New Wheelchair Trial - Was I disappointed? / Squirmy and Grubs
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- čas přidán 21. 07. 2024
- Shane does a test trial of the leading candidate to become his new wheelchair!
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Shane Burcaw (he/him) is the author of several award-winning books about disability. He is the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.
Hannah Burcaw (she/her) graduated from Carleton College, where she studied Sociology and Anthropology. She films and edits the “Squirmy and Grubs” vlog, which has over 800,000 subscribers on CZcams. Hannah has spoken at prestigious universities and Fortune 500 companies alike about the realities of ableism. On her popular Instagram account, she advocates for acceptance of all people and works to improve the way society thinks about disability.
Shane and Hannah have been together for over four years. They got married in September of 2020 in the midst of a global pandemic in their backyard, with their officiant conducting the ceremony via Zoom. Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together.
My heart wanted to burst with how accommodating the company was with the chair.❤❤❤❤
Shoutout to OT and seating departments everywhere... OTs and seating techs are some of the most caring and flexible healthcare workers out there that make the biggest differences in people's lives!!
Wish I can say the same about London UK
I know it's hit or miss-way worse where I go to college than childhood area-but in general, could not agree more.
I wish I could say the same. My experience has not been good. I live in Michigan. OTs and seating techs never know what it's like to actually use a wheelchair. I'm glad you have had a good experience!
@@tabithalandon4793 I am an OT. My college assigned us a project where we propelled a manual wheelchair 24/7 in as many spaces as we could access for 2 days. It was an eye opening experience. However, one can never truly know what it is like in another's shoes. We try our best and communicate to meet our patients' needs as best we can. We are all learning as we go.
@icecrystal34 🙏❤️ I was really excited when they said ...take it outside if you want! 😊👏 Shane added that was the first time he had access to that.
Wonderful to see how accommodating everyone was. So helpful. And genuinely interested in giving you the best product for your needs. But wait…. No camo? No flames! 👏🏼👏🏼😂😂
That would not be the actual chair he gets in the end. That one is a demo chair. If he likes it the will completely spec him out and order hinew chair with everything pt/ot and he wants and needs for exact positioning and functioning . That is when he will choose color...skins...lights...yadda yadda. It's a process the from beginning to end in ideal circumstances can take 3-6 months to be delivered to the client.
Yes, but no side walls on the ramp? After the winter accident my suggestion would be high walls on both sides ;)
I'm really encouraged by how much Shane is articulating how hard it is to adjust to something new, even if it's better. Probably because I'm doing a lot of adjusting to new things in my own life. They're great, but adjusting takes time, energy and patience!! Good luck, Shane! It sounds and looks fantastic!
This happens to me every time I upgrade my cell phone. Sure it always ends up being soooo much better, but the change stresses me out big time!
@@janey0317 OMG, yes!!!! It's so hard!!
It’s awesome to see how supportive and accommodating everyone was throughout this process ☺️
I feel you. But I also think this shouldn’t be something we have to celebrate. It’s their job.
Just celebrating the small victories that crush ableism ❤️ love and light to you
@@candycane5458 True,but still good to be thankful.
You could do a side by side comparison of what Shane’s chair can do now before you get the new one and then show the same test next to it when you get the new one.
I held my breath when he went down the ramp
Lmao same here
That new chair looks fantastic. I love the feature of it lifting you up higher so when you are out for a walk you are more at a level with everyone else for conversation purposes. The joystick looked really good too.
I’m getting all misty watching this. So very happy and excited for the additional freedoms this will provide to you, and especially ecstatic for the comfort factor. You two are warriors and I respect the heck out of you💕
I’m thrilled for you both that the new chair process is going easier than anticipated. Good luck with your upgrade, you’re more than deserving of something that’s going to make both your lives better.
Wish that insurance worked so that everybody who needed it could upgrade their wheelchairs at any time with the latest technology. Thanks for sharing - learned a lot!
This is so exciting! Thank you both for including us in the process! I'll keep a close eye out for the next video! Fingers crossed the in-home trial goes wel!
What a relief that it went well. It’s such a massive deal for you. It makes me very happy to see you guys living your best life. Good luck with the test run
Im happy to hear you really think you found the chair for you. It looked like you were comfortable and not overly stressed. What a great thing that viewers gave you advice and suggestions and shared their stories. Bless you both
So excited for you Shane! That's so awesome they will let you borrow the chair at home. You'll have the perfect test drive! Good luck on your decision! Much love from VA. ❤️
Awesome! It thrills me to no end how everything goes better and more technologically advanced as time moves along!
Looks like a nice ramp and excited about your new chair. Sounds like a huge upgrade!
So awesome!!!! So happy for you, Shane!!! I could tell from your face you were really feeling great in that chair!! Wishing you as much luck with your home testing!!
