I'm an RN. I've been subscribed to your channel for a while now. I'm surprised that this is Shane's first pressure ulcer. I'm concerned about his left elbow resting on the arm of his chair and his right side resting against the side of the chair. I encourage both of you to learn as much as you possibly can about pressure ulcers, how to prevent them, ways to treat them and when to get help before it's a huge problem. They never really go away. Using donuts to relieve pressure in one area actually creates pressure somewhere else. As difficult as they can be to prevent, they are infinitely harder to heal. Please be safe and well!
They talk about in a lot of videos how they move him to prevent bony areas from sitting in one place plus have the gel pack on the chair to prevent them. Considering he has been in a wheelchair a majority of his life and he is only just now getting a minor pressure ulcer probably means they do a pretty good job at preventing them. -Another RN.
Thank you! This has been worrying me ever since the episode about his malfunctioning w/c cushion. Shane, I highly encourage a tilt-in-space option on your w/c to help offload every 30 minutes when you're up in your chair. I also realize that a big part of this is a faulty medical system that only covers a w/c every 5 years... you should also qualify for a better cushion now that you have skin breakdown (horrific that this has to occur before you qualify, but it healthcare system at work once more). I hope y'all can get ahead of this problem quickly!
@@madelynhope4638 Agreed. -Another RN *sounds like the new RN wanted to just throw her title out there to say, "Oh, hey I'm an RN...I've got everyones attention now." Lol
Wound Healing RN here. I've also been watching for awhile and have been concerned. Given rhat Shane has been pressure ulcer-free until now is remarkable. The daily adjustment of the gel pad will make a difference but if it doesn't you could try a Roho cushion. After working 8 years in wound healing with alot of paralyzed veterans I've seen the best prevention are the Roho cushions. They are individual rubber cells in a mat. They adjust to movement providing constant support. Preventing pressure ulcers is critical to Shane's care. Please stay on top of this issue. Read up on how to prevent them and what to look for. A small problem can quickly become a major one. Thank you for being so open and honest about your lives. You two are so personable and I love following you.😊💕
@@jillsmith633 yeah. I don't think Shane nor Hannah are aware that people die from pressure sores and they don't have to be bad from the beginning for that outcome.
I'm so glad you had your evaluation just in time!!! Keep offloading. Pressure ulcers start from the inside out so even if the skin isn't red anymore really baby those spots. Getting out of the chair for an hour or two mid day would be best. Shane is so thin he could go from Stage I to Stage IV really quickly. I work in wound care and see lots of young people with pressure sores and they can be devastating.
It really is allllll about the $$$$ in today’s medical system. Even “non profit” hospitals and all other non profit organizations are in it for the $$$$$$. Do not be fooled, someone, somewhere is getting rich and putting pressure on those ‘below’ them to make sure the profit margins are high. I’ve worked for a non profit hospital and a non profit organization and I’ve seen and heard too much. This world is upside down.
@@TriforceOfCourage97 I see stuff like "I am against the social healthcare model but please share this link raising money for a stranger's medical bills..." on the internet all the time. One day I hope they will see the irony.
Breaks my heart to hear all the roadblocks insurance puts up.... anyone who has a chronic disability, such as Shane, should have a free pass to a new chair due to the length of time he’s had his current one. My dad just replaced his 10 year old chair but we’re in Canada so it wasn’t such a gruelling process.... Thanks for checking on his pressure sores Hannah! You’re a great wife 💕💕💕
@@harrypotter7291 hmm. Then you have no humanity in you. People born with disabilities both mental and physical and elderly and chronically sick need a human hand. Everyone needs a hand by someone at some point in their lives. Remember we are all can connected and interdependent on each other.
@@harrypotter7291 you have got to be freaking kidding me. Do some research you will see CEOs taking multimillion dollar bonuses. Educate yourself. Capitalism sucks in the healthcare area. Just a cover for heartless greed.
@@harrypotter7291 Tomorrow you could be in an accident rendering you wheel chair bound for life. Would that change your mind? Who are you referring to when you say a "non productive member of society"?
Nurse here. Glad to hear you are closely monitoring the pressure areas. Full skin breakdown can actually occur in 8 hours! And you REALLY do not want that!
As a private nurses aide pressure sores take a long time to heal and to prevent infections. I pray Shane you get better soon and if possible have a wound specialist to take a look.
I’m a nurse and have seen many pressure sores that can have detrimental effects! I’m so glad your doctor asks those questions and is proactive about your care. I hope you can get your wheelchair soon Shane!
So I'm a nurse. You can rub the area not hard but some to improve circulation. You should change his position every 2 hours. You can also find pads and other things to cushion. Even like laying/picking him up. Hope this helps!
And from Jupiter. A bit lonely here, but it was lonelier in Ohio. Get the best chair you can, bro. I think Medicare will only pay for one every like 100 years!
@@meltingpointcreations1457 , I’m not questioning Hannah’s great care. As someone who spent weeks in a rehab and 7 months with an open sore and wound vac in my back because 2 drs missed an infection after surgery, I think it’s always important to caution any person how quickly a wound can go sideways. I meant no disrespect.
