Has Shane’s disease stopped progressing?
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- Опубліковано 18 гру 2022
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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 1,000,000 subscribers on UA-cam. 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.
Great news regarding Shane’s disease! The way that Hannah looks at Shane is priceless.
I love when Shane starts talking sarcastically and Hannah talks over him, continuing onto the subject. Hahaha! My favorite couple ever! They're so funny.
I'm really just an 8-year-old boy laughing out loud at Shane's imitation of his sneeze....and then that poor story in college. 🤣 My sneezes wake the dead! Yours is adorable.
One of my kids has like a power up to her sneeze “aaaAAAAA PTCSH!”
Just the first thing you mentioned, being able to eat almost everything you want, adds so much to the quality of life.
When I randomly see Shane and Hannah: "Oh, I didn't expect to run into y'all today. Would you like to engage in a socially awkward conversation for the next 2-3 minutes?"
haha.
Socially awkward cpnversations are tight
Hahaha yes 🙌🏼
I'm an old woman that volunteered, raised money etc.. I remember when they were just beginning to study SMA and looking at small progress. God bless the MDA and all who work in that field. So happy that you are doing well. 🥰 Bless you both and Merry Christmas ☃️
Bless you your a angel
Omg the idea of Shane swelling up like one of the growing toys make me spit out my drink! 🤣🤣🤣 thanks Shane. On a more serious note, I am SO glad that Shane’s health is stable right now, that’s such fab news!
If you believe that plants benefit from hearing people talk, then you can still help the plants, Shane! 😀
ABSOLUTELY ❣️❣️🙏
They showed this to be true on Myth Busters some time ago. Give that bonsai a pep talk, Shane. :)
Amazing to hear that Shanes treatment is working and his strength is staying steady❤.
Your snot story is hilarious! Your ability to capture the scene in such a way that it draws you in by its relativity and through sheer whimsy. Thank you!😄
I have a question for Hannah. Since when you met and started dating Shane the drugs to stop the SMA progression hadn't yet come out and his life expectancy was only 30, did you have any reservations getting into a serious relationship with him believing that you would end up losing him so young?
A fellow disabled person here with Spina Bifida. I can definitely relate to the bathroom situation, I use the basement bathroom since I have three times the space. I'm glad Shane is getting stronger 😎
I listened to this episode while driving home from work. When you got to the sneezing/snot story I was laughing so hard I was crying!! Between you telling the story and Hannah’s reaction (which I shouldn’t have been looking at while driving 🙄) I was laughing/crying and also gagging a little 🤷🏻♀️,almost couldn’t see to drive!! You guys are a hoot!
Love heals and Shane having you Hannah gives him the confidence and health to grow healthy - you both help each other. Big love to you both always
My thoughts exactly. Love heals.
Well said❤
You two are always a joy to watch. Such a fun sweet couple. Love Shane’s quick witted personality. You two are perfect and wish you two and your families a very blessed happy holiday and new year❤❤❤❤
You two are a beautiful couple.... I have learned amazing things from you...Most importantly how to love my disabled husband no matter how annoying he can be....lol!!! He became disabled 3 years ago and its been a trying time but he is learning to be patient and Im learning how to make him feel good and love himself even though hes disabled. Thank you for your humor and showing us all how to be better people!
I’m severely disabled myself (I’m a quadriplegic and not able to speak) I’m new so I’m sorry if you guys already answered this question a million times but I would love to know how the conversation went about Shane’s disability and how a relationship would work went? What did both sets of parents say and feel about your relationship? I’m 26 and never had a relationship during adulthood so those questions are a big thing to me when I’m talking to someone!
Luckily they have answered tons of questions like yours, if you scroll through past videos, they title a lot of their videos with the questions they are asked so it may be easy to find the videos to answer your questions. Happy viewing, and welcome! ❤
I definitely recommend binging their channel for awhile, they’ve answered all of those questions and it’s quite fun to watch :)!
