Just diagnosed this year after 39 years of saying I was hurting and no one listened. Just started looking for a wheelchair after years of just a transporter chair. Thanks for the video.
At 20:30 when you put your hip back in, mine do that too!! It freaks people out- more of a "thunk" than a "snap"!! I don't think I've ever seen someone put it in similar to mine!! Also, your haircut is so super cute💕💕💕
You are so inspirational. You're not letting anything get you down - kudos to you! Your wheelchair looks amazing. I purchased a folding wheelchair for my partner as she's waiting for knee replacement surgery and having extreme difficulty walking due to lots of pain. I noticed your chair has about 3 degrees of negative camber on the rear wheels and as my chair doesn't have any option for camber adjustment, it was a case of wheelchair - research - workshop - tools - equipment all put together and finished result now is her chair has 6 degrees of negative camber. Looks really good and more importantly more stable for sloping surfaces. After a lot of reseach it didn't take long for me to realise that rigid frames are definitely the way to go full stop! Thank you for your inspiration.
It's great that insurance covered that! It always baffles me some of the things insurance fights about. A few years ago I was told that they wouldn't cover anymore physical therapy until I hurt myself again!
Awesome chair! I only have an old wheelchair from ebay, and my doc onl prescribed me a walker. I am not able to go far with m rollator and I often fall. I can´t self propell my heavy chair and live alone. I got EDS diagnosis confirmed, but no doctor willing to prescribe me atleast such a push helper for my chair that you have. I live in Germany where health care is suppost to be good lol I will go on and fight for my freedom! And every zebra I meet online motivates me. You, too! Oh and I love the color!! :-)
yeah I live in New Zealand and everything is funded except if you have something rarethat the healthcare system doesn't know much about lol. I had to save up and buy a second hand power chair myself but it was SO worth it! I got prescribed a walker too but it's not at all realistic for long distance and I mainly just use it around the house
yes!!! My diagnoses aren´t even on the list of the health insurance, just problems with agencies, as joint impairement and walking impairement got meassured by how stiff the joints are, EDSer are screwed lol even tho they come home and evaluate you and see you fall and struggle and hearing you popping and cracking, it is not listed on paper. By now 3 months later than my first comment I got diagnosed with POTS and I´m falling even more, even at doc appointments the scrap me off the floor. Hurts my knees and my hips sublux. My ebay chair broke and no money to fix it. All money goes to calling taxis and I´m down to one meal per day to afford this.. doctor visits. It´s bizzaro world for rare disease patients. I´m so so glad you got yourself a power chair after saving. I got a neck brace by now and compression socks and an event recorder implanted, yet I lack mobility. and more and more lacking will to live tbh planning on showing this video her to my orthopaedic- I need those aides
Ich bin auch aus Deutschland und ich finde keinen Arzt der sich überhaupt mit Eds auskennt.. und ich kann nicht nach Lübeck zum Spezialisten.. ich lebe in Süd Hessen fast bei Bayern und müsste viele Stunden fahren und im Hotel wohnen
I'm just starting this process myself. I'm a Zebra, but my joints aren't as hypermobile as most EDS'ers. I just subluxate, not dislocate. I'm 45 and finally to the point where I need a wheelchair part time. I have the Rx but waiting for the initial eval. I'm guessing mine will take 6 months easily because I'm on Medicare AND Medicaid. Thanks for this video!
I may have EDS (seeing a Rheumatologist in March (hopefully)) and I at least have joint problems that are getting progressively worse and I really loved this video, it was highly informative, thank you!
Your chair is amazing, in the UK.you either have an NHS chair or you have to fund your own chair which costs thousands of £s. My NHS one is heavy, cumbersome and restricts movement, especially in the top part of my body. I constantly have bruising on my arms from pushing and on my legs from transferring from chair to bed where the break catches my leg. I suppose I should be great full but when I see your chair I can’t help but be envious.
Check Facebook selling sites and groups I recently got a really good deal on a lightweight sport chair (£150) that would have cost so much more to self fund, mostly people just want rid after getting a new one or no longer needing it
Sadly not, I've had a sit in it but I'm going out tomorrow and I'm gonna use it, my mum is really controlling and won't let me use it (crutches or nothing) :/ From the sit I've had in it though it's really comfortable! Looking forwards to going out tomorrow
I’ve been through the colour ranges of chairs pink, purple, blue, red, bronze, grey and black. Used to like bright colours but now opt for black because it goes with everything including my black car.
Currently watching this. Part time wheelchair user myself, and it's so, so nice hearing in voice that I'm not alone there. Found your channel as it was recommended. I'd love a custom myself, and am so wondering about the process. Plus, I'm afraid to bring it up to my doctor (and don't want to spend the money if I don't need it long term - though it's not like I can get better with EDS). So thank you for this! Subscribing.
