wheelchair soon!

[jagged cliff]

Thx! :)

[west light]

Hi! I'm considering mobility aids. Earlier I was considering a wheelchair, but my mobility issues have gotten much better - I don't know if it's forever or not, but for now that's the situation! So I've been thinking about getting crutches or a cane. I'm struggling to decide what mobility aids I think would help me most, if any.
My legs aren't always super cooperative. They sort of rotate inwards, sometimes I get sort of a shaky bouncy hesitant walk, other times they get really stiff, and they kind of curl over on the side. Sometimes I need to drag a leg behind me. Do you guys think crutches could help with this?

At school my teacher has been having to help me walk, it's really not ideal

[west light]

I also often find it difficult to transition on to my legs after sitting/lying down for instance. Which is impractical when my legs being uncooperative can literally land me sitting on the floor

[severe nova]

i'd maybe suggest crutches? you can use both on worse days and just use one when you feel a bit better

[west light]

Thanks for input! I can actually try some crutches on Monday I think ^^

[west light]

What I like about canes, is that the foldable ones are so easy to put away when my mobility is better again. I'm just wondering if it would actually help at all to use one

[nova grail]

You can get foldable crutches they’re just not as common. The description of your leg dragging behind sounds very similar to my experience and a cane is just not enough support for me. I have to use either crutches or my wheelchair when I’m out the house or I’m having a bad day (I can often manage in the house without anything because I don’t car how my feet and legs drag when I’m at home)

[thorn niche]

I used some crutches today for the first time, and it was so good to be able to go out without using all of my energy!!! I'm so happy 😄

[west light]

That could be a good idea! I imagine they fold somewhat bulky tho. I'm really struggling to find out what I need, because it fluctuates immensely. Sometimes I can't walk, but it never lasts long. I've had a week where things were much worse than usual and a week where I had virtually no symptoms, in comparison at least

So I'd love to have something foldable, or if things get worse again, a rollator that converts into a self propelled manual wheelchair

Do crutches help a lot with the process of getting up?

[severe nova]

yea I get that too, that's why I ended up going for a cane :) Maybe you could try to get a cheap (but still sturdy, like maybe second hand) cane as well as (foldable) crutches?

[west light]

I could try, but I really am not sure where I'd get hold of a cane. I could maybe ask a relative, but unless they still have their old one it would be hard to find. I'm also going to borrow crutches from a relative, to try, but they aren't foldable. Hospital crutches

[stray zinc]

where i live, they sell canes in thrift/vintage/second hand shops, and in pharmacies/chemists

[west light]

Does anyone know if foldable crutches would fit in a 30L backpack - and without taking up all the space?

[stray zinc]

pretty ones too, not the hospital kind

[west light]

I do remember a friend got one second hand for a Dr. House cosplay of all things xD

[stray zinc]

i can give you a rough measurement of how tall my non-folding crutches are (lmk if you need it in ft or m/cm)

and then you can half that in terms of height

or wait for someone with folding ones to respond of course lol

[stray zinc]

the way i do it is i face the crutches into each other, line the handles up (like this =, not like this --), then hold the handles with both hands to stand

[west light]

i found some online that say they'd be 56 cm folded. That's a bit much for bringing folded on a bus xD

[stray zinc]

thats really not that tall! many bags are that height

[west light]

thank you for offering! If you have the measurements in cm at hand it doesn't hurt, but I'm finally finding measurements online too so I don't think it's neccesary

[stray zinc]

i would be estimating, so the online ones are probably more accurate

[west light]

That would probably work for getting up from chairs! I'm worried about getting off the ground as I often fall, but then maybe I wouldn't fall as much in the first place if I had crutches xD

The folded crutches would be like 5-10 cm too tall for my backpack -_-

Unless other ones are shorter

[stray zinc]

oh no :(((

[nova grail]

They can. It takes a bit of practice but they can do. I sort of put the handles facing each other to form one handle then hold onto there with one hand and push off the chair with the other if I’m using them to get up.

[nova grail]

Getting up off the floor is a lot harder. I sort of try to put my elbow on the handle to do that if I am remembering properly. Not the clearest memory because normally if I fall either a friend or my dad help me up

[west light]

I could maybe have them in my backpack if it's a little bit open, that's what they show in the ad. But it's my school backpack and would contain a laptop and it might rain 😬

[west light]

Thanks! ^^

[stray zinc]

the crutches themselves might come with a bag

if not, you could put them in a bag with your backpack, then close it tight so hopefully no water gets in

[west light]

I think some of them do and some don't

[west light]

I borrowed some, they're useful for now!

[west light]

I'm having mixed feelings. On one hand they help when the symptoms come, on the other hand the novelty of crutches is making me focus on the symptoms, which worsens them. And I'm overthinking

[stray zinc]

i think youre bound to be distracted by them at first, but over time they might just blend in with how you live your life

sending strength for getting through the worsening symptoms <3

[west light]

Thank you! 💗 I thought about that too, I hope you're right!

