I'm so glad I found this video. I'm 20 and having to seriously look into getting a walking stick due to chronic hip pain/ everything pain/ fatigue (to the point where a 5 minute walk is really bad) I feel so betrayed my the body and seeing people with similar issues to me and managing and thriving makes me feel so much more hopeful
I'm so glad you found this too Ellen, glad you found it helpful! I was 20 when I started using a stick too, I'm now 25. If you want to chat to more people head to my social media or support group there's a brilliant community here to support where we can. Spoons & Love x
I suffer from fibromyalgia and my mobility isn't that great. I own a folding cane, offset cane and a quad cane. I also have a Medline rollator. Selecting a cane took some trial and error, so an offset handle reduces the chance of my hand going numb. I usually use my cane for short distances and around the house, but I use the walker when I'm very unstable or for long distances. My mobility aids increase my quality of life, even though I'm in my 20s.
What a great idea to cover your walker in stickers! I have a walker because I also struggle with POTS and severe pain from endometriosis, but I have trouble bringing it out some days, so I am 100% going to try covering it in all my favorite things. Thank you so much!
I really needed this right now. I'm currently seriously considering a mobility aid for the first time and trying to build up the courage to speak to my medical team about it.
I'm 14 and I just got a walking stick because I have POTS, Fibromyalgia, and I'm working another diagnosis. It really does help me with balance and pain. Yes it's kind of embarrassing when I use it in public since most ppl think of it as an old people thing (of course it's not) but I think that is you genuinely think it will help you then it doesn't matter what others think. Also if you are to scared to talk to a medical team just don't. You don't need a prescription to get one (I ordered mine from Amazon) and they don't know how you feel.
I have loose ligament syndrome (and only just learned EDS runs in the family so I'll have to look into that) and had come to the realization that I needed a cane- it came as a real shock as I was told to expect it in my late 20s or early 30s and I'm only 18. Finding a cute cane really helped me come to terms with it, and it'll be arriving in three days!! Thank you so much for your videos
I'm also 18 and looking for a mobility aid. I'm glad you found a way to come to terms with needing one. My only issue is the people around me think my body is more capable than it is.
@@AHHHHHH107 same here, I'm told to try and use it as little as possible so that I don't get weaker but really I should be using it more so I can delay knee replacement down the line
@@nunyabusiness6450 right. My physical therapist doesn't want me using knee braces so I can build the strength in my knees but at the same time I want to go out with friends but I can't walk that much and he doesn't want me walking to much either. I want crutches or something for long distances so I'm not wasting my life away at home. Being a homebody is perfectly fine but that's just not me. Before I knew my legs were in bad condition I used to try and walk 25km+ a week. Now I try to avoid walking as much as possible. (Long distances outside of home). I still walk enough to not lose more strength.
You’re really looking good today!! What ever you are doing for your mood is working. Like the tank top on ya too. Glad to see you showing your aids and explaining them to everybody as well. Thanks again for making the EDS community look good and for your education of non-zebras. Keep up the good work and the fantastic attitude!!!! You look like a model as you are showing your wares off.
i am in a situation where my KTS has been getting much worse, i started using one crutch a year ago, then 2. on some days thats not even enough. i am looking into other mobility aids for my self now, specifically a wheelchair for days when pain is particularly bad or i need to go longer distances. thankyou for making this video, it really helps to see other young people talk about this sort of thing.
This is awesome. Thank you for sharing! I broke my tibia and fibula on my right leg last June and I have insane swelling while standing or walking for more than 10-30 mins. I just got a foldable cane and get a ton of looks and questions which is nerve racking. Videos like this normalize it more and I LOVE it.
So glad this video helped! There's so many lovely people I follow on Instagram who rock a cane if you want to normalise it even more. Really hope your symptoms calm down that doesn't sound fun x
I’m so envious of your stick collection! 😍 I just bought myself a second hand Walker and have been looking into wheelchairs and scooters for my EDS as at the moment I tend to borrow the store wheelchairs in supermarkets and large stores xx
I love your mobility aids! I have two wheelchairs, one off road, tough “Duggie the buggy” (bright green, and I was rocking a bright pink full leg calliper at the time!) with a freewheel attachment, and one a lightweight more delicate looking one (sparkly grey with metallic light blue trimmings). My original wheelchair was from wheelchair services and was called “Pam the pram” and was really heavy and big, but I used her for over a year while I saved up the money for a new one. I’ve got a smartdrive but it stopped working after a couple of months and took over seven months to get repaired. I use a pulpit frame, “Stan” (and a calliper) to stand or walk and would love to get off it onto a Zimmer frame/walker but I don’t have the balance (or joints!) for one yet. I would love to know if anyone has used one of the scooter walking aids where you rest a leg on and walk with the other leg?
Thank you! I love the name Duggie the Buggy! Yours sound amazing! Hahah Pam the Pram!! Thats awful about the smartdrive Ive heard theyre really good! I've not used a scooter one but I do often put one knee on my walker and push myself along with the other foot haha!
Thank you Jenni! I am like you too. It is great on days to have use of my cane/walking stick(Those neo sticks are cool too). Also having the wheelchair & walker for the longer trips are also handy.
This was such a helpful video, thanks Jenni! You've confirmed my thinking about needing the main part of a walking stick to be in line with my arm to best distribute weight. I always loving the look of your Neowalks! Xx
This is amazing! Thank you for putting this content out! My 5 year old daughter uses a walker named tiny deadbolt (after my Jeep Wrangler). We decked it out with a bunch of stickers of her favorite things as well and I couldn’t agree more with you. Thanks again!
I love my laser lemon light up stick from NeoWalk. I have the question mark handle as I'm hypermobile as well - really really helps. I have switch sticks from years ago too :) The one that comes apart into pieces - that is AMAZING! I really need a rainbow combo!! I have pimped my powerchair for a long time, but need to do my new (2nd hand) one still. Great to find your channel.
This is helping me a ton..Thank You. I have arthitis in my knees..I jave good days and not so good days. People ask me if I'm faking.. I say "of course why else would I want to sport a cain or use a wheelchair" (sarcastically). It's that whole "You can't see my pain" conversation. If I'm using aids it's because I'm experiencing pain and I'm know to have a high pain tolerance..