Thank you so much for sharing! I've needed a chair for awhile now, for part time, I fall and dislocate so often, I live alone, and there's so many times I want to do something out of the house, or even in the house, but the dislocations and I have TBI (traumatic brain injury) and some type of autonomic dysfunction (and eds hypermobile ;))... But I've gotten a chair on craigslist, but it's not helpful because I dislocate my shoulders loading it in the car, and my current place is very much not accessible, at all, lol... I can't wait until I can move to a one level place and somewhere that I can use a chair inside when I need to, cause right now it's just... I never thought I would get so overwhelmed by pain but it's... Really rough right now. Did your doctors worry that you having a chair would make you less active? (that tends to be what my doctors have been thinking... I'm overweight, though I've ALWAYS had chronic pain and dislocations, the weight came after medical issues and being put on a ton of different meds that didn't help, but I gained weight, and I have tried to lose it, but it's hard when anything I do makes me feel like passing out, and honestly I still do a bunch of things... I've ended up with 4 rescue dogs (long story lol, but I'm glad to have them, but even on my worst days I'll have to crawl on the floor to let them out and feed them, etc, so I'm honestly not lazy... People tend to assume that, but I really... I try my best) Anyways, sorry I ramble, thank you so much for sharing this information about your chair as well as how you went about getting it... I would LOVE LOVE LOVE to be able to get a chair like yours, I've even looked at trying to build a lighter chair with pvc pipe or something, so I could have something better than the big standard ones people get from hospitals etc (and I got off Craigslist haha)... Also, I love the brakes, they look effective and also like they wouldn't cause dislocation if I use my fingers (I'm grateful for my fingers generally being stable, my thumbs have decided they are pretty much... Not stable anymore lol... But at least I've got 4 fingers per hand that are currently pretty stable, so I can kinda use my fingers to do things rather than my thumbs, even if it's a bit different, it works, haha! But those brakes look like they would be easy to engage and release without too much pain! It BAFFLES ME that you don't find the hip dislocations agonizing.. I remember when I was a little kid, I now realize that my hips were at least subluxating regularly, as were my knees... Shoulders have been messed up consistently and most significantly for, idk, forever lol... But shoulder dislocations definately hurt me, depending on how much I've been conditioning them and keeping them in shape it was painful but still quite tolerable, I still could do dance (color guard), it was bad still when I didn't warm them up enough and condition them before getting into things... I actually didn't realize until I was 21 or so that my "bad shoulders" (right one is worst) were bad because they were dislocating regularly haha... I didn't realize everyone didn't have pain all the time, lol... And it kinda made sense in retrospect that it grossed out a fair amount of people when I would "crack" my shoulders... I guess it did look and sound kinda gross since I realize now that was actually me reseting my shoulder, which is why it moved so much when it popped into place and I felt so compelled to do it so it would feel better! Maybe it's just because I'm older (I'm 29 and I feel... So so so old, like... I used to have so much energy, and now it's hard emotionally to accept my limitations, or as I often do, I don't adjust my expectations of myself and end up collapsing and feeling AWFUL and getting upset that I couldn't do everything I wanted to get done, and just being beyond exhuasted and in pain/nauseous/lightheaded/vision and hearing issues/head pounding/migraine, etc... And then I just lay there and think about how I can't spend my life like this, I have to find more solutions, so I give myself a bit to be upset and then think about what I can do to improve things and keep moving forward. I accept chronic pain - it's only when it's beyond overwhelming and hard to stay conscious that I get to a point of feeling really overwhelmed. The pain management specialist just said to take Ibeproffen, 800mg, lol... Which a) doesn't put a dent in pain when it's at that point and b) that stuff DESTROYS my stomach lol... It's horrible on anyone's stomach, lol! So... Meh. And the doc dislocated my thumb and made me do all these things to prove the Brighton scale, which I really didn't want to do cause it makes those things worse, but he... I wanted to prove myself to him so maybe he would help, ya know? I just ended up in a ton MORE pain, feeling like it didn't matter, and the guy just said to exercise more... I WANT TO BE ACTIVE! I LOVE BEING ACTIVE! if I had a wheelchair I would be more active because, as you said, you're able to be more independent with the tools it gives you! I fall so often, and I have no bail out if I can't function, and I have to climb a flight of stairs to get to the bathroom and sometimes I'll hold it so long ill have an accident because my hip dislocation is constant, sharp, intense, pain. It happened over a year ago and never got better... The er told me to use crutches and stay off the hip for a week, and thought my concerns about my shoulders and the crutches were nuts lol (the nurse was like, "when people come in with a shoulder dislocation, we have to sedate them to reset it... They don't just put it back in themselves...." Lol... So I tried using the crutches, within 24 hours I had dislocated both shoulders and both thumbs (which hasn't been dislocating before then, but as you or someone said, once something dislocates in us zebras, it pretty much keeps doing so) so I figured I would have to just walk on my hip cause it was better to have one dislocation than 5, and my PCP said she didn't "believe in narcotics" which I know they have issues, but good golly, she didn't even think it was worth trying to get insurance to cover a wheelchair, lol... So I got one on craigslist at least, the way my place is laid out, I can't use it in the house though, there's no space... The x ray showed my hip was fine, but it's been severe pain since then, and I have full range of motion so I was told to just keep doing the things pt told me to do, honestly though it feels like there's something wrong, and it's not like I'm not familiar with dislocations lol... I feel like someone would listen, but... I'm totally just not focused and rambling, and I am just hopeful from seeing your video... I really am a happy person most the time, and pain hasn't taken that away from me, but it's just at a point where it's just ridiculous to me that doctors would expect me to just deal with it. I'm surprised though that you don't seem to have anything near the intensity of pain I do, though... I guess part of it is that no two zebras have the same stripes... You just handle so many dislocations so calmly, and I know it must still hurt you... I don't know. I've always thought I had a high pain tolerance, but maybe I'm a wuss? Lol. :-/
Gymnastics Daily, and that was a really helpful response, not! While I don’t have the issues above, I can at least empathize and try to offer some support - even if it is just an ear to listen with or eyes to read. I wouldn’t be able to offer advice necessarily as I haven’t been in that situation, but sometimes all the person wants is for someone to care.
Thank you so much for making this video and explaining everything so thoroughly! I know videos are a lot of effort, but I really enjoyed it! I'm a fellow EDSer, POTS, and myriad-of-other-issues girl, though I have a secondhand wheelchair that I absolutely love, I'm always on the lookout for elements I want to have on a custom chair should I ever get one. Thank you for taking the time to make this video and explain your lovely wheelchair!
I wish you every happiness with your chair, well for four years, eleven months, and three and a half weeks (!), ...and then definitely get another new one :) I loved my custom chair, but every time it broke, nnnooooooo!!! Now I have a new chair I keep the old one for a spare, but I also use it if I’m going out in the rain, getting filthy going somewhere grassy or muddy and when it’s cold outside so I can transfer into a warm chair when I get home :) Also, I like what you said about testing a chair first, my thumbs kept getting dislocated by being trapped between the push rim and the wheel, now I have it so there isn’t enough room for them to go between - it was painful working it out though! I have push rims called ‘surge’ that have a bead of rubber around them and are a flatter shape, they make a massive difference with pushing and stopping, especially when it’s wet out as my grip is rubbish. Billie from UK (...also with EDS!)
You can get a wheelchair with fold down handles (mine has that), which is a nice feature. I usually keep mine up anyway, since I get tired trying to push myself, but being able to fold them down so that strangers don’t push you is a good thing. And they will- I have had strangers push my chair out of the way like I was furniture, or rest their hands (or even feet-eww) on my chair. A wheelchair is an extension of the disabled person’s body-If you wouldn’t touch a person that way, don’t touch the wheelchair that way, and if you need the person in the wheelchair to move, please just ASK (the same way you would with someone not in a chair)
What's your address? Definitely not asking because I want to come steal your dog or anything .. Seriously though congrats on the chair; I hope it's helping!