I am a fellow wheelchair digger. I gave up on insurance and paid for my mother’s new wheel chair. Had her try out five or six and she chose the one she liked best. Got home and a day later she decided she did not like it. Did I mention the wheel chair store was 60 miles from home? She never liked any of them. Hope Shane’s new ride is great!
This is absolutely maddening that it has to be an uphill battle for people with disabilities to get what they obviously need to live productive and semi-independent lives with some amount of dignity. I applaud you both for getting in there and fighting so hard but always with such appreciative hearts. You guys are gold!
I remember discovering your blog on Tumblr what must have been almost 10 years ago. The posts were mostly really funny and entertaining stories and it was immidiately apparent how talented you are at writing. But I also remember you talking about hard topics like life span prognosis, fear of getting pneumonia. And like the blog said, it some of it sounded like a nightmare. It really affected me. It's amazing to see how life has turned out for you and your family. I'm really happy that you decided to share your journey. And really funny stories.
I second the pain free summer for Shane 😍. I hope you don’t have to wait too long for your new chair, you will have fun with all the new technology and with your robot arm you will be unstoppable ❤️❤️❤️
My cousin died from sepsis after getting a pressure sore. I’ve had other friends with serious pressure sores, too. I really hope yours is able to heal.
I’m a para (20yrs) I got a grade 4 in bone infection and sepsis from my shower chair , I still have it 6yrs on 🥲🙄 had lots surgery that made it bigger 🤦🏻♂️😂 it’s now 1cmx1cm .. 6yrs on bed rest has been harder that being paralysed 🥲🥲 good luck Shane from Wales 🏴👍🏻👍🏻
I’m so sorry to hear, I can’t even image how hard it must be, I complain about any little aches and pains that’s why I love watching Shane and Hannah, Shane makes me realise that people go through much worse and cope and make the most of the situation. I feel for you and and pray you get some comfort, sending you blessings from SA 🙏
Sorry to hear about your sores but I think the fact this is the first time is a testament to the excellent care you have received from your parents and Hannah. My late mother-in-law lived the last 2@ years of her life as a paraplegic and had to deal with not only pressure sores but, in the last 10 years of her life, broken bones in her legs (because she couldn’t feel it when it happened). These sores are nothing to mess around with! I hope you heal quickly, Shane.
Actually a stage I pressure sore has no skin breakdown, only is red and unblanchable. Stage II is when the skin is broken. Stages III and IV are even deeper.
@@cindykrueger3663 Technically any stage pressure sore (1-4) are skin breakdown. Lack of bloodflow > 15 minutes to an area starts breakdown (tissue ischemia and cell death starting). And there's also a deep tissue injury (DTI) that one never knows the full extent of skin breakdown! All serious stuff.
Hannah, it's finally time! Time for you to have Shane's old wheelchair, which (as we all know, thanks to Paula) is what you really want from this relationship. Congratulations. 🤣🤣🤣🤣
Oh no....I hope you heal soon! I'm really surprised you've never had a pressure sore. Just because of your chair and the fact that you're so small and thin. I really hope that didn't offend you. I really, truly love and admire you and Hannah so so much. I've been here with y'all a long time and it's been beautiful to watch the love that has grown in your relationship. Much love to yall!!!
Can't Hanna just dig up a new wheelchair for Shane from somewhere? 🤣 On a serious note, I hope Shane's better. My grandpa had those sores and he was always complaining about them, it broke my heart because there's little we could do at that point.
Shane, I thought the same this as you about my gel insert in my wheelchair seat cushion. I only recently found out you’re supposed to adjust it every day, and it is so much more comfortable and supportive now.
Hi! We are grandparents at 66 years young of 11 grandkids and 3 great grandkids. We love you guys so much that our family thinks we should adopt you both. Blessings on getting all your problems fixed.🤟🎈
Your laughter is contagious! You two are just perfect together! I pray for you Shane for your sores to heal fast and for hannah to keep her sanity! I know a new wheelchair cant come fast enough!!
I am so thankful for the 2 of you to show how hard it is for the necessities that people need to help them get through the day. I support 2 people who have intellectual disabilities in my home. One lady has recently needed to start using a wheel chair an we need a ramp which the government will not pay for because it is not necessary. Thank you for your videos
Can I say, never have I been more grateful for the NHS in the UK, they were great for us when my mum needed a new chair, on a different note Hannah don't show your mum best fiends you know she will get addicted 🤣
I'm a nurse who works often with spinal cord injury and stroke patients who often have limited mobility issues. Daily skin checks over the whole body are very important when mobility is limited. I hope Shane feels better soon
So appreciate your honesty in sharing. I’m a retired nurse and have worked with many patients dealing with pressure sores. Sounds like you are both staying on top of things and the technicians at the clinic sounded awesome! Hopefully you will get an updated wheelchair very soon.
Thank you so much for taking such good care of these very serious issues! I was a caregiver for most of my adult life and at times I was downright scared. You two are so level headed and I thank God that you have each other.
The more I see how difficult things are for you in terms of getting equipment the more thankful I am to work for the VA as at occupational therapist. I am able to obtain any DME needed for the Veterans I serve if it is needed. It’s a fairly easy process. It has been great. We also have an OT that specializes in wheelchair fitting and orders all wheelchairs and adaptive devices. I hope your wheelchair gets approved quickly.
