Getting Weaker is NOT Easy! / Squirmy and Grubs
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- čas přidán 12. 10. 2021
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Intro animation made by Pinkietoons! Check out her Instagram page to see more of her awesome work: / pinkietoons
Intro jingle made by Caitlin Kalafus! Check out her Instagram page to see more of her awesome work: / caitlinkalafus
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.
Don’t forget to click here toodaloo.com/SQUIRMYGRUBS to get $5 OFF Toodaloo’s tasty snacks. Each flavor benefits your body in a different way, so choose to support everything from skin health, digestion, focus or relaxation with their 5 tasty flavors! Let us know what flavor you choose in the comments below! Since filming this video Shane has decided that the barbecue chickpeas are his new favorite food. Enjoy!
Thanks so much for covering this issue!!! I have a progressive neurological condition but at the same time am in my second year recovering from my 3rd brain surgery to slow the progression... Which means I am conflicted daily as to whether I am getting worse or better based on my symptoms and capacity. You can imagine how much more confusing it is for those around me! I lost the ability to walk with this last surgery, and have hemiplegia with some TBI, and have an occasional "good" day with lots of variations of bad days. I try to talk about this with my loved ones a bit when it gets too much, but they don't know what to say, understandably. Your videos and the Chronically I'll & Disabled Community have been a real lifeline of humor, peer and relationship information, and escapism. Thank You for your transparency with boundaries, and joy. Best to you both.
Signed, A Fellow Soc Major
Well done.
My husband has a really rare form of terminal cancer multiple myeloma called poems syndrome if you went blind in the last 3 months he's already housebound and bedbound and now he's gone blind it's been extremely hard for him to manage and cope with so I completely feel what you guys are going through and I understand I am also a caretaker
“Yeah! 🙄'A special spot in my heart'....I was afraid of her!"
Good grief, Shane. This is how abuse rumors get started. 🤣
LOVE CONQUERS ALL! GOD BLESS YOU TWO
I have Huntington's Disease and have recently started choking and losing my balance more often. I appreciate you talking about this on a public platform.. I feel alone sometimes so... Thank you
💛🙏
@Katherine Gupton - sending love your way, and stacks of strength and positive energy to help you thru the rough spots 🙏🏼💚😊 Please know you aren’t on your own.
Much love and gentle hugs from New Zealand x I have hEDS and am starting to have choking issues too, absolutely sucks.
It isnt easy to lose your physical strength. A prayer sent your way.
💗💗💗💗💗
I was literally crying in bed just now bc of how i’ve been progressing quickly and struggling to deal with it and opened CZcams for a distraction and this was the first video that popped up. Thank you💕
Same thing with me!
@@sweethomealamanda I am not talking about the content, I'm talking how algorithms work. It means you are being monitored as to what you watch.
@ImmaRollWithit….You take care of yourself sweetheart 🙋🏽♀️💕🎉🎊🎈
Imma, that's awesome! God's little messages that show you how much you are loved and supported ❤ 💕 ♥ Many blessings of love and light ❤💫🙏❤💫🙏❤💫🙏
Sending prayers your way
My cousin has SMA, she’s now a teenager and not letting the world stand in her way she’s got a boyfriend they are as sweet as you guys they Havnt met but they are video chatting like you guys did❤️💕 i love that you guys are so honest on a platform such as this.
You guys are the best
I've how you can care for Shane without infantilizing him!
I'm glad your discussing this subject. I'm experiencing that now .up until recently I've been able to do quite a bit for myself but about 3 months ago it has become harder for me to do things i never had a problem with before. It's scary and irritating. I've been a parapelegic since 1969, after being shot, and been able to care for myself but now I need to ask for more help with small things used to do. My loss of ability came on quickly after a stay in the hospital. I've had to buy medical equipment to help me get out of bed and I cant sit up as long as I used to. I used to make quilts,garden and cook but now I can't do those things like I used to. I'm 72 and age is catching up. So I do what I can and push myself. I never thought about this happening to me or others who have physical challenges. Your video helped me feel better.