Oh that’s a great question and they’ve answered so many questions about how they met and we’re talking on the phone and there first get together oh yeah just take a look at the stuff you’re gonna see a lot of interesting scenarios
Hi! I obviously can’t answer for them but from what I know (I’ve been following them for some years now…) they met online, they go in a lot more detail in videos… Hannah saw an interview of Shane I believe and then went on to email him, there’s more to the story but at this time Shane received many emails from people who come across him. But Hannah’s email stood out as it was more focused on how much they had in common rather than a focus on how much of an “inspiration he was”. This caught his eye and the rest is history. This is something I’ve learned from squirmy and grubs… disabled people aren’t people you should feel sorry for and often before watching them I would believe saying you’re an inspiration to someone who isn’t able bodied is something very normal, however I now know Shane is just as capable as having a happy life as an able bodied person. I can’t explain how much they have taught me. my uncle is disabled so I’ve always been open minded to differences. I thought I was well educated growing up. I’m only 19 however every video of theirs seems to teach me something new which not only do I learn I teach the people around me. Anyway! Hannah’s mum was more worried about Hannah getting a plane to stay at Shane’s house someone she met online rather than it being disability focused. From the beginning they had strong feelings for each other and couldn’t have a meal without being on their phones. Both parents main concern was how to get them off their phones!!! Liz loved Shane from the get go and still now ( you’ll see in future videos ) how well they all get on. They actually moved in with Hannah’s parents. I’ll always be great full for Hannah and shane, they put a smile on my face every video of theirs. Please continue to follow them as I’m almost 100% sure you’ll feel the same way. Shane if you’re reading this I’m so sorry for my punctuation I’m sure as a writer you’re cringing. Another thing… I’m now a year into a relationship, the first day I stayed at her house I knew she was something special and it was because of you guys. It was the morning after I stayed at her house for the first time and she got up UA-cam on her tele. She asked me to put on what I usually watch so ofc I put on you guys. She was automatically intrigued, I told her all about you guys and the importance of the little things you have taught me and she subscribed too! From that day I knew she was the one. The conversation could of gone south but she was more than open to understand and learn like me.
@@kierawestpfel7292
❤I believe they bought a house all their own now,... but please do correct me if I'm wrong. ❤
For next G.B. (Grub Bag): Who has the coolest customized mobility aid that you know of? Not like most expensive, but stylistically, like someone has embroidered/emblazoned/bedazzled it in an artistic way? My brother uses a cane now and I can't help but think if/when I do, I'd need it decoupaged with vintage magazines.
Have a very Merry Christmas and the happiest of New Years. Thank you for sharing your lives with us.
So happy to hear this news! You two are awesome!
Shane you crack me up! Hannah is blessed to have someone who makes her laugh daily. The way to a woman’s heart is laughter! Sweet blessings!
I love your channel. It brings a sense of calm to me that nothing else does. I like go listen as I do other things or relax
Yay, I’m so happy you answered my sneezing question!! 😂 the answer and the snot story had me dying laughing 😅 love you guys 💕
So glad to know your disease has not progressed over the last few years. Can only hope that that continues! Merry Christmas to you both and I hope you have a very nice New Year!
hey guys! you are amazing and i adore you!
i have a question for you:
you look like such a happy couple and i assume a big part of that is the great communication you two have. what are your other top 3 things to keep your relationship so great (specifically in your relationship) and what general advice do you have?
merry christmas to you and a great new year!
Wonderful news! Love, love you two! You both have the greatest outlook, during happy & not-so-happy times. Love,love your humor! ❤
That is great news. I'm glad the treatment is helping. I will keep you and Hannah in my prayers. I like your channel.
Wow that’s such wonderful news about the progression of your disease!! Does this mean that young children with SMA will look at a different level of disease throughout their lives compared to what you experienced?
I believe they can virtually halt it with the same medication
Good question I hope they answer it next week or some time soon
There's also now gene therapy for SMA, although (at the moment) it can only be given up to age 2, and in practice is usually given to people with SMA 1 (the most severe form--Shane has SMA 2, which is somewhat less severe).
Yes, good question Katie!
There's an older video where shane and Hannah go to an accessible park with a young friend of theirs who was born with SMA but because of the drug has more mobility than Shane.
You two are so much fun! I am glad that Shane isn't getting worse! I just want you to have a long happy life! That you continue to bring happiness to our lives. I love you both.