So excited for you both, re: your new chair. Your blogs/clogs .... whatever they are called these days, are always so uplifting and full of good humour, respect for each other and making light of what is potentially a huge change in your lives. But you do everything with such a grace, and take everything in stride. What an example of two very lovely humans. Chloe must think she's won the Lotto, having you both as her parents.
Can we get an update on how your new pills you take daily for SMA are working out in comparison to Spinraza? Im curious...Thanks for the vid today!
Ya I’m curious too bc he said he gets tired with the joystick sometimes
I feel like his speech has somewhat changed. I've been wondering the same thing.
@@meghanf2012 I agree. He seems harder to understand but I’m sure there are days worse than others
@Your Over There that can be said about any of us. I wonder if they will publish his detailed expert opinion in a medical journal...
@Your Over There Stop being a creep. Shane talks openly about his health. You don't have to make macabre shit up for attention!
Shane and Hannah,
You both seemed so excited about the chair, I hope it proves to be as amazing as it looks.
I'm so excited to hear the results after your home trial.
I'm so pleased with the customer service 🙌 you received while looking for a new wheelchair. Getting to try it out at home will be huge!
Watching you drive wheelchair reminded me the lake we visited this week had a mat from the beach all the way to the water for wheelchair accessiblity. I thought that was so cool and respectful!
It is amazing that the company is being so helpful. A chair like that is a big commitment so being able to test run is fantastic for you and I hope it works out for you.
Super happy for you guys! The walking around more on the same night level will be wonderful I bet. Hannah I really like how that green top looks on you! Nice!
I am SO thrilled to see something that has always been so unnecessarily difficult finally become a normal and helpful experience for someone that needs it.
Also the sun loves you guys! You are both glowing!!
Thank you for sharing your lives with the public. I really enjoy your videos. This one about the hairstyle from the pool is just so entertaining. You guys are great! I love your sense of humor.
As soon as you said "new joystick" I was concerned about sensitivity issues. That learning curve would drive me nucking futs! My mom is an Occupational Therapist who worked for the county in Peds for the majority of her career and the therapy unit would have wheelchair venders show up all the time to show off new chairs with varying levels of accessibility. I grew up around the local venders and all of them are close family friends so I've seen plenty how absolutely awesome and inventive they can be. Except for one. I was at about 10 or 11 hanging out at my mom's work one day and a vender brought in an electric with basically a headband for driving instead of anything hand held. They asked me if it try it out (I'm fully able bodied) and they told me to treat it as if I couldn't move my arms or legs so I tried my best. The headband would basically pick up gyroscopic movements with my head and move the chair based on that...at least, that's what it was supposed to do. I absolutely understood the way it was supposed to work and I tried really hard to get it to work that way but it just went so badly. The dude wanted to sell his idea so bad he was basically yelling directions at me like "seriously? You can't figure this out? It's easy! You're not trying hard enough." He was so annoyed. At one point I put my head forward to make it go forward and it sped forward so fast, my feet fell off the foot rests and started to get caught underneath the chair and it hurt really badly but it was forcing them under backwards. I was taking it seriously so I was pretending my legs were atrophied. Of course, when my feet started going under, I looked down to see what I could do to fix it and of course, the further forward I leaned my head, the further forward the chair would go and it just got worse and worse. The vender never ran to come help me, one of my mom's coworkers had to run over and shut the chair off and pull my feet out from under the chair. It was so bad... The vender was pissed and basically told my mom it was my fault and I just wasn't getting it and she said "if she's completely able bodied and she can't do it, what makes you think the kids we see will be able to do it? Most of our kids with that level of involvement can't even move their heads enough to make it move, let alone be able to do it with any level of accuracy with their limited range of motion." It was a nightmare. I felt so embarrassed that people thought I was being too goofy and not taking it seriously but I really was and I really did care! It was a good idea in theory but poor in practice. Some ideas are really inspired and some are just not helpful at all. And I can say, I haven't seen a single person with a headband driven wheelchair so, I'm guessing that half baked idea went the way of the Puffin along with the dude trying to hock it. He was such a douche...
I'm so excited for you Shane! I have the permobil ff3 and I really like it a lot. I even tried the permobil that stands up like a Transformer but that was too much for me. I'm excited to see how it works out around the house for you. Might I say the past couple videos I have seen you have some crazy tan going on! Hannah seems more excited than you about the chair right now. I'm sure you are nervous about it but I can see little glimmers of excitement. I totally get it.
So excited to hear about the home test drive! I hope we get to see it too!
That was so cool and fun to watch-How interesting!!!!!! This is so exciting! Cant wait to see you use it at home.