Many hugs and much love to you from Alabama
I hope you will continue to sew and grow and make things -- however it is accessible to you. Even if it takes longer, your periods of creative energy are shorter, and regardless of what you produce. The act in itself, even a seemingly insignificant step, is a beautiful and defiant exercise.
My grandmother is gone now, but she was a quilter too. She didn't start until her 70s. I watched her make the most beautiful things. Even the things she wasn't proud of (you quilters are so hard on yourselves sometimes) were beautiful, because of the way creating something -- even just an idea -- gave her a little bit of energy when she had none.
I hope you will keep shifting and finding new ways to do what you love or finding new and different things to investigate, even if they're in small manageable bursts. You are a creator and I'm rooting for you.
Emerald.... hi. Yes, I'm 74 and age definitely plays a role in diminished movement..... trying to accept it and modify what we can to maintain our independence seems to be a pretty universal response to it....
Good thing we are stubborn enough to not give up!!
Giving up has never been an option for me, obviously not an option for you or for Shane or for the others who have commented on this video.
Do you have a page, channel, etc where one can view and/or purchase your quilts? Thanks.
I’m pretty glad you guys talked about this. I was born with spina bifida but then just 2 1/2 months ago I broke my back and sustained a spinal cord injury. I went from walking relatively unassisted to now paralyzed from the waist down. Also received an osteoporosis diagnosis which explains breaking my back in a routine fall. The sudden & extreme loss of function has been really tough at times & there’s lots of things I need help with now which has been hard to accept. I know I’m not alone in feeling this way but to hear Shane describe similar feelings makes me feel a bit better. So thanks for this!
I have SB too and was paralyzed during a bladder augmentation. Hang in there it gets easier
Oh bless you... that's terrible and I'm sorry to hear it :( I know it must be really hard... I broke my foot and being unable to move about drove me crazy, I can't even IMAGINE. Good luck to you and I pray for any improvement 💗
So so sorry you had to go thru that
@@livinglifeforward4560 believe it or not it was the best thing that ever happened to me
@@heatherr1164 I can understand that. 11 years ago I got chronically ill. I have a port and feeding tube. Numerous illnesses and auto immune issues. I met my bff thru it all cause she has the same illness and tube. So I can understand when you say that. I would have never met her if I wasn't sick.
THANK YOU!!! I have primary progressive multiple sclerosis and it’s progressively disabling disease. Started at 30 and the loss of function in the first 3 years was insane. I’m 36 now. I have to add to this fabulous video that it’s okay to grieve loss of function and don’t be afraid of mental support options either. I resisted and suffered. Once I accepted the new path for my life, the help of others, the mental support…I’m in a much better place. Still trying to find my new purpose, but that’s okay.
Love you both, thank you Shane and Hannah!
Hugs to you, Laura!
Hannah really understands what it is like for you Shane. Hannah thinks the glass is half full, rather than empty, bless her. Amazing and so happy that your paths crossed 💕
@Hereforthecomments👀 she listens to him, lives with him and helps him daily. She sees the highs and lows and loves him, so she try’s to understand the best she can. My husband and is like Hanna and my care taker and he does the best he can, I am getting worse my diseases are also degenerative. It is so hard but being with your soul mate helps make the days a little brighter.
This was timely for me. I’m 51, and I’ve been getting along without much help for the last seven years. I have a bunch of chronic conditions. They affect my balance, my memory, the strength in my hands and legs, and I’ve noticed in the last year or two that everything is getting more difficult. It took me an actual year to ask anyone for help, but I finally mentioned all the stuff that was important to the specialist who looks after my asthma, and then to my GP.
And now things are coming together so that I can get the help I need to do things like clean the house, do laundry, grocery shopping, stuff like that. It took me all of last year to get to the point where I could get over my own ego and just ask for help because I needed it. It’s a big deal, especially when you’ve been soldiering on by yourself for a long time. I’m so glad that you have each other. ❤️
I am both disabled and OLD and it ain't gettin' any easier!!! Love you guys!
