Has Shane’s disease stopped progressing?
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- čas přidán 5. 09. 2024
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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 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.
Great news regarding Shane’s disease! The way that Hannah looks at Shane is priceless.
Just the first thing you mentioned, being able to eat almost everything you want, adds so much to the quality of life.
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
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 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 CZcams 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. ❤
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?
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!”
Amazing to hear that Shanes treatment is working and his strength is staying steady❤.
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❤
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. :)
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 😎
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!
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!
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.
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!😄
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.
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!
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 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!
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!
MGBQ: Considering your relationship is so public have you ever been in a situation where you were bickering or maybe even arguing and had to be really sentimental and lovey during an event? How do you guys handle awkward things like that?
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!
Oh that is wonderful news about your disease.
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
Yay, I’m so happy you answered my sneezing question!! 😂 the answer and the snot story had me dying laughing 😅 love you guys 💕
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
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!
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
That is great news. I'm glad the treatment is helping. I will keep you and Hannah in my prayers. I like your channel.
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❤❤❤❤
Talking about Shane's breathing in this video made me think about how scary it would be for him to get COVID. Could you let us know If he's already gotten it and was ok?
He has not:)
They were REALLY cautious when the pandemic first started. They basically didn’t see or interact with anyone for at least the first year and a half of the pandemic until the vaccine came out.
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 was laughing so hard at the booger story that I had tears streaming down my face 😆
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?!😍😍🙌🏻
Shane your sneeze reminds me of a high-school friend. She would sneeze like that but 10 or 11 times in a row!!! 😂😂
I’m so glad your treatment is working.
The sneeze story😂. It’s like when you feel bad but you also want to laugh
I cant believe Shane didn't make a joke about being "the Tripod" when Hannah said something about "the tripod being in the way" while talking about Shane naked.
LOL!!!
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! 🥰
Hope You And Shane have a great Christmas ...
Does Shane do any physical therapy or special exercises to try to build muscle strength, since he started the medication, that he wouldn't be doing, if he wasn't on the medication?
So happy to hear this news! You two are awesome!
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😂
Have a very Merry Christmas and the happiest of New Years. Thank you for sharing your lives with us.
Hey! I was wondering - "Could" there be a drug breakthrough that would not just arrest your disease but allow you to regain muscle mass/strength? Or is the damage irreversible?
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!
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 missed you guys. Hope you are okay. Happy Christmas!
I love watching your CZcams channel. And the podcast.
😂 omg snot rocket… 😂 I’ve never laughed so much…
Love to you both
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.
Lol.... omg! You two are so funny trying to explain the sneeze. The elbow is the correct sanitary way to cover your sneeze. 😅🤣😂
What did Hannah tell her mom about you before her mother met you. What was her mothers reaction (besides being blown away by your humor and good looks?) I love you both!
Okay, but now I want a plant tour with Hannah’s parents
Yes !!!!!!
I’d missed that Shane and Hannah combined households with her parents, is this permanent? Love them, they just mesh perfectly, complement each other.
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
Have a merry Christmas and a happy New Year 🎉❤ from Australia
Im a helper by nature. And was wondering if you had advice for me if I were to see someone in a wheel chair in need. Maybe theyre stuck, or there is something in the path or they need a little push, should I ask them if they need help, or assume they would ask me or someone else, or should I just jump in and help? Love you guys!
H: "...Shane cannot fit in that shower..." S: "Because when I get wet, I swell up like those dinosaur toys...: 🤣
I can’t wait for a pregnancy announcement 🤗🤗🤗
Don’t hold your breath,lol
OMG I sneeze the same way 😂 I would get so embarrassed about stuff coming out of my nose so I like trained myself to internally sneeze lol
I sneeze exactly the same! I stop it in the back of my nose somehow! I have to focus to let it loose if I actually have a hanky ready.
“Or just wash me with the hose” 😂😂😂😂
His sense of humor is priceless! He could have a side career as a stand up comedian!
Hi guys, I was wondering Shane, if you have a bad chest infection, what do you do to assist coughing up any congestion? Do you use a cough assist or anything?
