Let me know your tips/advice for newly disabled/wheelchair users. Would you like to see a part two? Videos mentioned Tips for choosing a wheelchair: ua-cam.com/video/2wToi3XCMZw/v-deo.html How I became disabled age 9 ua-cam.com/video/JDX5md1qbd4/v-deo.html Basic wheelchair skills ua-cam.com/video/gwa7hwpCCd4/v-deo.html How to choose a wheelchair: ua-cam.com/video/2wToi3XCMZw/v-deo.html
To the newly disabled: You’re the only person who can live in your body, so you can’t worry what other people think. You will have to do what ever you find that helps you function in your life from this point forward. Pace yourself, you will have ups and downs, but know that you are not alone. ✌️
To accept the mobility aid better you can decorate it, bedazzle it, put some of your personnality and that help a lot to just view the object like the cane, the walker or the wheel chair more of a fashion accessory and that help me a lot in the acceptance process
I used to put stuffed animals with magnets in the paws on my rollator when I was still able to use it. I use a scooter or power wheelchair now and need design ideas.
This was a great video, and I think a lot of people will get some valuable tips from it. I am 52, and I was born with my disability (Spina Bifida). I've been using a wheelchair full-time since my sophomore year of high school, so I have quite a lot of experience with using one. The best advice that I can give is to not let your disability keep you from achieving your dreams. I wanted to become a teacher, and I had concerns about how I was going to do that from a wheelchair. But I pursued it in college, and I was hired to teach high school back in 1996. I'm currently in my 28th year of teaching, and I still love it. Of course, I have to do some things differently than my colleagues, but my students think of me just like their other teachers...except I sit down all the time. Being in a chair does make life more challenging and sometimes VERY frustrating. But it is possible to have an amazing life in a chair. I love my life, and I wouldn't trade it for anything else.
Thank you for this video...I have watched it before, but I'm re-watching. I have just become an ambulatry wheelchair user after years of struggling as my condition is getting worse!! I use a rollator and I have been struggling for a while!! Finding your channel has helped me so much, and I named my powerchair Virginia Woolf....I had my first major outing on Saturday, I got to race my daughter for the first time, as I used my new powerchair and it was wonderful!! I know I may come across rude/abelist people, but I felt great!! I don't know why I didn't do this years ago!!!
Hi Gem, I've been avidly watching your videos since March 2023 when I started my wheelchair journey. You have been a tremendous support for so many people. I'm very grateful for all the hours you've put in to create contact for those of us who have benefitted from your wisdom. From my limited experience so far it has been very important to me to hold on to as much independence as I can and only ask for help when it is for something that I can't do for myself. This helps me feel less like a burden. For hobbies, I am a keen piano player, knitter, crocheter and I also enjoy sewing and dressmaking. There are often groups for these as well which can help your social life. Thank you.
I would recommend working hard to resist and push back against the "burden" narrative which comes from people who do not have disabilities. Yes, the things that come with disability can be burdensome (often because society puts barriers in our way including ableist attitudes) but YOU are NOT A BURDEN! You are a whole person with the same rights to take up space and have your needs met as anyone else on this planet!
Hi thanks for the tips, I have watched all y our videos. I became a wheelchair user 5 years ago after falling and breaking multiple vertebrae in my spine, after 3 surgeries and 2 sets of rods I now have a different life. I was a dirt bike rider, and home repair whiz, but now I am on the sidelines on 4 wheels rather than 2. I didn't have anyone help me adapt to life on wheels but figured things out on my own. One thing I have as a little tip is if you find your counters a little bit too high to do things comfortably like I have I found that a cutting board placed over an open drawer brings things down just enough for me to do things, and my chair rolls under the open drawer so I can sit and cut things up comfortably when cooking. Also an adjustable bed is a fantastic option if you can get one. Mine helps me to sit up when I wake up in pain. Please be careful to mind yourself for pressure sores, I went to bed and woke up the next morning with a huge blister on the side of my heel and that was just from one night of sleep, so now I sleep with a pillow between my knees to my feet. Also think of your wheels as your wings. I bought a motor for the front of one of my wheelchairs and my "scootie" takes me on all sorts of adventures. I can walk a bit with assistance but the pain and risk of fall is too great so I use my wheelchair as much as possible. Try to get a chair that is fitted to you as well, I was miserable with the standard off the shelf chair and it was so heavy so after a year of fighting I got a custom fitted wheelchair and it has made life so much better, and apply for every benefit you can being disabled is expensive. If you are newly disabled yes life will be different, but that's ok, it may take awhile but you will find your groove and find new adventures. Good Luck to all.
I'm so glad that you mentioned hobbies- they have helped me so so much. When I first got hurt, i was so sad- i loved hockey, archery, and badminton! learning about adaptive sports and participating in them has helped me feel a little bit of normalcy, and i can finally enjoy hockey (which i couldn't watch for a whole season because it just made me sad) but now i can do hockey again and watch the penguins, the coyotes, and enjoy what i love again. Thank you so so much, Gem.
I’ve been following you for quite some time now s have learned so much, BUT you have no idea how much I needed this very video in this very time in my life. As my health has been quite bad, in addition with progress of my conditions, I’ve been heavily struggling. This actually helped keep me inspired to keep going and I will learn and be okay with how my life as a disabled person may change!
Hey Gem, you are so right about finding others who are wheelchair uses. I play wheelchair rugby and it's so much fun as I feel part of a team and just feel "normal" (I HATE that word).
My tip for dealing with heavily-cambered pavements is to zig-zag on them. (Shallow and long, not sharp and short ones. Exact angle depends on camber.) Sometimes the total distance pushed can be increased by 10-30%, but it at least lets you push evenly with both arms rather than over-using one side. So at least for me that increases my stamina vs pushing “straight” with one arm. The only downside is confusing people who want to get out my way 😅 Love the “reading glasses” analogy for ambulatory wheelchair use.