Great video I have several palsy so I understand life can be difficult but life can also be a lot worse that’s the way I look at it and that’s what keeps me going because I’m able to do stuff for myself so that’s what keeps me going but anyway great video keep them coming happy new year
Me again - so this smart drive thing, I've been hearing a lot about them and I think it would help me gain a lot of independence, however one of the things I notice when I am navigating through crowds is that I am constantly making slight adjustments to speed. It's kind of the same when you drive a car, I have hand controls, so having cruise control is a really useful feature, but I do notice when I set it at the speed limit for a road there are often moments when I think I'm too fast, but they pass quickly, it's adaptive cruise control so if there were a vehicle in front of me it would slow down, but the smart drive sounds like cruise control without the adaptive bit.
This is the first video I ever saw of you. I was immensely impressed by the way you relocated your own hip and stayed:) seems so long ago now. I hope you're well!
I have the same smart drive on my TiLite ZRA wheelchair, and it is great!, Thank you for this video. Also with the smart drive you can turn side to side, you can't even feel the smart drive on the back. It rolls sideways super easy!
I live in Minnesota as well and I'm just getting started in the process of getting fir for a wheelchair. I'm really excited because I think it will help a lot! I'm curious about what you do in winter with snow. I've scoured RUclips for more information about that and I haven't found much if any. Do you have any advice with Minnesota winters (specifically snow)?
Hi there! This is such a good video and awesome wheelchair. Two questions: can you have adjustable handles added to the chair so that someone else can push if needed? (That was my main question). Given its a rigid frame, how does it fit into a car even if though the wheels and smart drive are detachable? If I like yours so much better then the line I'm approved for and trying to get altered. I look forward to listening to more of your vlogs!
I'm a little surprised you don't have tension adjustable straps in the seat (you can also have them in the back if you have a more basic back). I have similar hip problems to you and as you can see in the other comment I didn't have the best help in getting a suitable wheelchair, however the tension adjustable straps are the most amazing thing I have come across. I am heavier than you so more roundness over my bottom, it means I can have the back one slightly looser and it still fits and supports everything,
Hey hun just wanted to let you know your wheels are on backward if you didn’t know. For the tires the arrow shape needs to face forward. Hope you didn’t find that annoying but it makes a difference
THANK YOU for making this video! I need a custom wheelchair and didn't even know where to begin. I have a prescription from my dr but it just says "wheelchair". What does it need to say on it to get a custom one?? I have Syringomyelia which causes cysts (called Syrinxes) to form inside of my spinal cord. My Syrinx is located in T-8 through T-12. Because Syrinxes can cause paralysis if certain nerves are damaged I'm not allowed to lift, push or pull anything over 8lbs. So I definitely need a super light weight wheelchair but also need something like a smartdrive as well.
This helps me so much!! Yesterday I started my process to make my own weelchair for my EDS hypermobility. May I ask you how old you are? Thank you for the information about the weelchair aspects!
I have hypermobility and I spent over a year of my life in a wheelchair and I can tell from the pain and dislocated kness that I will be back in one again soon. I can sprain my ankles just by walking short distances.. plus my knees go backwards all the time.
I have mixed connective tissue disorder but instead of dislocating joints i have arthritis in the joints. You must be in so much pain everyday and i wanted to say that your not alone.
I'm in the UK and my chair I bought of a selling sites as I'm finding it hard to get from the NHS, unfortunately that means it isnt as lightweight as I would like and it puts more stress on my shoulders, I need to get one better suited for me but I'll have to pay for it myself unless someone listens properly and I can get a voucher to go towards what I'm after
Thank you for sharing. I need one of those. That way my husband won’t have to push me in my wheelchair. I’m home a lot because I don’t want to depend on anyone. And I’m unable to walk. If I use crutches in public I’ll fall if someone bumps me.
Awesome video. So very helpful. My daughter has EDS and is entering the wheelchair zone. Did insurance cover the cost of the upgraded wheels, and the smart drive? (I know we likely have different insurance, and obviously different bodies. Just curious your experience.)
Hi, I'm a fellow Zebra (& POTSie) in the UK. I use Smarcrutches (plus ankle or knee braces) or a mobility scooter. I have a folding Enigma Spirit wheelchair but I'm looking into getting fitted properly for a lighter, rigid type...if I can get referred to wheelchair services! Wheels make life much easier. Your wheelchair looks good. How easy do you find self-propelling on the pavement? Sending fuss to your pup.
Update: It turns out its hard to get funding for part-time wheelchair users in the UK. They offered me one no better than the basic one I have or a voucher for the same cost....10% of the price of the type I actually need! Now I'm raising money, having tried some out. I'm going for an Ottobock Ventus. Can't wait!
I find it amazing that insurance covers a chair that you use just 50% of the time. I'm in England and whilst the NHS will provide you with a wheelchair if you can walk at all the options they limit you to are ridiculous, they also came down with a pronouncement that I shouldn't self propel (I also have EDS), which wasn't founded on any medical evidence. Fortunately if you don't like what they have to offer, they will give you a voucher for the money they would have spent on it and you can take that to a wheelchair shop and buy what you want - but of course you are dealing with sales people not trained PTs or OTs. My salesperson was very very good but he had never heard of EDS, so there was no disease specific considerations. Unfortunately the chair cost 4 times as much as the voucher I was given and luckily we were able to pay a lot of people can't. I use my chair 100% of the time out of the house and a significant percentage of time in the house, so it's not like I don't need it!
-I have a Jay/J3 Turbo 6 power chair in Purple. I too was concerned about having a color. Mostly because of my age...I'm in my 60's. Shouldn't I get a black, gray, dark blue or dark green? I saw the purple and...had to have it. I love it and have gotten some great comments on it. The fuschia suits you...nice chair! I just saw the Smart Drive. That is great. I wish I would have known about it when I was getting my new power chair.
hi!! you mentioned that you have hip dysplasia. i have it too and i have a few questions. when were you diagnosed and how long did it take you to start showing signs? and what did you do when you were first diagnosed treatment wise? i have just been diagnosed a few months ago and i am still trying to figure out what to do about it.