[kind tree]

I've gotten to the point, that though I got my cane back in like august last year, that I'm ready to actually use it. Which is like super scary but at the same time I feel like it's time. Unfortunatley, I can't use any mobility aids at work, but I'm hoping I can get out more, I'm not really able to go out of the house anymore except to work or the grocery store. I end up crashing every single day, and I'm perpetually in a crash rn since november. Last time I tried to go out to a place with lots of walking in July last year it didn't go so well, and I definately needed something then too. Which was after that I got my cane but I was too shy to ever use it. I think I also need a rollater but I need to rearange my stuff first to fit it into my room T_T chronic fatigue got me there.

[jagged cliff]

I used my cane more than just to walk around my house alone for the first time yesterday! I was with people I know and there were a lot of people because we were in the city center but I didn't feel awkward at all. Nobody looked at me awkwardly or asked questions (except for a little girl who asked her dad why I had a cane and he simply answered "to help her walk" so it was sweet), it seemed completely normal. And I also saw a lot of young visibly disabled people with mobility aids so I was really happy. I think my cane helped a bit because I can't normally stand that long and I crash hard after but yesterday the crash was light so yeah I'm happy!

[meager eagle]

I feel like a Quickie IRIS type of wheelchair would suit me best, with a smartdrive power assist. I'll have to see.

[devout tangle]

So... I have a rented wheelchair but I'm thinking it will soon be time to get my own (first time!!). Can anyone give me some tips about getting one / finding the right one and also, what do you wish you had know before getting your first chair? How do you go about learning how to be a wheelchair user (maintenance, upkeep, lifestyle, etc)?

[hexed hull]

Biggest thing is get a wheelchair that actually fits you. My first wheelchair was too wide and it hurt my arms to wheel myself around. My new chair has a much smaller seat and allows me to have more control over my wheelchair

[jagged cliff]

Is it also important if you choose an electric wheelchair?

[echo ridge]

from what i know and would feel is that you want to feel as you are part of the chair not sitting on it. so i would suggest you don't get it too wide

[echo ridge]

this! they would probably want to add an extra 2 inches but that's uncomfortable so you wouldn't want any bigger than 1/2 on each side if even that

[nova grail]

I agree that seat width is very important. I have 2cm wider than I measured which is a nice size for me as I like blankets in winter but it’s not wide enough to be a problem. Seat depth is also important if it’s too long it’ll rub on the back of your legs. Assuming you’re getting manual I found ergonomic pushrims make a bit difference for me I’m missing mine so much whilst waiting for my replacements.

[radiant quiver]

I was looking into wheelchair brand (thinking about buying one) and my current one is from Invacare (haven't really used it because too big for me because it was to a member of my family) and I saw another one from this brand which new is in my budget so I wanted to know if anyone had/have an Invacare wheelchair and/or an opinion about the brand ?

Because I saw that new one of their wheelchair can cost around 400€ which is in my budget compared to the 1.5k that I often see...

But the gap between the two prices scares me a bit

[small wing]

I have had 2 invacare wheelchairs ( first one was a manual + standard size, and second is a manual fitted with removable motorised gear )
pros : more affordable compaired to other brand ( + my insurance covered much of it ), lightweight / not heavy both for me manually and for people pushing me with the handles , seat is confortable ( might need extra padding / pillows) , the frame is foldable and you can adjust most of the part to make it fit to your needs ( height, footpads, handles, seat inclination, brakes)
cons : they are bit of a struggle to store / put in the car ( due to height ), i find it hard to push in ascent ( streets and ramps ) , so sometimes need help pushing

Hope this helps ! 🐛⭐

[radiant quiver]

Thanks a lot it really helps 😃
For the height in the car I think that for me it would be okay because I have a peugeot 1007 so it's quite tall (and I took it because I can have a lot of space to put things like a wheelchair).

For the last part good to know 😅😂
I have the adventage that I will be an ambulatory wheelchair user so if it's a ramp I can walk if I am on a good day I think 😅
Otherwise I am rarely alone so normaly someone would be with me 😁

But thanks a lot it reasure me 😁✨️

[fierce isle]

HI question you know your second invacare wheelchair is it one foot plate or 2?