Greetings from Oklahoma, USA! Just discovered your videos. I have a spina bifida deflect with tethered cord syndrome. I use a power wheelchair if I get out and about and an upright walker inside the house. I love your wild walking sticks. I am much older than you, but decided that if I had to use mobility aids , I would try to make them as fun as possible! So kudos to you for giving me some new ideas! I totally get your explanation of why we need different aids at different times. I can “walk” without them a bit, but it is very awkward and painful. All the best to you.
I still need two hip replacements and my pain levels are to the point that I generally don’t do more than 3,000 steps a day. Now I’m headed to Spain for a wedding and I’m a wreck thinking about the need to walk. It’s not California where we drive everywhere. I sometimes use a cane but I think I’m going to try out a walker.
Good evening I also use a walker for mobility cause of the diabetes has effected my legs and feet . At time I use my Caine . Sometimes I have them together outside now what helps me at not loosing either one is I recently installed Caine mounts on my walker they bolt on one side . One mount toward the top the other toward the bottom. Than I put my Caine on into the other side of the mount than slide the small lever threw the hole than flip the bar in the up or closed or locked position. I paid cash so I don’t want to loose anything. Now I got the Caine mounts from Amazon for $ 15.00 dollars cash USA . Just trying to be helpful
Thanks for inspiration. I use a walking stick when walking on not flat terrain- so mostly everywhere in Switzerland 🏔⛰️. But my muscle weakness got worse, pain got better since reducing my opioid medication. which is a relief. But there are more and more days I might need a wheelchair. I dont drive- high Myopia, opioid,, seizure- so I rely on public transport, which is great here, but somedays just walking home from the train station has become too much.
have you tried a rollator? it made a world of difference me before i got a wheelchair- being able to sit and rest anywhere plus not putting your weight on a single wrist is great
Hi Ellen. Thank you so much for your positive vibes. I was diagnosed with 3 autoimmune diseases last year. I am now starting my journey with mobility aids. I have just invested in good quality crutches for in and around the house, but they are plain black, kind of depressing. You just gave me the idea to jazz them up a bit. If they are going to be a part of my life, I am going to make them cool. I was having a really hard day when I found this video. Thanks for cheering me up. Much love from South Africa.❤
Thank you! I am 37 and have PPMS. I rely on my aides and have a hard time explaining why I sometimes need a transport chair, most times a walker, and other times a cane. Thank you!
Thank you for submitting this wonderful video I am 60 years old and just recently in June cut the ligaments in the back of my left leg unfortunately the stitches didn't hold too good I didn't get the surgery and I'm well I'm still walking around a little bit I spent 30 years helping my brother and my sister-in-law who were paraplegics and a friend of mine overseas she was just recently in a wreck and I sent this video to her to inspire her you're cheerful attitude it does not hide the years of pain and suffering that you went through I've lived most my life with pain as well many broken joints and things but what don't kill us makes us stronger that is true I wish you the very best I couldn't understand what Walker it is you're hoping for but I'm sure it will come your way very soon we sometimes don't get the choices in life we want sometimes those little things in life that hurt us or what bring out the very best in the strengths in us to shine through for others who might be a little afraid of change Godspeed little lady
I use my cane for mostly getting around, or I use my Rollator. If I am at church I borrow the one that is there. I usually lean on the shopping cart 🛒 when I go to the grocery store.
That was great, Jenni! I’m anxiously awaiting the arrival of my replacement walking chair from the NHS as mine is definitely suffering the effects of aging after 7 years xxxxxxxxx
lol my walker is named Steve, the senior who passed it down to me. I got an electric scooter cuz I too HATE being pushed in the manual chair too. The scooter it's great for long excursions, plus I'm a mom and my kiddo rides along w/ me.
I am glad i found this video. I have a learning disability and my leg pain is sometimes good and sometimes bad. i recently got a walking stick from amazon, told mum and she said who am i copying. when my leg pain is worse i tend to trip up more from walking all day and pain is hard.
I have a blue collapsible cane that I’ve used a couple times but I’m not a fan of it cuz of the pressure being on one shoulder it just makes my back pain worse. I love my walker. I use it anytime I’m walking a long distance and the seat is a lifesaver. I blinged mine but the adhesive is coming off so I think I’ll try duck tape or something cuz it’s this dark red that doesn’t match my style.
Definitely duck tape thats all mine is covered in just Zebra print duck tape and it's been out in all weathers for 3 years and Ive never had to redo it! x
OMG I want a rainbow cane! Neo-walk seems to o have canes that light up are bottom. I have a pink swirl Switch Sticks and a purple folding (unknown brand) from Amazon. Thanks for the handle style overview. I’ve only had T and derby style handles, but the extra curvy one now might make sense for me (especially if it’s cool and sparkly)
I have some Switchsticks in the same design as Sticky! I've also got a Switchstick seat which is useful if I know I'll need to queue but not great for actually walking with. I'm very excited as I've just ordered my very first Neo Walk!
I don't ave the proper stick with a seat but do often end up sitting/leaning on the handles of my sticks to kind of sit which i probably shouldnt do :P Hope youre loving your neowalks.
Thank you for this video. I was really impressed by your glasses explanation to peeps, and i may steal it :) . I also have an extremely variable condition and use electric wheelchair, mobility scooter, walker and canes and each allowed me to do so much more than before, plus like you i use all of them at diff times for diff reasons. People struggle with starting to use mobility aids, i may direct them to this video if they do.
I use forearm crutches and a wheelchair most of the time. I have canes/walking sticks, but sadly most days they aren’t helpful enough. I feel like a walker or rollator would be very helpful but I can’t get over having to use one. I don’t know why it scares me so much more than other aides! I also graduate in May and I really want to be able to walk across the stage instead of my chair (with a mobility aide so I don’t face plant 😂). I’m thinking a walker would be best as long as I can get my AFO by then.
❤ love your video,i liked your idea about dolling up your walker, maybe i ought to sparkle mine up a bit , although its heavy i could not do without one ,i am not so hot on canes but oust say i love your collection altogether ❤
So I'm 53,no illnesses I'm aware of no doctor yet lol.. Physically worked hard my whole life have had many broken bones injuries,yes I did some crazy shit too.. My right leg is apparently never going to stop hurting, as I do still work on my legs but have started using a cructh lately when i can to help.I only have two so far but am always looking now myself. I will have unique ones too lol, keep your head up!..