Same here. I lost a bit of function this year, 4 years after paralysis, due to illness. My guy has adapted the car door so i can get in and out again. Keep on going 💕
🙏🏻for strength
I heard an older guy once say, "aging isn't for the weak," and I thought it was so funny...and so true. It is HARD to get old and it really sucks. You have to be pretty brave to see your youth fade and old age inevitably creep forward. I try to fight it with vegetarian diet, etc, but it only slows it down. Aging never stops. I just try to find joy in things but I do find the whole thing depressing.
@@mygirldarby I can still hear my Polish gramma saying "Dun git old" every time I suffer the slings and arrows of aging! I'm vegan and it does sure help, but I totally relate to the difficulty in finding joy when it seems it's all downhill no matter what you do, and nearly everyone you know and love is sick or gone, even my own firstborn. My sweet sister used to say... "'Golden years' my ass, more like the rusted years!!!" LOL
@@caroljohnson3698 I know there’s a little removable handle you can buy quite an expensively that hooks on the latch of the door to help you get in and out of the car.
Hannah your love is a big dose of medicine Shane needs. Your love and encouragement is definitely part of Shane being happy!
Hi Shane and Hannah, I'm 22 years old from Brazil and I have the same disability as Shane. I've been watching you guys for about 3 years but never commented, but the subject covered in the video is something I'm dealing with now, I've never been able to do much like feed myself or lift my arm, but it never bothered me, but with the pandemic I've been in my bed a lot longer and now going back to the wheelchair is being difficult and I'm feeling weaker and I'm working in this mindset that it's okay to make some adjustments in life, do the things that you did it in a different way. Anyway, I would like to thank you for the content and say that your channel is very important because it makes me believe that I can do many things I thought of and as some people even in my family told me I couldn't do it, thank you. I hope some day meet you guys
Did you take the drug, Spinraza, like Shane did? Best wishes to you.
@@dickrichards9650 No here in Brazil the only way to get it is if i pay for it and it is VERY expensive
@@Joao_Pedro_17 Have you considered, a go fund me?
🙏💛
@@dickrichards9650I dont think that would work each dose here costs R$145.000 and is 6 first year and 3 the following years
this was so much more joyful and wholesome than i expected it to be
This was such an important encouraging video. Shane, I love how Hannah helps you see things in a positive way and encourages you!
You don't know how much I needed this right now. I also have a neuromuscular disease, diagnosed just 3 years ago (it's like a cousin to SMA) and life has taken quite a rapid turn on me. I'm still stuck in the "acceptance" stage. And losing ability is hard. I was always strong in my arms and hands, I was always to go-to for opening things. Now, I can't open anything easily if the lid or whatever is tight.
Hey girl, I hope you happiness whatever comes your way. I wish you really loved and fulfilled life! Hugs from Italy
Video idea: I would love if you guys reviewed movies/tv shows that have disability represented in them. You could rate what they did right/wrong and what ones are good to watch!
Like S3 of Sex Education, where they present an interabled couple with Maeve and Isaac
Or crip camp which I watched on their recommendation!
The girl who believes in miracles perfect one
@@sebastiansantamaria2245 oh yes that would be a good one
This!!!!
Totally stating the obvious here, but you two are just adorable - and extra adorable together. Love hearing how your relationship has brought so many solutions to help Shane manage certain things which were becoming a struggle, and how Hannah was so proactive and thoughtful. You two really are meant for each other 💚🙏🏼🥰
I totally agree with Lolli.. you two were meant to be together.. God always has a plan for us...
Hannah: have you ever considered modeling?
I was talking about how I could no longer hold my head a certain way and my Dil lovely came up with a neck brace and even though it was just for a while it made such a difference. My doctor smiled and told me I had learned to adapt. That stuck with me and after that I looked at how I could adapt to whatever my health threw at me to continue to be content and do whatever needed. It really helped me so much:)!
Hi I have hard time holding my head up. Where did you get your neck brace from
@@ceemeebee15 My Dil is an OT it was a plastic one with the hole at the front that didn't make me feel pressure on the front of my throat. You can probably order it online or from a medical supply store. Then I went to the soft white one from Walmart after I got a little better and could hold it up better and was more used to the feel of something on my neck. But, at first that one really helped because I felt I could breathe without the pressure on my throat. They are kindof aqua and white and. Come in two pieces that Velcro together with a space over the front of your throat that is open and that really helped with swallowing, too, but they are hard, but at first I needed the extra support, so that was good. God bless you.
