Have you made a costly mistake? Or have a tip to share? Comment bellow. Make sure to subscribe for next weeks video on how to pop wheelies. I have some amazing tips for you. :)
Wheelsnoheels - Gem Hubbard the only mistake I made was not going Chrome cause my chair is pretty banged up I live in red Deer Alberta Canada and the nice thing is my spouse is 4.9 so fixed handles my chair and didn’t cost to much aids to daily living the program I used to get my chair the government gave me 3900 dollar grant and so my chair only cost me 50 dollars canadain
Not understanding at the time just how small a ridged chair can become to fit in a car. I dont think its explained enough at the time of fitting just the big difference between a folding and ridged and just what each one can do and how that works around your needs. I think that might have been my largest oversight in getting a chair
Not getting suspension sooner, its a god send, no more being bounced around. Plus it gave me more freedom i can quite happily drop of a curb by myself and not need to worry that I will break either my chair or myself.
You all probably dont give a shit but does someone know a method to get back into an Instagram account? I was dumb forgot my login password. I would love any help you can give me!
I waited several years too long because my doctors have this idea that once people use wheelchairs it’s the end of my life as a person. I waited til age 30 and still they act like they’ve failed as doctors. I’ve been disabled since I was thirteen! I’ve missed out on so much in life because I felt pressured by the medical community to “push through my pain” when that made me housebound when I could have been using a chair to go outside. The United States is stuck in the 1950’s medically.
Same here, I'm 32 and I finally do my fitting for my 1st custom wheelchair in a week! I've needed one for 5+ years... At that time I was on "bed rest" for 2 years. I've been trying to walk with the cane since then and it's really limited me because I can only walk short distances with the cane, maybe about 10 minutes on a good day. Here's to new possibilities!!! 😁🥰🥳
LITERALLY the uk is the same!! I’ve been begging for a wheelchair or at least SOMETHING since I was at least 12. I’m 17. Planning to take dad to the next appointment because he doesn’t take bullshit and will argue with the doctor until he listens ☺️
@@stretchynoodlez Definitely! I'm so glad you finally are getting your mobility! It's a whole new world from a wheelchair but at least you can get outside and through stores and whatnot. You'll discover that many places aren't accessible but hopefully you'll find your favorite spots and feel much more comfortable as you progress 😊 I've used a chair for four years this winter.
States here. I am an ambulatory wheelchair user. For 3 years my dr and TP therapist wanted me on cane or rollator only. Insurance won't even pay for a wheelchair, because I'm not in it 24/7 and don't rely on it for ADLs. It really limited me to the house and affected my quality of life. After paying out of pocket (yes it was very expensive, but the alternative was so much worse. Broke, but happier) finally got fitted for a customized wheelchair. This video helped so much with the ordering. Quality of life goal unlocked!
I just got my first wheelchair evaluation today in the U.S. I feel like they don’t believe me with why I would need a manual rigid ultra lightweight wheelchair. I was really anxious because my disability is so mild but the pain is real. I have cerebral palsy. The PT gave me this nastiest look for coming in and getting evaluated
For me flip down handles are enough because I have a smartdrive, so I only need someone to push me in absolute emergencies, which don't happen often. I really hate the look of the adjustable ones and could not get myself over that. I also don't regret getting a gorgeous teal colored wheelchair. Scratches are part of the fact you use it well, I like it rough but colorful. 🥰
When I bought my second wheelchair the salesman convinced my folks to get a silicon grip for the wheel rims. Kinda regretted that afterwards as it gradually got chipped and peeled off Regarding fitting into the car, I wish I came across your channel earlier
I made the mistake of having someone who didn’t understand wheelchairs in my appointment with me, stress me out so badly that they pushed me to get a wheelchair that doesn’t fit me, width wise, it’s too big. My OT and everyone else tries to reassure me now that it’s not ‘too much’ space, but I feel like I’m swimming in it and I would’ve been better in the smaller model. I also hadn’t tried the bigger model and I should have booked another appointment specifically for that. I love the model of wheelchair I brought, I don’t like that it doesn’t have adjustable push rims but I can live with that. If it only comes in certain sizes, try them and don’t let anyone push or bully you into ordering something, especially something you know you’re not comfortable in.