From Madison but visited a friend in MN this past weekend. Went to the science museum because of you two! Loved it :)
That wheelchair is awesome!!! I hope it works out it's comfortable, and you're comfortable using it, so you can keep it. 💖 Shane and Hannah.
Another exciting adventure. Enjoy your trip. Can't wait to see you enjoying the trips.
Sounds exciting! The in place full circle turn seems very smooth. 👏
Shane, I wish you lots of luck with this newer chair. I love that they are working with you and allowing you to test it like that. It’s awesome.
Sooooooooo happy for you!!!! I can't even imagine how difficult this would be!
That new chair looks awesome. Being able to turn easier and have the chair lift so far up will be so helpful.
That is great that they are working with you so much. Good luck with this important decision.
Wow that chair is amazing . Great you did a vlog on this subject . So helpful to other chair users . Congrats ☺👍
Thank you so much for sharing your journey with us!
Hey Shane: I didn’t know your old chair was a Permobil. I definitely agree that if you have been using that brand it’s best to stick with it. I have a Quantum now that I love but I was in an invacare before and the adjustment period was major! I did have a Permobil briefly but I didn’t like it but I know everyone’s needs in seating are different.
Also my invacare was a rear wheel drive and my quantum is mid wheel and yes that was a major adjustment as well but now I love it! I did have that same drifting feeling in the beginning also but they made some adjustments to the chair’s computer and once I got used to working with the controls I was good! I love that I can turn on a dime too! 😄
Question for one of my friends who is looking at replacing her chair that she's had for well over a decade - she gets terrified anytime there is any rain that it will ruin her chair. What is your experience with any of those chairs with inclement weather? Not saying "can she put it in a swimming pool" but "can she go across a parking lot with large puddles during a moderate rainstorm"
I just recently learned about your channel, I am now an avid fan. You two are adorable, you brighten my day. I must say that wheel chair is amazing with all it can do. God bless, I will continue to watch and keep up with you.
You do such a good job of describing your potential new ride. Good luck!!
I am so glad you had such a good experience. You are so right that you can't really decide on a chair until you use it in your every day activities. I'm looking forward to your next video to see how it went.
I'm so happy for you both congratulations on your trial of wheelchair.
Hope the home trial goes good as well :-).
I love how Hannah is equally excited for the wheelchair trial.
Looks like a awesome chair! Hope you will love it! Sending hugs, prayers. and kindness to you both!
Hi Shane and Hannah. That new wheelchair is so sleek, modern and way cool! Have a splendid week ahead.
That just great good luck with the new chair I’m sure you will love it looking forward to the update
Shane, I am very happy for you. I hope the chair will be everything you need & hope for.
Shane, I understand what you mean in this video! I had the same chair you’re in now, loved it! Rear wheel drive was my go to for all my chairs. I currently have the f3 front wheel drive.. super big learning curve! Love it now though! Have all the features and everything on it. Had to fight hard to get mine covered by insurance.. best of luck with the process!
I had one of those mid-wheel drive permobiles for quite a few years. It's nice. RIP to all of your wall corners.
SO EXCITED FOR YOU SHANE!!! I hope you guys love it!!!
So happy for you Shane!!! 🤞🏼🙏🏼that your trial run at home goes wonderfully!! Love y’all bunches-❤️❤️❤️❤️❤️👍✌️
Congrats on getting your new transportation. Wow! The whole experience is different than I thought it would be too. It's awesome that you get to try it before you buy it.
I am excited they were so accommodating. Good luck!
Excellent! Growing up, one of my friends had severe spina bifida. When we were about nine or ten, she was able to get a new chair. I remember that she was so excited to be getting a new chair. When it finally came, she was thrilled. It gave her more mobility, and it had glittery blue handles (it was sporty looking compared to her old hospital-esque model). I’ll never forget the handles and the drastic change (much easier for her to navigate the halls with). We moved away not long after that. We kept in touch on and off, and she passed at 41. Thanks for taking me down memory lane. I hope your chair is all you want it to be!
How awesome that they are working with you on all your needs. Hopefully this chair will be the one that makes life easier for you.
I have an M5 too! Love every aspect of it! Going from rear wheel to mid wheel is definitely a learning curve but I adjusted very quickly to it. Plus permobil support is great and all the built in functionality is great too
Excited for you Shane! Looking forward to hearing what you think after trying it at home
I’m so glad Shane is comfortable in the new chair. Such a great guy. Hannah you’re pretty awesome too☺️
Congratulations on your new chair!! It looks awesome and you were rocking it!!’💞
Wow the new chair looks fantastic. So glad it turned out to be a great experience trying it out. 🙌💖
Glad it went well; hope it's a new comfy and maneuverable chair for you.
I love watching Shane and hearing his experiences in trying new things.