Good question! I'd like to hear what he says about this, too.
Hannah's second hand embarrassment at the college sneeze story is killing me😂😂😂
You guys look very happy , much love from my family to yours ❤
I have the exact same sneeze due to paralysis and I too shower once or twice a week because I don't sweat. We just do bed baths as needed.
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 wish I could sneeze like Shane but usually it’s Duck Incoming!
😄
Wonderful news! Love, love you two! You both have the greatest outlook, during happy & not-so-happy times. Love,love your humor! ❤
It shouldn’t be too hard to replace a shower head with a handheld unit on a hose; we used that workaround for years before we finally remodeled. Just unscrew the existing shower head and screw on the hose. Amazon has extra-long hoses for handheld shower heads.
You guys are so darn cute together. Shane's sneeze sounds like my cat sneeze.
It’s very easy to instal an extendible shower head. Don’t be worried, get your girl power on!
I thought the same thing! I was able to install one myself prior to having some surgical procedures, I knew I would struggle to have a shower while in recuperation (and I am NO plumber! LOL!). Even after I was healed I just kept it there!
Shane, your sneeze is so adorable! When I sneeze, I sound like a dinosaur. In fact, my late husband used to shout out STENTAUR every time I sneezed.
I love your sense of humour, Shane.
I would love to actually meet you two in person someday. I would never expect a conversation, but you have to realize I have been watching for a long time so if I did meet you I would think we were friends. Lol. Just remember everyone Shane and Hanna don’t know us like we know them. Lol
A tiktoker I follow, (Tylerroope), talked recently about difficulty chewing his food as well. He talked about how wonderful a disability accessible menu would be. Would Shane like to see something like this available? What would he want to see on a menu like this?
I'm so happy to hear the great news about Shane's disease progression!
Small talk is pry good enough. Nice to meet you? Thanks for following us. I hope you like the content on the videos? How is your day? What brings you here? Pay a compliment. Nothing fancy as you look at celebrities, they don’t say much unless they are actually interviewed by someone. Don’t be too hard on yourselves especially if your in the middle of doing stuff, tourism, getting on a Uber on time, or site seeing.❤
Have you ever considered hiring someone to do the closed captioning on your videos? The automated options aren’t accurate all of the time (for example it often says “Monday grab bag” instead of Grub Bag and it usually doesn’t get Hannah’s name right) and some people like me with hearing loss depend on captioning to get the most out of content on CZcams.
Those glasses are a look my friend! Cool specs for sure
your sneeze story made me laugh so hard 😂😂
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..🤣
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.
Shane im happy for you dude your a good person and you deserve the best i will keep you in my prayers
Hannah we need a plant tourrr
How did you feel when you found out about the treatment? Did it change any of your outlooks towards the future? I.e kids etc or did everything remain the same? ❤
I have SMA Type 2 as well and my question is how did you find a perfect spot to get a tattoo im only asking cause I’m extremely skinny and I really want a tattoo I can’t find a spot that isn’t boney LOLL
Question for Monday Grub Bag: Hannah, you've talked a lot about loving animals, have you ever been vegetarian or would you consider becoming vegetarian in the future? Why/why not? Thank you!
Great news about your disease 👍
Merry Christmas guys 🌲 and a happy new year 🥳 love your videos💞⚘️
Shane is looking pretty good. Maybe I am going crazy, but it seems like his face looks fuller lately. He was looking way too thin there for awhile.
Haha I want expecting the toy dinosaur comment, any I just got a good chuckle out of that
You kids are so cute.. love the snot story!!😂😂😂
Bronot feeling the plants🤣🤣🤣
So happy to see back!
glad you both are better than ever 🤣
What are some baby names that are on your absolutely NO list? Shane what are some names you'd want but Hannah said NOPE to? Haha
Shanna
Shannah
Who really cares ?
@@lorimartin3650 there’s a whole baby names side to CZcams lol so probably a good chunk of people
Merry Christmas, Happy Holidays, and Peace.