6:45 I chose my custom chair while I was in the rehab hospital after SCI. I don't even remember this day because I was on a lot of pain medication, but I do remember that they did not explain any of the measurements to me, or what a wheelchair should fit like. They built it wide in case I gained weight and added features for the level of function I had at the time (which was not much since it was just weeks after my SCI).nI got my chair and it works just fine, but now that I have spent over a year with it, I'm realizing it's much too wide, the footplate isn't low enough, and the backrest is too high. Now insurance will not pay for a new one for another four years.
i started crying watching this, when you got to i wish i got it sooner. you are so right, I need to just get the ball rolling and talk to an OT even though I don't have the EDS diagnosis yet. I am struggling so much and barely leave my house, thank you so much for all the amazing tips
I would really benefit from a wheelchair I have hypermobility cfs and chronic pain I also dislocate a lot because of my hypermobility I can’t stand for long periods of time because it’s so painful and I can’t walk long distances I wish I had a wheelchair but my mum won’t let me get one even though doctors have agreed it would be good for me she doesn’t like me using a walking stick either because I’m only 15 and am not paralysed she thinks I don’t need one she hires one from Red Cross when we go places that would require me to walk a lot so she knows I have trouble and knows it could help but she won’t buy me one even though it would end up being cheaper for her than renting one out every time I go on a school trip or a long outing it’s really annoying
@@Wheelsnoheels I’ve just come back to your videos to find out more because my mum actually brought up the topic of getting me a wheelchair recently so I think she’s starting to understand or see my struggles more
Thank you! All the stuff you've said is gonna come in really handy when i either save enough or get funding for my chair. I've been so confused by all the different options but you broke it down really well!
I am a powerchair use, the main diff I have over a manual chair, I want it as heavy as possible, and the cog as low as possible, because the last thing I want is the chair to fall over, and again it is the car you need to think about, as the thing that limit me, is ramps and lifts, me in the chair, is just under 300Kg, of the normal limit of most ramps, The taxi I use ramp is only rated to 250Kg, so I have to get out of the chair when it is being loaded. the normal autochair lift to load chairs into cars is only 100kg and my chair is about is just over 150kg, once I have taken everything off so it fits into our car.
thank you for making this video, I can walk a great deal with no assistance but I'm looking at wheelchairs for distances (I'm hoping on an ultralight due to my being petite and having balance issues), your channel and others have helped me make the choice to finally start looking at wheelchairs and has given me the confidence to admit that I'm going to need one.
One of my big tips is to get mud guards not the usual straight clothes guards, they curve over your wheel so it’s more protection for your hands, you don’t get dirt flicking up but I find it’s really useful for dresses long tops etc etc because you can tuck them by the side of you and not worry about it catching in the wheels. Only downside is you can’t use the tyres to push and I know some people do this for extra grip but I’ve got surge push rims so don’t need to but I love love love my mud guards! Such a simple but useful thing ☺️
I had my wheelchair evaluation today, and this list was insanely helpful with getting me started with notes for what I did and didn't want on my chair.
I like how I’ve ended up starting with research with my P.I.P tribunal to appeal the D.W.Ps decision to not award me P.I.P and that is where I started to see your channel and now I know how to pick out the perfect wheel chair that I don’t currently need
6:55 I was measured and fitted while I was in the hospital. I got what they gave me.. as a veteran I was at the VA hospital... I have been wanting to get a new manual wheelchair that truly fits me and is more comfortable, but in disability not sure I could ever afford one...
This is so helpful Gem! I'm also hypermobile/EDS (and dysautonomia) finally starting the process to get my wheelchair here in Toronto, Ontario. I'd add to the "try it with your cushion" with "Try it with your winter parka!". Temperatures in Toronto range from very humid and high 30s Celsius in summer to below freezing in winter. The part about adjustable push rims is good to know. Health care in Canada is provincial not national, and Ontario only covers 75% of the cost. The other thousands of dollars have to be covered by the wheelchair user or "alternate funding". I'm so looking forward to getting out and being more social and active. Missing out on random outings with friends because of lack of seating sucks.