That's the same chair that I have and I love it. They brought the chair to my house and helped me for a while. It was a very good experience for me. Had the chair for 2 years and no problems at all. Good luck with yours!
I love that you can test it in your home. The difference between PA and Minnesota!
They’re going to bring it to your house to try?! That’s so amazing!! I feel like that should be standard procedure though. You are pretty much purchasing a new body to use for years and years to take you anywhere and everywhere, you need to make sure you are as happy as you can possibly be with it. I’m so happy it went so well. I can’t wait to see you scooting around in your new wheels! Love you guys ❤️❤️❤️❤️
I'm so glad the appt went well! Great video!
Love the chair and you did so well with it! I hope the trial at home will go well!
Glad to hear it went well so far! That can be such a huge decision! Thanks for sharing the process with us :) Best wishes you end up with something that works well with your daily routine and lifestyle
Shane: "Those extra six inches will be amazing".......that's what she said.
Woooow. 😂😂😂
I’m scared looking at the space between the car and the ramp because I think about when Shane fell 😭 love you guys lots🧡
Me too. I was like, “Where is the railing??”
I think having it inside, and no chance to get ice and snow on it should help.
I’m so glad this went so smooth for you Shane!
Love the new wheelchair and it was great to see everyone so accommodating :)
I’m just so excited that they have made it so much more comfortable and low pressure of a process. If you’re spending this much time in a chair, I’m glad you can be sure you love it first!
Nice ramp. That new chair looks fantastic. It also looks like you'll be ahead of your needs. Hope it works at home.
I truly hope that you get your new chair soon Shane thank you for sharing your wonderful videos with us all you make my days a little easier may the lord bless you both and your wonderful families x
Very cool chair! And wow, how cool that they will set you up with a loaner to make sure it's right for you! 9 years is a long life for a chair.
I know it's not something you have now, but maybe it would be a good idea to inquire about an attendants stick; on a day that you may be having a really bad day, it would give Hannah a stick on the back of the chair to drive it with.
Hello
I didn't realize this is a possibility. It is really a great idea
@@heatherjunker967 it’s more popular in pediatrics, but very helpful with some adults, too.
So happy & excited for you to get your new chair!
The chair looks so good! The tight maneuvering is awesome
You two are the most inspirational people I know love to you both. And Hannah’s mum
Yay exciting times. I look forward to updates.
Soo excited for you guys about everything!! 😊
I'm so excited for you guys! What an amazing company to work with!
Shane you look great!! Excited for you!
It’s such a personal choice for you. There’s not really anything that I can compare it to. Your chair is almost a part of you. I do hope that it goes well and you get the chair you deserve. Love your videos ❤️
I am sooo happy for you Shane. Life will be significantly easier for you.
SHANE, I still think you should get one of the chairs which can climb stairs. There are SO many shops and stores, restaurants, and other buildings which will suddenly be available to you.
I love my Permobil M3 it’s my first Powerchair I got it a year ago in January it’s so awesome you will love it Shane!!
The new chair sounds exciting! Lots of improvements over the current one.
Great video. Glad to see it went so good
Oh come on the curls are great!! I think Shane should try the “curly girl” method and release his inner John Snow
YES! The pandemic has released my curly hair obsession and I died when he said his hair is going curly! :)
😂
Omg Yes
Hahaha yes!!
I totally agree! He should go curly! my husbands corona hairdo turned out sooooo good. I now have a blond John Snow beard and all. Never knew he could pull that off, but man does it look good! He even had an elderly woman flirt and fan girl him about the beard and curls. Haha . We both have curls and he has better hair days than I do, haha. I have damage from bleaching. His virgin curls are lush and shining. I’ve fallen in love all over and envy him at the same time LOL
Shane the Tornado! So excited for you to get such a nice upgrade!
Shane, I'm so glad you will finally be able to see what Hannah looks like LOL. She's beautiful. And, I must say, the hair makes you look quite handsome! Or, maybe it could be the snazzy new wheels??? Love you both. Have been enjoying your videos. I only recently discovered your channel and I'm absolutely addicted. :) Best of luck with the new chair!
So, pleased that everything went well for you. As it's so important to for you to get the right wheelchair. Love the idea that they are letting you try the wheelchair at home. That is where the chair will really be put through it's paces. Good luck hope it's the chair that you want. Xx
I hope this project continues to go well Shane. You both look relaxed and happy.👍good.👊❤❤❤❤
Why have a literally not seen any of these videos for like a hundred years but I’m still subscribed?
This new chair looks so good ON YOU. Lol your legs look longer, you look like you are sitting up straighter in it. So awesome. Hope it all works out for you.
I just love your channel, Shane remind me so much of my son that passed away from duchenne muscular dystrophy.