I had to get a mobility aid (cane) yesterday due to increased pain in my knee. I have always had chronic pain but last year, I fell in the winter time, which ended up fissuring my patellar cartilage (knee cap). Didn't get it checked until I screwed it up more after taking a job in a heavy lifting warehouse. Totally screwed everything up and the pain increased by so much... Much more than I was used to. I ended up changing how I walk because if I walked normally, I'd end up limping after a few minutes. It's been a cruddy journey. My partner and I talked about it and I got my cane like I said. It's helped with taking weight off my injured knee. I'm amazed at how much of a difference it made while grocery shopping yesterday! But I'm still "embarrassed" about using it. I'm afraid of the judgement. Watching a couple of your videos has helped tremendously in building a bit of confidence. I know I need help getting from place to place and I'll keep you in my mind if I start feeling "embarrassed" again. 😊 Cheers!!
I have dyspraxia and it effects my walking. I have two wheelchairs, a walker, normal crutches (I hate them), my collection of walking sticks/canes, and my favorites my forearm crutches because I can just put my elbow in them and hold something with my hand so lol
I'm curious if anyone has experience with using a walking stick vs a forearm crutch (the type that bends at the elbow to give more support) vs a walker. I have HSD, POTS, and ME/CFS and can get quite shaky and weak. I've tried a stick before but didn't find it very useful with my flimsy wrists. I was wondering if anyone had any advice. Thank you Jenni for making this video, I love the tuti fruit stick!
I'm lucky my wrists have been pretty good but I definitely do feel it more nowadays. I do find my walker easier than my sticks on that front. Unfortunately I've not tried forearm crutches myself but if you want to drop me a note on Instagram I can probably connect you with some people who have who you can talk to about it x
I just saw your video today. Interesting! One suggestion about your Tutti Frutti cane: I wonder if they make a short 5 or 8 cm long section. That would solve your problem with heels, in that you could add a short section when you wear heels. It would be somewhat useful at home, but quite convenient when travelling.
I’m really thinking about getting a walking stick at the moment. I’ve had ME/CFS for nearly 6 years and I’ve never had any type of mobility aid though I definitely should have, I was always far to self conscious, and terrified about other people’s opinions and I dismissed them ALL. Now I’m more comfortable with myself and my illness I’m thinking about getting a stick, this video really helped, I’ve been looking at the neo-walk sticks, and they are definitely making me more comfortable with the idea, just because I think they’re so pretty compared to other walking sticks. I definitely agree that the standard curve is better looking, but I was wondering whether the question mark shape would be more comfortable, and now I’ve got my answer 😂 Thankyou for this video !! Super helpful!
Loved this video. My mobility is up and down. Some days I am walking around fine but somedays I need a little extra support BUT I don't have the confidence to use aids incase comments are made if I'm seen somedays with or somedays without, almost like I'm I'm fraud. I need to seriously overcome this!!! I also seriously need a Neowalk stick!!!! Lol
Great video! I have a cane too. I was afraid of using it in public at first but a lot of people are really nice about it. My cane doesn’t fold so I want to get another one that folds up but a lot of the fold up ones don’t adjust to the size I need. I found one but it is a quad and my husband doesn’t think it looks cool enough so I don’t know about it. Another one is a cane that can fold down to a seat but same thing it doesn’t look cool. I want it because I get dizzy and need to sit. Hope to find another good cane
The second, purple mermaid cane, that's exactly what I want to get as my second cane. I would like to have a foldable cane and keep it in my bag in case I forget my other cane. But I am worried about the handle. I am sure I can used to the shape of it as my other cane has a different offset shape for the handle. But it's the fact that it looks like the handle has no cushion on it. Just a straight hard wood handle. Has this ever bothered your wrists or anywhere up to your shoulders?
thank you for this video. I have lupus and fibromyalgia. Walking is so painful. I've given up so much pride and insecurity by using a wheelchair. I never thought about jazzing it up so it is more comfortable and less medical looking. this would give me the confidence to want to go out more. thank you so much. do you recommend certain kinds of wheelchairs?
I have Friedrich Ataxia it's neurological condition that in time to come I will have to use my wheelchair but I don't currently, I think a walker will very beneficial for me as walking can be a challenge
Hi Jenny ~ I'd never thought like this about sticks... yeah using the same old one every day must be like wearing the same shoes day in day out and we all know that us gals can't be having that!
Left some feedback for youtube about it not being relevant but an article about AIDS the disease was generated as "context" for this video as a heads up!
I’m 28 years of age and live in the UK. Can I just commend yourself and your viewers who use these waking aids. I have a chronic health condition and I am so embarrassed and conscientious when walking with my aid. More often than not I won’t use it in public because of people looking at me, which makes me suffer more. When I was using a wheelchair, I wouldn’t take it in public and I’d sit on a stool that I’d carry around with me. Very strange. Thanks for sharing :)
Hi. Any advice about the anxiety of using mobility aids in public when you appear "able bodied" and people often see you walking around. I just got my first wheelchair and I've just been crying so much and i am so anxious about using it on the days when arms are too gone to use my stick. Im just feel so embarrassed for some reason.