I just switched from a cane to forearm crutches yesterday. The cane was making my spine crooked and causing more pain than I could tolerate anymore (10 years of constant pain from untreated degenerative nerve damage). The pain is still there but I'm able to finally stand straighter and relieve some of the pressure when I'm standing still. However, because it's degenerative, I'm also going to get a wheelchair for longer distances and going out. But, with the forearm crutches, I was able to go shopping at a store and more or less keep up with my family. The pain was worth it because, for the first time, none of them suggested cutting the trip short or, even worse, telling me to go sit on the bench at the front of the store to wait for them. I'm only in my 30s and this always hurts my feelings since I used to be extremely active. Now I'm crying because, even though I can't go as far or as fast as I'd like, I'm not being excluded or viewed as a hindrance. When I get a wheelchair, I'm gonna leave them in the dust just for a laugh. 😂
Thank you! I began to need my wheelchair in my very late 40s, I'm now 60. I too was told, by someone dear to me, "it's like you're giving up." I still try hard to use a walker inside my house all the time, but I was getting so scared because at work I had trouble just getting to and from the restroom. I fell a few times, and it was humiliating.
I go to this one department store that is fairly accessible as they have the largest assortment of handbags in the area. As I'm only there for a new bag, I'm there maybe every 5 or 6 years. What I hadn't realized, since my last pre-Covid visit, they had built up this huge makeup-perfume "shop" area between the 2 main entrances to the store. It had some of those auto scent spritzer gizmos going whenever anyone walked by, which of course everyone had to do to get in the store. Among my many problems is COPD and as soon as I hit that mix of scents, I started gaging, gasping, and felt like being sick. Even though I'm not supposed to be wheeled about when sitting on my walker, I had to get my hubby to help me get out of there - fast - as I was afraid, I'd pass out! I've never run into this before and am not sure what our US ADA rules have to say about breathing issues. Ideas on who to talk to?
Oh Gem.. great video. I never knew you even dyed your hair! The best treatment for your hair is to leave it alone and use only shampoo and conditioner. Do what is best for you of course. Some people can wheel much further than they could walk that’s why they started using a wheelchair as walking can become difficult or impossible. I love music also and played the flute. How did you work the foot pedals on the piano? Many thanks xx
Thanks so much for this video. I have been using a wheelchair since 2022. The advice about ambulatory wheelchairs is soooo good, the chair changed my life and got rid of so much pain! I look at people struggling on sticks now - as I used to - and wonder why. My life has really taken off since getting my first active chair - it has been liberating. One piece of advice I would like … I have folding handles on my chair. My adult stepdaughter likes to push me the minute it gets tough. I know she’s trying to be kind, but I like the independence of the chair and I find being pushed very infantilising (I’m 58). And frankly, I’m faster than her walking!! How do you I get her to stop? However many times I say “I’m ok, I can do it myself” she pops out those handles and starts to push me. Any advice??
Unfortunately you have to be firm even if they think you are making things harder for your self. I still have this problem now some times.my parents would say why push your self when someone can do it for you.? The thing they don’t realise is it’s like they are taking your independence a way and they don’t understand that. I even got my handles changed from push handle to adjustable ones as they did nothing but moan that the fold down ones are stupid idea and to low as they insisted on pushing me as they said it was just until I get knew to my Wheelchair but I was never going get knew to it was I? If they pushed me all the time. Now I have two lots of handles on my wheelchair which I hate the look of and they insist that the adjustable handles are up all the time just in case I need pushing. And when I was Christmas shopping my Dad said no need to push your self I’ll do it. BUT I SAID NO I have had to put my foot down even though I know they think I am making a big fuss over nothing. My saying is you might understand someone’s situation 99% But it’s that 1% that you don’t understand that makes all the difference unless you have been in there situation your self. Sorry for boring you.
Nice video! Would be interested in your tips for dealing with medical gaslighting and ableist/disabilist attitudes in doctors and other health professionals.
Hello gem. I've been watching your vids, love the positivity! I am not a full time wheelchair user,but I use mine more and more. Crutches for short distance ,wheelchair for longer distance and days of sitting it's my own comfy chair. Recently I bought a handcycle that attaches to my chair- I can go super fast! It has a motor too. Anyone don't be afraid to try another device, ask others about their chairs. With time on my hands I go to the gym i,swim and sauna. Most leisure centres will accommodate your needs and offer substantial discount for membership.
Now that I have my chair, I need to rewatch your wheelie video. My PT has been trying to work with me on it, but I don't quite have the strength and control yet. I appreciate this video for the mindset and ideas, but I'd love videos on how to do daily things in a wheelchair. I like just seeing you functioning and moving around doing normal things (I remember a housework video and a going to the shops video) as it helps me figure out how to move about the world in my chair. Thank you!
For those who can use your legs more or less. Don’t think using a wheelchair as a downgrade or a step back. What I’ve understood from people with incomplete back injuries or amputees, using a wheelchair can actually save the body and help you keep walking in the future. Many with an injury can’t walk ”correctly” which can make the body, back, hips etc worn out much faster if you don’t relieve the body now and then. And a wheelchair can at times actually be a faster way to get around. Don’t forget your upper body work out though!
I’ve been preaching this for a long time. Don’t think of it as a last resort or a failure, but as a way to retain whatever mobility remains! I’ve seen other people with my condition end up severing their spine due to the dislocations, and they all told me they’d wished they’d started using a wheelchair at the kind of age where I did.
Is this a different hair dresser than the one you mentioned before that gave you a hard time about getting the color right? I thought you had said that one didn't have an accessible bathroom. One time when I had a sore back, I told the hairdresser that my back was sore and tight and I wasn't sure if I could tilt back into the hairwash, she put more towels on my shoulders and used a spraybottle to wash my hair at the haircutting station instead of going to the sink, it look longer but it was gentle on my back.
Ahh thats good to know. This is a completely different salon to the one I spoke about last year. The were so horrible to me, I'd never go back. So glad I have found this new one, and they are so much nicer.
Thank You for this video Gem. We are all in this together. And you are so right, when we feel as if we are to blame, because of our disability, we are not the one's in the wrong. The world has an inability to do more. BUT WE WILL NOT LET THEM FORGET! You are not alone folks, don't ever forget. Please don't ever lose hope. There has been times I've been so low on confidence and isolated that I've wanted to yell out to the world and say....well I won't say what I'm thinking! I am incomplete L2-L5 paraplegic.