I hope you don’t mind me asking, I lived in the states for a while but am British. How does the medical system work for you. I assume at the moment you are on your parents medical insurance. What happens when you turn 18 or have to get your own insurance. Will you be discriminated against because of your pre existing EDS? I am hoping to upgrade to a better wheel chair soon so thankyou for this review.
where did you go to get you chair made? I am in MN and having a hard time finding a good place with what I like, but I like a lot of the features on your chair!
I use a powerchair for my Epilepsy. Mine comes monday I bought mine my self. It also has headlights & taillights I can't wait to get it. If you have an e mail I'll send you A pic of it.
If I get a wheelchair (I think I may get one because I fall a lot due to dizziness which me and my mom think is from pots and gastroparesis) I would probably have one like yours.
were your side guards covered by insurance? I had to pay separately for mine but if yours were covered I wonder what criteria they used to cover it.. Thanks.
Is there any particular shape or type of backpack or backpack straps which you find easier or harder for carrying on your chair when hooked up or when you need to connect/be disconnected while on the go? Bearing in mind I'd have arm rests. I currently have a different chair with a standard back & handles so I can see what fits on that but I need a different chair and I think I'd go for the rogue and a 3rd party solid back. I'd probably pick an Acta over a Matrx but it'd be more similar to what you have than what I currently have.
jane budde if you wear a lap belt/seat belt when propelling, it stops you losing energy push by moving separately from the chair itself. Obviously there’s a safety aspect as you could be jolted out for many reasons; but the belt definitely keeps your kinesthetic energy
For me, a wheel keeps falling off on my fold up electric. First time I used the new chair I got thrown out in the middle of town, dislocated both hips, a shoulder, wrist, and the other shoulder trying to get the first one in. Extremely embarrassing happening in the middle of town, but a seatbelt could have prevented that, so I wear the seatbelt when I’m out now just in case my chair malfunctions and throws me out. It’s also useful for going down steep slopes as I tend to dislocate my right hip trying to stop myself slipping out of the chair on slopes.
Seatbelts are really important. Especially if you have a power chair. I would miss the belts and would feel unsafe without them. I use a powerchair aswell.
Terkina I’m the opposite! I never wear a seatbelt because if I’m gonna fall out then I can drag myself away from the chair. Seat belts can be useful but lap belts can cause internal damage although this would be in extreme circumstances.
My son is just 5 years old, but needs an ultralight and needs power assist.... he's pretty bright and quick to learn... but can you imagine using the smart drive as a young child? I'm hunting for a video of real life people demonstrating the smart drive... do you know of one or do you want to make one?
I also live in Minnesota and have a disability and use a wheelchair for long distance. How were you able to get insurance to pay for a wheelchair that you only use for long distance? If I’m being nosy, please let me know. My name is Angela
I would love to know what width your seat is? Would you be perhaps using about a size 16 in wide? I am looking at a chair and was trying to size it up to your size and was wondering if it was about 16 in?
I am supposed to get a Smart Drive for my manual wheelchair, but my insurance is fighting us tooth and nail, saying why I don't need it (even though my doctors have sent MASSIVE DOCUMENTATION) on why I need it, and I am still getting denied. If anyone can give me tips on how to get it paid for, I would appreciate it. I have spina bifida, and I have arthritis in my shoulders that prevent me from pushing my chair long distances. Thanks in advance.
I don't know if your insurance company will pay for that but I have a kind of lifter to take my hair and pull it and place it up, in the states but in Montreal, it's going inside the van. But, I am more more older than you (can be your mom!! Lol!) so with the years, I am not able to lift your chais the way you do.
Hi, I have POTS, but I don't have EDS. I am sick and tired of passing out for standing for too long. I personally think that a wheelchair will help. Do you think it would be worth it? Does it really help with POTS? If so, I will need to ask my mom and I have NO IDEA how to bring up the subject. Please can you help me? Love from the UK, Jess
Just diagnosed this year after 39 years of saying I was hurting and no one listened. Just started looking for a wheelchair after years of just a transporter chair. Thanks for the video.
At 20:30 when you put your hip back in, mine do that too!! It freaks people out- more of a "thunk" than a "snap"!! I don't think I've ever seen someone put it in similar to mine!! Also, your haircut is so super cute💕💕💕
YAY! so happy for you! I’m an EDSer who is considering a wheelchair so this was beyond helpful.
Lanie Mo did you get one?
Picked up my chair 2 days ago. It’s an older one but it was a fabulous price! Going to decorate it a little too...
You are so inspirational. You're not letting anything get you down - kudos to you! Your wheelchair looks amazing. I purchased a folding wheelchair for my partner as she's waiting for knee replacement surgery and having extreme difficulty walking due to lots of pain. I noticed your chair has about 3 degrees of negative camber on the rear wheels and as my chair doesn't have any option for camber adjustment, it was a case of wheelchair - research - workshop - tools - equipment all put together and finished result now is her chair has 6 degrees of negative camber. Looks really good and more importantly more stable for sloping surfaces. After a lot of reseach it didn't take long for me to realise that rigid frames are definitely the way to go full stop! Thank you for your inspiration.
Super cute! Woot woot! I love the color! 💕
Christina Dohert
Do you need a push.
It's great that insurance covered that! It always baffles me some of the things insurance fights about. A few years ago I was told that they wouldn't cover anymore physical therapy until I hurt myself again!
You are so sweet and positive! I have been in a chair for 11YRS. And love your chair thanks you for shairing!
Awesome chair! I only have an old wheelchair from ebay, and my doc onl prescribed me a walker. I am not able to go far with m rollator and I often fall. I can´t self propell my heavy chair and live alone. I got EDS diagnosis confirmed, but no doctor willing to prescribe me atleast such a push helper for my chair that you have. I live in Germany where health care is suppost to be good lol I will go on and fight for my freedom! And every zebra I meet online motivates me. You, too! Oh and I love the color!! :-)
yeah I live in New Zealand and everything is funded except if you have something rarethat the healthcare system doesn't know much about lol. I had to save up and buy a second hand power chair myself but it was SO worth it! I got prescribed a walker too but it's not at all realistic for long distance and I mainly just use it around the house
yes!!! My diagnoses aren´t even on the list of the health insurance, just problems with agencies, as joint impairement and walking impairement got meassured by how stiff the joints are, EDSer are screwed lol even tho they come home and evaluate you and see you fall and struggle and hearing you popping and cracking, it is not listed on paper. By now 3 months later than my first comment I got diagnosed with POTS and I´m falling even more, even at doc appointments the scrap me off the floor. Hurts my knees and my hips sublux. My ebay chair broke and no money to fix it. All money goes to calling taxis and I´m down to one meal per day to afford this.. doctor visits. It´s bizzaro world for rare disease patients. I´m so so glad you got yourself a power chair after saving. I got a neck brace by now and compression socks and an event recorder implanted, yet I lack mobility. and more and more lacking will to live tbh planning on showing this video her to my orthopaedic- I need those aides
@@sabserab I think you can get funding for doctors appointments from the Krankenkasse :)
Ich bin auch aus Deutschland und ich finde keinen Arzt der sich überhaupt mit Eds auskennt.. und ich kann nicht nach Lübeck zum Spezialisten.. ich lebe in Süd Hessen fast bei Bayern und müsste viele Stunden fahren und im Hotel wohnen
Thank you for your wheelchair info cuz i'm in the process...