I think a wheelchair is very difficult compared to a stick as for some reason people start pretending like you aren't there or will only talk to the person pushing you instead of you so I definitely understand. But the main things I always say when it comes to mobility aids is you have to try and avoid thinking about what others are thinking and remember why you are using it and why it helps you. Its an aid at the end of the day its there to aid you! Also I know its hard especially when you don't feel it but confidence is so key the more confident and comfortable you are with your aid the more people will see that and they will notice you before the aid. hope this helps lots of love xx
@@ChronicallyJenni thankyou. Channels like yours have really been helpful in coming to terms with my disabilities. Its nice not to feel alone with them 😊
Thank you so much! I have not tried a 3 wheeled one but am I right in thinking most 3 wheeled ones dont have a seat which is one of the main reasons I use it? Mine will go in the car its just bulky x
Isn't it true that not everyone who has EDS suffers from joint dislocation? Don't some just have joint pain, migraines abdominal issues,etc Please answer if you are able. Thank you so much ❤
fighting currently to get referrals situated (first one got sent to wrong department and now my dr isn't answering calls smh) so i'm hoping to see a geneticist soon about possible hEDS or HSD i've been in increasing pain for months now about a year ago it first started getting worse, although i first complained about hip and knee pain when i was like 14 ish?? and today and yesterday have been so incredibly rough on my hips, walking causes me so much pain,,, i literally was like shuffle limping in target today it feels so so sudden, especially i worry about pushback from my parents, since i no longer live with them it will seem even more sudden for them and i'm scared about what they'll say (even though i know its just an aid, even though i know it will help me, even though i wouldn't want anyone else to feel this way about them... it just feels really sudden and i'm also autistic so even though the pain for me has been increasing it just idk it feels too fast) anyway i'm glad to have found this video it made me feel a bit excited to try one of those walking sticks, i love the multi color one at the end
@@thelegioncollective do you have an OT, unless it's worded correctly they won't do a thing and it takes time for the bureaucratic wheels to function, I hope you get what you need soon
kind of!! it helps relieve the pain while walking because it takes some pressure off it, but if you have sensitive wrists you might want to look into extra handle covers and compression gloves too
I am 27 years old and have been using my rollator since I was 21. I am having a hard time coping with anxiety and depression. My ex partner bullied me because he was ashamed and embarrassed to be seen with me. People in shops terrify me because they get close to me, I once had been pushed over by a person who wanted to get passed me in a shopping isle. I'm too afraid to go out on my own because people stare at me and make comments. People are embarrassed to be seen with me now especially if I'm having a bad day where I am not walking well at all. Shops are awful, staff keep blocking Isles so I can't get through. I used to work as dementia nurse and care worker but I could never go back to that job again, I tried hard to find another job people but people treat me differently, Purposely dropping things on the floor telling me to pick it up knowing full well I can't do it, being treated as dirt rather than being helped to be a equal staff member. Can you make a video to help boost confidence in young people with hidden disabilities. I use a mobility scooter when I want to walk the dog, a walker for going shopping, a walking stick for at home. I have several sticks at home because I keep forgetting it, so i have one in all rooms so I always have a stick near by. My rollator I bought second hand and is red. I hate red so I covered it in little wooden lady bugs and keyrings. I had to take the keyrings off because they are too heavy but I kept the lady bugs and red bows. I've never heard of neo sticks so I've just googled them and they look so amazing. I wish I knew of them before. But imagine if they made rollators and wheelchairs in that acrylic material. You could have a cherry bomb wheelchair to pair up with matching lipstick and shoes
I’m currently going through tests for POTS, they’re debating whether I have pots or a vestibular issue causing very bad vertigo but at the minute he said it’s looking like I could have both. I have struggled so much the past few years from missing out, me and my friends or family used to go on shopping trips together or other things. But now I can’t do it, after one shop or even less I can’t even walk any further. I really can’t think of anything else at this point other than mobility aids. I’m so great full that I’m seeing doctors but the only thing is it’s been going on for 5 years now and I’ve been waiting for these tests to finish for over a year. I feel like I’m never going to get my life back and I really don’t know what to do anymore. Should I try some kind of aid or shall I wait until I have answers from the professionals ? I’m so stuck :(
For things like days out and shopping trips etc most stores/malls/shopping centres (in the UK anyway) have wheelchairs and scooters which you can borrow for the day/afternoon which I found super helpful when I first had symptoms and then if these things help you can think abut getting an aid of your own. hope this helps x
I'm 19, I'm not diagnosed with anything yet because no insurance atm but I'm looking into a cane or something I'm not sure. I've had constant pain and soreness in most of my joints for a couple years now, and for some reason my family seem to think needing assistance shows you're weak but like sometimes it's so bad I can barely walk or I feel like my legs might give out it sucks
I am 28 and I have fibromyalgia, arthritis of my spine and SI joints, and pots my doctor recently prescribed me a walker with a seat on it I’m worried about being judged when I use it
I truly hope that "Lola" isn't inspired by the movie Lolita (Her makeup, her glasses, outfit and lollipop are the same color) where the 12- year old child was made to french kiss, touch his genitals (Deleted scene) and so on with an old man. I said this because keep in mind, some of you viewers are vulnerable. I had to do this comment just for myself too, since I got a massive PTSD attack from it.
![It's time to sit down... // Mobility Aids 1 [CC]](http://i.ytimg.com/vi/e77wkKOnC6s/mqdefault.jpg)
I'm so glad I found this video. I'm 20 and having to seriously look into getting a walking stick due to chronic hip pain/ everything pain/ fatigue (to the point where a 5 minute walk is really bad) I feel so betrayed my the body and seeing people with similar issues to me and managing and thriving makes me feel so much more hopeful
I'm so glad you found this too Ellen, glad you found it helpful! I was 20 when I started using a stick too, I'm now 25. If you want to chat to more people head to my social media or support group there's a brilliant community here to support where we can. Spoons & Love x
Fucking me too b. I'm so sorry
hello ellen. how are you doin today?
im 17 and my fybromylaga is makiening me try get a moblity aid to help me exis
I like your analogy using eyeglasses to explain ambulatory mobility aids. Thank you! My mobility fluctuates, too.
Thank you, I'm definitely going to try and do a video aimed at people without mobility issues using that analogy again soon!
I absolutely loved this video. Thank you for normalising mobility aids for younger people. And yours are so funky!!! I love them!!!
Thank you beautiful! you know how important it is to me to try and normalise them more!
How nice to name your mobility aid. At hospital, that thing with the drips on it, was Johnny walker, and the old wheelchair was Miss dinosaur.
I suffer from fibromyalgia and my mobility isn't that great. I own a folding cane, offset cane and a quad cane. I also have a Medline rollator. Selecting a cane took some trial and error, so an offset handle reduces the chance of my hand going numb. I usually use my cane for short distances and around the house, but I use the walker when I'm very unstable or for long distances. My mobility aids increase my quality of life, even though I'm in my 20s.
Exactly how I feel Luisa glad your aids help you x
What a great idea to cover your walker in stickers! I have a walker because I also struggle with POTS and severe pain from endometriosis, but I have trouble bringing it out some days, so I am 100% going to try covering it in all my favorite things. Thank you so much!
I really needed this right now. I'm currently seriously considering a mobility aid for the first time and trying to build up the courage to speak to my medical team about it.
