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WHEELCHAIR FAKERS CAUGHT - are they really paralyzed??
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- Äas pĆidĂĄn 25. 09. 2020
- We often get accused of being "fake" or "not really paralyzed" because we can move our legs - but the answer isn't that simple - having an incomplete spinal cord injury comes with its own host of unique challenges - one of them being - how do we exercise our legs!? In today's video Maria and I show you how to workout your legs if you have an incomplete spinal cord injury.
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I'm an ambulatory user and I always feel like I'm too disabled for one community and not disabled enough for the other. Thank you for this video!
Me 2
ThisâŠ..just this
Glad to know there are more.
It is soul destroying. We just want our life back.T800Aust.stay strong.
I'm in the same boat we are all so strong
My husband might not approve of this message but hell yes, my wheelchair is my best friend and soulmate. I can do things, go places and live life as intended with less pain and more joy. No prayers, yoga or turmeric could do better than my wheelchair.
Yoga or turmeric? Explain please đ
@@peytonsayler6115 They both are supposed to help with pain and inflammation.
Thatâs horrible if your husband doesnât approve of the message
I mean, tumeric may have improved my mental health because it tastes good in different foods, but it won't do the job of a wheelchairđ
This literally brought me to tears at the end when you mentioned ambulatory wheelchair users and my disability! I was diagnosed with POTS last year and after medications failed, my only option was a wheelchair and I can't explain how much my chair has improved my life! Thank you for this!
I was just diagnosed with dysautonomia. Ive had it for 10 yrs it took them this long to diagnose me. I was just prescribed a wheelchair but im so scared to use it bcuz of ppl "catching me" using my legs. Did u experience that?
@@AWomanCalledWinnie I have used my chair for over a year now and some people do look at me differently when I use it and they see me stand but people typically stare at everyone using a wheelchair no matter the reason. You kind of get use to it. But in the beginning I was scared of the same thing so I put a sticker on the back of my chair that said "ambulatory wheelchair user" from etsy and I would actually get compliments on it and used it as a way to start a conversation about why I used a wheelchair.
@@AWomanCalledWinnie yes Iâve used a wheelchair now for almost 4 months I can walk and even run in short spurts but my back is trash and wonât allow me longer than 3 minutes as a bi ped anymore without excruciating pain. When I use my legs and catch someone looking at me I usually say, âItâs a miracle!â To break the tension I feel. It usually either leads to a conversation or just letâs the moment off the hook.
I have POTS as well and my condition has been getting worse as of recent so for my big school amusement park trip today I had to use a wheelchair or I couldnât do anything I wanted to because of my fatigue. I got so many dirty looks and people just staring at me. It felt so dehumanizing. It was full grown adults and older teens too! The little kids could care less but people who should know not to stare decided to anyways đ
Iâm an ambulatory wheelchair user due to the effects of my Ehlers-Danlos Syndrome. My EDS causes a lot of chronic pain and fatigue, along with affecting my proprioception and balance. Using my wheelchair is just the most safe and energy effective way to get around for me. There are so many reasons as to why someone is in a wheelchair, only a relative few are in the chair due to a complete spinal cord injury, very many can stand up or even walk a bit and thatâs something a lot of the general public tend to forget...
I know this comment is old, but this struck home. I have EDS too and suffer from chronic pain, chronic fatigue syndrome, POTS and other disautonomia non regulated trouble. When I can stand and walk, I feel like people thought I was faking it, but i try to remind myself itâs no one elseâs business.
I also have hyper mobility and crps,pots, mcas, hypoPP my wheelchair has given me freedom that my body canât do. I am chronicallymanette on tiktok mostly
I work in Physical Therapy, and I have conversations with patients all the time encouraging to use their assistive devices (canes/walkers ect) to keep them more functional and independent, but they always remain reluctant due to the stigma associated with those devices. Would you rather use a walker/chair and be able to participate in the world? Or refuse a walker/chair etc and be confined to home? We can accept that people wear glasses as a tool to cope their range of vision deficits, but we canât accept people using tools to cope with a range of physical impairments?
Amie Joseph .... I can walk with leg braces/walker if I choose too. Iâm even capable of walking with the electric stimulation/walker, but both are sooooo
slow. Then you have to constantly keep your balance in check. I donât think people choose wheelchair over walker/cane because of stigma, theyâre just not functional. Using a wheelchair is functional. Being paralyzed isnât as easy as it looks....đ
Basic Para Stuff with CoachVic yes, that is what I mean. I typically work with more ambulatory people, and sometimes they see their need for a cane or walker as a failure. I try to stress that itâs a tool that will help them do more, maintain their independence, and allow them to safely navigate the world. Some of my balance patients donât want to be perceived as âdisabledâ or âoldâ or âfrailâ and will not want to use an AD, and I have to convince them that their quality of life will improve if they use one to help regain function.i wish we could be as accepting of those devices as we are about glasses for example. The emphasis shouldnât be on walking/standing ect. It should be on what gives you the greatest ability to get through your day, safely, independently, and sanely. For many people that means using a WC on a regular basis, vs canes/crutches ect.
Richard has been very clear that for him, his Chair helps him maintain his level of activity and independence, and by using a chair, he is much more functional and able to more efficiently navigate the world, despite the challenges of navigating in a world designed without WCs in mind.