@Jimena T VA is the Veterans Administration. I work for the VHA the Veterans Health Administration. I work in the Home Based Primary Care (HBPC) program where we serve Veterans in their homes. They have a whole team that comes to them: A doctor, a nurse, an OT OR PT, a dietician, a Social Worker, a psychologist if needed. It is an amazing program and I feel super blessed to have this job and to get to serve Veterans.
@@annjames1837 yes this can be the case....but I still appreciate having the NHS......free emergency care via A and E....free health care checks such as breast screening, bowel screening, free to visit the GP, free consultant visits and ongoing care for cancer patients etc . Nothing is perfect of course but I am still thankful to live in a country where we have this type of care. Of course there is private care if we choose to use it and pay for it.
I absolutely agree, however it doesn’t cover as much as you’d expect once you get to the blurry edges of chronic illness / complex disability equipment. I’ve had to pay for my electric wheelchair as my needs are outside the bounds of an nhs prescription for a chair. It’s coming to the end of its life and I’m not sure what comes next eeek!
As someone who uses a power wheelchair, I have gone through three in my life and every time it has been hell going through insurance. I really do hope you have a smooth transition to a new chair and that your pressure sores go away.
You two are adorable together. It makes me so happy to see you together. It looks like Shane has a bit of a sunburn on his face. Please keep being you and loving each other the way you do.
Honestly.... Just thank you. Thank you thank you thank you!!!! For being so damn refreshing ! Thank you. Ughhh! It feels..... So good watching you two. You add much happiness to my pained life. I truly value you sharing and being so transparent. When you never needed to begin with. I know the impact and have received that gift. Thank you with ALL of my heart.❤❤❤❤
@@karenblaine7266 funnily enough, I got mine at a quilting store! My autistic son used it a TON when he was younger. I looked on Amazon and saw it under “purple seat cushion quilt” and found it. This purple cushion might be totally different from what the original commenter was meaning, though.
Pressure sores are very common for people in wheelchairs who have Spina Bifida, SMA or Paraplegia in general. As someone who sits in my wheelchair 75% of the time, I have to watch for sores all the time. Keeping off of it and eating enough proteins is very important for both prevention and healing!
I'm so glad you guys stay so on top of taking care of pressure sores before the skin gets broken. I worked as a CNA and some of the pressure sores I saw horrified me, especially in facilities that didn't take very good care of their patients, so incredibly sad.
It’s ridiculous that you have to jump through all those hoops for insurance, but I am so thankful you’re on the mend with the pressure sores! I cannot wait to see you wheeling your way about town in your new chair in a few months! Many prayers for healing and quick turn around from insurance!
Yes, I looked after my elderly aunt for 7 years until she passed at the great age of 101 years. She had a similar mattress and we used to put cream on her too. It also helped that, with a Walker, she was fairly mobile so the blood could easily circulate, more difficult if the person is bed bound.
Who would have thought it would be so hard to get a wheelchair, when it’s so obviously needed. I hope things go through quickly and they don’t give you a hard time about it? Bless you both. 💕💕💕
I’m a nursing student and have seen pressure sores that was a stage 4 where i have seen bone and muscle feeling it and it can get so bad. They can progress fast if you don’t properly take care of them. I hope you get to feeling better Shane! :)
I am applying for disability today. Hearing what all you go through gives me strength to know that it is ok to “fight” for what I need. I wish you a pain free summer! 😎
I am amazed at what you guys need to go through. Crazy ridiculous. I think they should make a head rest so that Shane's head can rest easy if he wishes. What the heck?? Happy that you are going through this process, you deserve something that is comfortable and works properly. Be well :)
Pressure sores are not only caused from the chair but also caused from not being moved around enough to relieve pressure. Hannah and yourself need to do pressure relief daily.
@@cynicalbeauty18 exactly right. Luckily in Shane’s case it’s very simple because he is small. My mom and I had to do this for my dad when he was in his last few weeks of his life. Even though my dad post a ton of weight it was still hard in my back, I was pregnant at the time so it didn’t help. I’m just happy that they know the solution to relieve pressure. Although, I still think Shane should have been doing more moving throughout the day. He must have had pain seeing how the gel seat was completely flat on spots. But I also don’t know how long Shane sits in his chair throughout the day I mean when Hannah went to college I’m assuming Shane was on his chair the whole time she was gone. Anyways all that matters now is they make sure the areas don’t open that is hard to heal and very painful. My dad was in a care home for sometime and I got a glimpse into how painful bed sores became. Some elderly people that had no family to make sure they were being cared properly and the staff there weren’t the best. My mom actually started decorating everyone’s rooms for holidays and different seasons and started visiting many people who had no one. It was so sweet to see their eye light up when my mom walked in enough decorations or just to chat. Man the stories they. Had were crazy too, some loved such adventurous lives.
You do such a good job of explaining issues you deal with rationally...and then you pop up with a chuckle as a defensive mechanism for the absurdity of it all. Best of luck!! Pressure sores were the bane of my brother's existence since as a paraplegic he couldn't feel them. My dad used to say that they were just cleared up and then he went into the hospital where they emerged again.
As a chronic pain patient, the amount of pain you’ve just had to learn to live with, makes me sad. Imagine denying a wheelchair to someone who literally spends nearly every waking hour of their life in one.