Thank you for sharing everything that I have felt as a person with SMA!
I have Generalized Dystonia, it started out just in my shoulder, spasms and tightness.. when I turned 38 it progressed to my legs,I lost my ability to swallow 2 years in a row. I has moved to my bladder, about everywhere.. there is a process of grieving over the loss of ability.. I would describe Dystonia more but I am physically wore out.. it's a Neurological disorder, it causes tremors, involuntary movements, painful spasms of muscle groups.. I have watched your channel for a long time and never commented.. it is hard to decline... you all our so blessed to have one another 🙏 ❤
There is so much truth in this video. As a disabled person I can testify to the internalized ableism that makes it hard to ask for help, be receptive to adaptive resources, and have a mindset of how to navigate things that most people would see as barriers. Thank you, Shane and Hannah, for your honest and helpful descriptions of your life together. I hope I one day find a partner who will work with me to navigate these things as beautifully as you two have.
You two are an encouragement and example to us all, thankyou!!! X
I had no idea how much I needed this video when I clicked on it. Going through some changes with getting older and having a hard time accepting them. Thank you both for your positivity!
Shane "You always look a bit like George Washington" 😂
right LOL
😂😂😂😂😂love Shane
Lol He is SO quick with the wit❣
He does know what women want to hear, and how to make her feel extremely beautiful
He's so freakin funny😂😂😂
Love you both! You’re educational and just downright entertaining and enjoyable to watch. Love the humor too. I admire you guys.
What an inspiring video. You two complete each other. Your blessed to have each other. Take care of each other.
thanks for sharing Shane : ) losing strength is something we will all go through or are going through ... your mindset is so strong and I aspire to have a mindset more like yours!!!
Individually, you both have such a wonderful mindset and inspire each other...
Collectively, you inspire everyone! Bless you both!
100% - this was one of the most generally applicable topics you've covered. How do you cope with change? Thank you.
What a great subject to cover,,,now that I’m in my 70’s, I have had to accept the fact that I cannot do some things also! Shane and Hannah, you two bring so many smiles,, thankyou💖💖
Wonderful video. Also, you were so thoughtful to acknowledge that there are other kinds of loss and getting weaker, and that means so much!! Love you both and love your videos!!!
This is so timely for me because I've lost function due to side effects from chemo -- neuropathy in my feet and fingers, poor balance (added to my natural clumsiness, LOL), lack of stamina -- and the frustration of not being able to do simple things is what drags me down. My husband and family are fantastic but it's not the same as doing for myself. Also, I was a teacher for many years and had a second grade student with SMA who started needing a wheelchair in first grade. He was a strong, strapping looking kid and you'd never think by looking at him that anything was wrong. He's now well into his 30s and I haven't seen him for many years but think of him fondly when I watch your videos. The two of you are old souls and are amazing in every way!
Thank you very much for this perspective tweak. So many people are dealing with difficult physical challenges. Your video is very comforting. 🤗💕🙏
Thank you so much for this. I'm dealing with this issue myself as part of aging with my disabilities and progression of symptoms. Definitely important to adapt, figure out solutions and supports needed, and continue living the life God gave you and find the hope and good in each day.
You two are precious together. 💖...and an important, priceless conversation. You do well to educate those of us who are still able bodied. God bless your journey together. 🙏
This video came at such a perfect time for me to see, THANK YOU. I have always been the carer in our family. My 3 kids have the genetic condition i have (Ehlers Danlos syndrome). I always put their needs ahead of my own and pushed through every pain and injury. Problem is this has not come back to haunt me after a bad fall last year. Only 4 days ago i was assessed for a disability payment. The assessor said that if i was to now need to depend 100% on myself for my care and daily needs i would not survive. They assessed my care needs to that of a person who needs nursing home level care. That was so hard at only 40 years old to accept. But i have accepted that im not the primary carer now and i NEED to ask others for help.