I had to frankly describe how difficult and often impossible it is to do what I want/ need to do while using my walker, before my doctor was willing to write me a prescription for a wheelchair. Yes, it's important to keep and improve my balance and strength, but it's exhausting and life goes on. The chair opens up a whole new world of opportunities!
Iâm starting physical therapy later this month. Oddly I am feeling self conscious to take my wheelchair in even though I know it will help me be capable of doing more in my appointments. I think mostly because I donât have a spinal cord injury, I have a chronic pain condition that affects my balance. And Iâve only needed one for a few months. Using my chair in front of strangers doesnât really bother me, but I have it in my head that my doctors and physical therapist will judge me for using it, because they know that I donât have a major injury.
if youre in a office environment, you dont want to be a bother. on my end, i endure being in pain using a cane even though was partially paralyzed. country were im in now is: disabled people are natural targets of bullies, security guards and cops. especially bosses who think coz youre disabled, youre useless. if i use a wheelchair, its going to be open season.
Thanks so much for this video! I'm a nearly full-time wheelchair user due to POTS. My life is so much better in a wheelchair, and I'm just getting to the point that I don't care what others think (or what I think they think!) Your channel has been such an inspiration to me. Thanks for everything!
I recently been diagnosed with POTS as well, and spreading awareness about it and using a wheelchair. I think more people should start spreading awareness about ambulatory wheelchair users. It might help die down the harassmentâŠ..hopefully
This video made my day:
First, when they joked "I'll pray for you" I died. Second, they listed other forms of wheelchairs: I use a cane/arm crutches 95% of the time- but have a chair at the house, and use it when needed. I don't absolutely "need" it, but it makes life WAY easier.
I can walk but it hurts as hell. Thatâs why I have a wheelchair.
Me too...
same. if i walk the whole day for one day the next day i will literally be useless and not able n
to do anything.
@@noyes1973 Exactly the same here. I have a stairlift now Iâm so thankful for that.
I'm actually preparing to get a wheelchair for that same reason. I've had chronic pain for most of my life but it's got worse recently and hasn't improved at all. I'm glad I'm not alone.
@@Screaming_into_the_Void same, Iâm looking to get one soon
The "I pray for you" is just so accurate it's sad ^^
I've had same treatment as in what people say especially from the disabled community, thankyou both for doing this video.....
Your right we find our own ways
It's really funny / interesting because my disabilities and what helps them is like... the exact opposite.
I have hEDS, so it's veeeery easy for me to do full squat and touching my butt with my feet and stuff like that, but I absolutely can't exercise laying on my belly because it's hurt my ribs, I can't lift weights with my feet because my knees would dislocate...
Disabilities are extremely diverse and what works is different for everyone one !
Yeah, it's extremely diverese even within the same diagnosis. I have hEDS as well and I could never do a full squat. If I do more than a like a third of a squat, my hip will immediately dislocate.
@@Narnendil yes definitely ! For me my hips dislocate in the opposite direction, if I stand up straight or push my pelivs frontward. Full squat is actually one of my most confortable position. It definitely varies a lot from person to person !
I have hidden disabilities but Iâm finding it harder and harder to walk any distance without a LOT of pain. Iâm scared to get a wheelchair even though I need one because Iâm worried about people thinking Iâm exaggerating or faking, really wish I could get past thinking this way.
I'm an EDS-er and for a long time, I was scared to get a wheelchair, too (not being diagnosed at the time didn't help matters at all!). Eventually, the pain became too much and I realized I couldn't care what other people thought: I NEEDED a wheelchair. After I got it, I realized people didn't care as much as I thought they did and the only negative comments I got were people being overly helpful (trying to help me when they didn't know what they were doing or asking if I needed help when I was, say, sitting on the side waiting for someone I was with to finish with whatever they were doing). This may not be the case for you and I'm not saying our cases would ever be alike. What I *am* trying to say is that you never know: people could surprise you. I'm sure you'll do whatever is right for you. Have a great day and be well :-)!!!
This! I can't walk very well some days I can't even stand and I'm more scared of ppl calling me a faker more than me not being able to leave the house
Balls what people think you look after yourself girl
exactly. better to bear being in constant pain. people are cruel: they think were faking. hope they feel the pain we're in now one day
Anyone can buy a buggy or a chair are they just lazy maybe as long as they don't lie and make out they need one for any other reason but these are the ones that make it harder for someone who is disabled use one if you need it
oh man, thank you! we def need more * ânot every wheelchair user is completely paralyzedâ * videos. so as a part-time wchr user, who uses several other mobility aids cause not paralyzed, thank you!
p.s. media could help w| this. cause thatâs the only reason i could think of that people believe all wheelchair users are paralyzed or that paralysis is the *only* reason wheelchairs exist. i donât even think thatâs the initial reason they were invented. LOL
I use a wheelchair due to extreme pain for walking due to a unknown spinal injury and chronic pain, I was explaining it to someone yesterday on how I'll be able to get my life back and go out more and they were super supportive!
I'm a wheelchair user due to undiagnosed neurological problems. It's so comforting to see people who move like me. Sometimes I also feel like I have to hide my full level ability out of fear of what people think.
I have EDS and a functional neurological disorder that has caused me to lose all function of my lower legs and extreme weakness in my thighs. I also deal with the constant pain signals as well. I'm always so happy to see content related to those that haven't lost all leg movement. I feel you and I see you all âĄâĄâĄ
Also great video! I definitely needed more exercise ideas haha
I also have EDS, POTS and CFS/ME and have got to the point now at 23 years old where I can't walk for a few minutes without having to write the day off so I can't do things that other peeps my age can do.