Hi, could I ask you if you have problems sitting upright? I've POTS (legs down is an issue) and in my fitting this was a huge discussion... There are only few active-wheelchairs with opinion to get my legs up :-( I would love to hear, if this is an issue for you too!
Thank you, I have never been given a choice of wheelchair. The rep from NUMotion shows up and tells me this is the chair your getting. I wish I was offered a choice. I really enjoyed ( I WISH ) you are very easy to watch. FYI, I have G.B.S.C.I.D.P, GUILLAIN-BARRE SYNDROME CHRONIC INFLAMMATORY DEMONIZATION POLLY NEUROPATHY. I WOKE UP 15 1/2 years ago, ( paralyzed )
Pro tip for getting stickers off for anyone who has put stickers on and no longer like them: glass cleaner I use astonish and have yet to find a hard surface it won't get a sticker off! If it's a full sticker soak a paper towel and leave it over the sticker it will peel right off (if it's stubborn add some heat with a hairdryer) then a quick spray and wipe will get rid of any residue
My dear Gem, now, after 5 years begging, l finally get an activ/adaptive-wheelchair! I'm so happy! 4 years l had to crowl with a rolling walker! It killed me, every time l had to use it! At july 2019 l got a lightweight - foltable wheelchair. But it's not good for my back, my joints, my vertebrals! My arms and legs are too long for this! Now, with your help by this video, l feel better to chose a good wheelchair! I'll tell you what it will be! Thanks, my dear, l'm so thrilled! Wanna use it so happy and full of grateful thoughts and thanks to you!
Very generous of you to make this video. Of course it's not a decision like purchasing a mobile phone or computer printer. Glad you are well. Blessings to your family. ♥
7 minutes into the video! I had a cheap chair I bought as my condition was getting worse quicker than the NHS could see me. When I attended the appointment I was measured and told my chair would be about 10 weeks! I had no say over the type of chair ie the make/model if it was ridged or folded what cushion I needed! I ended up with a chair that was so heavy I had to buy a hoist for in my car! That chair lasted about a year because I'm a "active" user! They ordered the same chair 3 times and they all died within a year! I didn't know I could ask for a specific chair! I now had a quickie ridged frame and its been with me 3 years!! OK so adding more 9 minutes in and the getting it sooner! I got to the point where I couldn't get to the car and my wife bought me a cheap chair! I still refused to use it and now I see how silly I was putting it off! I can now go places I still need to watch my energy and pain levels but I have a life again
Great video Gem, these tips are all so crucial for ordering chairs. I purchased a powered chair when we had a wheel in van from motability however when the van went back my now ex refused to drive a van so we had a car and obviously the powered chair wouldn’t fit in the boot so now my lovely chair sits collecting dust 😭 I’m only able to use it around my village which is so small I can usually push myself in a manual.
I'm getting measured for a new chair tomorrow, and I'm kind of excited about getting foldaway push handles. I need help sometimes, but I don't like the idea of people being able to just randomly come up behind me and push. :)
I appreciate the advice about looking into the future. I’ve been using a cane for more than 10 years. I’ve been getting worse, not expecting to ever being in a chair. Two months I went downhill and can hardly walk with the cane. I’ve accepted that I will be in one. When I was talking to the wheelchair guy one of the first things he asked was, where I expect to be in 10 years.
Thank you so much for your video. As I have been told I have to go in to a wheelchair . I'm going to be new wheelchair user.. after my illness . Love from Scotland
(i am chronically pained and fatigued, and generally chronically ill, for context) I have a 'hospital' chair which is good and does help me a lot but it is so much harder to push than it needs to be and I love the joy that moving freely brings me, but I have been thinking about getting a custom chair. Its a struggle to get one on the NHS as i am able to walk a bit. But this video made me realise how helpful a proper chair would be for me.