Funny observation…. When you spoke of being more worn out or tired than “walking people” after going long distances, I tend to “out roll” my family friends.. ha! They comment on how their legs hurt and are tired, while I’m still full of energy and legs don’t hurt. 😂 Also, talking about being aware of other people walking in your way. How many times have you been rolling and your husband or kids are walking right behind you and then you suddenly stop for whatever reason and they bump into you.. and then they get huffy with for stopping. Funny!!😎
I am so glad I found your channel. I started to use a wheelchair 1.5 years ago because I fall all the time due to a nerve-damage in my knees after Covid19. I found it incredibly difficult for my family when I started to use it. Especially my mom didn't want to realise that this is my new normal. The wheelchair gives me the freedom to go outside (which wasn't possible without) and I am glad it exists. My family hates it, because to them it is a symbol of me being different than before. I have one question for those who have been using a wheelchair for a long time: is it frowned upon when someone pushes my wheelchair for me? I also have CFS and I'm too weak to push myself for more than a few minutes. My husband takes over when my energy runs out. My wheelchair isn't one of the active ones, it's a standard model. Yesterday we were in a shopping centre, my husband pushed my wheelchair and when we passed a woman in an (active) wheelchair she looked at me and then turned to her friend saying "don't you dare push my wheelchair, ever" I felt like I did something wrong, but maybe it's just me being extra-sensitive.
No, that woman was out of line! How dare SHE criticize you?! Everyone's journey is different. Don't you go feeling like you did something wrong. That woman is probably a jerk in life.
I’m disabled this year, half year in a wheelchair.. today say someone I have lots of pain in my back, I’m scared to come in a wheelchair… I thought the same always, but live is not over it’s different and of course I mis to stand up and do what I want instead to think ten times how to reach the other side of the street, what is the weather that’s al so different, but I had my home almost wheelchair proof, I’m 46 I go married this year, I’m happy, after a very vey hard year… but live in wheelchair is oké it’s not the end, today in the gym for the first times a compliment again as bodybuilder.. no live is ok..
Using a wheelchair might even help with their back pain and let them retain whatever leg mobility they have left! I knew my back pain was bad, but had no idea _just how bad_ until it mostly went away with a wheelchair.
@@kaitlyn__L true I Ben paralysed because 1 of my hernia ‘s had cut my spine cord t9, I’m for almost 20 year back patient ((child illnesses lumbar scheuerman) this make my back totally painful, and 1,5 year ago I felt down (no more feelings in my legs for one hour) next day mri, diagnosed 4 lumbar between vertebrae gone, kyphosis,scoliosis, stenosis, stil lumbar scheuermann and 7 hernias, I walked almost a year with stick and hoped the pain wil gone, (I lived in a apartment and a felt 7 times down from the stairs, Holland is a country of lots bureaucracy) but the pain keeps going on, new mri march last year, everting the same but my blader, bowling, left leg didn’t anymore what I wil, so my therapist say you have live in a wheelchair you make your back more worse to walk long distances, but now I’m incomplete spine injury ( I wish that I 5 years earlier take a wheelchair for longer distance, exactly what you say but proud and thinking you have only a wheelchair when you paralysed) but my live is better now than the last years before, only lots of medicines that’s what I hate, but whiteout I have so much pain in my back, yeah and nerve pain there is no medicine for that’s hel, but that’s so little bit less since a sit in my wheelchair and I stil waiting for my own chair made on my size and body, I hope it wil be better and better. Thanks for your answer and hope you can read my style of writing as Dutch guy 😉…
LOL my piano teacher told me to take off my glasses because they were making my eyes lazy and I just needed to try harder to see. My parents even listened to her! I have a whole astigmatism and EDS which affects my eyes. *EYE ROLL* Love this video :)
I'm sorry that happened to you. Trying to see without your glasses, when they are needed has been proven to sometimes worsen eyesight. Not to mention the squint wrinkles!
I can't believe people still say that! Maybe discuss this next time you see ophthalmologist or optometrist. Fellow zebra. Especially important as you age to get at least yearly eye check as we are prone to serious issues like glaucoma and macular degeneration as well as migraine. I found 600mg X2 of salt tablets help with migraine due to POTS
Hello Gem one of your viewers, where I am in the middle of the U.S it also has snow and is freezing cold. Also that you have beautiful blonde hair. Also the types of exercise that I do as myself as a able body person is to go out for a walk and also some of the things I do to handle stress is writing in a journal or draw a few times and also for advice as yourself as a wheelchair user for long distance can get a smart drive or any other device that is similar also would even like to see more videos at a mall/shopping center and also on a wheelchair accessible trail at a park when the weather warms up.
Thanks so much for your comment. Oh yes Journeling and be so helpful for some people. Fab tip. I'd love to try a smart dive. Im hoping I can some time this year.
I'm not in a wheelchair... yet. However, I keep falling in my apartment, and Type 2 diabetes is causing horrific neuropathy. My left leg is nearly useless, and my right foot drops all the time and also causes me to fall. I have Scoliosis and arthritis and my neurologist isn't sure what exactly is wrong with me. She's the one who finally said it might be time to get a wheelchair. She tried to have me start physical therapy to strengthen my legs... but I fall down almost weekly! Sigh. If I get a wheelchair, I'm going to have to find an A.D.A. apartment because the one I'm in now is most definitely NOT accessible for the handicapped. Ugh! The worst thing I hear when I do manage to go out in public? "Well, if you had managed your diabetes better, you wouldn't be in this mess!" Gee, thanks. And it's not conclusive that the diabetes is solely responsible for my leg paralysis. Spine problems are contributing to my inability to walk. 😢 Anyway, I'm so glad I found your channel! I'm a semi-professional Abstract Acrylic painter and hope to get back to painting much more.
I don't know if its relevant for part 2 (or maybe part 3) but one question people have asked me (I'm not a wheelchair user but that doesn't stop the questions being asked) is how to do dating/relationship/marriage/that sort of thing/LGBTQIA+ when in a wheelchair. Granted I don't have answers for these questions but I guess from people asking me if they'll ever find a husband now they're in a wheelchair or if I know any disability friendly dating venues, people probably would like to know how to find that special someone while using a wheelchair.