I've been advised to get a chair but am terrified of the comments and looks and being seen as a 'faker' if someone sees me walk. I just want to be able to function and live my life without people giving me a hard time about it just because they don't know that heaps of wheelchair users can walk to some degree and are not all completley paralysed.
Thank you. I'm a wheelchair user who can sometimes walk short distances. But I have cerebral palsy and a neurological pain disorder and have to use my wheelchair a lot. The amount of stares for not being a full time user. I have put on weight a lot recently and this video is really helpful
I use a powerchair because I get tired because of I have cerebral palsy
Yun! Hayia CP prayers to you.
@@stephenleskow7959 I don't need prayers, I am living life to the fullest .
Yun Hee Choi I have CP as well use a chair also. Borrowing a Power chair to see if it will be good for me to get one because I just canât push the way I used to so far I love the power chair because now my friends nor I have to wear out our shoulders or our arms so it helps a lot.đ
@@kerivandenbosch3375 I agree. I do use my walker to take walks. It helps me with strength and cardio
I have CP too, I have a hard time walking long distances/short distances & my legs cramp up/get tight even with using a cane..
Respect to you two. I take for granted being able to do something like a squat without even thinking about it. Your channel is opening peoples eyes to a world not many know or understand! Great job, keep it up!
Thank you for the positive reinforcement!
when they brought up chronic illnesses specifically pots i couldâve cried!đ„ș thank you for the representation!đ
That getting-stabbed/electric shock feeling sucks so much. I have some nerve damage that makes this happen if I walk too much (and sometimes just for no reason at all) and GAHH. I've literally yelled out as if someone suckerpunched me before and like... just have to slink away because to the outside world there's no reason for me to randomly yell.
Angela, that's what been happening to me for the past few years, my rheumy says I have peripheral neuropathy but it's getting worse to the point, when I walk my legs start to feel heavy and like I am walking in quicksand and being pull down. My back seizes up, my hips lock (freeze) I cannot make another step for like 3-5 minutes until I "unlock". I literally cannot move my lower body until the "freeze" and shocking as mention passes. Sometimes I break out into a hot flash prior to the locking/freeze and I am always weak and must sit down afterwards. I no longer go out anymore. I cannot go grocery shopping. I went and ran errands the other day to pick up 3 items and got trapped in the store because I had an episode. My cane does not help anymore, and a walker is too heavy because I have RA in my shoulders and throughout my body.
I yell every day as the pain makes me so angry. I can't help it.
Angela lilfunky1 sorry nerve pain is the worse. I live in New Hampshire so no fire ants. I was in South Carolina a number of years back for my sons graduation from army boot camp. Well we were on base with him one day. I got what I thought were nerve pains in my foot. Well I looked at my foot and see this little red ant biting me. But I decided I would rather have the ants biting me than some of these excruciating nerve pains. If mine start out as excruciating I yell sometimes. I am better dealing with the nerve pain if it starts out small or not to painful. I hope your pain gets better soon for you. More research is needed to figure out nerve pain and how to treat it.
Yep.
@@big70booty I have the exact same symptoms the locking up can't move extremely painful all day and night like thousands of bee's trying to sting their way out of your skin, lack of physical control in emergency situations.
I have been getting the run around for 10 years now.
My condition was caused by falling off a ladder with my tool bags on onto my hammer holster and hammer between the butt cheek's basically pushing my hips apart and bulging discs in the s1 s2 L4 L5 trapped nerves and now caused extreme depression and anxiety fibromyalgia feeling like I'm getting stabbed with hot daggers in my shoulder sockets.
And I'm still trying to find a Dr that can help me out for 10 years.
Getting strung along by the Drs gets really old "just keep taking your medication" but it doesn't relieve the pain and ask for something better then you are profiled as a drug addict and a fake.
I have been profiled by Many Dr's because of my appearance, I'm a fully tattooed Mexican male in southern California having to go with governments insurance since I haven't been able to physically work so instantly they assume I'm a former convict and drug addict.
Some people with the exact same condition get immediately helped and surgery or even medication that is strong enough to mask the pain...
I'm ready to die I'm tired of the pain I'm tired of falling down every time I try to accomplish simple daily tasks like shower and basically anything that requires me to leave the bed or a chair.
I'm tired of feeling like my whole body is being crumpled up like a paper getting tossed in the trash.
The worst part is I'm only 44yrs old this is the pain and struggle I have now at the half ways point in life then count me out I don't want to play anymore.
That B&W bit around 6:00 is pure gold! I've a collection of orthopedic and vision issues that mean there're a whole bunch of weird, random things I physically can't do. Outside of my docs and a few close friends, pretty much everybody thinks I'm faking it. I've gotten that 'perseverence' lecture more times than I could count!
Once again, thank you. Just earlier this week I got slammed with my ability to walk and that I don't seemed to need the chair. Now, first thing I should mention is that wheelchair users travel for free with buses, subways, trams and trains in and around Oslo.
I was going to the train station to catch a train home, and as I was in the underpass to the platform, the train arrived, so I had to get up and run to catch it. So I got on board, wheezing and aching in my hips, knees and ankles, and then the conductor came to validate my ticket, saying that "Well you didn't seem to need the chair. So it's x for a ticket." "Umm hello there, sir, you saw me for a grand total of 30 seconds sprinting to catch a train. I'm going to be paying for that run for the next few days. A walking wheelchair user is still a wheelchair user. You don't have to be paralyzed to be in a wheelchair." "Yeah whatever", he said, and trotted off to the next passenger...