The people who work in insurance companies seem to not have a heart or they are “just following the rules”, either way it’s so crappy. Like you said how can anyone see and hear Shane’s life history/story and still think oh he doesn’t need a decent wheelchair that one still holds him in a seated position so that’s enough. It’s sad and makes me so upset, frustrated, and angry.
4 and a half years after a long post-surgery debacle, I'm *still* dealing with the lingering issues surrounding my worst pressure sore (I was bed-ridden for 3 months). I'm glad you are taking them seriously and finding some relief. Good luck with your new wheelchair and insurance process!
Get well soon Shane. I am sending positive thoughts your way that you will have a pain free summer and that the process of getting your new wheelchair will go smoothly.
It is crazy that you have to fight the insurance for everything. A wheelchair is a necessity for Shane. I am so glad that you received help adjusting your wheelchair to make it more comfortable for you.
As an OT myself, I loved hearing you talking about our profession, that so few know about. It's crazy what it takes to get everything approved through insurance.
I don’t normally comment on a lot of videos. But since your hilarious reading of Paula’s rude and mean comments, I’m like- “Oh, look! Wheel Chair Digger. Has a new. Video.” (Punctuation added as per The Paula comments!😂)
HAHAHA THE PUNCTUATION MADE ME GIGGLE OUT LOUD HEHEHE! :) I still keep imagining "wheelchair digger" as an attachment for the robot arm, so I've got this mental image now of Shane working at a construction site, digging holes with his Jaco arm (with some sort of fancy digging attachment hehe)
I hope you get everything you need Shane 😊 Hannah your so patient and supportive you can see the love you both have for each other 🥰😍 don’t listen to the people that are negative Nancy’s . Keep staying strong you two 🙏🏻🙏🏻😍
If you watch some of their travel videos, they are adorable when they are driving. She automatically either supports his head through turns and stuff or puts it back level when it falls. It's so knee-jerk, it's sweet. 💚
Shane--I understand. In 2010 I got a spinal infection and spent 9 months flat in a bed in the hospital. Even though I was in one of those 'air beds' I still got coccygeal pressure sores periodically. You and Hannah are too valuable to our world, please keep those of us who care, informed.
My life has been a struggle from birth but thanks to God and pure stubbornness I made it to 61 yrs old. I suffer severe depression/anxiety syndrome and I am a recluse. The one thing that has made it more bearable is your show. You both make me laugh and smile and your love for eachother is beautiful bright and from God I believe that.
I remember you talking about Shane's cusion not holding it's form. Is it because of that? Thoughts and prayers out to Shane's butt. That really stinks.
I’m currently waiting for approval for an $8,000 wheelchair part that is 100% necessary but we’ll see if the government will give it to me. Fingers crossed because it could potentially give me my life back. Without this, I’m stuck at home and in bed 24/7.
First, I too am a Fiends addict. Second, I began as a caregiver in 1977. You should have seen how we treated pressure sores in those days! And, congrats on the new chair!!
The insurance would much rather pay for the new wheelchair, than to cure pressure sores. Please take care of those. Sending prayers for you and your comfort.
I’m a Type1 diabetic and have been for 54 years yet when I went on Medicare I had to do a blood test to prove I was diabetic so they would pay for the medical equipment that keeps me alive. So crazy. I’m excited for the upcoming new chair.
I’m a type two diabetic and the hassle with getting the Libra sensor kit. And I don’t the prick my finger anymore. Medicare had us jumping through hoops. Finally my doc had to go through a huge mess to get for me. The time it took was awful. I don’t know why it should take so much to get it done. Oh yeah I also had to get lab work to make sure I was a diabetic it was like I was trying to rip them off.smh
I had a pressure sore and was bed bound for 3 years, I now have a pressure cushion for my wheelchair. Now I had to have a mattress that has a motor to move the mattress
Ooh - yes. Good idea about a mattress change - whether it's a gel overlay, air mattress or clinatron mattress. Just causes less stability with sleeping - but definitely another good idea to consider outside the wheelchair!
I'm an RN. I've been subscribed to your channel for a while now. I'm surprised that this is Shane's first pressure ulcer. I'm concerned about his left elbow resting on the arm of his chair and his right side resting against the side of the chair. I encourage both of you to learn as much as you possibly can about pressure ulcers, how to prevent them, ways to treat them and when to get help before it's a huge problem. They never really go away. Using donuts to relieve pressure in one area actually creates pressure somewhere else. As difficult as they can be to prevent, they are infinitely harder to heal. Please be safe and well!
They talk about in a lot of videos how they move him to prevent bony areas from sitting in one place plus have the gel pack on the chair to prevent them. Considering he has been in a wheelchair a majority of his life and he is only just now getting a minor pressure ulcer probably means they do a pretty good job at preventing them. -Another RN.
Thank you! This has been worrying me ever since the episode about his malfunctioning w/c cushion. Shane, I highly encourage a tilt-in-space option on your w/c to help offload every 30 minutes when you're up in your chair. I also realize that a big part of this is a faulty medical system that only covers a w/c every 5 years... you should also qualify for a better cushion now that you have skin breakdown (horrific that this has to occur before you qualify, but it healthcare system at work once more). I hope y'all can get ahead of this problem quickly!