Gem your hair looks great, I’m like Shaun I don’t have any problems with sorting out my hair 👨🏻🦽❤️, I’m going to my local gym this evening and tomorrow I’m going to a dance class for people with ms 👨🏻🦽🎼
I did the wrong thing as I had no local support. I just worked and tried to work as usual. But my work was very supported me a lot, But before the wheelchair (powered chair), I could normally only cope with 1 or 2 days a week before going off sick for a few days; after moving to the wheelchair, I did not have a day off sick in almost 18 months. Access to work was very useful, and I was already using them before I was in a wheelchair; once I had an NHS wheelchair, it made the paperwork a lot easier. If you are working especially for a small firm, talk to HR and site management, as they can get support from the government. Also, DLA/PIP was a lot easier once I had an NHS wheelchair. the problem is how to get the NHS wheelchair; you need to talk to the GP, and the hospital normally can not get you into wheelchair services. I do know people get the default wheelchair from the NHS and then get a good wheelchair of their own if they have the money (my private chair was over £8K but this money came from when I was lied off and just rolled into another job) because it is useful with the DWP to get help, as they use that as proof you have problems.
Getting an NHS wheelchair was a game changer for PIP. They still tried to tell me I didn’t “really” need it to complete daily tasks, but having the prescription on file made the appeal successful!
I had a disability all my life, only a very few knew of it. I have spina bifida I have been able to walk most with the use of mobility aids. But now I can no longer walk with any aids I have been in Rehabilitation WOrking on my core strength and thinking they were getting me ready for a wheelchair. I found out a few days ago I will be in a Power Chair, not sure how I fit in now. It's still a new world and a bit scary. I know people will be looking at me. I plan on staying as active as I can still be. Stare at me I will stare back
Don’t you have a say in the matter? I don’t know the severity from your spina bifida but I know a lot of people with it who has a regular manual wheelchair. Seems drastic to go from walking to a power wheelchair though. Whatever the future brings I wish you strength and happines, never stop fighting!
@@thetoothfairy7688 I think I do. But after re-reading I did leave something out. SORRY about that. I think the reason is I am having a lot of trouble with my left arm I have it visible smaller now. I had trouble pushing myself in a chair. I thought it was just a bad chair(could not be me) I am hard-headed and think I can do anything till They prove to me I can't and that is what they have done. I will get used to this chair. It's just so big.
@@cpr58 Ah, well hopefully they do the best for you. :) A girl I knew(well I was her camp leader) who only had one arm and other problems. She had a manual chair with double hand rims on one side so she could drive and turn it with only one hand. Maybe not something that will work outside for you but if you can’t walk any longer in your home either that could be a choice for you. Maybe a ordinary manual chair would work for you at home too. Though I guess it has to do with money too depending on where you live. The thing I wanted to get to is that if possible it could be a good thing to have both a manual and a powered wheelchair depending on the situation. A manual chair can be better size wise inside a house/apartement and the powered wheelchair when you go out.
I used a wheelchair for my broken foot 6 months ago. And as I'm 73 . I wonder if i should use a small wheeled chair for doing housework in my apartment inside only? Any ideas please?
Advice for the newly disabled...oh yes... stop parking on the sidewalk!. :-) Also don't block the sidewalk in any other way, maybe you call it pavement where you are but the message is clear! If you use a public restroom and they are using the accessible stall for storing junk, say something about it to the manager this time that you notice it again. You seen it happen before, if but in an other place, but this time around.. hey, you can choose to do something about it. :-) Unless you are somewhere where they have a key that only people with disabilities would have, like in the UK, don't tell me you have not noticed an accessible stall was used for storage. The only other thing I could think of is I guess if your part of the world doesn't have anything accessible in general.
An accessible toilet needs to be more than a toilet stall with handrails and a little longer. They need to be big enough so a wheelchair user can turn their wheelchair to the side to transfer or for a carer to lift and maneuver the person on to the toilet.
I've been following your channel for a little while now and enjoy the content and take in things that maybe I hadn't thought about before, and it's been great! Until you said 'betterhelp' is good. It is not, it's shady and claims to follow HIPPA when they actually don't. Privacy practices are very sketchy and please, do research and look at the good and the bad about something before promoting it in any way, shape, or form.
+Wheelsnoheels *That model wheelchair has plenty o' lateral clearance for fortepianos, harpsichords, celestae, Glockenſpiele, &c.* Sad that the organ, spec. the pedalboard, is inaccessible.
A tip I would give to new wheelchair users is to subscribe to this channel. 😉👍 Hi Gem. I love horse videos; do you like them and have a favorite channel? My favorite horse channel is StableHorseTraining. 🐎 🙂✌
Let me know your tips/advice for newly disabled/wheelchair users. Would you like to see a part two?
Videos mentioned
Tips for choosing a wheelchair: ua-cam.com/video/2wToi3XCMZw/v-deo.html
How I became disabled age 9 ua-cam.com/video/JDX5md1qbd4/v-deo.html
Basic wheelchair skills ua-cam.com/video/gwa7hwpCCd4/v-deo.html
How to choose a wheelchair: ua-cam.com/video/2wToi3XCMZw/v-deo.html
Always hoping for a part 2!
@@sharonobryan9713 Thanks for letting me know ❤
Nr 3 part 2
Part 2 would be great.
Part 2would be fantastic 😊
To the newly disabled: You’re the only person who can live in your body, so you can’t worry what other people think. You will have to do what ever you find that helps you function in your life from this point forward. Pace yourself, you will have ups and downs, but know that you are not alone. ✌️
Fab advice thank you
Ty. Wise words
I learnt the wheelie through UA-cam it means i can get myself out of trouble unstuck
thats good
Super useful for barely-dropped kerbs that powerchairs struggle with too. I hate having to do it on potholed pavements but I’m so glad I can
To accept the mobility aid better you can decorate it, bedazzle it, put some of your personnality and that help a lot to just view the object like the cane, the walker or the wheel chair more of a fashion accessory and that help me a lot in the acceptance process
I used to put stuffed animals with magnets in the paws on my rollator when I was still able to use it.
I use a scooter or power wheelchair now and need design ideas.
This was a great video, and I think a lot of people will get some valuable tips from it.
I am 52, and I was born with my disability (Spina Bifida). I've been using a wheelchair full-time since my sophomore year of high school, so I have quite a lot of experience with using one.
The best advice that I can give is to not let your disability keep you from achieving your dreams. I wanted to become a teacher, and I had concerns about how I was going to do that from a wheelchair. But I pursued it in college, and I was hired to teach high school back in 1996. I'm currently in my 28th year of teaching, and I still love it. Of course, I have to do some things differently than my colleagues, but my students think of me just like their other teachers...except I sit down all the time.
Being in a chair does make life more challenging and sometimes VERY frustrating. But it is possible to have an amazing life in a chair. I love my life, and I wouldn't trade it for anything else.
i hope so ,thanks for your comment
I’m a new wheelchair user, the learning curve is steep! I am thankful for you and your information. It has been so very helpful.