So yeah, the feeling of needing to hide what abilities we have is something I can wholeheartedly agree to...
Great video! The explanation of the pain is spot on. I actually was using a heating pad so that I didnât have to take as many pain meds. That was until I actually started cooking my skin from the heat.
Did this too. Smh. I have a burn spot now.
inductivepleasure Ouch! Praying for a quick healing. My back is scarred from the heating pad, but it could be worse. My Doc said that he had another patient that was using a heating pad so much that their lower back looked like a well done steak. Iâve decided no more heating pads, Iâve got enough problems without adding open sores.
@@lynnrenee8369 oh wow. Its so crazy because I thought I was the only one. I am glad you are ok. I have a weird scar that won't go away. Its been a year.
If more people had the courage to use a wheelchair it could help normalize ambulatory wheelchair users. Make it more mainstream. I think the fact that we hide it and don't want to draw attention to ourselves feeds the misconceptions and misinformation. Be strong. Use your chair.
I'm sure you must know how many people appreciate this type of video, including me! Thank you guys, it sure is cool to see you two working out together. Really appreciate you guys, both of you!
I have stiff person syndrome, and spasms cause my legs to be weak, which cause more spasms. It's been 2 years. Haven't had enough PT because of covid. I use a rollator on a good day for 5 mins at a time. Thanks for inspiring me to do what l can.
Not a lot of people with SPS use wheelchairs. It's even stated in literature that they rarely 'need' to but this is a clinical viewpoint and not a therapeutic one. People with SPS ought to use a wheelchair as often as they like in order to have a full life. You can't just be sparking your spasms off all the time and be living in chronic pain. Use a chair!
This strikes me so weird that people would do this... bc everyone should know that each mobility challenged person has different mobility needs. đ€·
Came for the absolutely genius modified workouts, stayed for the pep talk and hype up for ambulatory wheelchair users. đŠ
Itâs the same when you have progressive MS. Youâve got to keep positive.. & when you bump into ppl who new you able bodied.. then keep up beat.. & donât make it complicated.. if they ask or look complexed.. then explain.. & keep it simple.. not all are empaths.. so donât make it awkward.. & donât make it emotional for us or them.. as you say.. donât care what others think.. we play the hand we are dealt.. they have a separate hand..& play a different game..good luck to you all.. happiness is in the mind.. not the body.. â€ïžâ€ïžđđ
@Medley ..I am a 2PMS .. man.. I am not a sufferer..Iâm just a person who doesnât function as well as the majority..before I was diagnosed.. just thought I had aches & pains..through manual work.. & when it progressed to loss of mobIlity in arms & legs.. I went to GP.. who sent me for MRIs .. then received diagnosis.. so now I have the heads up.. so now I plan for a different future.. i socialise as much as I can.. we should not let these diseases.. imprison.. us.. most of the battle is getting fiscal aid.. & then learning to mange on smaller budget.. but the social side doesnât need to be costly.. & helps the psychological aspect.. which I think is the biggest hurdle.. if we have healthy minds.. our coping mechanisms are better to deal with pain.. or other physical conditions that affect us .. & yes we all have visits to dark rooms.. but itâs our choice if we remain in these rooms..
Even a catch-up coffee with a friend can lift us.. a phone call to family or friend.. we are not isolated.. we are just a minority.. we can grow our circle.. even with those with similar conditions.. or worse.. we are in charge..not the disease.. itâs just impedes us.. not stop us from living..
& to live we need to adapt.. emotionally.. physically & how we treat our bodies.. I choose not to look within myself.. I choose to remember who & what I was.. & keep my frame of mind in a good place.. we can only be positive by doing positive things.. so stay in the well lit rooms.. & get ourselves out there..I choose a wheelchair.. Iâve met others with electric scooters.. but all are happy to meet up & chat over a coffee or a tea..
We have a whole world to talk about.. & if you havenât been to some places..then maybe your coffee buddy has.. & Iâm always happy to chat, to new friends đđâ€ïž
:
Made me cry đą. Iâm incomp L2345. Was just L4/5 but after recent MRI was told Iâm crumbling. Pain is bad and working full time and doing a degree gives me so little time. But as Iâm overweight and depressed too this has inspired me to get going again. Now looking for seated yoga on CZcams and following Maria.
I used a wheelchair for a bit, but not paralyzed. Iâve had 3 major back surgeries since December 2014, and the last was November 2019. Had a 12 hour scoliosis spinal fusion surgery. The hardware failed from my Lumbar spinal fusion December 2014. All this hardware came out, and new put in. Iâm fused now from T3 to my pelvis. Iâve also had one hip replacement in October 2018. Now my left hip is going! Life hasnât been easy for me. I nearly died in 2017, six days after a Lumbar Lamenectomy surgery. My colon ruptured. I awoke from emergency surgery with a colostomy bag on the left side of my abdomen. đ Iâm 59 years old now, and I wonder sometimes when this is ever gonna end?
Amy Thomas I can relate to what you are going through. I have had several brain surgeries and back surgeries and neck surgery aswell. I just keep telling myself that ,I am upright and moving. I just do what I can do for that day,and I make a plan for what I want to accomplish in that week, and I don't feel bad for having a bad day during the week, as long as I get some of my items on the list done ,I feel that I accomplished something. I try to exercise when I am up to it,and try to have a positive mind set.