Dear Gem! Wow...this could not have come at a better time as I'm just about to begin the process of ordering my 3rd wheelchair. I definitely had no idea what i was doing the first time. This last time I ordered one (~5 years ago) I think I thought I had it down! .....I was wrong. Thanks for making this. Ill comment somewhere letting you know how it all turns out!
I wish we got to choose my mom's chair. The insurance company did. It was a basic manual wheelchair that weighed 55lb or about 25 kilograms. It hardly fit in our car and she was completely incapable of pushing herself. It would have better for her if she was able to get a power chair. But we werent allowed to choose.
As I don't have a spare £6000 I had to get one from the NHS, who didn't even mention anything about seat-back height. Now their all cross I've taken an angle grinder to it so I can actually get it into the car.
I've only been in the nursing home since my problem. It's been a little more than two and a half years so I have no outside wheelchair experience or exposure. But the cheap wheelchairs that are available in this environment are wore out and falling apart, and beginning to hurt my back and especially my shoulder blades. The facility I'm at now said there was nothing they can do to improve what was available. So I felt it was time for me to go ahead and get a chair of my own. Being in covid lockdown I cannot go out and test anything so have relied only on internet. I hope I made some good decisions and guesses. I will keep you informed about them way or the other.
I messed up with the weight of the chair. I got a tlight Zra and it was only supposed to way about 10lbs, but the fine print said assembled it was about 40lbs. I traded out the rigid back for an upholstery back, along with a couple other things. It is a light chair, but not what I expect. Thanks for the vid!
I was showing off wheelies in my wife’s chair. Next thing flat on my back with a puzzled expression. Luckily didn’t hurt. My wife was laughing her head off.
Here in the US we go to a person who works for the wheelchair company (like tilite or whatever, United Access is where I went they sell all kinds of wheelchairs. I looked it up online first to get an idea of what I needed. But they measure you for your sizes and make it to your specific needs. If you have tilite available in the UK we also get different colors ect.
I'm currently saving up for a wheelchair because I have a nervous system disorder that causes severe, body-wide pain and fatigue. I'm wanting it for events such as going to the themepark, the mall, the zoo, etc, as these things can wipe me out for about a week afterwards from fatigue. I wish I could consult my physio about it, but she completely dismissed the possibility of me getting one. I've spoken with multiple other people with similar conditions to me who have had the same thing happen. Thanks for the informative video!
It's going to sound harsh but find another doctor. Spent years being told I wasnt sick and that I was fine and finally when i was diagnosed by a specialist everything made sense. Without continuing to advocate for myself and fighting to find doctors who believed me I would of never reached the quality of life I have now.
I Just wish I could have a wheelchair that was lightweight with a quick release walking stick holder for convenience of transfer when rising out of the chair. i use a rather large quad ferule on my current stick
Wow, maybe it's because I'm in America and have government insurance, but I had no options and no one measured anything. A chair simply showed up at the hospital as a rent to own deal. I didn't have an OT talk with me about it at all. Even my second chair years later was the same way except that I told the receptionist at the doctor's office that I needed it wider. I had to guess the width because no one measured. The first one was terribly heavy and my mother was irritated at having to put it in and take it out of the trunk. The second is lighter, but my husband is tall and he has to stoop to push. I wish I could have the foot rests on my chair but my family finds them too annoying to deal with. You're very lucky to have the NHS.