Our family has Ehlers Danlos Syndrome too, Hypermobility 3, which has led to fusion surgeries. We also have Chiari Malformation and POTS. Mine was milder symptomatically until more recently. As caregiver, I've had to learn to take care of me, so I stay healthy for "us". I've had fusion surgery, put off because I was worried about who would help them if I was layed up. I reached out to family and we got thru it with help. Its definitely life changing, but love how Hannah and Shane deal and share their experiences.
Thank you both for sharing your beautiful lives! I have an anxiety disorder and have been experiencing a relapse in increased anxiety recently. I often feel ashamed to ask for help or avoid asking for it because I think I can manage on my own, especially during these difficult times of the pandemic when everyone is struggling, but it helps to be reminded that we all need help sometimes. Thank you, again!
I love you guys. And, I love this episode…probably a favorite. I’m facing lots of change in this phase of my life…and aging mother and an aging husband. The reminder that all change doesn’t have to be viewed as bad is helpful.
I LOVE your channel. I've been "binge watching" your channel this past weekend. The thing that I love, love, LOVE about your channel is how you are sooo HONEST about everything. I also like the fact that certain things are kept PRIVATE and we see the rest! Like when Shane proposed to Hannah. We didn't get to HEAR what he said to the love of his life. That SHOULD be kept for YOUR memories and "private" life! Thanks, guys! Keep up the good work. I know I'll be sure to tune in when you upload a video!!
Thank you guys!!! I have suffered with FSHD MUSCULAR DYSTROPHY, I’m already in a power chair with lots of atrophy aswell, it is so hard, definitely the right people n caregivers are so important, I started finding it hard to raise my arms when I was 7. It is so hard feeling weaker and seeing yourself lose the ability to do what we could do,, Shane your positivity is amazing. Your so blessed to have your beautiful wife💕💕
Thank you for sharing your experience on such an important topic that is often left unspoken! I have a muscle disorder and can totally relate to this feeling of ‘loss’, adapting and change over type.
I was thinking about the exact topic of this video yesterday. I've always wanted to hear more about what comes with age and with the progression of SMA. Thanks for this humorous insight!
Loved this video, thanks for sharing. I'm so happy that you two found each other :-D Being afraid of change and loss is so relatable xo
I've watched every single one of your videos from day one, and I still learn new tidbits about you guys. Especially the things Hannah did to support you (literally!) in the early days! ❤ Love watching you two grow and feel lucky you give us a sneak peek into your lives. Thanks for all the work you do for this channel! 🙂
I have Chronic Fatigue/Fibromyalgia, and I just realized, Shane, that you probably understand the devastating Fatigue I suffer from. I'm so happy for you guys, and the love you have for each other
Great video you guys! Thank you! I love hearing your perspectives on Shane's SMA and also the thoughts Shane has toward it and the way it effects his day to day life. Your advice on change was good too - for anyone. I think we forget how satisfying it can be to help others too, so when we need to ask for help, we automatically expect to be a burden on someone when we may actually be giving them an opportunity to feel good too by being able to offer solutions that we hadn't thought of.
I have severe epilepsy and had such a hard time when I started needing things to help me with basic needs like showering, walking, remembering what drawer has what things. I’ve since come to terms and humor has really helped. I also find my walker and wheelchair so freeing because they let me be able to still go out and do things even when my limbs don’t want to accommodate me. Watching you two has really helped me know that someone could still love me. Plus you guys are so fun and Shane’s humor is the best. Thank you for being so open ❤️
You are both beautiful, refreshing, real people. May blessings abound to your lives.
This is such an important conversation. Thank you for your truth, candor, humor, and love!
Truth. My arse.
This has to be my favorite talk! Hannah is truly a amazing Lady! God has given Shane the perfect partner!
Thank you for covering the topic of how you handled the change when you got weaker. It was helpful for me to hear how you handled it. I really appreciate your videos. You are such an inspiration. On a side note, I enjoyed your introduction of Toodaloo. It gave me a giggle and the product sounds great. I will look into it.