Beverly Dust m
@@larrymeade1129 what does m mean confused?
Amy Thomas and Beverly Dust May the LORD place his healing hand on you both
I'm in a chair because of ME, Lyme and POTS and people always look nasty and say nasty things when I stand up if there are a few steps or if a shop is too narrow. It's not fair, only about 70 to 80 percent of wheelchair users are parttime wheelchair users or not fully paralyzed users! I'm kinda used to it now and I try to educate rude people whenever I can. †Also through my youtube channel (in Dutch). đ I can't do workouts like this but I can do 1 or 2 numbers with Just Dance and people immediately call me a faker, but I could never walk a full day of theme park fun!
People with ME need to use a wheelchair in order to have any life - end of!
Love this video Richard. I am incomplete T11, T3, L1. I qualified as a Personal Trainer before my accident also a Back Specialist and I have been still teaching Personal training whilst in my wheelchair or in a comfy chair and my clients still loved it. I also have been called fake because I can walk a bit. I was so so upset and depressed as a friend said this. I was so shocked. Why would anyone especially in my profession what to be in a wheelchair!!! Realised they are not friends at all. So please do train as a personal trainer Maria. You will love it. But do it. Its fantastic helping everyone. X So true about the pain also Iâm the same and no one can see that as Iâm a smiley person.
Unfortunately these kind of ''friends'' exist and they are not true friends. I can only walk shorter distances due to shattering both my heels and having a fusion done (Gosh I wish the surgeons hadn't performed a fusion) and I've had ''friends'' inviting me for a HIKE in the woods almost as if to rub it in my face and anger me or tell me 10 times in a row how they are going for this long walk (Yeah I get you are going for a walk but is it nessasary to repeat that 10 times as if to get a reaction from me). The ''friends'' that were even too busy to visit me in hospital when I first got injured... Weeding out these type of ''friends'' have been very beneficial to my mental health.
I don't want to put anyone on the spot and it's entirely up to you if you chose to reply but I'm curious how you damaged your spine in areas so far apart?
I actually go through pain management for my lower back some days I need a walker or even a chair. I do my best to block others opinions. When I ride the carts at stores I have gone as far as showing of my scars. I'm not paralyzed but I have had spinal surgery and major abdominal surgeries. It's a super long process to get back to the before but I've come to terms that I will not 100% but 75% to 80% is possible so hard. You are positive for us all out here just doing what can. One day at a time and I'm still here on this kick ass đ
Iâm not Paralyzed but do to my chronic pain, I use a wheelchair for long distance travel, people say Iâm faking all the time
What has hurt my heart in public most is how people will purposely refuse to make eye contact with me. :/
Watching your vids is like therapy. I'm 48 & have been in a wheelchair since 2012. So, lol, I'm not a spry young thing anymore but about 9 months ago I started working on my leg muscles.
I'd tried doing arm exercises but found that my RA recently moved into my elbows. :-( You're vid has helped me to try to think of how I can start doing some again without bending them. :-)
I've been searching for more than a year for wheelchair/bed bound exercises by people who are in chairs/beds themselves. I look forward to more videos &/or links to such!
Thank you so much for your transparency, mentally & physicallyâŁïžâŁïžâŁïž I cried for a week after I found you. I'm so very grateful! =)
Thank you for this video. I was accused of faking, attention seeking or it all being in my head, my whole life until my 30âs when I finally got a diagnosis for my eds. I used to have things like my wheelchair taken away because they didnât want to âencourage my behaviourâ. At one point became afraid to walk even the very small amount that I could at the time because of not being allowed my chair when I did need it. Even then my family would consistently take me places that werenât accessible and say things like âoh there are a few stairs but you can crawl up themâ.
Now, thankfully, I have a supportive partner and carer and donât have to be afraid anymore because they accept that my abilities can vary a lot and even point out to me when they know Iâm pushing my body too much even if itâs a thing I could do the day before. I still fear peopleâs reactions when I go out in public though. People just donât get how damaging the culture of calling people out as âfakersâ is.
My hips twist when I squat also and now I know why! Thank you.
Edit: one of my legs are stronger than the other because itâs about 2â longer and this made me feel so much better about having a âgood legâ and a âbad leg.â
as someone who uses a wheelchair because of chronic pain, tysm for making this video
âIâll pray for youâđ
I'll prey on you đ€Ł
My chair is for preventative purposes... the necrosis of my acetabulum and hip injury causes fractures. Fewer Fractures equals better chances of repair/hip replacement.
My repair/ hip replacement isnât due until age 55. With NHS uk.
Iâm seen as a phoney as Iâm able to walk, just not far. But Iâm useless on anything uneven and need help.
Denied amputation requests, and on top pain main meds. 120-140mg morphine a day.
Preventive too. I can technically walk as far as I want with minor issue - pain. It could be destroyed with meds but I'd rather have the other treatment - simply don't do activity which is causing that pain.
Hi Claire. Iâm the same. I can walk a little and use a chair all the time when Iâm out because Iâm in so much pain and incomplete spinal cord but itâs disgusting what people say behind our backs, when we know how hard and painful life really is. X
Karen Reece-Buck Yes ugly response from those who have no clue what we go thru just to appear presentable in public.