Hope this has helped and hope you find the courage and they are helpful! Fingers Crossed for you! x
I'm 14 and I just got a walking stick because I have POTS, Fibromyalgia, and I'm working another diagnosis. It really does help me with balance and pain. Yes it's kind of embarrassing when I use it in public since most ppl think of it as an old people thing (of course it's not) but I think that is you genuinely think it will help you then it doesn't matter what others think. Also if you are to scared to talk to a medical team just don't. You don't need a prescription to get one (I ordered mine from Amazon) and they don't know how you feel.
@@theskyisonfire Do you find it helps you stand for longer or having something to lean on helps with POTS? Like you I also have fibro and other stuff.
@@LloydHandmade it helps for both. I like using it when my knees and things hurt and it helps me be able to stand and balance.
I have loose ligament syndrome (and only just learned EDS runs in the family so I'll have to look into that) and had come to the realization that I needed a cane- it came as a real shock as I was told to expect it in my late 20s or early 30s and I'm only 18. Finding a cute cane really helped me come to terms with it, and it'll be arriving in three days!! Thank you so much for your videos
I'm also 18 and looking for a mobility aid. I'm glad you found a way to come to terms with needing one. My only issue is the people around me think my body is more capable than it is.
@@AHHHHHH107 same here, I'm told to try and use it as little as possible so that I don't get weaker but really I should be using it more so I can delay knee replacement down the line
@@nunyabusiness6450 right. My physical therapist doesn't want me using knee braces so I can build the strength in my knees but at the same time I want to go out with friends but I can't walk that much and he doesn't want me walking to much either. I want crutches or something for long distances so I'm not wasting my life away at home. Being a homebody is perfectly fine but that's just not me. Before I knew my legs were in bad condition I used to try and walk 25km+ a week. Now I try to avoid walking as much as possible. (Long distances outside of home). I still walk enough to not lose more strength.
@@AHHHHHH107 I hope things get better for you
@@nunyabusiness6450 Thank you and the same for you
You’re really looking good today!! What ever you are doing for your mood is working. Like the tank top on ya too. Glad to see you showing your aids and explaining them to everybody as well. Thanks again for making the EDS community look good and for your education of non-zebras. Keep up the good work and the fantastic attitude!!!! You look like a model as you are showing your wares off.
Thank you Gordon, I don't think I felt it :P Aww Thank you so much for all your kind words as always! Hope youre doing okay!
i am in a situation where my KTS has been getting much worse, i started using one crutch a year ago, then 2. on some days thats not even enough. i am looking into other mobility aids for my self now, specifically a wheelchair for days when pain is particularly bad or i need to go longer distances. thankyou for making this video, it really helps to see other young people talk about this sort of thing.
This is awesome. Thank you for sharing! I broke my tibia and fibula on my right leg last June and I have insane swelling while standing or walking for more than 10-30 mins. I just got a foldable cane and get a ton of looks and questions which is nerve racking. Videos like this normalize it more and I LOVE it.
So glad this video helped! There's so many lovely people I follow on Instagram who rock a cane if you want to normalise it even more. Really hope your symptoms calm down that doesn't sound fun x
@@ChronicallyJenni I bought a cane from neowalk and I'm obsessed 🙂 thank you again for your posts
I’m so envious of your stick collection! 😍 I just bought myself a second hand Walker and have been looking into wheelchairs and scooters for my EDS as at the moment I tend to borrow the store wheelchairs in supermarkets and large stores xx
Borrowing them when they are available is a must! Hope you can get your own soon! Will you decorate your walker? I loved getting creative with mine! x
I love your mobility aids!
I have two wheelchairs, one off road, tough “Duggie the buggy” (bright green, and I was rocking a bright pink full leg calliper at the time!) with a freewheel attachment, and one a lightweight more delicate looking one (sparkly grey with metallic light blue trimmings).
My original wheelchair was from wheelchair services and was called “Pam the pram” and was really heavy and big, but I used her for over a year while I saved up the money for a new one.
I’ve got a smartdrive but it stopped working after a couple of months and took over seven months to get repaired.
I use a pulpit frame, “Stan” (and a calliper) to stand or walk and would love to get off it onto a Zimmer frame/walker but I don’t have the balance (or joints!) for one yet.
I would love to know if anyone has used one of the scooter walking aids where you rest a leg on and walk with the other leg?
Thank you! I love the name Duggie the Buggy! Yours sound amazing! Hahah Pam the Pram!! Thats awful about the smartdrive Ive heard theyre really good! I've not used a scooter one but I do often put one knee on my walker and push myself along with the other foot haha!
Thank you Jenni! I am like you too. It is great on days to have use of my cane/walking stick(Those neo sticks are cool too). Also having the wheelchair & walker for the longer trips are also handy.
This was such a helpful video, thanks Jenni! You've confirmed my thinking about needing the main part of a walking stick to be in line with my arm to best distribute weight. I always loving the look of your Neowalks! Xx
So glad you found ti helpful Tania! Let me know how you get on with finding something! x
Good to see you back!!!!
This is amazing! Thank you for putting this content out! My 5 year old daughter uses a walker named tiny deadbolt (after my Jeep Wrangler). We decked it out with a bunch of stickers of her favorite things as well and I couldn’t agree more with you. Thanks again!
Love love the neo walks sticks!! Would love to get one.
They've got a competition on on Instagram this week you should definitely enter! x
I love my laser lemon light up stick from NeoWalk. I have the question mark handle as I'm hypermobile as well - really really helps. I have switch sticks from years ago too :)
The one that comes apart into pieces - that is AMAZING! I really need a rainbow combo!!
I have pimped my powerchair for a long time, but need to do my new (2nd hand) one still. Great to find your channel.
This is helping me a ton..Thank You. I have arthitis in my knees..I jave good days and not so good days. People ask me if I'm faking.. I say "of course why else would I want to sport a cain or use a wheelchair" (sarcastically). It's that whole "You can't see my pain" conversation. If I'm using aids it's because I'm experiencing pain and I'm know to have a high pain tolerance..
Greetings from Oklahoma, USA! Just discovered your videos. I have a spina bifida deflect with tethered cord syndrome. I use a power wheelchair if I get out and about and an upright walker inside the house. I love your wild walking sticks. I am much older than you, but decided that if I had to use mobility aids , I would try to make them as fun as possible! So kudos to you for giving me some new ideas!
I totally get your explanation of why we need different aids at different times. I can “walk” without them a bit, but it is very awkward and painful.
All the best to you.
I still need two hip replacements and my pain levels are to the point that I generally don’t do more than 3,000 steps a day.