I have been so independent for my entire life, however the last 5 years I have had to speak up and ask for help, and I hope gotten it. Sometimes I forget to ask for help and when I do this I hurt myself, however I have found ways to help me. Right now I am Just in a slump, but like do know that this is just another bump in the road and I will get through it. It's just a really tough time right now. I am so happy that you talked about this. Thank you so much ❤️
Well done for being strong enough to find solutions and ask for help. Realising everything is temporary is a great help on those down days. Hope every bump is a little one for you from now on .
I can tell by your comment that you have the resilience and attitude to adapt and overcome any obstacle you may encounter. So sorry you are going through a rough patch and hope you are on the upswing very soon. Best wishes!
You have to adapt, if not, you won't grow, believe me I have had extremely hard times, and I was very low, however, I kept saying to myself" If there is a will there's a way"".
I live by that every day. Right now going through rough times right now, however hopefully it won't last long. About 10 years ago, I had 5 surgeries in 15 months. That was a lot !!!! Thank goodness I haven't been in a hospital since then. I still suffer pain daily, however I have to accept it and move forward. I thank you for commenting. It seems like every 6-7 years I have something major going on and in between, yes I have my good days and other days I am so hurt I can't move. It's just how life is for me, again " If there is a Will There is a Way" you can't just give up ! Life is way too precious and short for anyone to dwell, I will admit I do dwell at times, but not all the time. You got to find a way to live life and enjoy it- everything that it has to offer.
This past year I was diagnosed with a form of epilepsy which caused an inability to read or focus on things. For I while I was depressed and wasn’t sure how to accept this new way of being. With medication and family support I have turned a corner and am feeling a bit more myself. I really appreciate this video because it expresses so well what I’m trying to do. Accept and adjust. Thank you for sharing this. I hope there are many more Hannah’s out there helping all the Shanes. ❤️
Thank you for this video. Love you guys so much. I am in home hospice care and living out my final time here. Since I am bedbound and have so many limitations CZcams is what helps keep me sane and feeling connected to the world outside of my room. Unbeknownst to you you guys have been a big part of my journey. I'm so grateful for everything you put out into the world & again thank you for this video. I am sending lots of love and light your way thank you for making me smile when at times when it's really hard to.
Reading the Bible will fill you with faith and hope, and will guide you to your real life.
God loves you, sweetie.
✨🕯️✨🙏✨🕯️✨
May God bless you and watch over you every moment of your life. May you find peace and comfort knowing you are loved.
@@edithcortes3833 ❤💜❤💜❤💜❤🙏😇🙂
You guys are a team. I love that. Thanks for sharing ❤️
you guys are so great. Thank you for your willingness to be vulnerable in simple practical relatable ways.
Your videos are put together perfectly. You tell us the topic and then you really get in there and explain how life has brought you to the wisdoms that you're sharing. I just love your communication skills both of you. Excellent.
I've been following you 2 for a couple year and this is the first time I ever commented. First....I love you two. This topic was very relevant to me. I am 67 years old and have been widowed for 18 years. I was a 48 year old widow with 2 sons, (12 and 21 at the time). In 2012, I was FINALLY diagnosed with Primary Progressive Multiple Sclerosis, which is the rarest and most aggressive form of MS. I am an empty nester and need caregivers 7 days a week, which costs me more money than what I have coming in from Medicare and my husbands pension. I lost my mom in July this year, my dad in 2016, and my closest friend in 2018. My sons TRY to help, but both own sport bar and grills and the pandemic has made it so that they have too work continually to keep their business afloat. I have had a lot of loss....my independence being just as difficult as losing my loved ones. I had to give up my driver's license back in 2012. Keeping caregiver during this pandemic has been a huge challenge. I am actually alone today because my caregiver fell down her stairs this morning and is at the hospital. I was told I would never walk again back in 2016 when I fell and broke every bone in my right leg. I can still manage to walk from my living room to my bathroom or bedroom....but can't stand for more than a minute. I have a power chair.....but my house is so small that I can't really use it because it's too hard to navigate. I also do not have a wheelchair van so I have to have someone push me in a transfer chair. I'm not telling you all of this for sympathy. Just want you to know that it is encouraging for me to watch you guys. Thank you guys!