Iâm been an agoraphobic for nearly a decade, since the wheelchairs arrival, and some hurtful comments that hit hard....the parking, and disability. I was set upon by welfare investigators trying to claim I was faking. They received a report from someone close to me. Yet they wish always to remain anonymous.
with lockdown Iâve not left my home since January weâre still shielding until 30 Sept, these videos give me such hope of better days.
My dearest hubby is fighting late stage cancers, he insists on pushing me... but heâs been hospitalised with Covid from community spread... we finally tested negative.
@@ClaireWill71uk if you're shielding how did your husband get Covid? Was it a visitor to your house?
F. OC thanks Claire for sharing that with me. We are all in this together and we will make the best of our lives. Thank you đ
I'm one of the "lucky" people living with chronic pain. I'm able to walk about 80% of the year (75% of the year with a severe limp), and for the 20% of the year that I can't walk I end up stuck in bed, but most of the time I feel really embarrassed if I use my cane or crutches as I'm a 23 year old college student but I'm constantly in pain due to issues with my nerves as well as my sacroiliac joint thank you for discussing the people who call those with disabilities fakers
I really love your vision of when itâs okay to use a wheelchair. I have EDS and Iâm on a breaking point of using a wheelchair on days Iâm not doing great. It saves me a lot of energie, but knowing people will react is holding me back. Thanks for telling me it is okay. Iâm really struggling with this issue. đ
This video made me smile more than I have in month. Thank you for empowering people with disabilities and helping us know we aren't alone. I also really appreciate y'all talking about not worrying about what other people think about being a wheelchair user in whatever capacities are needed. Y'all are super heroes!
Why would anyone fake that they need a wheelchair?
ugh, my mom would never understand this. she thinks im using my chair to "take advantage of people"
cos they are the kinda person that would do that for money/sympathy etc.
@@FaenumVena expensive way to âget moneyâ...
they dont realise just how expensive it is, they think we get handed everything on a plate for free not even trying to look at how much something as simple as a fork with a fater handle costs compared to a normal fork for example.
The same reason people call me a faker when I read things even though Iâm legally blind. Iâm not profoundly blind, but people think blind means canât see anything
I have Osteogenesis Imperfecta (brittle bones disease) and am ambulatory but life is SO much easier in my chair. I have chronic bone and nerve pain and this video just rang so true for me. It's like you've been rolling alongside me.
I live the judgemental stares, the abuse when people see me pull into the wheelchair park, the freaked out stares when I yelp from the nerve stabs in my legs.
I'm sorry you both live the chronic pain life but I'm glad I'm not alone. It's such a lonely world when nobody understands the invisible struggles.
I've saved this video to rewatch on the days when it's all a bit hard to face the day.
Thank you to you both x
I literally can't believe it. That illness is well understood. If you get abuse I don't know who wouldn't! People don't understand what they are jealous of! đ
I'm able-bodied, but completely understand that this isn't a case of either having full use or no use of one's legs. There are many situations in between where a person has some mobility, but still can't walk far enough or well enough to not need to use a wheelchair too. I say more power to you, the people who refuse to give up or become housebound. If you need my consideration in any way, just let me know.
It would take me 3 days to recover from going to the groceries store without my chair. I laughed out loud when you said âthatâs all you can do that dayâ because like, understatement. Wheelchair has made my life so much better. My life would be so sad without it. Just barely surviving, going from one essential task to the next, never any time for love and joy and adventure, getting by dosing on codeine and shit. Iâm so so glad that my life isnât that anymore.
(I have EDS)
As far as people judging you for having some movement and feeling in your legs, I think thatâs ridiculous! Donât let that stop you! Donât hide what you can do! I kinda wish I had some movement or sensation but I donât think I could deal with the pain that you have to deal with daily.
Iâm so happy that Iâm learning from ya and other wheelers. I âfall in the crackâ with a lot of helper and other programs. Iâm either called disabled or not enough disabled OR there is ya older than 21 or not 65 so ya canât get help or services. It is very frustrating especially living alone. I have my good and bad days which vary what Iâm able safely to do. With fallowing ya and ya other friends has helped me a lot. Godâs blessings to yâall!
This is actually very good for me, I may not be disabled, but I just had a major surgery on my left ankle about a little over a week ago, I will definitely use these in my rehab. Iâm a basketball player at my high school and Iâm very worried about being able to play in the future, so thanks for being able to help me !
Thank you for this video! I always thought I didnât belong to anywhere because Iâm a wheelchair user and can walk a little. I LOVE that you mentioned it doesnât make you a faker if you use the abilities you have! Iâve been in a chair a long time, but only recently embracing it. These exercises give me some great ideas, thank you so much!
Mind reading is one of the categories of negative automatic thoughts in CBT. Loved seeing how you both adapt exercises differently!
I am not a wheelchair user, but I use a mechanic legbrace that goes from my hip to my foot on my left foot. People have actually asked me if I use it as a fashion statement! I was shocked that they would even think that I would us it for fun. I have suffered a cerebral hemmorage, and it's NOT fun. I thank you for your great videos, they really help me as well, even though I am not in a wheelchair. Thank you
Thank you for this and re-emphasizing the uniqueness of each person's injury. Like you my SCI is incomplete and after years of self-designed at home PT I'm able to stand and walk short distances. But as independent as I am at home, I doubt I could walk from my car into a retail store and then shop. Having said that, any efforts at exercises/movements produces positive results. Even in small increments.