I'm just starting this process myself. I'm a Zebra, but my joints aren't as hypermobile as most EDS'ers. I just subluxate, not dislocate. I'm 45 and finally to the point where I need a wheelchair part time. I have the Rx but waiting for the initial eval. I'm guessing mine will take 6 months easily because I'm on Medicare AND Medicaid. Thanks for this video!
I may have EDS (seeing a Rheumatologist in March (hopefully)) and I at least have joint problems that are getting progressively worse and I really loved this video, it was highly informative, thank you!
Color of a chair expresses our personality. This 60 year old sits in a purple Permobil m300.
Bullshit!!! You are not always able to select colors. Money is the king.
@@borisfogelson5225 Not with this company
Neon Orange here 😁
Your chair is amazing, in the UK.you either have an NHS chair or you have to fund your own chair which costs thousands of £s. My NHS one is heavy, cumbersome and restricts movement, especially in the top part of my body. I constantly have bruising on my arms from pushing and on my legs from transferring from chair to bed where the break catches my leg. I suppose I should be great full but when I see your chair I can’t help but be envious.
I haven't had the chance to use mine yet after arriving 2 days ago but that doesn't sound great D: Mine is reasonably light though.
Check Facebook selling sites and groups I recently got a really good deal on a lightweight sport chair (£150) that would have cost so much more to self fund, mostly people just want rid after getting a new one or no longer needing it
Rex888dA have you tried it yet? How is it?
Rachel Lazenby that’s a really good idea, thanks.
Sadly not, I've had a sit in it but I'm going out tomorrow and I'm gonna use it, my mum is really controlling and won't let me use it (crutches or nothing) :/ From the sit I've had in it though it's really comfortable! Looking forwards to going out tomorrow
I’ve been through the colour ranges of chairs pink, purple, blue, red, bronze, grey and black.
Used to like bright colours but now opt for black because it goes with everything including my black car.
Stealth, too 😉
Totally off subject, but your puppy is so cute!
Currently watching this. Part time wheelchair user myself, and it's so, so nice hearing in voice that I'm not alone there.
Found your channel as it was recommended. I'd love a custom myself, and am so wondering about the process. Plus, I'm afraid to bring it up to my doctor (and don't want to spend the money if I don't need it long term - though it's not like I can get better with EDS). So thank you for this! Subscribing.
Don't know if you're still wondering, but if so, Chronically Jaquie here on youtube has a playlist detailing the entire process of getting hers.
Omg, finally someone else who understands pots!
Thank you so much for sharing! I've needed a chair for awhile now, for part time, I fall and dislocate so often, I live alone, and there's so many times I want to do something out of the house, or even in the house, but the dislocations and I have TBI (traumatic brain injury) and some type of autonomic dysfunction (and eds hypermobile ;))... But I've gotten a chair on craigslist, but it's not helpful because I dislocate my shoulders loading it in the car, and my current place is very much not accessible, at all, lol... I can't wait until I can move to a one level place and somewhere that I can use a chair inside when I need to, cause right now it's just... I never thought I would get so overwhelmed by pain but it's... Really rough right now.
Did your doctors worry that you having a chair would make you less active? (that tends to be what my doctors have been thinking... I'm overweight, though I've ALWAYS had chronic pain and dislocations, the weight came after medical issues and being put on a ton of different meds that didn't help, but I gained weight, and I have tried to lose it, but it's hard when anything I do makes me feel like passing out, and honestly I still do a bunch of things... I've ended up with 4 rescue dogs (long story lol, but I'm glad to have them, but even on my worst days I'll have to crawl on the floor to let them out and feed them, etc, so I'm honestly not lazy... People tend to assume that, but I really... I try my best)
Anyways, sorry I ramble, thank you so much for sharing this information about your chair as well as how you went about getting it... I would LOVE LOVE LOVE to be able to get a chair like yours, I've even looked at trying to build a lighter chair with pvc pipe or something, so I could have something better than the big standard ones people get from hospitals etc (and I got off Craigslist haha)...
Also, I love the brakes, they look effective and also like they wouldn't cause dislocation if I use my fingers (I'm grateful for my fingers generally being stable, my thumbs have decided they are pretty much... Not stable anymore lol... But at least I've got 4 fingers per hand that are currently pretty stable, so I can kinda use my fingers to do things rather than my thumbs, even if it's a bit different, it works, haha! But those brakes look like they would be easy to engage and release without too much pain!
It BAFFLES ME that you don't find the hip dislocations agonizing.. I remember when I was a little kid, I now realize that my hips were at least subluxating regularly, as were my knees... Shoulders have been messed up consistently and most significantly for, idk, forever lol... But shoulder dislocations definately hurt me, depending on how much I've been conditioning them and keeping them in shape it was painful but still quite tolerable, I still could do dance (color guard), it was bad still when I didn't warm them up enough and condition them before getting into things... I actually didn't realize until I was 21 or so that my "bad shoulders" (right one is worst) were bad because they were dislocating regularly haha... I didn't realize everyone didn't have pain all the time, lol... And it kinda made sense in retrospect that it grossed out a fair amount of people when I would "crack" my shoulders... I guess it did look and sound kinda gross since I realize now that was actually me reseting my shoulder, which is why it moved so much when it popped into place and I felt so compelled to do it so it would feel better!