I hope it gets better soon
Hugs from Italy! That's tough...
This video came at exactly the right time for me - I've been gradually declining in health over the last 2 years for as yet unknown reasons (though I have some specialist appointments next month that should shed some light on why!), and I've been having a hard time, especially the last few months, coping with how different my life is now and how I feel less capable. Thank you for this message of how receiving help isn't a bad thing, I really needed it! Hugs to everyone who needed this message too!
I sincerely hope you find the answers soon that will get you on the road to recovery. Any of us at anytime could find ourselves in the same situation, so please try to never worry about asking for help. Most people are kind and willing to help you, especially those who are near and dear to you. Sending prayers and good vibes your way. Take care
Thank you for covering this topic! Very interesting and informative! More of these please!
A perfect picture of LOVE watching both of you. Thanks for sharing!!!!!!
So important for us all. Except help when needed. Thanks again.
I’m just so excited for you kids… the lord has a lot yet for you to do!! You and Hannah make a great team!!
Thanku for being so honest and giving to all of us out here!!! U two are a ray of sunshine in my life and in this world!!!! Modern day saints u both are!!🙏🙏🙏
You two are the best. I love how in love you two are with each other. I wish you both all the best in life ❤
Great video. To often we help others but can't ask for help. I'm glad you listen to Hannah in the way you do. We all need help sometimes.
Shane and Hannah - your wisdom and experience is so appreciated! I’m 18, and I have CP. My Disability Rights and Resources class could really benefit from hearing your perspective. Thank you for all you do! Keep it up! 🙌🏻
Love that sweater, Hannah! Your content is very helpful and always interesting. You are very kind people.❤️
Thanks for taking on this topic! I have a type of MD that doesn't have a treatment yet, and so I look to the SMA community to envision how things might look once treatments are available. To be clear: I'm not at all jealous, and I take great joy whenever a treatment becomes available to any of us. To Shane: learning to to ask for help is a really important skill that it taught me many years to learn, and if Hannah taught you that, she's a really wonderful person indeed.
I love seeing Hannah and Shane again and again! I always watch you guys when I eat meals. I live alone w my dog so you guys keep me company 😄
This is right on time for the changes health/body wise that I've been experiencing in the last few months. Thank you guys!!!
I am struggling with progressive hearing loss…every time I think about it I feel like I have a PTSD type reaction. Your video was very helpful for me to start the process of moving forward.
This was one of your most insightful and thoughtful videos. Asking for help is a struggle, especially when you've spent a lifetime DETERMINED to do as much for yourself as possible. At some point you stop having to be "supercrip" to prove something to yourself. and just resolve to enjoy the rest of the ride.-- Jim
Thank you. I really needed to see this tonight.
When you chat about issues lile these..it helps my husband and I cope with our physical limitations better..THANK YOU..
Thank you for this honest and frank video. You are such a cheery chap Shane, considering you have been through all this. My daughter has a genetic condition causing her persistent chronic pain, also she had to have her thyroid removed 3 months ago...... she’s 18! You are both a shining light 🌞🌻 Keep smiling and giggling life is what we make of it . Loads of love and hugs 🤗❤️🏴
Again, you both had me laughing & crying.
You guys are so amazing. Dealing with this devastating disease with humor and so much courage.
You guys have the best attitude! I love your view of life!
Thank you for your humorous candor.🌸
This is such an important topic! Thank you both! I feel like a lot of us/ most of us ignore loss or change of function, for fear of grieving it, but it is so much better to grieve it AND adapt. I also love how you talked about being creative with the adaptations. I would love to hear about more of such examples. That is such an important part of autonomy - to make things work specifically for you and your body, and to allow yourself to be creative & even have fun with it.
Your willingness to put out the honesty of what was and what it ment is so real and raw. Thank you.
Thanks for this video. I needed it! Wish you guys the best! 💖
I love the green cupboard in the background with the other green of the plant. It’s exciting to look at.
That was a great video. Applies to everyone. Appreciate it.
I also noticed that, I'd love to know what plant that is its so pretty.