Dear Gem, first of all: thank you so much! My diseases are a lot why l need a wheelchair. A few: 12 vertebrals have protusions - my right knee had 2 surgeries, both didn't work, so l can't walk with it - my left knee is so plane0as my right was but although bone sits on bone and it hurts a lot l need it this way cause if surgery right knee goes bad l don't have the strengh to go - my fibromyalgia is worst degrees and my pains are extraordinary! - all my joints swell when they're used and that's hard! My shoulders had surgeries, too:left one 2 times, right one 3 times. The joints get infected like the others and in former days it had begun with infections of that 2 joints and docs didn't see that this cohers with the others for many years. l was 45 when finally they've noticed. Paralysed parts in intestine and bladder, my right eye peralysed, too, (when l wanna look right l can't). And l'm half deaf, helping systems only help very poor. Then one doc asked if l ever heard of mb. Hirschsprung. That was first diagnosis with my stomach. But diagnose went on. I asked, after searching, if there was another diagn. cause l have so many things going wrong and asked if l could have the "Waardenburg syndrome". lt's very seldome capse most persons with it are diagnosed with Trisomie 23 and then abortion is the solution for docs and parents mostly, too. My brain is full ok, au contraire, l'm high leveled in several tests, about 132 to 135, all ok.But l need a wheelchair with power assistand wheels. I got a normal foldable wheelchair like for persons who need it for 6 weeks when broke a leg, e.g. , not for people with special needs. My ortopist is a special form of idiot, sorry, he can't understand anything. So after that experience l went to my other doc , she is the one l go to with nearly all of my problems.She's great and she gave me a precipe for my My Emotion M 25 by Alber. That helps a lot! But l don't know what to do or say to get a wheelchair l need! I never will get better, sadly, l'm 56 but l feel like l were 89 or 95somedays and more! Thank you, this here is so long! I didnzt know how to tell you in short sentences what l need or what's the matter withme! Please, l need help, my wheelchair hurts my back and is heavy! Please, what do l have to do or to say?
Interesting. I went from push handles to no push handles when I got a new wheelchair. I wanted it as lightweight as humanily possible. I was in doubt tho. I would not have dropped the push handles if it wasn't for the fact that I also use a SmartDrive. I'ts a panthera s3 chair. very satisfied with it so far. But there might come a time when I want the push handles back. one never knows :).
Fabulous ...Met the new Batec rep this week and tried the Mini2.TERRIFIC .Chair was naff Germany is not good on chairs Well Berlin isn't.What make is you pink wheeled one and I did like the black... Will write in detail ...You are a star :)
I have FND and im considering getting a wheelchair to gain freedom back, ive been fighting for my rights to be heard with alsorts of people, my legs are so painful and standing causing alot of pain. What tips do you have for someone who lives alone and has no one but knows very little about wheelchairs
I wish I'd thought through getting the chair into the car. I assumed I'd be able to lift it in myself & when I got it, on a good day I could lift it in & out once, but I couldn't do a multi-stop trip, and it stopped me going out on not-as-good days. I'd chosen a cheaper powered option as I assumed I would lift it in myself. Turned out I haven't been able to lift it in reliably enough, but it'd not compatible with a boot hoist with my car - this means I need to look at getting a wheelchair-accessible vehicle (WAV). If I'd have opted for the more expensive powered wheelchair, it would have been compatible with a boot hoist with my current car, or another regular car, and would have ended up cheaper than getting a WAV.
I'm looking forward to your wheelie video. I think my issue with my chair is how my center of gravity is set. My chair is very adjustable and the wheels can be moved forward and backward, so I would like to know where the center of the wheels need to be in relation to your back. Also, how much "dump" the seat should have to do a wheelie. My chair seat is set at a 90 degree (flat) and makes it nearly impossible to do one. I'd like it to be set more like yours where is slopes down toward the back slightly. Thanks!
I have just watched your fabulous video. You have helped me a lot. Can you tell me where you bought your wheelchair please as I can't find one on line without the usual arm rests and I don't want arm rests. A side guide would be a lot better for my needs. Thank you very much. xx
Gem I have a degenerative illness so I will end up using my wheelchair a lot more, luckily my wife isn’t very tall so the grab wheels are perfect height for her. But I know I will need new tyres and I’m interested in the wheel rims as I have to wear gloves when in my chair, but I don’t know how I will be able to afford some of the things in the future?
Unfortunately those push handles weren’t available in the company that I went for which is frustrating as I got flip down push handles, I can push a lot but not uphill! Height changing ones would be ideal ! X
I was told that I HAVE to get push handles. I don’t know if that is because I have Medicare or what. Has anyone with medicaid or Medicare been told that? I don’t want push handles because able bodied people don’t ask before touching them. Also for some reason I ended up with the same really uncomfortable backing that I had last time. So I don’t know if I am limited on that or what. I have to use a small pillow to be comfortable and that shouldn’t be. I should be able to have a backing that won’t cause me pressure sores. I’ve thought about getting a pink wheelchair, but I know I will probably only have a pink day a few times a month lol.