Thank you for this video...I have watched it before, but I'm re-watching. I have just become an ambulatry wheelchair user after years of struggling as my condition is getting worse!! I use a rollator and I have been struggling for a while!! Finding your channel has helped me so much, and I named my powerchair Virginia Woolf....I had my first major outing on Saturday, I got to race my daughter for the first time, as I used my new powerchair and it was wonderful!! I know I may come across rude/abelist people, but I felt great!! I don't know why I didn't do this years ago!!!
Hi Gem, I've been avidly watching your videos since March 2023 when I started my wheelchair journey. You have been a tremendous support for so many people. I'm very grateful for all the hours you've put in to create contact for those of us who have benefitted from your wisdom. From my limited experience so far it has been very important to me to hold on to as much independence as I can and only ask for help when it is for something that I can't do for myself. This helps me feel less like a burden. For hobbies, I am a keen piano player, knitter, crocheter and I also enjoy sewing and dressmaking. There are often groups for these as well which can help your social life. Thank you.
thanks so much for shareing
I would recommend working hard to resist and push back against the "burden" narrative which comes from people who do not have disabilities. Yes, the things that come with disability can be burdensome (often because society puts barriers in our way including ableist attitudes) but YOU are NOT A BURDEN! You are a whole person with the same rights to take up space and have your needs met as anyone else on this planet!
Hi thanks for the tips, I have watched all y our videos. I became a wheelchair user 5 years ago after falling and breaking multiple vertebrae in my spine, after 3 surgeries and 2 sets of rods I now have a different life. I was a dirt bike rider, and home repair whiz, but now I am on the sidelines on 4 wheels rather than 2. I didn't have anyone help me adapt to life on wheels but figured things out on my own. One thing I have as a little tip is if you find your counters a little bit too high to do things comfortably like I have I found that a cutting board placed over an open drawer brings things down just enough for me to do things, and my chair rolls under the open drawer so I can sit and cut things up comfortably when cooking. Also an adjustable bed is a fantastic option if you can get one. Mine helps me to sit up when I wake up in pain. Please be careful to mind yourself for pressure sores, I went to bed and woke up the next morning with a huge blister on the side of my heel and that was just from one night of sleep, so now I sleep with a pillow between my knees to my feet. Also think of your wheels as your wings. I bought a motor for the front of one of my wheelchairs and my "scootie" takes me on all sorts of adventures. I can walk a bit with assistance but the pain and risk of fall is too great so I use my wheelchair as much as possible. Try to get a chair that is fitted to you as well, I was miserable with the standard off the shelf chair and it was so heavy so after a year of fighting I got a custom fitted wheelchair and it has made life so much better, and apply for every benefit you can being disabled is expensive. If you are newly disabled yes life will be different, but that's ok, it may take awhile but you will find your groove and find new adventures. Good Luck to all.
I'm so glad that you mentioned hobbies- they have helped me so so much. When I first got hurt, i was so sad- i loved hockey, archery, and badminton! learning about adaptive sports and participating in them has helped me feel a little bit of normalcy, and i can finally enjoy hockey (which i couldn't watch for a whole season because it just made me sad) but now i can do hockey again and watch the penguins, the coyotes, and enjoy what i love again. Thank you so so much, Gem.
I’ve been following you for quite some time now s have learned so much, BUT you have no idea how much I needed this very video in this very time in my life. As my health has been quite bad, in addition with progress of my conditions, I’ve been heavily struggling. This actually helped keep me inspired to keep going and I will learn and be okay with how my life as a disabled person may change!
I’m so sorry to hear you have been struggling. Sending you lots of love and support. Glad this video has helped you. 🙏🏼
@@Wheelsnoheels Thank You!
Those transition periods are always the hardest. Sending you lots of nice thoughts on your journey 😊
@@kaitlyn__L Thank you that means a lot!
As well as talking to a psychologist I have found writing in a journal very helpful.
Hey Gem, you are so right about finding others who are wheelchair uses. I play wheelchair rugby and it's so much fun as I feel part of a team and just feel "normal" (I HATE that word).
I want to get an E-trike! I can't Walk very far. This would give me the freedom go places
Part 2 would be good and information about face2face wheelchair skills training
Ok good to know.
My tip for dealing with heavily-cambered pavements is to zig-zag on them. (Shallow and long, not sharp and short ones. Exact angle depends on camber.)
Sometimes the total distance pushed can be increased by 10-30%, but it at least lets you push evenly with both arms rather than over-using one side. So at least for me that increases my stamina vs pushing “straight” with one arm. The only downside is confusing people who want to get out my way 😅
Love the “reading glasses” analogy for ambulatory wheelchair use.
A part two would be awesome!! I have only been in a wheelchair for almost a year and still feel lost in my feelings.
I just switched from a cane to forearm crutches yesterday. The cane was making my spine crooked and causing more pain than I could tolerate anymore (10 years of constant pain from untreated degenerative nerve damage). The pain is still there but I'm able to finally stand straighter and relieve some of the pressure when I'm standing still. However, because it's degenerative, I'm also going to get a wheelchair for longer distances and going out. But, with the forearm crutches, I was able to go shopping at a store and more or less keep up with my family.
The pain was worth it because, for the first time, none of them suggested cutting the trip short or, even worse, telling me to go sit on the bench at the front of the store to wait for them. I'm only in my 30s and this always hurts my feelings since I used to be extremely active.
Now I'm crying because, even though I can't go as far or as fast as I'd like, I'm not being excluded or viewed as a hindrance.
When I get a wheelchair, I'm gonna leave them in the dust just for a laugh. 😂
Yay! A new video! OMG, I'm the first comment! Thank you for the video, so glad for your tips! Your hair is beautiful!
Yay! Hope you enjoy it. Let me know your tips for newly disabled people 🤍
@@WheelsnoheelsMostly, don't be embarrassed, get out and enjoy everything you can. We will all be glad to see you out!
That is a good tip@@sharonobryan9713
Thank you! I began to need my wheelchair in my very late 40s, I'm now 60. I too was told, by someone dear to me, "it's like you're giving up." I still try hard to use a walker inside my house all the time, but I was getting so scared because at work I had trouble just getting to and from the restroom. I fell a few times, and it was humiliating.