[small wing]

Two removable foot plates, but if you need one foot plate i think other options exist
Otherwise i used to put a thin plank between both foot plates to make it one and it worked pretty well

[fierce isle]

Btw just wanna say invacares good for wheelchairs I've mostly had all of my wheelchairs by them as like a more of a chair that is used on occasion but like now having issues cuz its not fitted to me and my needs but I will say I've had mine since like 2023 till now and I've ragged the fuck out of it and its still holding up somehow dents and scarves and bumps

[radiant quiver]

Ohhh nice

Hope you will be able to get a more fitted one soon🤞

[fierce isle]

Thanks for letting me know!!! I wanna put a plank for the one I have rn cuz its two footplates and seriously hurts my hips its a good backup option to know incase I ain't able to get a active chair but fingers crossed

[radiant quiver]

I am a bit scared because tomorrow I will go in kinda mall and we said that the next we would go I will take my wheelchair....
The issue... my mom is saying that we will take her car so a really small one (a Mini) and we have to buy a kinda big thing for the garden... so I don't really know how the 2 could fit...
And she hasn't mention the wheelchair yet...

I don’t know how to bring it up without upseting her... because I would 100% hate it if I have to walk all the way... we won't really do shopping but the thing is huge and even in the grocery part we have quite a few things to take and yeah.. no...

So yeah does anyone would have advice on how to bring it up again ?

-# to note recently my mom seemed to be okay with me using a wheelchair for long trip outside but as I am currently borrowing one a bit too big for me she really doesn’t like it (I still can push myself)

[radiant quiver]

I found a way. Had a weird answer but got a yes✨️

[radiant quiver]

So.... it's bad... apparently even if I said it my mom didn’t understand that I wanted to take the wheelchair.... so yeah...

[severe nova]

heyy, I'm tired of my random plastic stepstool as a makeshift shower chair. Where can I buy one that has a backrest and looks nice?

[blazing thicket]

I see shower chairs at pharmacies frequently, near the other mobility aids or near leg braces. Not sure if it’s the same where you live otherwise I’m sure Amazon or something similar online would have one

[waxen latch]

Depending on where you live, medical supply stores might be another option

[severe nova]

yea, it's just that most of the ones I can find at medical stores look so medical😭 the only one i've found that looks nice is a wooden one from amazon but i'm afraid it will mold

[dense sphinx]

Ikea (at least in uk) have a decent looking black shower chair, i think that's the only nice looking option I've seen unless you have the ability to mount a shower bench sadly ://

[waxen latch]

Fair point
And I assume it would be harder to customize compared to stuff like walking sticks or crutches bc it needs to withstand water🤔

Although I think you could be able to find anti-slip foil or something sold for water sports or bathrooms in different colors or pattern for decorating but I haven't looked into that further, I'm just thinking out loud here

[jagged cliff]

Maybe a paint for boats would work? But idk if it's great to have your skin directly on it, might be a bit toxic idk

[waxen latch]

Oh or maybe those stickers you can get for bathroom tiles and mirrors! Idk if they'd properly stick on a shower chair, might depend on the surface of the specific chair bc I think there's different materials

[wide walrus]

GG @waxen latch, you just advanced to level 15!

[west light]

I'm having post seizure exhaustion, wondering if I might borrow a wheelchair at the mall today. Or even one at school if it's still available. I'm at school now waiting to be picked up

Omg apparently it got sent back an hour ago because I haven't needed it til now. The timing 😭

[west light]

I used my crutches for a longer walk outside today, I've never done that before! It went well, but I was anxious that people would think I didn't need them. Because sometimes they were adequate support, other times not enough, and sometimes I could jump and run if I wanted to. (I had some ||tics|| that proved this) It's hard not to think about what people might think

[stray zinc]

idk if ||tics|| are an accurate reflection of your mobility/energy levels?

[west light]

It's so hard to know if I need a mobility aid and which I need when my mobility doesn't only fluctuate day to day, but minute to minute

[stray zinc]

but regardless, you are so valid to use a mobility aid even if there are times where you can walk fine

i have the same thing going on with me (mobility changing minute to minute) and it is so frustrating!!!

[west light]

Not always, I definitely can get ||tics|| that are beyond my capacity! But today I went from complete weakness to being able to walk normally and the ||tics|| felt like they were just showing off to outsiders that I could move around freely then

[west light]

I can have weeks with barely any mobility issues, but other times I need crutches, but I may only need them for a minute or two, and sometimes I think I need a wheelchair. Like today at times I was just falling over, when your legs don't work at all it's hard to hold oneself up only with crutches

[stray zinc]

i was also just falling over a good bit today

crutches make it easier for me to get up but theyre not 100% effective at stopping from falling in the first place

[west light]

That makes sense! Similar for me

[waxen latch]

I think mitigating fall risk is actually a relatively common reason why ambulatory wheelchair users use their wheelchair, at least from what I've heard

[west light]

I have no idea what I should do. I can go weeks without needing a mobility aid, and when I do need one, sometimes using crutches for just a few minutes is enough. But yesterday for instance, and other times previously too, crutches didn't seem like enough. I get weakness knees down and they can just suddenly lose all tone and drop, even be paralyzed for a very short time. It's like having constant drop attacks. It's hard or even impossible to keep myself upright even with crutches then. Also sometimes I'm too faint to stand much