Maybe it's just because I'm older (I'm 29 and I feel... So so so old, like... I used to have so much energy, and now it's hard emotionally to accept my limitations, or as I often do, I don't adjust my expectations of myself and end up collapsing and feeling AWFUL and getting upset that I couldn't do everything I wanted to get done, and just being beyond exhuasted and in pain/nauseous/lightheaded/vision and hearing issues/head pounding/migraine, etc... And then I just lay there and think about how I can't spend my life like this, I have to find more solutions, so I give myself a bit to be upset and then think about what I can do to improve things and keep moving forward. I accept chronic pain - it's only when it's beyond overwhelming and hard to stay conscious that I get to a point of feeling really overwhelmed. The pain management specialist just said to take Ibeproffen, 800mg, lol... Which a) doesn't put a dent in pain when it's at that point and b) that stuff DESTROYS my stomach lol... It's horrible on anyone's stomach, lol! So... Meh. And the doc dislocated my thumb and made me do all these things to prove the Brighton scale, which I really didn't want to do cause it makes those things worse, but he... I wanted to prove myself to him so maybe he would help, ya know? I just ended up in a ton MORE pain, feeling like it didn't matter, and the guy just said to exercise more... I WANT TO BE ACTIVE! I LOVE BEING ACTIVE! if I had a wheelchair I would be more active because, as you said, you're able to be more independent with the tools it gives you! I fall so often, and I have no bail out if I can't function, and I have to climb a flight of stairs to get to the bathroom and sometimes I'll hold it so long ill have an accident because my hip dislocation is constant, sharp, intense, pain. It happened over a year ago and never got better... The er told me to use crutches and stay off the hip for a week, and thought my concerns about my shoulders and the crutches were nuts lol (the nurse was like, "when people come in with a shoulder dislocation, we have to sedate them to reset it... They don't just put it back in themselves...."
Lol... So I tried using the crutches, within 24 hours I had dislocated both shoulders and both thumbs (which hasn't been dislocating before then, but as you or someone said, once something dislocates in us zebras, it pretty much keeps doing so) so I figured I would have to just walk on my hip cause it was better to have one dislocation than 5, and my PCP said she didn't "believe in narcotics" which I know they have issues, but good golly, she didn't even think it was worth trying to get insurance to cover a wheelchair, lol... So I got one on craigslist at least, the way my place is laid out, I can't use it in the house though, there's no space... The x ray showed my hip was fine, but it's been severe pain since then, and I have full range of motion so I was told to just keep doing the things pt told me to do, honestly though it feels like there's something wrong, and it's not like I'm not familiar with dislocations lol... I feel like someone would listen, but... I'm totally just not focused and rambling, and I am just hopeful from seeing your video... I really am a happy person most the time, and pain hasn't taken that away from me, but it's just at a point where it's just ridiculous to me that doctors would expect me to just deal with it.
I'm surprised though that you don't seem to have anything near the intensity of pain I do, though... I guess part of it is that no two zebras have the same stripes... You just handle so many dislocations so calmly, and I know it must still hurt you... I don't know. I've always thought I had a high pain tolerance, but maybe I'm a wuss? Lol. :-/
likeabunnie wow really long story
Gymnastics Daily, and that was a really helpful response, not! While I don’t have the issues above, I can at least empathize and try to offer some support - even if it is just an ear to listen with or eyes to read. I wouldn’t be able to offer advice necessarily as I haven’t been in that situation, but sometimes all the person wants is for someone to care.
Smart drive seems kind of like best of both worlds and amazing for dealing with hills.
Been using a wheelchair for 18 years, I'm 37 now. Excellent video.
Thank you so much for making this video and explaining everything so thoroughly! I know videos are a lot of effort, but I really enjoyed it! I'm a fellow EDSer, POTS, and myriad-of-other-issues girl, though I have a secondhand wheelchair that I absolutely love, I'm always on the lookout for elements I want to have on a custom chair should I ever get one. Thank you for taking the time to make this video and explain your lovely wheelchair!
I am really glad that you have shown that video. I really enjoyed watching it. With a little rucksack. How do I put it on my wheelchair?
I wish you every happiness with your chair, well for four years, eleven months, and three and a half weeks (!), ...and then definitely get another new one :)
I loved my custom chair, but every time it broke, nnnooooooo!!!
Now I have a new chair I keep the old one for a spare, but I also use it if I’m going out in the rain, getting filthy going somewhere grassy or muddy and when it’s cold outside so I can transfer into a warm chair when I get home :)
Also, I like what you said about testing a chair first, my thumbs kept getting dislocated by being trapped between the push rim and the wheel, now I have it so there isn’t enough room for them to go between - it was painful working it out though!
I have push rims called ‘surge’ that have a bead of rubber around them and are a flatter shape, they make a massive difference with pushing and stopping, especially when it’s wet out as my grip is rubbish.
Billie from UK (...also with EDS!)
Is there a way for removable handles to be put on the back of your chair so someone could push you if necessary?
You can get a wheelchair with fold down handles (mine has that), which is a nice feature. I usually keep mine up anyway, since I get tired trying to push myself, but being able to fold them down so that strangers don’t push you is a good thing. And they will- I have had strangers push my chair out of the way like I was furniture, or rest their hands (or even feet-eww) on my chair. A wheelchair is an extension of the disabled person’s body-If you wouldn’t touch a person that way, don’t touch the wheelchair that way, and if you need the person in the wheelchair to move, please just ASK (the same way you would with someone not in a chair)
That’s terrible, such ignorant people out there
I honestly don’t know if I could handle all the things you deal with. Power to you!
Youde HAVE TO! 😁
What's your address? Definitely not asking because I want to come steal your dog or anything .. Seriously though congrats on the chair; I hope it's helping!
I love your username!
Great video I have several palsy so I understand life can be difficult but life can also be a lot worse that’s the way I look at it and that’s what keeps me going because I’m able to do stuff for myself so that’s what keeps me going but anyway great video keep them coming happy new year
Me again - so this smart drive thing, I've been hearing a lot about them and I think it would help me gain a lot of independence, however one of the things I notice when I am navigating through crowds is that I am constantly making slight adjustments to speed. It's kind of the same when you drive a car, I have hand controls, so having cruise control is a really useful feature, but I do notice when I set it at the speed limit for a road there are often moments when I think I'm too fast, but they pass quickly, it's adaptive cruise control so if there were a vehicle in front of me it would slow down, but the smart drive sounds like cruise control without the adaptive bit.