Watching this video was quite encouraging to me. I have MS and am confined to a wheelchair so this encouraged me to continually exercise in any ways that I can, with full intent on getting back on my feet again!
Only at 0:24 and I can't resist speaking "Friggin awesome you two!!!!!" Great video already, now to watch the next 18mins.... And I'm completely able-bodied as they say (but have always been a friend to many paralyzed awesome folks...) Keep doing what you're doing please!
I'm an LBKA and use a wheelchair. I'm getting so much out of your videos...ideas that I can apply to my own journey. Thank you to you and your friends ;)
Chronic pain is the main reason why I have a wheelchair. I have a l4 clauda Equina injury. It is not the âspinal cord injuryâ because it is so low. This does not mean that I donât have many of the same problems. I have problems with bladder and bowels. The pain has limited my ability to walk more than 20 feet without severe sweating and if I push it I get sick to my stomach. People have made many comments that I donât need the wheelchair even family members. When I got my wheelchair I felt so free and they have shamed me so much.
As a guy who's been paralyzed from the waist down with t12 spinal cord injury for 4 months in watching this video made me feel motivated to do these one day hopefully đ€
I absolutely love this. Thank you for more videos on how to work out while being in a wheelchair!
I wish more people here in Northern Ireland would understand this.
I wish more people in the world would understand this
thank you for showing me these modified exercises!! I love these and the modifications aren't ones I could have thought of myself. Love seeing both of you modify differently too. Really emphasizes finding the right exercise for your specific body.
Great video guys. I have Cerebral Palsy, I've been trying to find workouts I can do. I really love your channel., it has helped me a lot
Itâs so encouraging to hear the insults we fear encountering being said in a sarcastic funny way by people in the disability community
As an ambulatory wheelchair user, I, too, have feared looks and sneers from doing things like getting up to walk to a toilet in a public space
Yes! Thank you both for making this video. Definitely love making exercise more adaptable for me. I love the fact that you showed different options for different abilities. I just started doing hip raises two days agođ The struggle is real so thanks for helping with the journey đ
I am able to walk short distances with a cane,but I use a Walker for longer ones. I can totally relate to the the pain ,I get pain in my lower back and hips and thighs,I also have migraines and people just don't understand why I can't do things on a certain day but can on other days.I found the examples of the variations of the exercises very interesting and helpful. I will definitely be trying them out.
Two things... people always ask if I can walk cause I look so ânormal â to them! Ha! Secondly, the pain is real. T7 complete. burning, tingling -sometimes hot, sometimes cold, feels like stickers are being poked in body and being strapped by a tight belt. Crazy! Also, at the level of injury, a touch- even a light touch -on the spot (especially on the front), it feels like a severe sunburn being scratched!! Ouch. Lastly... those neuron zaps. Thank goodness theyâre not everyday, but Iâll have times when itâs about 72 hours of zaps of about every 20 seconds. Those are tearful!
No meds... just get up and go and deal with it. Keep moving!
Not everyone who uses a wheelchair is paralyzed!!! I have medical conditions, I can walk, but the amount of medication needed to do so is no longer acceptable to me, so I use a chair about 70/30. When Iâm having a good day and I can I do walk, but when Iâm having a bad day I absolutely need my chair
I never knew about the squat method, this is really helpful for me to do new types of exercises to help not completely lose the muscles in my legs. I use a wheelchair full time because of my Muscular Dystrophy (CMT type 2A) so my hands and legs are affected, more so my legs than my hands since they're not strong enough to support me. My hands don't have much grip so I have a problem doing most exercises. My legs are also just like your left leg because of the fiber atrophy that comes with my disability, except I can't kick them out at all maybe like a few cm. I love your videos and all the confidence you made me bring to myself because of your videos, I now know ways that I could live on my own in the future. I'm 22 and have been in a wheelchair for about as long as you have, about 10 years.
As a new part time wheelchair user, I would have watched this earlier if the title matched the content đ oh well! I really related to the pain part of the conversation with my experience with my tethered spinal cord diagnosis. So much pain in my legs all the time and walking and using my legs makes it so much worse. It was cool to see how two different people have figured out some exercises for their individual bodies. Thanks for sharing all of this and having an open and honest conversation.
Iâm a low injury complete and I have pain all the time too. I still love ya bud.
This is a breath of fresh air. So super helpful! Thank you for helping me and others in the community to be brave and thrive. â€
I'm a C4-5 incomplete quadriplegic with full use of my right arm/hand/fingers and 75% use of my right arm/hand/fingers. I have full use of my core and back muscles and I can move my legs. I can stand with assistance but I can't walk. I get that all the time when people can't grasp the concept of me having these functions but still being paralyzed. It's like they think that either all of it's gone or none at all. There's such thing as an in between
I love this video!!! It is great for spreading awareness, inspiring people and educating those that donât understand each personâs disability is different. Thank you for the great content!
A lot of great comments here. We have to stop thinking of people in wheelchairs automatically as paralyzed. What we need to see is that they are mobility challenged. I would imagine that there are some who are paralyzed who may have some movement to move their legs, but not anywhere enough to support themselves standing.
Keep up the great work! It would be nice if you could make a video about the sidefacts of the sci besides not being able to walk for those people who really don't know what this disability actually is.