Always guaranteed a smile and a laugh! I'm with you on keeping plants alive Shane. Have never kept one alive for any length of time😂
Shane has the most polite sneeze ever!😊
Do you think you’d film your mum and dad doing a little houseplant/orchid tour in a video sometime?!😍😍🙌🏻
I was choke laughing! Shane you provided the perfect picture in my mind with your description of the the elongated nose slime.😆I wanted to call you slug nose,lol
Great video as usual. Hope the Minnesota weather is cold enough and snowy enough for a traditional Christmas. Hope Santa brings you everything you want and leaves something special for Chloe.
I was so worried there wouldn’t be another one of these today haha, I really look forward to your videos!
Blessings! What a miracle. Thanks for sharing this!
Yay! Monday grub bag! Merry, merry, Christmas!! So very happy Shane is not getting progressively worse! Very good news, because we love you both! I want to see you both by your Christmas tree!! Tis the season!
Love Hannah’s reaction to the college sneeze story 😂
Perfect time to ask this, as you mentioned bathroom setups and having kids. Have you thought about if/when you’re pregnant, would you have someone assist with some of Shane’s day to day care? Transferring from/ to chair, Shower/bathing.
Apologies if that’s too personal!
Have a merry Christmas and a happy New Year 🎉❤ from Australia
Lol.... omg! You two are so funny trying to explain the sneeze. The elbow is the correct sanitary way to cover your sneeze. 😅🤣😂
You guys look very happy , much love from my family to yours ❤
Just ran into your site, saw Shane years ago in a documentary and didn't realize he was still alive and now with a side kick so happy to see your well and having fun with life, BTW you guys are hilarious, I'll stay tuned for the adventures of Squirmy and Grubs.
I have been watching you for quite a while, your love for each other is priceless. In that time i have seen that Shane's neck is stronger, there was a time when Hannah had to move your head when out in the car.I look forward to seeing how things are with you. i am a 76 year old lady in Australia, thank you for your sharing. xxxx
Your love and partnership are so inspiring. And I love your sense of humor, it's AMAZING!
Now, the question: Have you guys ever thought about making a movie about your love story? I think it would be as great as The Vow.
I have been watching your videos for years and love your Q and A ~ interesting about your sneezes, Shane. Your bugger story is so funny😄
❤😘 I love you two! You are an amazing couple who are an inspiration to what the power of love and teamwork can do. Forget about the haters! They're jealous of what you have. Keep up the great progress, Shane. You're one of the most intuitive people I've had the pleasure of listening to. And Hannah, you're 1 in a million! Have a wonderful Christmas!!! ❤
Great news about your disease 👍
Merry Christmas guys 🌲 and a happy new year 🥳 love your videos💞⚘️
Merry Christmas Shane & Hannah!
🎄🌟❄️☃️🪅🎁
Again you guys crack me up! Missed you last Monday. Looking forward to Wednesday! Hugs
I'm so happy to hear the great news about Shane's disease progression!
Oh you both bring me to smiles as soon as I see your new video....thanks for smiles
So happy to see back!
Wow glad you guys had a wonderful time with your friend and brother. Sucks being busy. We missed you. Your so funny. Especially thinking of you flashing the neighbors 🙈 or the snot hanging out you nose..🤣
😂 omg snot rocket… 😂 I’ve never laughed so much…
Love to you both
Oh that is wonderful news about your disease.
Merry Christmas to you both!! May your New Year be filled with More love (if that is possible), perhaps the news of a little Shane or Hannah and of course more poop pictures!!!! Thanks for all your honesty and enlightenment on how to be better stewards for the disabled, Rules for everyone../Look a person in the eye when you pass them, smile and say hello.
I wish you well, Shane. I hope that you continue to feel better and be stronger. Happy Holidays to you both!😊
Shane im happy for you dude your a good person and you deserve the best i will keep you in my prayers
You 2 are so funny! Merry Christmas! 🎄
Question: As I sit in my cold house under a blanket, I'm wondering if Shane's disease affects his ability to regulate heat. Do you guys keep the house warmer to accommodate? Thanks!
Wishing you a wonderful Christmas and New Year!!
Today's video made me giggle, you both are funny how you play off each other. Shane were those your new comfy pants, they look like a sherpa blanket? Thanks for the smiles today, I was crying by the end I was giggling so hard! Merry Xmas
So glad your back ! Missed your videos! 😘
Merry Christmas guys, hope you all have a fab one xx
Merry Christmas! Happy New Year! ❤❄️🎅🏻🎄
I love watching your UA-cam channel. And the podcast.