This is the first video I ever saw of you. I was immensely impressed by the way you relocated your own hip and stayed:) seems so long ago now. I hope you're well!
I have the same smart drive on my TiLite ZRA wheelchair, and it is great!, Thank you for this video. Also with the smart drive you can turn side to side, you can't even feel the smart drive on the back. It rolls sideways super easy!
I live in Minnesota as well and I'm just getting started in the process of getting fir for a wheelchair. I'm really excited because I think it will help a lot! I'm curious about what you do in winter with snow. I've scoured RUclips for more information about that and I haven't found much if any. Do you have any advice with Minnesota winters (specifically snow)?
You inspire me bc you are amazing in so many ways and also different witch makes you so cool and inspiring
Hi there! This is such a good video and awesome wheelchair. Two questions: can you have adjustable handles added to the chair so that someone else can push if needed? (That was my main question). Given its a rigid frame, how does it fit into a car even if though the wheels and smart drive are detachable? If I like yours so much better then the line I'm approved for and trying to get altered. I look forward to listening to more of your vlogs!
I'm a little surprised you don't have tension adjustable straps in the seat (you can also have them in the back if you have a more basic back). I have similar hip problems to you and as you can see in the other comment I didn't have the best help in getting a suitable wheelchair, however the tension adjustable straps are the most amazing thing I have come across. I am heavier than you so more roundness over my bottom, it means I can have the back one slightly looser and it still fits and supports everything,
What company did you use? I have EDS and am looking to get my first chair
Hey hun just wanted to let you know your wheels are on backward if you didn’t know. For the tires the arrow shape needs to face forward. Hope you didn’t find that annoying but it makes a difference
THANK YOU for making this video! I need a custom wheelchair and didn't even know where to begin. I have a prescription from my dr but it just says "wheelchair". What does it need to say on it to get a custom one?? I have Syringomyelia which causes cysts (called Syrinxes) to form inside of my spinal cord. My Syrinx is located in T-8 through T-12. Because Syrinxes can cause paralysis if certain nerves are damaged I'm not allowed to lift, push or pull anything over 8lbs. So I definitely need a super light weight wheelchair but also need something like a smartdrive as well.
I have a purple scooter. Beautiful chair xxx
This helps me so much!! Yesterday I started my process to make my own weelchair for my EDS hypermobility. May I ask you how old you are?
Thank you for the information about the weelchair aspects!
Great choice of chair!
I have hypermobility and I spent over a year of my life in a wheelchair and I can tell from the pain and dislocated kness that I will be back in one again soon. I can sprain my ankles just by walking short distances.. plus my knees go backwards all the time.
I have mixed connective tissue disorder but instead of dislocating joints i have arthritis in the joints. You must be in so much pain everyday and i wanted to say that your not alone.
My husband got me a wheelchair from eBay it was only 125 dollars. I love your custom wheelchair
I'm in the UK and my chair I bought of a selling sites as I'm finding it hard to get from the NHS, unfortunately that means it isnt as lightweight as I would like and it puts more stress on my shoulders, I need to get one better suited for me but I'll have to pay for it myself unless someone listens properly and I can get a voucher to go towards what I'm after
Thank you for sharing. I need one of those. That way my husband won’t have to push me in my wheelchair. I’m home a lot because I don’t want to depend on anyone. And I’m unable to walk. If I use crutches in public I’ll fall if someone bumps me.
Such an adorable doggos!!! No excuse for being that cute
Awesome video. So very helpful. My daughter has EDS and is entering the wheelchair zone. Did insurance cover the cost of the upgraded wheels, and the smart drive? (I know we likely have different insurance, and obviously different bodies. Just curious your experience.)
Hi, I'm a fellow Zebra (& POTSie) in the UK. I use Smarcrutches (plus ankle or knee braces) or a mobility scooter. I have a folding Enigma Spirit wheelchair but I'm looking into getting fitted properly for a lighter, rigid type...if I can get referred to wheelchair services! Wheels make life much easier. Your wheelchair looks good. How easy do you find self-propelling on the pavement? Sending fuss to your pup.
The Art of Blossoming I have a custom chair and it’s amazing I got it from spinlife.com
Update: It turns out its hard to get funding for part-time wheelchair users in the UK. They offered me one no better than the basic one I have or a voucher for the same cost....10% of the price of the type I actually need! Now I'm raising money, having tried some out. I'm going for an Ottobock Ventus. Can't wait!
I have my fitting in 2 weeks! Whoop whoop
good luck!!! I just had mine, currently waiting for construction
Hello. I hope that you are on the mend now. I fell and broke my right hip in 2014.
I find it amazing that insurance covers a chair that you use just 50% of the time. I'm in England and whilst the NHS will provide you with a wheelchair if you can walk at all the options they limit you to are ridiculous, they also came down with a pronouncement that I shouldn't self propel (I also have EDS), which wasn't founded on any medical evidence. Fortunately if you don't like what they have to offer, they will give you a voucher for the money they would have spent on it and you can take that to a wheelchair shop and buy what you want - but of course you are dealing with sales people not trained PTs or OTs. My salesperson was very very good but he had never heard of EDS, so there was no disease specific considerations. Unfortunately the chair cost 4 times as much as the voucher I was given and luckily we were able to pay a lot of people can't. I use my chair 100% of the time out of the house and a significant percentage of time in the house, so it's not like I don't need it!
-I have a Jay/J3 Turbo 6 power chair in Purple. I too was concerned about having a color. Mostly because of my age...I'm in my 60's. Shouldn't I get a black, gray, dark blue or dark green? I saw the purple and...had to have it. I love it and have gotten some great comments on it. The fuschia suits you...nice chair! I just saw the Smart Drive. That is great. I wish I would have known about it when I was getting my new power chair.
My Cushion is a premier comfert
& a Span America Cushion. I bought bolth of
Them at a thrift store.
I have a ki mobility rouge as well but mine is purple :-)
after watching this video: need to take some adjustments on my wheelchair request😅👍👍
thx for ya work
Thanks for the video. What camber do u have on your wheels? Thanks
hi!! you mentioned that you have hip dysplasia. i have it too and i have a few questions. when were you diagnosed and how long did it take you to start showing signs? and what did you do when you were first diagnosed treatment wise? i have just been diagnosed a few months ago and i am still trying to figure out what to do about it.