Now I’m headed to Spain for a wedding and I’m a wreck thinking about the need to walk. It’s not California where we drive everywhere. I sometimes use a cane but I think I’m going to try out a walker.
Good evening I also use a walker for mobility cause of the diabetes has effected my legs and feet . At time I use my Caine . Sometimes I have them together outside now what helps me at not loosing either one is I recently installed Caine mounts on my walker they bolt on one side . One mount toward the top the other toward the bottom. Than I put my Caine on into the other side of the mount than slide the small lever threw the hole than flip the bar in the up or closed or locked position. I paid cash so I don’t want to loose anything. Now I got the Caine mounts from Amazon for $ 15.00 dollars cash USA . Just trying to be helpful
Thanks for inspiration. I use a walking stick when walking on not flat terrain- so mostly everywhere in Switzerland 🏔⛰️. But my muscle weakness got worse, pain got better since reducing my opioid medication. which is a relief. But there are more and more days I might need a wheelchair. I dont drive- high Myopia, opioid,, seizure- so I rely on public transport, which is great here, but somedays just walking home from the train station has become too much.
have you tried a rollator? it made a world of difference me before i got a wheelchair- being able to sit and rest anywhere plus not putting your weight on a single wrist is great
Hi Ellen. Thank you so much for your positive vibes. I was diagnosed with 3 autoimmune diseases last year. I am now starting my journey with mobility aids. I have just invested in good quality crutches for in and around the house, but they are plain black, kind of depressing. You just gave me the idea to jazz them up a bit. If they are going to be a part of my life, I am going to make them cool. I was having a really hard day when I found this video. Thanks for cheering me up. Much love from South Africa.❤
Thank you! I am 37 and have PPMS. I rely on my aides and have a hard time explaining why I sometimes need a transport chair, most times a walker, and other times a cane. Thank you!
Thank you for submitting this wonderful video I am 60 years old and just recently in June cut the ligaments in the back of my left leg unfortunately the stitches didn't hold too good I didn't get the surgery and I'm well I'm still walking around a little bit I spent 30 years helping my brother and my sister-in-law who were paraplegics and a friend of mine overseas she was just recently in a wreck and I sent this video to her to inspire her you're cheerful attitude it does not hide the years of pain and suffering that you went through I've lived most my life with pain as well many broken joints and things but what don't kill us makes us stronger that is true I wish you the very best I couldn't understand what Walker it is you're hoping for but I'm sure it will come your way very soon we sometimes don't get the choices in life we want sometimes those little things in life that hurt us or what bring out the very best in the strengths in us to shine through for others who might be a little afraid of change Godspeed little lady
I use my cane for mostly getting around, or I use my Rollator. If I am at church I borrow the one that is there. I usually lean on the shopping cart 🛒 when I go to the grocery store.
That was great, Jenni! I’m anxiously awaiting the arrival of my replacement walking chair from the NHS as mine is definitely suffering the effects of aging after 7 years xxxxxxxxx
Thank you Penny! Oh bless definitely sound like its time for a new one!
lol my walker is named Steve, the senior who passed it down to me. I got an electric scooter cuz I too HATE being pushed in the manual chair too. The scooter it's great for long excursions, plus I'm a mom and my kiddo rides along w/ me.
I am glad i found this video. I have a learning disability and my leg pain is sometimes good and sometimes bad. i recently got a walking stick from amazon, told mum and she said who am i copying. when my leg pain is worse i tend to trip up more from walking all day and pain is hard.
I have a blue collapsible cane that I’ve used a couple times but I’m not a fan of it cuz of the pressure being on one shoulder it just makes my back pain worse. I love my walker. I use it anytime I’m walking a long distance and the seat is a lifesaver. I blinged mine but the adhesive is coming off so I think I’ll try duck tape or something cuz it’s this dark red that doesn’t match my style.
Definitely duck tape thats all mine is covered in just Zebra print duck tape and it's been out in all weathers for 3 years and Ive never had to redo it! x
OMG I want a rainbow cane! Neo-walk seems to o have canes that light up are bottom.
I have a pink swirl Switch Sticks and a purple folding (unknown brand) from Amazon. Thanks for the handle style overview. I’ve only had T and derby style handles, but the extra curvy one now might make sense for me (especially if it’s cool and sparkly)
I have some Switchsticks in the same design as Sticky! I've also got a Switchstick seat which is useful if I know I'll need to queue but not great for actually walking with. I'm very excited as I've just ordered my very first Neo Walk!
I don't ave the proper stick with a seat but do often end up sitting/leaning on the handles of my sticks to kind of sit which i probably shouldnt do :P Hope youre loving your neowalks.
Thank you for this video. I was really impressed by your glasses explanation to peeps, and i may steal it :) . I also have an extremely variable condition and use electric wheelchair, mobility scooter, walker and canes and each allowed me to do so much more than before, plus like you i use all of them at diff times for diff reasons. People struggle with starting to use mobility aids, i may direct them to this video if they do.
I use forearm crutches and a wheelchair most of the time. I have canes/walking sticks, but sadly most days they aren’t helpful enough. I feel like a walker or rollator would be very helpful but I can’t get over having to use one. I don’t know why it scares me so much more than other aides!
I also graduate in May and I really want to be able to walk across the stage instead of my chair (with a mobility aide so I don’t face plant 😂). I’m thinking a walker would be best as long as I can get my AFO by then.
Loved the glasses comparison! I'm also glad I'm not the only one who names their mobility aids. 😅
Your neowalks sticks are incredible so so cool looking! I really want one defo going to treat myself one day xx
I love them so much! Definitely need to treat yourself sometime! problem is theres just too many choices! x
❤ love your video,i liked your idea about dolling up your walker, maybe i ought to sparkle mine up a bit , although its heavy i could not do without one ,i am not so hot on canes but oust say i love your collection altogether ❤
So I'm 53,no illnesses I'm aware of no doctor yet lol.. Physically worked hard my whole life have had many broken bones injuries,yes I did some crazy shit too.. My right leg is apparently never going to stop hurting, as I do still work on my legs but have started using a cructh lately when i can to help.I only have two so far but am always looking now myself. I will have unique ones too lol, keep your head up!..
ahhh chronic pain is no joke, if you ever develop pain in your wrists from the crutch(es), arthritic elbow crutches are really good :)
@@mackzok5154 Ill have to check those out,the human body doesn't forget everything its been through unfortunately.