Only lack of education or knowledge, when people think, that you are faking! I have MS, and I am a wheelchairuser. I can walk, but not very long, and my legs are not very reliabel, so it is a bit dangerous, when I get out of my wheelchair. I do not have full controll from my waist down, but I learnd some of your video. You have some god exercises, but I would like to have my trainer by my side, just to help me up, when I hit the ground! Thanks for sharing! đ
Thanks for your channel. I have a llsi and my leg strength has been dropping the last year. Iâve gone to using a chair more and more. Thanks for the info and exercises your putting out. Iâm hoping to be able to get back in my rebuilt landrover defender. I love that motor.
we are many "flexi walkers" that needs the wheels over distances. :)
6:05 oh gosh, this made me laugh, anyone with a chronic condition, whether physical or mental, has heard this
Than you so very much for this video. I have struggled for years with this very issue of using a chair but being able to stand. I have had 7 spinal ops and suffer from adhesive arachnoiditis in the lumber plus nuts and bolts in my neck giving added pain to my arms.. Pain pain pain - I fall over and suffer. Being 65 yrs old I have many other issues. Like you I can stand and walk very short distances providing it is a very smooth surfaces. I struggled with the feeling of people calling me a fake . My wife says I am silly, but it has been a struggle. Thank you for this video and helping me to understand. very much appreciated. cheers
You guys are awesome. I am jealous (in an emotionally healthy way) of some of the capabilities both of you have, but instead of being angry at you I choose to be inspired by you in hopes that I can get to that level some day soon. Hard work instead of bitching online is the path I choose.
You guys make me cry đ because I also suffer from that burning pain, spasms and pin and needles. And so many other pains.
I finally understand.
I have fibromialgia/M.E and have chronic pain and exhaustion. The only way I can shop or go out with my husband is in a chair. Thanks for this video. No-one who actually puts up with the aches, pains and strains of being in a wheelchair added onto their daily chonic pain deserves to be heckled.
There are also many wheelchair users who can move their legs (halfway) in a targeted manner, but lack the stamina to take more than two or three steps. For example with 'multiple sclerosis'.
Es gibt auch viele Rollstuhlnutzer, die können die Beine zwar (halbwegs) gezielt bewegen, aber es fehlt die Ausdauer um mehr als zwei drei Schritte zu machen. Zum Beispiel bei 'Multipler Sklerose'.
Two favorite wheelchair creators
Love the way I crossed Ur weak leg over strong leg. I have done that especially when swimming as my left leg has got serious muscle wastage due to 3 strokes. I really wish I could do squats but my hips or knees won't let me I have very little hip rotation and suffer with bilateral hip dislocations caused by a messed up landing on an assault course when I was in the army 24yrs ago.
These exercises are awesome! Thank you! I need to build some strength in these areas.I'm in the pool three days a week, and that helps so much with mobility and pain. I still can't walk without a ton of pain, so I'm looking at getting a chair so I can be more mobile.
I completely understand the situation, for people sometimes is kind of confusing when they see me standing or walking and sometimes see me rolling, they think you are faking
You guys rockđâ€ïž! This sci is literally the hardest thing I ever had to deal with and it helps me so much that you both can talk about it and that we all have similar triumphs, pains, gains, and downfalls. Thank you so much for everything you do! đđđȘđȘđđâ€ïžđ
This truly just opened my eyes and I am now sure that I want to get a wheelchair, I haven't been doing anything other than school because it just leaves my legs in so much pain that I cant get out of bed after a school day. i don't know why I kept telling myself and people that I would wait until it was no longer [hisically possible for me to stand to get a wheelchair, instead I'm gonna get one and have the privilege that many others don't of slowly transitioning to a wheelchair.
I can relate to having a low level spinal 'injury'. I put the word 'injury' in inverted comma's because actually I'm Spina Bifida, but very low level. Also, I can relate to Maria, in the fact that I suffer from depression too. But she's right, there comes a time when you have to concentrate on what you CAN do rather than on what you CAN'T do!
I use a powerchair as I have problems with balance and control of my hands. I can walk with crutches but only very short distances. A lot of people are surprised when I stand up, but the powerchair has made my life so much easier and increased my independence.
You both made me smile today!
Iâm a faker too! Sad that the most hate comes from other wheelchair users.
I worked so very hard everyday to be able to walk again. I deal with extreme pain everyday,
I never get to sleep through the night Cuz the pain wakes me up every half hour or hour.
But God is good, I stay joyful, humble and thankful for all that I can do.
The doctors said I would never walk again but thatâs up to the man upstairs!đ
And youâll never find out till you try! And I donât mean for a week or month. It took me 3 years of daily PT
To get where I am today. Good luck, donât hate, congratulate!
I have FND, sime good days and some bad. I can shuffle around the house most of the time but I also suffer with fatigue and cannot walk far. I also have functional seizures which shut my body down entirely, we all have our own unique struggles which a chair makes easier. Thank you for showing people.
I can still walk (well, more like limp by now, but I could walk a bit a year ago), hundreds of meters, but it's becoming increasingly hard, so I'm starting to learn to use a wheelchair, and that's how I got to this channel. I really hope I will never be paralysed, but multiple sclerosis is sort of a lottery - you never know.
Very helpful video thank you. I've recently become an ambulatory user due to Ankylosing Spondilitis causing severe pain when I walk now, blackout pain over anything more than a very short walk. I finally accepted I needed a chair and it's been so liberating , just yesterday I got out around town for a couple of hours with my wife , impossible with my legs. I have my crutches attached so if I do get up (with their help) there is hopefully less chance of someone commenting. It is a concern though.