@@madelynhope4638 Agreed. -Another RN
*sounds like the new RN wanted to just throw her title out there to say, "Oh, hey I'm an RN...I've got everyones attention now." Lol
Wound Healing RN here. I've also been watching for awhile and have been concerned. Given rhat Shane has been pressure ulcer-free until now is remarkable. The daily adjustment of the gel pad will make a difference but if it doesn't you could try a Roho cushion. After working 8 years in wound healing with alot of paralyzed veterans I've seen the best prevention are the Roho cushions. They are individual rubber cells in a mat. They adjust to movement providing constant support. Preventing pressure ulcers is critical to Shane's care. Please stay on top of this issue. Read up on how to prevent them and what to look for. A small problem can quickly become a major one. Thank you for being so open and honest about your lives. You two are so personable and I love following you.😊💕
Use duoderm on those pressure points to keep from further breakdown
As someone who is in a wheelchair and has almost lost a leg because of pressure sores, it is no joke. Please get well soon brother!!
It really isn't a joke. It is serious.
I hope you are doing well. I'm so sorry you went through that.
So sorry you went through all that. Wishing you all the best.
Scary and painful!
@@jillsmith633 yeah. I don't think Shane nor Hannah are aware that people die from pressure sores and they don't have to be bad from the beginning for that outcome.
I'm so glad you had your evaluation just in time!!! Keep offloading. Pressure ulcers start from the inside out so even if the skin isn't red anymore really baby those spots. Getting out of the chair for an hour or two mid day would be best. Shane is so thin he could go from Stage I to Stage IV really quickly. I work in wound care and see lots of young people with pressure sores and they can be devastating.
Shane: Literally cannot tilt his head back
Insurance: Is he even disabled
The fact that Shane didn’t say pressure sore safari in his Australian accent that we all know and love feels like a missed opportunity
It’s crazy how you have to fight for something you really need. Insurance has to start listening to the one needing it and their doctors.
They will listen when we make them and not before
No iiish!!
It really is allllll about the $$$$ in today’s medical system. Even “non profit” hospitals and all other non profit organizations are in it for the $$$$$$. Do not be fooled, someone, somewhere is getting rich and putting pressure on those ‘below’ them to make sure the profit margins are high. I’ve worked for a non profit hospital and a non profit organization and I’ve seen and heard too much. This world is upside down.
only in murica
@@TriforceOfCourage97 I see stuff like "I am against the social healthcare model but please share this link raising money for a stranger's medical bills..." on the internet all the time. One day I hope they will see the irony.
Breaks my heart to hear all the roadblocks insurance puts up.... anyone who has a chronic disability, such as Shane, should have a free pass to a new chair due to the length of time he’s had his current one. My dad just replaced his 10 year old chair but we’re in Canada so it wasn’t such a gruelling process....
Thanks for checking on his pressure sores Hannah! You’re a great wife 💕💕💕
@@harrypotter7291 hmm. Then you have no humanity in you. People born with disabilities both mental and physical and elderly and chronically sick need a human hand. Everyone needs a hand by someone at some point in their lives. Remember we are all can connected and interdependent on each other.
@@harrypotter7291 crybaby
@@harrypotter7291 what are you talking about? Shane is rich. Hannah knows what’s up she’s a professional wheelchair digger.
@@harrypotter7291 you have got to be freaking kidding me. Do some research you will see CEOs taking multimillion dollar bonuses. Educate yourself. Capitalism sucks in the healthcare area. Just a cover for heartless greed.
@@harrypotter7291 Tomorrow you could be in an accident rendering you wheel chair bound for life. Would that change your mind? Who are you referring to when you say a "non productive member of society"?
Nurse here. Glad to hear you are closely monitoring the pressure areas. Full skin breakdown can actually occur in 8 hours! And you REALLY do not want that!
As a private nurses aide pressure sores take a long time to heal and to prevent infections. I pray Shane you get better soon and if possible have a wound specialist to take a look.
I’m a nurse and have seen many pressure sores that can have detrimental effects! I’m so glad your doctor asks those questions and is proactive about your care. I hope you can get your wheelchair soon Shane!
It's frustrating to hear how difficult insurance companies make it for people, but I'm very happy that you're getting a new chair eventually :)
Yeah they like to collect money but fish out dirt
So I'm a nurse. You can rub the area not hard but some to improve circulation. You should change his position every 2 hours. You can also find pads and other things to cushion. Even like laying/picking him up. Hope this helps!
No, no, no you do NOT need pressure sores! I hope you can get a new chair soon! Love from northern Portugal! 💗💙
And from Lisbon as well ❤️
And from Jupiter. A bit lonely here, but it was lonelier in Ohio. Get the best chair you can, bro. I think Medicare will only pay for one every like 100 years!
It’s disgraceful how hard you have to fight to get the support and equipment needed. Hope you won’t wait too long for your new chair. ❤️
I agree, take pressure sores seriously. They can go very bad very quick.
Luckily, Shane has such a magnificent caregiver, and they have such a high level of communication that they’ve been able to address it right away!