Hi I got my wheelchair though the n.h.s but I didn't get a choice of wheelchair but my cushion is comfortable but I would like to get something more suitable for me I have a quickie neon 2 . Through the NHS . But I have problems with upper arm strength what wheelchair is the best for people with spinal injuries mine is the L2 lower spine injury . Any info would be great . Thanks .
All this talk about getting the right measurements when my wheelchair is just a standard manual Drive wheelchair that’s way too heavy for me to get around in by myself because that’s all I can afford (I live in the US and my health insurance wouldn’t cover a wheelchair because they say I don’t ‘count as needing one’ 🥴)
Hi. Great stuff! I was told that it's ok that my footrest has 12cm (5") clearance since I'll be getting 5" castors. I understand that minimum clearance should be 5cm (2") clearance. It sounds high. What do you think?
Do you have any advice about buying a wheelchair for use with babies / young kids? Or does it even affect the decision?I've been debating getting one because after having my first I couldn't really go out for nearly a year. I currently can walk for about 10-20 minutes with a cane but we want another baby soon and I don't want to go back to being housebound for so long.
I got my current chair based on my T9 level and had above average strength and endurance (35 miles wasn't an uncommon distance to manually roll, including extremely steep hills) Since march 2nd I'm a C7 with lowered handfunction and now lack of strength, do I regret not getting push handles? No as I'm getting E-motion wheels so am keeping my undependability and don't like being pushed around.....pun intended
I think the "pro activ ergo back" does it great, it is curved at the top so it could be used to push but doesn't look like a push handel nor restrict your movement. I really liked the idea and look of it, but with such a fast progressing disease like mine, I prefer push handels and the tarta backrest 😅
Hi I have PP multiple sclerosis and am looking for my first wheelchair, I have identified the Quickie Helium or Krypton, what advise would you offer? Thank You
runningwoodchucks Hi I have PP MS The last four years I have become more and more dependent on my Wheelchair, the biggest mistake I made when I was getting my first, was not trying it out at home for a longer period of time, getting stuff out of the dishwasher, the washing machine the fridge and cooking in the wheelchair, because in the beginning it was easy for me to stand up and walk in the kitchen. I would advise you to try the Wheelchair you favor as long as possible in your house and all the other places you have to go, make a list of and Think twice before you decide. I had to buy a second wheelchair on eBay, foldable and very light weight to fit in my parents car or in a regular taxi. After a couple of years I even bought a third one to fit on my wonderful power handbike. In my opinion, no matter how much you take everything in account it’s impossible to foresee all that might bee in the future so the main issues is adjustability. My wheelchair my insurance payed for is made in Italy it’s Venus by Offcarr it has some electric wheels made by Albert, my foldable wheelchair is made by Küschall and my handbike 😍 and the wheelchair that gos with it is made by Pro Active. My current wheelchair it’s very good looking but doesn’t fit all my needs my next one will have an adjustable back, a bigger footrest, removable Cloth protection and much much more😅
I'm going to get a chair soon. How does a custom compare to a transport chair? I know a bit, as my stepmom is an amputee and has one, but I want to know more. Can people share their experience, and the pros and cons of different chairs??
A basic transport chair will not meet your specific needs. Transport chairs need to be pushed at all times too so no independence of movement. I personally would only use a transport chair in emergencies as I like independence. Manual wheelchairs it is always best to eventually go custom as off the shelf chairs usually heavier and may cause more pain. I use a power chair as unfortunately even a custom manual wheelchair wouldn't give me independence as I'd need pushing as I have M.E. Cons to custom chairs are the cost. Manual chairs cheaper than powered.