Thank you for this video. I have a chronic pain disorder that caused me to lose my nursing career. It was so hard and I blamed myself for the loss of income for my family. It was so depressing. I still have moments where depression takes over.
I completely empathise. I had to give up my teaching career due to ill health and I feel so guilty for the huge drop in income we have.
Me too SHARI. I was a nurse until I was stricken with ill health. I feel like a burden and not a wife.
You guys are amazing ♥️ trying to help other people by giving idea’s that’s awesome ♥️
You two are so inspiring . I enjoy your videos . I love your sense of humor and togetherness. Again thank-you for sharing your lives. Stay safe. Keep those smiles.
I’m so happy you all have each other ❤️❤️❤️❤️
Love you two x I have debilitating arthritis knees, hips, wrists, fingers they now think I have osteoporosis so getting checked for this, obviously not anything close to what you’re going through Shane but I’m struggling to keep up beat as it’s painful 😣 I have recently had my left knee replacement surgery but still trying to get movement back xx I wish you all the best you wonderful people xx
There is a new discovery. Look for it. A cure to rheumatoid arthritis . I read an article last week. Everything will be better. Kind regards from Argentina.
Just what I needed to hear today. Thanks S & Q.
You both are so lovely! I very much enjoy your dynamic, humor, outlook on life and love for the world and each other! Thank you for sharing your world with us!
Hannah, I have to say thank you... Watching such a beautiful person stress about something so silly- like us seeing your bun- when in fact you're gorgeous no matter which way you style your hair or turn your head, made me realize how silly my own insecurities are. 💓
While your body may grow week, your soul & your mind are strong 💪. God bless you, brother.
This subject is one of the best videos so far. So many lifetime principles that can be applied right up until the end of life. Turn the negatives into positives and give others a chance to extend their love and care to you. Every single person will be in that place if not today certainly someday ahead. So get used to it and enjoy it and and give good vibes wherever you are. Older people are prone to complaining about what they cannot do any more. We need to rejoice everyday in what we can do and what we have. I am 83 years old and live on a farm in Alaska and I know what I am talking about. I used to be strong and agile. Now I am weaker and not as facile. But I can get up every day and do stuff. Yay!!! Sean and Hannah your lives are so rich and you are making everybody else's life very rich as well. Keep doing what you are doing. The body is only the interface of the soul and spirit. You both have beautiful souls and beautiful spirits. That's what lights of the world. And your genuine simple glowing love for each other leaps out of the computer screen. Thank you both for what you are bringing to you bringing to humanity in this dark hour.
Love you guys , I love how your both there for each other .
🌸💕 Am sure the unknown could be quite scary but thankfully y’all have each other to lean on for support…You two are one of the best examples of true love 💕 Some able bodied couples don’t even lean on each other for support,so kudos to y’all…I love watching your videos they are always uplifting and sweet…something that we all need more of…Much love 💕 New Orleans 🎭🎷🎭
Love this message and conversation. 💕
I have always been so proud, and have been soooo independent, that when faced with loss, grief, or any emotional turmoil, I have learnt to always just throw myself into work(I am a nurse)... I ignore my own pain, and carry on with life, ignore what is happening, and listen and support everyone else.... Mr nice guy syndrome.. The wanting to please everyone, take on all others problems, and ignore and deny my own... It is only recently that I have started to voice my own needs, say no, and ask for help myself... And to realize this is a sign of strength, and not weakness... Fabulous you guys, may you go from strength to strength in all areas of your life.. You are truly inspirational....
Thank you so much for this video. I have Muscular Dystrophy, and it’s always hard to deal with loss of muscles and losing ability to do things.
I will keep you in my prayers...I am sorry you have to deal with that:(.
What do Marines say? Improvise, adapt, overcome? Shane, you are as tough as the toughest Marine.
👍
And far nicer than nearly every marine I've ever met
Rip to our 13 brave Marines who who murdered in August. Rylee McCollum's baby girl who was born three weeks after he was killed is beautiful ❤️
really nice comment! xoxoxo
Great topic! You addressed it very well!
Thank you for this. It has been very helpful!