@@meltingpointcreations1457 , I’m not questioning Hannah’s great care. As someone who spent weeks in a rehab and 7 months with an open sore and wound vac in my back because 2 drs missed an infection after surgery, I think it’s always important to caution any person how quickly a wound can go sideways. I meant no disrespect.
I wasn’t implying any disrespect from you. Just making conversation about how good it is that they have one another to fix problems quickly.
Yes literally overnight they can change for the worse.. I use to work for hospice and I’ve seen several that developed from hospital stays.
I am a fellow wheelchair digger. I gave up on insurance and paid for my mother’s new wheel chair. Had her try out five or six and she chose the one she liked best. Got home and a day later she decided she did not like it. Did I mention the wheel chair store was 60 miles from home? She never liked any of them.
Hope Shane’s new ride is great!
Noo, I am in the medical field, I pray everything is heals quickly. Pressure sores suck.
And they take forever to heal once they become an open decupitus
Ulcer.
This is absolutely maddening that it has to be an uphill battle for people with disabilities to get what they obviously need to live productive and semi-independent lives with some amount of dignity. I applaud you both for getting in there and fighting so hard but always with such appreciative hearts. You guys are gold!
You really shouldn't have to fight for everything like that. It's awful. I am amazed you both manage to stay so positive. Hugs x
Courtesy of the American healthcare system that too often provides neither health nor care
I remember discovering your blog on Tumblr what must have been almost 10 years ago. The posts were mostly really funny and entertaining stories and it was immidiately apparent how talented you are at writing. But I also remember you talking about hard topics like life span prognosis, fear of getting pneumonia. And like the blog said, it some of it sounded like a nightmare. It really affected me. It's amazing to see how life has turned out for you and your family. I'm really happy that you decided to share your journey. And really funny stories.
I second the pain free summer for Shane 😍. I hope you don’t have to wait too long for your new chair, you will have fun with all the new technology and with your robot arm you will be unstoppable ❤️❤️❤️
My cousin died from sepsis after getting a pressure sore. I’ve had other friends with serious pressure sores, too. I really hope yours is able to heal.
"It's not my fault, that I can focus on more than one thing at once" LOVE IT, GO GET-EM HANNAH !!!!
What a great TEAM you both make together!!!!!!!!!!!!!!
We should all be so lucky 🍀
I’m a para (20yrs) I got a grade 4 in bone infection and sepsis from my shower chair , I still have it 6yrs on 🥲🙄 had lots surgery that made it bigger 🤦🏻♂️😂 it’s now 1cmx1cm .. 6yrs on bed rest has been harder that being paralysed 🥲🥲 good luck Shane from Wales 🏴👍🏻👍🏻
Herculean effort sir. Keep up the fight!
That sounds awful, I’m so sorry, Sending healing thoughts to you
Thinking of you when on bed rest myself
I hope you get better and every day. That sounds terrible! Sending you my best wishes for your recover. 0_0
I’m so sorry to hear, I can’t even image how hard it must be, I complain about any little aches and pains that’s why I love watching Shane and Hannah, Shane makes me realise that people go through much worse and cope and make the most of the situation. I feel for you and and pray you get some comfort, sending you blessings from SA 🙏
Sorry to hear about your sores but I think the fact this is the first time is a testament to the excellent care you have received from your parents and Hannah. My late mother-in-law lived the last 2@ years of her life as a paraplegic and had to deal with not only pressure sores but, in the last 10 years of her life, broken bones in her legs (because she couldn’t feel it when it happened). These sores are nothing to mess around with! I hope you heal quickly, Shane.
It’s like Shane going from a 2014 car to a brand new 2021 model. I can see how you’d be excited!!!
I love you two. Shane is smart and has such a great sense of humor, no wonder Hannah loves him.
Pressure sores are no joke... you need to try do more pressure relief, just don’t let it go septic
Actually a stage I pressure sore has no skin breakdown, only is red and unblanchable. Stage II is when the skin is broken. Stages III and IV are even deeper.
@@cindykrueger3663 yeah I know, I’ve dealt with them myself
@@cindykrueger3663 q
@@cindykrueger3663 Technically any stage pressure sore (1-4) are skin breakdown. Lack of bloodflow > 15 minutes to an area starts breakdown (tissue ischemia and cell death starting). And there's also a deep tissue injury (DTI) that one never knows the full extent of skin breakdown! All serious stuff.
Sepsis
Shane has such a great sense of humor. Being in pain makes me cranky. God Bless
Hannah, it's finally time! Time for you to have Shane's old wheelchair, which (as we all know, thanks to Paula) is what you really want from this relationship. Congratulations.
🤣🤣🤣🤣
I can see it now Hanna and Shane having wheelchair races in the neighborhood👩🏼🦼🧑🏻🦼
🤣🤣🤣🤣🤣
yes i know theyre just milking it now have a look at my comment above
Oh no....I hope you heal soon! I'm really surprised you've never had a pressure sore. Just because of your chair and the fact that you're so small and thin. I really hope that didn't offend you. I really, truly love and admire you and Hannah so so much. I've been here with y'all a long time and it's been beautiful to watch the love that has grown in your relationship. Much love to yall!!!
I can’t wait for Shane to get his new chair! Hoping it happens sooner than you expect.