2:31 - even the husbands of UA-cam creators arent imperious to the dreaded "UA-cam hole!" 😂 made me laugh already ❤
I go to this one department store that is fairly accessible as they have the largest assortment of handbags in the area. As I'm only there for a new bag, I'm there maybe every 5 or 6 years. What I hadn't realized, since my last pre-Covid visit, they had built up this huge makeup-perfume "shop" area between the 2 main entrances to the store. It had some of those auto scent spritzer gizmos going whenever anyone walked by, which of course everyone had to do to get in the store. Among my many problems is COPD and as soon as I hit that mix of scents, I started gaging, gasping, and felt like being sick. Even though I'm not supposed to be wheeled about when sitting on my walker, I had to get my hubby to help me get out of there - fast - as I was afraid, I'd pass out! I've never run into this before and am not sure what our US ADA rules have to say about breathing issues. Ideas on who to talk to?
Allergies, and gardenia perfume can be migraine trigger. Hate those sections. I even sneeze in the laundry aisles in supermarkets.
maybe contact your local council and explain the problem
You are our wheelchair auntie!
Oh Gem.. great video. I never knew you even dyed your hair! The best treatment for your hair is to leave it alone and use only shampoo and conditioner. Do what is best for you of course.
Some people can wheel much further than they could walk that’s why they started using a wheelchair as walking can become difficult or impossible.
I love music also and played the flute. How did you work the foot pedals on the piano?
Many thanks xx
Thanks so much for this video. I have been using a wheelchair since 2022. The advice about ambulatory wheelchairs is soooo good, the chair changed my life and got rid of so much pain! I look at people struggling on sticks now - as I used to - and wonder why. My life has really taken off since getting my first active chair - it has been liberating. One piece of advice I would like … I have folding handles on my chair. My adult stepdaughter likes to push me the minute it gets tough. I know she’s trying to be kind, but I like the independence of the chair and I find being pushed very infantilising (I’m 58). And frankly, I’m faster than her walking!! How do you I get her to stop? However many times I say “I’m ok, I can do it myself” she pops out those handles and starts to push me. Any advice??
Are you able to take the push handle of completely? thats what I do sometimes and keep them in my Bag on the back.
i think i would just be firm but nice and maybe say that i need to stay fit and strong, but yeh if your handles come off thats a great solution
Unfortunately you have to be firm even if they think you are making things harder for your self.
I still have this problem now some times.my parents would say why push your self when someone can do it for you.?
The thing they don’t realise is it’s like they are taking your independence a way and they don’t understand that.
I even got my handles changed from push handle to adjustable ones as they did nothing but moan that the fold down ones are stupid idea and to low as they insisted on pushing me as they said it was just until I get knew to my Wheelchair but I was never going get knew to it was I? If they pushed me all the time.
Now I have two lots of handles on my wheelchair which I hate the look of and they insist that the adjustable handles are up all the time just in case I need pushing.
And when I was Christmas shopping my Dad said no need to push your self I’ll do it. BUT I SAID NO I have had to put my foot down even though I know they think I am making a big fuss over nothing.
My saying is you might understand someone’s situation 99% But it’s that 1% that you don’t understand that makes all the difference unless you have been in there situation your self. Sorry for boring you.
Nice video! Would be interested in your tips for dealing with medical gaslighting and ableist/disabilist attitudes in doctors and other health professionals.
Interesting topic since the 'medical model' is at odds with the 'social model' of disability.
So glad you got to get your hair done at a decent place after your previous problems
me too thankyou
Nice cut, I’m in a wheelchair and I’m bald right now. It make me feel free
Thanks, you’re wonderful!
As a T7 Asia D incomplete. I use a wheelchair for longer distances. Your channel is great and, informative 👍👍👍👍👍
Thank you. I’m glad it’s helped
Hello gem. I've been watching your vids, love the positivity! I am not a full time wheelchair user,but I use mine more and more. Crutches for short distance ,wheelchair for longer distance and days of sitting it's my own comfy chair. Recently I bought a handcycle that attaches to my chair- I can go super fast! It has a motor too. Anyone don't be afraid to try another device, ask others about their chairs. With time on my hands I go to the gym i,swim and sauna. Most leisure centres will accommodate your needs and offer substantial discount for membership.
great advice ,thanks for shareing
Now that I have my chair, I need to rewatch your wheelie video. My PT has been trying to work with me on it, but I don't quite have the strength and control yet. I appreciate this video for the mindset and ideas, but I'd love videos on how to do daily things in a wheelchair. I like just seeing you functioning and moving around doing normal things (I remember a housework video and a going to the shops video) as it helps me figure out how to move about the world in my chair. Thank you!
i love making videos like that ,thanks for sharing
Love these tips! 🎉
i’m someone who wants to get one but i don’t think i can. this is helpful tho in case i ever do
For those who can use your legs more or less. Don’t think using a wheelchair as a downgrade or a step back. What I’ve understood from people with incomplete back injuries or amputees, using a wheelchair can actually save the body and help you keep walking in the future. Many with an injury can’t walk ”correctly” which can make the body, back, hips etc worn out much faster if you don’t relieve the body now and then. And a wheelchair can at times actually be a faster way to get around. Don’t forget your upper body work out though!
I’ve been preaching this for a long time. Don’t think of it as a last resort or a failure, but as a way to retain whatever mobility remains!
I’ve seen other people with my condition end up severing their spine due to the dislocations, and they all told me they’d wished they’d started using a wheelchair at the kind of age where I did.
@@kaitlyn__L So true!
these are all great comments and very true
Is this a different hair dresser than the one you mentioned before that gave you a hard time about getting the color right? I thought you had said that one didn't have an accessible bathroom. One time when I had a sore back, I told the hairdresser that my back was sore and tight and I wasn't sure if I could tilt back into the hairwash, she put more towels on my shoulders and used a spraybottle to wash my hair at the haircutting station instead of going to the sink, it look longer but it was gentle on my back.
Ahh thats good to know. This is a completely different salon to the one I spoke about last year. The were so horrible to me, I'd never go back. So glad I have found this new one, and they are so much nicer.
Thank You for this video Gem. We are all in this together. And you are so right, when we feel as if we are to blame, because of our disability, we are not the one's in the wrong. The world has an inability to do more. BUT WE WILL NOT LET THEM FORGET!