@@Wheelsnoheels transport chairs are the crappy chairs they sell at walmart and other retailers that are mainly used to transport people short distances. They're too wide to be comfortably pushed by the user, very heavy, and bulky to use. (They're what I'm stuck using now and I HATE it) they're not true wheelchairs, and are made for a caregiver to push someone, not really for pushing yourself
@@ecologist_to_be I'm currently in a transport chair (because I have no other choice) and it's awful. They're not really meant to be self-propelled, and I'm a small human, so they're so wide that it causes huge strain on my hypermobile shoulders, often dislocating them
I finally got a diagnosis after years of often painful treatments and researching they found a extremely rare condition. And I will get a wheelchair I'm so unbelievably happy I cried. The wheelchair for me means freedom means less pain means I can go shopping on my own again, and I can go walk my dogs a lot longer. I will watch all the videos 🤣
6:45 I chose my custom chair while I was in the rehab hospital after SCI. I don't even remember this day because I was on a lot of pain medication, but I do remember that they did not explain any of the measurements to me, or what a wheelchair should fit like. They built it wide in case I gained weight and added features for the level of function I had at the time (which was not much since it was just weeks after my SCI).nI got my chair and it works just fine, but now that I have spent over a year with it, I'm realizing it's much too wide, the footplate isn't low enough, and the backrest is too high. Now insurance will not pay for a new one for another four years.
I really wish they would send you home with a loaner chair from the hospital so you could figure out how you adjust to life in your chair before spending lots of money on a custom built chair - these are our legs, after all.
I got my first wheelchair last summer and asked for adjustable push handles but was told I wouldn’t need them. I wish I had advocated for myself because I really regret having handles fixed on the backrest. So even if you feel uncomfortable speaking up, like me it’s really important, or bring someone who you know isn’t afraid to speak their mind😂
You summarized the considerations fairly well, there's maybe one parameter I would mention: I can't keep my legs together, they just angle apart. If you're like me, you have to make sure there are no bars anywhere on the side that would cut into your leg. The same bars that would be comfortable to grab onto doing floor to wheelchair transfers which you maybe need to do once a week at most (if at all), will be a daily nuisance for your legs when you're sitting in the chair. It restricts blood flow, if you can feel them they chafe, it's just unpleasant. Professionals disagreed with some of the parameters I picked with my wheelchair (like the seat width). I'm happy with them. 7 years in the same chair, there isn't a single thing I would change, and it was literally the first active wheelchair I could choose any details on. The previous 15 years I always had regular indoor wheelchairs. Adjustability is a must. You lose some weight, your behind gets bonier, you need a thicker (higher) seat cushion and your legs suddenly won't reach or will be angled uncomfortably, unless you compensate with shoes that have higher than normal soles. But if you want to get shoes with higher soles than normal for your normal sitting height (like women wearing high heels for an event), you expose your butt to more pressure, because your weight will be distributed to a smaller surface area, ulcers guaranteed. And those considerations were only for the foot rest height. There are a myriad of other scenarios where you're better off with a wheelchair you can adjust.
I wish I recorded my initial meeting with my DME, because what they wrote was not what they said, and because I was new then I didn’t know the difference.
Absolutely fantastic video Gem!!! As an Occupational Therapist I wished they showed this to all clients before they came in to be assessed for there first assessment. When assessing clients for their first wheelchair our seating specialist always advises us to prescribe a chair that has the capacity for a bit of adjustment as the client works out what they are looking for in a wheelchair. Working in the Australian health care system and in particular Victoria I believe we have very different funding from the NHS. People can get funding for another chair a couple of years down the track when they need one. I would love to hear the NHS in a future video and your experiences...