Shane please, please, please pay closer attention to your pain.💖I care about you. Please take care of yourself.💖
It’s unbelievable how hard it is to get what you need when going through insurance. Good luck 👍
Can't Hanna just dig up a new wheelchair for Shane from somewhere? 🤣
On a serious note, I hope Shane's better. My grandpa had those sores and he was always complaining about them, it broke my heart because there's little we could do at that point.
I spit wine on the keyboard at the first sentence. lol
🤣🤣🤣
🤣😂🤣😂
This is gold
Shane, I thought the same this as you about my gel insert in my wheelchair seat cushion. I only recently found out you’re supposed to adjust it every day, and it is so much more comfortable and supportive now.
Hi! We are grandparents at 66 years young of 11 grandkids and 3 great grandkids. We love you guys so much that our family thinks we should adopt you both. Blessings on getting all your problems fixed.🤟🎈
Offloading is key from this Wound Care Nurse! Good job!
Your laughter is contagious! You two are just perfect together! I pray for you Shane for your sores to heal fast and for hannah to keep her sanity! I know a new wheelchair cant come fast enough!!
Sounds like the professionals at the wheel chair appointment were amazing . Glad the pressure sores are on the mend ☺️
I am so thankful for the 2 of you to show how hard it is for the necessities that people need to help them get through the day. I support 2 people who have intellectual disabilities in my home. One lady has recently needed to start using a wheel chair an we need a ramp which the government will not pay for because it is not necessary. Thank you for your videos
You made me laugh out loud with the "Pressure sore Safari " comment!!
Can I say, never have I been more grateful for the NHS in the UK, they were great for us when my mum needed a new chair, on a different note Hannah don't show your mum best fiends you know she will get addicted 🤣
I love how y’all stay so positive! Love watching you guys! 💜 Shane’s books came in the mail 2 weeks ago and they are all read already! Loved them.
I'm a nurse who works often with spinal cord injury and stroke patients who often have limited mobility issues. Daily skin checks over the whole body are very important when mobility is limited. I hope Shane feels better soon
Awesome that the doctors were able to be so helpful! Glad you're feeling better ❤
Glad you guys discovered this pressure sore and are taking care of it. Wishing you a prompt recovery.
Oh no! I hate pressure soars. I hope you can heal up quickly! Praying for you
So appreciate your honesty in sharing. I’m a retired nurse and have worked with many patients dealing with pressure sores. Sounds like you are both staying on top of things and the technicians at the clinic sounded awesome! Hopefully you will get an updated wheelchair very soon.
My God, what a close call. Glad you're ok. Pressure sores are a pain in the butt
Ba dum ch
Thank you so much for taking such good care of these very serious issues! I was a caregiver for most of my adult life and at times I was downright scared. You two are so level headed and I thank God that you have each other.
The more I see how difficult things are for you in terms of getting equipment the more thankful I am to work for the VA as at occupational therapist. I am able to obtain any DME needed for the Veterans I serve if it is needed. It’s a fairly easy process. It has been great. We also have an OT that specializes in wheelchair fitting and orders all wheelchairs and adaptive devices. I hope your wheelchair gets approved quickly.
Thank you for serving our veterans! 👏👏👏🤝
What is VA?
@Jimena T VA is the Veterans Administration. I work for the VHA the Veterans Health Administration. I work in the Home Based Primary Care (HBPC) program where we serve Veterans in their homes. They have a whole team that comes to them: A doctor, a nurse, an OT OR PT, a dietician, a Social Worker, a psychologist if needed. It is an amazing program and I feel super blessed to have this job and to get to serve Veterans.
@LuAnn M. Thank you. I’m the lucky one that gets to serve those who served. ❤️
@@charlottetacy6729 I have to agree 😉 However, they are also lucky to have you. You actually CARE what happens to them. ❤
Thank god for our NHS here in England ❤️. Good luck and hopefully it won’t take as long as you think!
Yes this makes me appreciate medicare in Australia which is the aussie nhs
Have a friend from England that now lives in the States. His family member had to wait over a year for surgery from the NHS.
@@annjames1837 yes this can be the case....but I still appreciate having the NHS......free emergency care via A and E....free health care checks such as breast screening, bowel screening, free to visit the GP, free consultant visits and ongoing care for cancer patients etc . Nothing is perfect of course but I am still thankful to live in a country where we have this type of care. Of course there is private care if we choose to use it and pay for it.
@@annjames1837 at least they got the surgery. I'm America is to damn bad of you don't have the money.
I absolutely agree, however it doesn’t cover as much as you’d expect once you get to the blurry edges of chronic illness / complex disability equipment. I’ve had to pay for my electric wheelchair as my needs are outside the bounds of an nhs prescription for a chair. It’s coming to the end of its life and I’m not sure what comes next eeek!
As someone who uses a power wheelchair, I have gone through three in my life and every time it has been hell going through insurance. I really do hope you have a smooth transition to a new chair and that your pressure sores go away.
So frustrating!
You two are adorable together. It makes me so happy to see you together.
It looks like Shane has a bit of a sunburn on his face. Please keep being you and loving each other the way you do.
I know you guys got this. You guys have my support
Honestly.... Just thank you. Thank you thank you thank you!!!! For being so damn refreshing ! Thank you.