You are not alone folks, don't ever forget. Please don't ever lose hope. There has been times I've been so low on confidence and isolated that I've wanted to yell out to the world and say....well I won't say what I'm thinking!
I am incomplete L2-L5 paraplegic.
Funny observation…. When you spoke of being more worn out or tired than “walking people” after going long distances, I tend to “out roll” my family friends.. ha! They comment on how their legs hurt and are tired, while I’m still full of energy and legs don’t hurt. 😂 Also, talking about being aware of other people walking in your way. How many times have you been rolling and your husband or kids are walking right behind you and then you suddenly stop for whatever reason and they bump into you.. and then they get huffy with for stopping. Funny!!😎
I am so glad I found your channel. I started to use a wheelchair 1.5 years ago because I fall all the time due to a nerve-damage in my knees after Covid19. I found it incredibly difficult for my family when I started to use it. Especially my mom didn't want to realise that this is my new normal. The wheelchair gives me the freedom to go outside (which wasn't possible without) and I am glad it exists. My family hates it, because to them it is a symbol of me being different than before.
I have one question for those who have been using a wheelchair for a long time: is it frowned upon when someone pushes my wheelchair for me? I also have CFS and I'm too weak to push myself for more than a few minutes. My husband takes over when my energy runs out. My wheelchair isn't one of the active ones, it's a standard model. Yesterday we were in a shopping centre, my husband pushed my wheelchair and when we passed a woman in an (active) wheelchair she looked at me and then turned to her friend saying "don't you dare push my wheelchair, ever"
I felt like I did something wrong, but maybe it's just me being extra-sensitive.
No, that woman was out of line! How dare SHE criticize you?! Everyone's journey is different. Don't you go feeling like you did something wrong. That woman is probably a jerk in life.
I would like to See...MORE! Family Videos, Involving, Sean in front of the camera.
I’m disabled this year, half year in a wheelchair.. today say someone I have lots of pain in my back, I’m scared to come in a wheelchair… I thought the same always, but live is not over it’s different and of course I mis to stand up and do what I want instead to think ten times how to reach the other side of the street, what is the weather that’s al so different, but I had my home almost wheelchair proof, I’m 46 I go married this year, I’m happy, after a very vey hard year… but live in wheelchair is oké it’s not the end, today in the gym for the first times a compliment again as bodybuilder.. no live is ok..
Using a wheelchair might even help with their back pain and let them retain whatever leg mobility they have left! I knew my back pain was bad, but had no idea _just how bad_ until it mostly went away with a wheelchair.
@@kaitlyn__L true I Ben paralysed because 1 of my hernia ‘s had cut my spine cord t9, I’m for almost 20 year back patient ((child illnesses lumbar scheuerman) this make my back totally painful, and 1,5 year ago I felt down (no more feelings in my legs for one hour) next day mri, diagnosed 4 lumbar between vertebrae gone, kyphosis,scoliosis, stenosis, stil lumbar scheuermann and 7 hernias, I walked almost a year with stick and hoped the pain wil gone, (I lived in a apartment and a felt 7 times down from the stairs, Holland is a country of lots bureaucracy) but the pain keeps going on, new mri march last year, everting the same but my blader, bowling, left leg didn’t anymore what I wil, so my therapist say you have live in a wheelchair you make your back more worse to walk long distances, but now I’m incomplete spine injury ( I wish that I 5 years earlier take a wheelchair for longer distance, exactly what you say but proud and thinking you have only a wheelchair when you paralysed) but my live is better now than the last years before, only lots of medicines that’s what I hate, but whiteout I have so much pain in my back, yeah and nerve pain there is no medicine for that’s hel, but that’s so little bit less since a sit in my wheelchair and I stil waiting for my own chair made on my size and body, I hope it wil be better and better. Thanks for your answer and hope you can read my style of writing as Dutch guy 😉…
congrats on marriage ,keep going
Thank you!
LOL my piano teacher told me to take off my glasses because they were making my eyes lazy and I just needed to try harder to see. My parents even listened to her! I have a whole astigmatism and EDS which affects my eyes. *EYE ROLL* Love this video :)
I'm sorry that happened to you. Trying to see without your glasses, when they are needed has been proven to sometimes worsen eyesight. Not to mention the squint wrinkles!
Whaaaat!!! Omg 😦
Trying to see without my glasses can give you eyestrain and headaches
I can't believe people still say that! Maybe discuss this next time you see ophthalmologist or optometrist. Fellow zebra. Especially important as you age to get at least yearly eye check as we are prone to serious issues like glaucoma and macular degeneration as well as migraine. I found 600mg X2 of salt tablets help with migraine due to POTS
From which medical school did that teacher graduate?
Sean is one of the best husbands!
Hello Gem one of your viewers, where I am in the middle of the U.S it also has snow and is freezing cold. Also that you have beautiful blonde hair. Also the types of exercise that I do as myself as a able body person is to go out for a walk and also some of the things I do to handle stress is writing in a journal or draw a few times and also for advice as yourself as a wheelchair user for long distance can get a smart drive or any other device that is similar also would even like to see more videos at a mall/shopping center and also on a wheelchair accessible trail at a park when the weather warms up.
Thanks so much for your comment. Oh yes Journeling and be so helpful for some people. Fab tip. I'd love to try a smart dive. Im hoping I can some time this year.
I start swimming PT soon! I'm an ambulatory power chair user
Such good exercise. For me it’s the palaver of getting changed. Especially in the cold weather. Are you in a cold country too?
@@Wheelsnoheels I'm in Nashville TN in the states. Typically not too cold but it's going to be cold this week! The pool is fortunately a heated pool 😎
Im a new wheelchair user: my school is not wheelchair accessible and the teachers say they're not trained to push me in my chair! 🤔🙄😓
Education department, local councillor, media, discrimination lawyer via legal aid
thats terrible ,im so sorry to hear that
I'm not in a wheelchair... yet. However, I keep falling in my apartment, and Type 2 diabetes is causing horrific neuropathy. My left leg is nearly useless, and my right foot drops all the time and also causes me to fall. I have Scoliosis and arthritis and my neurologist isn't sure what exactly is wrong with me. She's the one who finally said it might be time to get a wheelchair. She tried to have me start physical therapy to strengthen my legs... but I fall down almost weekly! Sigh. If I get a wheelchair, I'm going to have to find an A.D.A. apartment because the one I'm in now is most definitely NOT accessible for the handicapped. Ugh! The worst thing I hear when I do manage to go out in public? "Well, if you had managed your diabetes better, you wouldn't be in this mess!" Gee, thanks. And it's not conclusive that the diabetes is solely responsible for my leg paralysis. Spine problems are contributing to my inability to walk. 😢
Anyway, I'm so glad I found your channel! I'm a semi-professional Abstract Acrylic painter and hope to get back to painting much more.