I hope you don’t mind me asking, I lived in the states for a while but am British. How does the medical system work for you. I assume at the moment you are on your parents medical insurance. What happens when you turn 18 or have to get your own insurance. Will you be discriminated against because of your pre existing EDS? I am hoping to upgrade to a better wheel chair soon so thankyou for this review.
Iam glad you get the things you need
where did you go to get you chair made? I am in MN and having a hard time finding a good place with what I like, but I like a lot of the features on your chair!
I have the same chair! I also have Eds, gp, and hyper pots along with tos
Awesome chair and thanks!
I broke my right hip in 2014 and now I am in a wheelchair. I hope your hip is OK
I don't know why some insurance take so long mine took 3 month from the primary appointment ( evaluation ) to delivery I have a custom quickie 2 😁
Can you make a video that talks about all of your conditions
I use a powerchair for my
Epilepsy. Mine comes monday
I bought mine my self.
It also has headlights & taillights
I can't wait to get it.
If you have an e mail I'll send you
A pic of it.
If I get a wheelchair (I think I may get one because I fall a lot due to dizziness which me and my mom think is from pots and gastroparesis) I would probably have one like yours.
What brand of chair do you have? I’m waiting on a smart dive NDIS is going to pay for it but their taking forever!!!
i love you so much!! i love your videos❤️
were your side guards covered by insurance? I had to pay separately for mine but if yours were covered I wonder what criteria they used to cover it.. Thanks.
This girl is amazing!
Great video!
Minnesota squad! 😊
Is there any particular shape or type of backpack or backpack straps which you find easier or harder for carrying on your chair when hooked up or when you need to connect/be disconnected while on the go? Bearing in mind I'd have arm rests.
I currently have a different chair with a standard back & handles so I can see what fits on that but I need a different chair and I think I'd go for the rogue and a 3rd party solid back. I'd probably pick an Acta over a Matrx but it'd be more similar to what you have than what I currently have.
I ❤️ my Rogue !!
Was there a specific reason or benefit of the seatbelt on your chair?
jane budde i tend to slide around in mine if i get bumped or something so maybe thats why
jane budde if you wear a lap belt/seat belt when propelling, it stops you losing energy push by moving separately from the chair itself. Obviously there’s a safety aspect as you could be jolted out for many reasons; but the belt definitely keeps your kinesthetic energy
For me, a wheel keeps falling off on my fold up electric. First time I used the new chair I got thrown out in the middle of town, dislocated both hips, a shoulder, wrist, and the other shoulder trying to get the first one in. Extremely embarrassing happening in the middle of town, but a seatbelt could have prevented that, so I wear the seatbelt when I’m out now just in case my chair malfunctions and throws me out. It’s also useful for going down steep slopes as I tend to dislocate my right hip trying to stop myself slipping out of the chair on slopes.
Seatbelts are really important. Especially if you have a power chair. I would miss the belts and would feel unsafe without them. I use a powerchair aswell.
Terkina I’m the opposite! I never wear a seatbelt because if I’m gonna fall out then I can drag myself away from the chair. Seat belts can be useful but lap belts can cause internal damage although this would be in extreme circumstances.
What town do u live in in mn I live in mn also. Love your wheel chair
I'm a T6 paraplegic complete and I need a standing chair any recommendations
I’ve been waiting to get my custom wheelchair since November and my Evaluation isn’t until a few weeks from now. They’re not very fast LOL
Also today is 8/18/18
❤
My son is just 5 years old, but needs an ultralight and needs power assist.... he's pretty bright and quick to learn... but can you imagine using the smart drive as a young child? I'm hunting for a video of real life people demonstrating the smart drive... do you know of one or do you want to make one?
If you haven't found a good one yet, Chronically Jaquie has a good one in her custom wheelchair playlist.
That’s like me I use my wheelchair if we have to go somewhere and my crutches at home.
I also live in Minnesota and have a disability and use a wheelchair for long distance. How were you able to get insurance to pay for a wheelchair that you only use for long distance? If I’m being nosy, please let me know. My name is Angela
For me it has been almost 10 long months and I get my wheelchair in 2 weeks!!!
Thank you. Is ustom means right selection of parts or they physicaly make frame etc.?
Custom means it is made to fit her exact size and needs, and they make it to those dimensions.
I would love to know what width your seat is? Would you be perhaps using about a size 16 in wide? I am looking at a chair and was trying to size it up to your size and was wondering if it was about 16 in?
I hope you are okey. Nace More videos I like them alot
Wow! That pink tho.. =)
I'm working on getting a chair for my CP for part time use, I want to see if insurance would cover it
I am supposed to get a Smart Drive for my manual wheelchair, but my insurance is fighting us tooth and nail, saying why I don't need it (even though my doctors have sent MASSIVE DOCUMENTATION) on why I need it, and I am still getting denied. If anyone can give me tips on how to get it paid for, I would appreciate it. I have spina bifida, and I have arthritis in my shoulders that prevent me from pushing my chair long distances. Thanks in advance.
Why did it take so long in between the prescription and the evaluation🧠 was it a personal choice?
I don't know if your insurance company will pay for that but I have a kind of lifter to take my hair and pull it and place it up, in the states but in Montreal, it's going inside the van. But, I am more more older than you (can be your mom!! Lol!) so with the years, I am not able to lift your chais the way you do.
Hi,
I have POTS, but I don't have EDS. I am sick and tired of passing out for standing for too long. I personally think that a wheelchair will help. Do you think it would be worth it? Does it really help with POTS? If so, I will need to ask my mom and I have NO IDEA how to bring up the subject. Please can you help me?
Love from the UK,
Jess
Maybe see if you can borrow a wheelchair to see if it does in fact help for you, then make the decision after that?
I have the exact same wheelchair!
Hi just wanted to say you are a remarkable young lady God bless you 😘👍🏼👍🏼👍🏼👍🏼😊
when she took the smart drive off it looked like a handheld vacume cleaner.
I have the Ki mobility tsunami in Emerald green
U should put a pole on the side for ur iv and feeding pump
As a person with a wheelchair and two forearm crutches, I'm wondering if you can explain why you use only one crutch? why not two crutches or a cane?
Drew Harris if she uses the other crutch it dislocates her shoulder and causes more harm than good
Oh ok thanks