Also my arms can get weak

If it was like this regularly I would think I needed a wheelchair, but when i don't even need crutches most days it's so confusing and unpredictable. I'm lukcy not to need them most days but I still wish it was more predictable, be that "never needs an aid" or "needs an aid more regularly"

I have considered getting knee pads in case of falling. Between drop attacks/muscle weakness, passing out and seizures and ||tics|| I'd say I have high fall risk

[jagged cliff]

It would be valid if you had a wheelchair, even if you use it rarely. If it helps you, even just a bit, then it is legit to have one

[west light]

I might try to borrow one from my municipality to bring when travelling quite soon. But I'm confused, also because every time I ask a healthcare worker they bring up the deconditioning risk but don't say no either. They just say "I don't know ..."

They've also sent me in a bit of a loop with "ask someone else"

[jagged cliff]

Urgh this is shitty, let's say there indeed is a deconditionning risk, what do they do with the falling risk???

[west light]

I can catch myself when I fall most times and have never had a bad injury (we're talking minor injuries to a finger) so they're not so worried. I think that deconditiong could e a risk that should be avoided not through alltogether avoiding all aids, but having instructions/a plan on what calls for using them and not ...

So basically the neurologists are like "nah no biggie, just live as normally as possible", but people in my personal life are awlays like "Don't do that you'll get hurt!!" And so are some non-neurologist healthcare workers

[stray zinc]

would a rollator help you?

[west light]

I've never tried one. I've thought about it. I feel nervous about using one but that I could definitely work on if needed

I did see a rollator that could convert into a wheelchair with push frames, but sadly it seems to be off the market now:(

Also, although some days I need no aids, I have also often had to rely on people helping me walk, and I basically don't go outside alone. Which is hard because I live alone. When going out alone, I've had strangers find me on the ground and call an ambulance

I'm going to a specialist hospital in a week and I'll get a 24 hour EEG and if I'm lucky some treatment and advice if I head home. But my parent is worried I can't be on public transport even with them there. I really want to go on the train, if I do I'm considering trying to bring a mobility aid on the trip, a pillow and of course medical ID

[stray zinc]

the rollz motion is a rollator wheelchair combo

altho it requires someone else to push you which can be inconvenient

[west light]

Yes, I've looked at it. One version is the one you were talking about that requires pushing, there's also a version that converts into an elctric wheelchair, so you can propel yourself, but I don't think electric is right for me

I think I should try to talk to the municipality ergotherapist

[stray zinc]

good idea!

i really hope you can find some answers

potentially with physio input and support, deconditioning may not be that problematic

(im in no way an expert)

[west light]

I've read one place that one's supposed to try treatment before mobility aids with FND, hopefully I'll actually get any treatment soon ^^

[west light]

Thank you!

I'll likely just try to get foldable crutches, as crutches are usually enough - it's just really frustrating on the days when they aren't

[devout tangle]

I am on the same boat! Also trying to figure out how to manage it. I have a rented chair that does help me with fatigue and has reduced a lot of my symptoms, like the muscle weakness and the drop attacks, because they get a lot worse when I am very tired. But a rented chair is not a sustainable situation and I don't think I can spend so much money in a personal wheelchair when I still don't have a diagnosis and won't know for how long I might need it. Plus I don't think my parents will let me buy one either, at least not without a formal diagnosis

[west light]

That makes sense! I am really lucky to live in a place where a lot of health care and even aids are free, it's so much easier then. I hope you get a diagnosis any relevant treatment or aids!

[west light]

I got a prescription from my GP to borrow a wheelchair for travelling in case I flare up at an airport or something. I'm nervous but I'm glad we got permission! (My mom was set on it being the only safe way)

I sort of still have this anxious guilty feeling considering most days I don't need aids, but I'm reminding myself that although most days are fine, for most people collapsing in a paralyzed crying mess isn't just "that happens sometimes" ... Which it is for me ... 🙈

Also with the physical, emotional and sensory impact of travelling I'm more likely to flare

(also hopefully I'll get a sunflower lanyard at the airport!!)

[west light]

We just got a chair, it was short notice so we had to borrow a medical looking one with no foot rests and too high armrests so I think the deconditioning risk is low cause I don't want that one 😂

My feet dragged on the ground when I tried it

How is one supposed to use one with no footrests?

[radiant quiver]

Yeah indeed 🤔 even more when your legs are too weak to walk you won't be able to lift them the whole time🤔

There are no ways to add some ?

[stray zinc]

are you able to make a temporary footrest-thing? maybe tie a wide piece of rope to either side and rest your feet on that?

[west light]

And I likely won't be using it except for if/when that's the case 🤔 I don't understand why they make them without

[west light]

I can try that maybe! And my mom thinks we may be able to get some attachable foot rests 🤞🏻