I had to get a mobility aid (cane) yesterday due to increased pain in my knee. I have always had chronic pain but last year, I fell in the winter time, which ended up fissuring my patellar cartilage (knee cap). Didn't get it checked until I screwed it up more after taking a job in a heavy lifting warehouse. Totally screwed everything up and the pain increased by so much... Much more than I was used to. I ended up changing how I walk because if I walked normally, I'd end up limping after a few minutes. It's been a cruddy journey. My partner and I talked about it and I got my cane like I said. It's helped with taking weight off my injured knee. I'm amazed at how much of a difference it made while grocery shopping yesterday! But I'm still "embarrassed" about using it. I'm afraid of the judgement. Watching a couple of your videos has helped tremendously in building a bit of confidence. I know I need help getting from place to place and I'll keep you in my mind if I start feeling "embarrassed" again. 😊 Cheers!!
did you got any treatment for your knee? what your doctor suggested?
I have dyspraxia and it effects my walking. I have two wheelchairs, a walker, normal crutches (I hate them), my collection of walking sticks/canes, and my favorites my forearm crutches because I can just put my elbow in them and hold something with my hand so lol
I'm curious if anyone has experience with using a walking stick vs a forearm crutch (the type that bends at the elbow to give more support) vs a walker. I have HSD, POTS, and ME/CFS and can get quite shaky and weak. I've tried a stick before but didn't find it very useful with my flimsy wrists. I was wondering if anyone had any advice. Thank you Jenni for making this video, I love the tuti fruit stick!
I'm lucky my wrists have been pretty good but I definitely do feel it more nowadays. I do find my walker easier than my sticks on that front. Unfortunately I've not tried forearm crutches myself but if you want to drop me a note on Instagram I can probably connect you with some people who have who you can talk to about it x
@@ChronicallyJenni amazing, thank you, i will do
Yaaaasss these are beautiful (as are you, obvi)! Fab vid.
Aww thank you x
Hi, very good. I like you and your ‘ family ‘ stick is interesting me. I like you treat you sick’s like a piece of art.
Well done for spreading your knowledge to others who can benefit from it - thoroughly impressed! Keep it up.
I just saw your video today. Interesting! One suggestion about your Tutti Frutti cane: I wonder if they make a short 5 or 8 cm long section. That would solve your problem with heels, in that you could add a short section when you wear heels. It would be somewhat useful at home, but quite convenient when travelling.
I’m really thinking about getting a walking stick at the moment. I’ve had ME/CFS for nearly 6 years and I’ve never had any type of mobility aid though I definitely should have, I was always far to self conscious, and terrified about other people’s opinions and I dismissed them ALL. Now I’m more comfortable with myself and my illness I’m thinking about getting a stick, this video really helped, I’ve been looking at the neo-walk sticks, and they are definitely making me more comfortable with the idea, just because I think they’re so pretty compared to other walking sticks. I definitely agree that the standard curve is better looking, but I was wondering whether the question mark shape would be more comfortable, and now I’ve got my answer 😂 Thankyou for this video !! Super helpful!
Thanks Elinor I'm so glad I could help! Hope you find your perfect stick and let me know how you get on when you do! Spoons & Love, Jenni x
This was absolutely wonderful; thank you! 💖
I'm so glad you found it helpful x
Loved this video. My mobility is up and down. Some days I am walking around fine but somedays I need a little extra support BUT I don't have the confidence to use aids incase comments are made if I'm seen somedays with or somedays without, almost like I'm I'm fraud. I need to seriously overcome this!!! I also seriously need a Neowalk stick!!!! Lol
Great video! I have a cane too. I was afraid of using it in public at first but a lot of people are really nice about it. My cane doesn’t fold so I want to get another one that folds up but a lot of the fold up ones don’t adjust to the size I need. I found one but it is a quad and my husband doesn’t think it looks cool enough so I don’t know about it. Another one is a cane that can fold down to a seat but same thing it doesn’t look cool. I want it because I get dizzy and need to sit. Hope to find another good cane
Tuttie fruity is the coolest thing I’ve ever seeennnn
The second, purple mermaid cane, that's exactly what I want to get as my second cane. I would like to have a foldable cane and keep it in my bag in case I forget my other cane. But I am worried about the handle. I am sure I can used to the shape of it as my other cane has a different offset shape for the handle. But it's the fact that it looks like the handle has no cushion on it. Just a straight hard wood handle. Has this ever bothered your wrists or anywhere up to your shoulders?
thank you for this video. I have lupus and fibromyalgia. Walking is so painful. I've given up so much pride and insecurity by using a wheelchair. I never thought about jazzing it up so it is more comfortable and less medical looking. this would give me the confidence to want to go out more. thank you so much. do you recommend certain kinds of wheelchairs?
I have Friedrich Ataxia it's neurological condition that in time to come I will have to use my wheelchair but I don't currently, I think a walker will very beneficial for me as walking can be a challenge
Hi Jenny ~ I'd never thought like this about sticks... yeah using the same old one every day must be like wearing the same shoes day in day out and we all know that us gals can't be having that!
Haha I think wear about 2 pairs of shoes but alternate between 5 different sticks :P
Left some feedback for youtube about it not being relevant but an article about AIDS the disease was generated as "context" for this video as a heads up!
ooo okay thanks for the heads up
I’m 28 years of age and live in the UK. Can I just commend yourself and your viewers who use these waking aids. I have a chronic health condition and I am so embarrassed and conscientious when walking with my aid. More often than not I won’t use it in public because of people looking at me, which makes me suffer more. When I was using a wheelchair, I wouldn’t take it in public and I’d sit on a stool that I’d carry around with me. Very strange. Thanks for sharing :)
Your red stick should be TARDIS blue. It has the question mark that is shown on some Doctors in Doctor Who.
Loved this Jenni! 💕
Thank You Beautiful!
This was so great!
I’m epileptic I don’t know what best for me as I get so exhausted easily and I also have long Covid
Hi. Any advice about the anxiety of using mobility aids in public when you appear "able bodied" and people often see you walking around. I just got my first wheelchair and I've just been crying so much and i am so anxious about using it on the days when arms are too gone to use my stick. Im just feel so embarrassed for some reason.