Merry Christmas to you both and to your families as well.
I missed you guys. Hope you are okay. Happy Christmas!
I wonder if you guys could install a screen of sorts that rolls up into a tube on the wall for transporting Shane to the bathroom. Hannah would open the screen that would probably be some kind of decorative fabric and pull it from one side of the hallway to the other. That way shane can feel comfortable knowing no one will see him
I have a question for next Monday's grubbag and I hope it makes sense!😄 I recently saw the adorable picnic video you guys uploaded for Shane's 30th birthday and it made me wonder what your (Hannah and Shane's) relationship with birthdays is like? I know that Shane's life expectancy was previously believed to be shorter (30 I think?) and it's wonderful to think that he has so much more of life ahead of him. How has your relationship with age evolved over your lives? Any anxiety, excitement, indifference etc.? Sorry for the lengthy comment😆 love you guys! 🥰
Hi! Hannah and Shane have a wonderful day and Merry Christmas to you both 🎄🎅🇦🇺🇦🇺
The sneeze story😂. It’s like when you feel bad but you also want to laugh
I love you guys! I'm laughing so hard I'm crying.
Such great news to hear you are getting stronger Shane! What type of treatment are you having?
Merry Christmas yall. You are so friggen funny.
You guys are so amazing love you guys 😮
If you didn't live in Minnesota, what would be your dream place to live (state or country)?
Do you have any particular favorite baby names you've had in the back of your mind for future kids?
Love watching your videos, you two! Happy Holidays!
SHANE !!!! TMI about the sneeze
I knew what was coming but I still ooo yuck !🤧
Happy Christmas to you all enjoy the holiday and see you in the New Year...
Love from 🇬🇧 Jan x
LOVE YOU GUYS XOX THANKS FOR THE LAUGHS
Merry Christmas, Happy Holidays, and Peace.
You guys are so darn cute together. Shane's sneeze sounds like my cat sneeze.
That great news. Happy holidays to you both
Hahaha oh this was an excellent video, thank you both for sharing and answering more q’s ☺️☺️
Hannah, I also died in the inside at the booger story.. Shane, my dude, I am so sorry 😱😱
WOW❣️❣️ I'm beyond happy for YOU both! 🙏☃️🎄 Merry Christmas God bless 😘
Y'all are great!!! Happy Holidays. Question: When and if y'all buy a house what would be your top 5 design changes to help ease for the both of you?
Oh my gosh Shane you are hilarious I laughed so hard about the booger thing. We need to laugh at the crazy things that happen that could be so darn embarrassing at the the time but I find that those things are so funny later n you never forget that situation or event. Keep on laughing n sharing your PMA Much Luv to both of you & Merry Christmas 🎄🎁 🎉
Merry Christmas & Happy New Year 🎉
Shane your sneeze reminds me of a high-school friend. She would sneeze like that but 10 or 11 times in a row!!! 😂😂
You both are sooooooooooooo awesome. Please let me know when you ever decide to travel to Boston. Would love to meet you. You both are as such an inspiration!!!!!
I love watching you both! Shane you have a great sense of humour. Who is your favourite comedian? Would you consider doing stand up yourself? No pun intended!
That is a beautiful rustic cabinet behind you. Do you have any other vintage furniture like that in your house? Also, I saw Hannah wearing a Pink Floyd shirt in a video. What kind of music do you guys enjoy? I love you so much in Serbia. God bless you and Merry Christmas to you both! 🌹🌹💗💗
2 follow up questions! Can we have a plant tour?!?!!! And Do you still have the rats? It’s been a long time since we heard about them.
I love your sense of humour, Shane.
Merry Christmas 🎄 from the UK 🇬🇧 you are amazing love your channel
I hope you and your family have a wonderful blessed Christmas.
I was laughing so hard at the booger story that I had tears streaming down my face 😆
Merry Christmas and Happy New Years
I do love you two , thank you for sharing , so much of your lives and your happiness, wonderful news that your ok in your heath , and to you both and your families , I wish you all a happy and safe holiday time , and a great new year , love from Victoria Australia
Those glasses are a look my friend! Cool specs for sure
great episode . Shanes sneezes are cute ..Have a very Merry Xmas and a Happy New Year . aussiebob .