Ah thanks so much for this. Im always a bit nervous when physeos and OT's comment, as I just don't want to get it wrong. I dont have the specialise knowlage you have. Only Knowlage based on my experience. I would be heart broken if I gave the wrong information. I'll see If I can work on a video on how to get a wheelchair on the NHS, and how our system works. we have something called the voucher scheme too. But it is based on needs. :)
I have an NHS chair and a self funded chair, (I have Ehlers-Danlos syndrome) and one tip if you are going down the NHS route is to see what 'active user' chairs are available. Here it's a quickie argon 2 and I've just had my second chair, which is a really awesome bright pink. I was only allowed black for the first one. Think about footrests if you ever plan to use a freewheel, the tubular footrest is better suited for one of them. Ive got fenders this time which I love, tapers, and a roho cushion. I have loopwheels which have made the world of difference to pain that goes through my spine (like electric shocks) my husband bought me a smartdrive last week so I'm getting to grips with that atm. I'd def go and visit mobility shops and see what's around. You can get a voucher but it not always the best option. I was told for a voucher they'd give me £900 towards my chair, which includes 5 years of parts, so all the tyres and so on, but my actual chair the NHS buy at cost price, if I was to buy the exact same chair I'd be looking to pay around double for what I have. So sometimes the option avaliable at clinic is better, and anything that goes wrong with it, is covered by wheelchair services. Which especially if its your first chair and you end up having things changed on it could be costly if you are self funding. My other chair is titanium which I didn't like to start with, but I adore it now. But I can only use it if my husband is with me, which is the only downside as the power assist wheels are like 11kg each I think. (alber m15's) I love it because its super easy to get around with, I can use it all day long without battery issues and it will usually do a week between charges which is awesome., and it cost me just £500 on ebay. You do have to be careful with second hand chairs that the size is right for you. I'm tall ish, and at first I thought it was awful till the roho cushion came. Now it's perfect. 😊
I don't like or even love my chair. But because of what the program I have to go through to get the chair there is only a limited type/level that I am eligible to get. Sadly the chairs that I know would be best for me in a year or two in my future (as I know I'm losing function) but because they are now allowed through government regulations to take that fully into account it can't fully influence what I was able to get. Ended up with a level 3 (when a level 4 for me would have been better - as they are by far lighter - under 15kg) can't even get a smart drive as it isn't considered a benefit as they do not believe I would benifit from it despite having ME n when active I go hypo (low glucose levels) without warning or knowing I'm going hypo (I'm hypo unaware). Sadly it doesnt fit right in our vehicle, but like I said above I don't have a choice so I have to work with what I'm able to get. Colour wise I don't have a issue with it its black on black which for me works well enough. But I am pleased that the rep was able to get coated push rims (so don't have to always use gloves with grips in cold/wet weather). Over all I am not happy with what I could choose from but all things considered and what i have to deal with to get it (paid for through a government program for those on disability/pip) it is workable for the here and now.
I really wish they disnt make my wheelchair so long haha they made it too long so they had to bring my seat forward and wheels forward and be I have this awkwardness in the back :/ I wish they could've just started all over 😅
I think the main thing is choosing something you feel comfortable in and like the look of Definitely agree with the backrest height you have soooo much more freedom with a lower backrest I’ve put helicopter tape on parts of my frame that are easy to scratch I hate armrests again more freedom without them Another thing is to make sure you get the right push rims
Thanks for your imputs! I have hEDS some POTS and recently have gotten much weaker even doing physio and exercices at home. So I go out less and less because it makes fatigue and increases pain. So I started looking for wheelchairs. I think I need a light chair, or maybe one with E- motion wheels for support of my arms.
3:36 With your...what? I don't know if this was an oversight on my part, but I do remember my latest wheelchair initially not having a footplate. It now has a makeshift footplate that supports my feet, so it works for me...if only because I never go on the floor anyway.
This is so helpful I am getting my first wheelchair soon I’m going with a Heavy Duty Frame because of my weight gain from steroids due to my HEDS but I’m super glad that I saw this video!
Excellent video! I'm on my fourth chair and got my most recent one last month (after like a 6 month process with a specialist and OT). Finally feel like I have the right chair for me but I'm sure in a few years I'll find some nitpick to change around. Great advice! Probably my own bit of advice is choose the correct handrims--there's a wide world of handrims out there that vary from the standard and one of the biggest game changers I made for myself was moving away from the standard, narrow, round profile aluminum pushrims to an ergonomic handrim (specifically the Surge).
Currently I use a cane becuase my knees and other joints are slowly hurting worse and worse and its getting harder to walk around. At this time I can use a cane and be fine, but I know that my partner already needs a chair and doesn’t have one, and one day I will probably need one too. Hopefully I can use your advice to get them a chair and oneday myself one