I think a wheelchair is very difficult compared to a stick as for some reason people start pretending like you aren't there or will only talk to the person pushing you instead of you so I definitely understand. But the main things I always say when it comes to mobility aids is you have to try and avoid thinking about what others are thinking and remember why you are using it and why it helps you. Its an aid at the end of the day its there to aid you! Also I know its hard especially when you don't feel it but confidence is so key the more confident and comfortable you are with your aid the more people will see that and they will notice you before the aid. hope this helps lots of love xx
@@ChronicallyJenni thankyou. Channels like yours have really been helpful in coming to terms with my disabilities. Its nice not to feel alone with them 😊
well done Jenni xx have you tried a 3 wheeled walker I use one . Some r very light weight to get in the car ?
Thank you so much! I have not tried a 3 wheeled one but am I right in thinking most 3 wheeled ones dont have a seat which is one of the main reasons I use it? Mine will go in the car its just bulky x
Those are fabulous sticks!! Are they heavy?
They're a little heavier than my original stick but there's really not much in it x
Isn't it true that not everyone who has EDS suffers from joint dislocation? Don't some just have joint pain, migraines abdominal issues,etc
Please answer if you are able.
Thank you so much ❤
fighting currently to get referrals situated (first one got sent to wrong department and now my dr isn't answering calls smh)
so i'm hoping to see a geneticist soon about possible hEDS or HSD
i've been in increasing pain for months now
about a year ago it first started getting worse, although i first complained about hip and knee pain when i was like 14 ish??
and today and yesterday have been so incredibly rough on my hips, walking causes me so much pain,,, i literally was like shuffle limping in target today
it feels so so sudden, especially i worry about pushback from my parents, since i no longer live with them it will seem even more sudden for them and i'm scared about what they'll say (even though i know its just an aid, even though i know it will help me, even though i wouldn't want anyone else to feel this way about them... it just feels really sudden and i'm also autistic so even though the pain for me has been increasing it just idk it feels too fast)
anyway
i'm glad to have found this video it made me feel a bit excited to try one of those walking sticks, i love the multi color one at the end
I'm 30 with MS.
I also have different days I'd need different aids, but I have no walking cane. :(
The aids I have now aren't mine.
NDIS was supposed to BUY them for me, NOT borrow them.
I don't have my very own aids and I don't have the money to buy them.
Hence why NDIS is SUPPOSED to buy them for me.
@@thelegioncollective do you have an OT, unless it's worded correctly they won't do a thing and it takes time for the bureaucratic wheels to function, I hope you get what you need soon
I’ve got hsd and fibromyalgia and I’m just stating to look into walking sticks. Does it help with feet pain?
kind of!! it helps relieve the pain while walking because it takes some pressure off it, but if you have sensitive wrists you might want to look into extra handle covers and compression gloves too
Have you ever looked into Smart Crutches
I am 27 years old and have been using my rollator since I was 21. I am having a hard time coping with anxiety and depression.
My ex partner bullied me because he was ashamed and embarrassed to be seen with me. People in shops terrify me because they get close to me, I once had been pushed over by a person who wanted to get passed me in a shopping isle. I'm too afraid to go out on my own because people stare at me and make comments. People are embarrassed to be seen with me now especially if I'm having a bad day where I am not walking well at all.
Shops are awful, staff keep blocking Isles so I can't get through. I used to work as dementia nurse and care worker but I could never go back to that job again, I tried hard to find another job people but people treat me differently, Purposely dropping things on the floor telling me to pick it up knowing full well I can't do it, being treated as dirt rather than being helped to be a equal staff member. Can you make a video to help boost confidence in young people with hidden disabilities.
I use a mobility scooter when I want to walk the dog, a walker for going shopping, a walking stick for at home. I have several sticks at home because I keep forgetting it, so i have one in all rooms so I always have a stick near by.
My rollator I bought second hand and is red. I hate red so I covered it in little wooden lady bugs and keyrings. I had to take the keyrings off because they are too heavy but I kept the lady bugs and red bows.
I've never heard of neo sticks so I've just googled them and they look so amazing. I wish I knew of them before. But imagine if they made rollators and wheelchairs in that acrylic material. You could have a cherry bomb wheelchair to pair up with matching lipstick and shoes
I’m currently going through tests for POTS, they’re debating whether I have pots or a vestibular issue causing very bad vertigo but at the minute he said it’s looking like I could have both. I have struggled so much the past few years from missing out, me and my friends or family used to go on shopping trips together or other things. But now I can’t do it, after one shop or even less I can’t even walk any further. I really can’t think of anything else at this point other than mobility aids. I’m so great full that I’m seeing doctors but the only thing is it’s been going on for 5 years now and I’ve been waiting for these tests to finish for over a year. I feel like I’m never going to get my life back and I really don’t know what to do anymore. Should I try some kind of aid or shall I wait until I have answers from the professionals ? I’m so stuck :(
For things like days out and shopping trips etc most stores/malls/shopping centres (in the UK anyway) have wheelchairs and scooters which you can borrow for the day/afternoon which I found super helpful when I first had symptoms and then if these things help you can think abut getting an aid of your own. hope this helps x
I'm 19, I'm not diagnosed with anything yet because no insurance atm but I'm looking into a cane or something I'm not sure. I've had constant pain and soreness in most of my joints for a couple years now, and for some reason my family seem to think needing assistance shows you're weak but like sometimes it's so bad I can barely walk or I feel like my legs might give out it sucks
Very cool.
Thank you x
I am 28 and I have fibromyalgia, arthritis of my spine and SI joints, and pots my doctor recently prescribed me a walker with a seat on it I’m worried about being judged when I use it
👍👍👍👍👍👍
Gosh, you’re absolutely beautiful. Would love to speak with you
I truly hope that "Lola" isn't inspired by the movie Lolita (Her makeup, her glasses, outfit and lollipop are the same color) where the 12- year old child was made to french kiss, touch his genitals (Deleted scene) and so on with an old man.
I said this because keep in mind, some of you viewers are vulnerable. I had to do this comment just for myself too, since I got a massive PTSD attack from it.
Nope I've never seen that film, It's just Lola and it was inspired by a Mcfly song, Sorry it had that affect on you. Lots of love x
@@ChronicallyJenni Thank you so SOSOSO much for clarifying, you saved my day. Big thanks from a Finnish zebra♡
My comment is for the algorithm. ♿️🦼♿️🦽♿️