Some people wear glasses for other reasons and perceptual problems still valid and important
indeed
Tell Shaun I like his Viking hat it’s Icelandic 🇮🇸 and cool 👌 It’s -5°C in 🇮🇸 (23F) heated blanket coming in handy!
Shaun will love that hahaha
I don't know if its relevant for part 2 (or maybe part 3) but one question people have asked me (I'm not a wheelchair user but that doesn't stop the questions being asked) is how to do dating/relationship/marriage/that sort of thing/LGBTQIA+ when in a wheelchair.
Granted I don't have answers for these questions but I guess from people asking me if they'll ever find a husband now they're in a wheelchair or if I know any disability friendly dating venues, people probably would like to know how to find that special someone while using a wheelchair.
Gem your hair looks great, I’m like Shaun I don’t have any problems with sorting out my hair 👨🏻🦽❤️, I’m going to my local gym this evening and tomorrow I’m going to a dance class for people with ms 👨🏻🦽🎼
Hi how do I attach your suitcase to the back of your wheelchair when you travel?
I did the wrong thing as I had no local support.
I just worked and tried to work as usual.
But my work was very supported me a lot,
But before the wheelchair (powered chair), I could normally only cope with 1 or 2 days a week before going off sick for a few days; after moving to the wheelchair, I did not have a day off sick in almost 18 months.
Access to work was very useful, and I was already using them before I was in a wheelchair; once I had an NHS wheelchair, it made the paperwork a lot easier.
If you are working especially for a small firm, talk to HR and site management, as they can get support from the government.
Also, DLA/PIP was a lot easier once I had an NHS wheelchair.
the problem is how to get the NHS wheelchair; you need to talk to the GP, and the hospital normally can not get you into wheelchair services.
I do know people get the default wheelchair from the NHS and then get a good wheelchair of their own if they have the money (my private chair was over £8K but this money came from when I was lied off and just rolled into another job) because it is useful with the DWP to get help, as they use that as proof you have problems.
Getting an NHS wheelchair was a game changer for PIP. They still tried to tell me I didn’t “really” need it to complete daily tasks, but having the prescription on file made the appeal successful!
I had a disability all my life, only a very few knew of it. I have spina bifida I have been able to walk most with the use of mobility aids. But now I can no longer walk with any aids I have been in Rehabilitation WOrking on my core strength and thinking they were getting me ready for a wheelchair. I found out a few days ago I will be in a Power Chair, not sure how I fit in now. It's still a new world and a bit scary. I know people will be looking at me. I plan on staying as active as I can still be. Stare at me I will stare back
Don’t you have a say in the matter? I don’t know the severity from your spina bifida but I know a lot of people with it who has a regular manual wheelchair. Seems drastic to go from walking to a power wheelchair though. Whatever the future brings I wish you strength and happines, never stop fighting!
@@thetoothfairy7688 I think I do. But after re-reading I did leave something out. SORRY about that. I think the reason is I am having a lot of trouble with my left arm I have it visible smaller now. I had trouble pushing myself in a chair. I thought it was just a bad chair(could not be me) I am hard-headed and think I can do anything till They prove to me I can't and that is what they have done. I will get used to this chair. It's just so big.
@@cpr58 Ah, well hopefully they do the best for you. :) A girl I knew(well I was her camp leader) who only had one arm and other problems. She had a manual chair with double hand rims on one side so she could drive and turn it with only one hand. Maybe not something that will work outside for you but if you can’t walk any longer in your home either that could be a choice for you. Maybe a ordinary manual chair would work for you at home too. Though I guess it has to do with money too depending on where you live. The thing I wanted to get to is that if possible it could be a good thing to have both a manual and a powered wheelchair depending on the situation. A manual chair can be better size wise inside a house/apartement and the powered wheelchair when you go out.
The not having the energy to go as far is solved with a Freewheel
Ah nice. I’ve not tried ine
I used a wheelchair for my broken foot 6 months ago. And as I'm 73 . I wonder if i should use a small wheeled chair for doing housework in my apartment inside only? Any ideas please?
if you feel better and safer, why not?
Advice for the newly disabled...oh yes... stop parking on the sidewalk!. :-) Also don't block the sidewalk in any other way, maybe you call it pavement where you are but the message is clear! If you use a public restroom and they are using the accessible stall for storing junk, say something about it to the manager this time that you notice it again. You seen it happen before, if but in an other place, but this time around.. hey, you can choose to do something about it. :-) Unless you are somewhere where they have a key that only people with disabilities would have, like in the UK, don't tell me you have not noticed an accessible stall was used for storage. The only other thing I could think of is I guess if your part of the world doesn't have anything accessible in general.
An accessible toilet needs to be more than a toilet stall with handrails and a little longer. They need to be big enough so a wheelchair user can turn their wheelchair to the side to transfer or for a carer to lift and maneuver the person on to the toilet.
❤
Was that quick show pic you as a kid??.
Yes 🙈
Betterhelp is not a good therapy option. They're highly controversial
Ooooo ok thanks for letting me know.
I've been following your channel for a little while now and enjoy the content and take in things that maybe I hadn't thought about before, and it's been great! Until you said 'betterhelp' is good. It is not, it's shady and claims to follow HIPPA when they actually don't. Privacy practices are very sketchy and please, do research and look at the good and the bad about something before promoting it in any way, shape, or form.
+Wheelsnoheels *That model wheelchair has plenty o' lateral clearance for fortepianos, harpsichords, celestae, Glockenſpiele, &c.* Sad that the organ, spec. the pedalboard, is inaccessible.
A tip I would give to new wheelchair users is to subscribe to this channel. 😉👍
Hi Gem. I love horse videos; do you like them and have a favorite channel? My favorite horse channel is StableHorseTraining. 🐎
🙂✌
Life as a new 🆕 wheelchair 🦽 user is getting to use to😮😮😮😮❤❤❤❤❤❤ 11:55