Ughhh! It feels..... So good watching you two. You add much happiness to my pained life. I truly value you sharing and being so transparent. When you never needed to begin with. I know the impact and have received that gift. Thank you with ALL of my heart.❤❤❤❤
I can't express enough to people. The purple cushion is a life saver.
Where did you get the purple cushion?
@@karenblaine7266 funnily enough, I got mine at a quilting store! My autistic son used it a TON when he was younger. I looked on Amazon and saw it under “purple seat cushion quilt” and found it. This purple cushion might be totally different from what the original commenter was meaning, though.
The only way to prevent a pressure area is by a medical grade pressure cushion.
Pressure sores are very common for people in wheelchairs who have Spina Bifida, SMA or Paraplegia in general. As someone who sits in my wheelchair 75% of the time, I have to watch for sores all the time. Keeping off of it and eating enough proteins is very important for both prevention and healing!
Best wishes for your new chair, Shane. Stay positive. 🤗
I'm so glad you guys stay so on top of taking care of pressure sores before the skin gets broken. I worked as a CNA and some of the pressure sores I saw horrified me, especially in facilities that didn't take very good care of their patients, so incredibly sad.
It’s ridiculous that you have to jump through all those hoops for insurance, but I am so thankful you’re on the mend with the pressure sores! I cannot wait to see you wheeling your way about town in your new chair in a few months! Many prayers for healing and quick turn around from insurance!
You two are such a good team. Take good care of each other. Every day to the fullest.
my dad is bed bound, he has 'Pro-shield' cream on him to stop pressure soars, and a mattress that inflates in various places.
Yes, I looked after my elderly aunt for 7 years until she passed at the great age of 101 years. She had a similar mattress and we used to put cream on her too. It also helped that, with a Walker, she was fairly mobile so the blood could easily circulate, more difficult if the person is bed bound.
Ouch 😬 hope u get it sorted ❤🇬🇧
i’m a caregiver and barrier cream works miracles for my clients who are bed or wheelchair bound.
@@jackson.227 Wheelchair *users*
Those mattresses are an amazing invention!
Who would have thought it would be so hard to get a wheelchair, when it’s so obviously needed. I hope things go through quickly and they don’t give you a hard time about it? Bless you both. 💕💕💕
I’m a nursing student and have seen pressure sores that was a stage 4 where i have seen bone and muscle feeling it and it can get so bad. They can progress fast if you don’t properly take care of them. I hope you get to feeling better Shane! :)
I am applying for disability today. Hearing what all you go through gives me strength to know that it is ok to “fight” for what I need. I wish you a pain free summer! 😎
I am amazed at what you guys need to go through. Crazy ridiculous. I think they should make a head rest so that Shane's head can rest easy if he wishes. What the heck?? Happy that you are going through this process, you deserve something that is comfortable and works properly. Be well :)
Pressure sores are not only caused from the chair but also caused from not being moved around enough to relieve pressure. Hannah and yourself need to do pressure relief daily.
What does that involve
@@danarzechula3769 making sure the person is moved from one side to another so it’ll take pressure off of one side then the other.
@@cynicalbeauty18 exactly right. Luckily in Shane’s case it’s very simple because he is small. My mom and I had to do this for my dad when he was in his last few weeks of his life. Even though my dad post a ton of weight it was still hard in my back, I was pregnant at the time so it didn’t help. I’m just happy that they know the solution to relieve pressure. Although, I still think Shane should have been doing more moving throughout the day. He must have had pain seeing how the gel seat was completely flat on spots. But I also don’t know how long Shane sits in his chair throughout the day I mean when Hannah went to college I’m assuming Shane was on his chair the whole time she was gone. Anyways all that matters now is they make sure the areas don’t open that is hard to heal and very painful. My dad was in a care home for sometime and I got a glimpse into how painful bed sores became. Some elderly people that had no family to make sure they were being cared properly and the staff there weren’t the best. My mom actually started decorating everyone’s rooms for holidays and different seasons and started visiting many people who had no one. It was so sweet to see their eye light up when my mom walked in enough decorations or just to chat. Man the stories they. Had were crazy too, some loved such adventurous lives.
I think some of tht problem is tht Shane can only be positioned one way while in his chair
Maybe Shane can give you his old wheelchair and you won't need to be called a "wheelchair digger" anymore bc you'll have one! 🤣
What would we call a wheelchair digger who’s acquired the highly sought-after wheelchair??? 🧐
then they can have awesome chair races--- and do sort of an olympic event..... could make for great videos.
You do such a good job of explaining issues you deal with rationally...and then you pop up with a chuckle as a defensive mechanism for the absurdity of it all. Best of luck!! Pressure sores were the bane of my brother's existence since as a paraplegic he couldn't feel them. My dad used to say that they were just cleared up and then he went into the hospital where they emerged again.
As a chronic pain patient, the amount of pain you’ve just had to learn to live with, makes me sad. Imagine denying a wheelchair to someone who literally spends nearly every waking hour of their life in one.
The people who work in insurance companies seem to not have a heart or they are “just following the rules”, either way it’s so crappy. Like you said how can anyone see and hear Shane’s life history/story and still think oh he doesn’t need a decent wheelchair that one still holds him in a seated position so that’s enough. It’s sad and makes me so upset, frustrated, and angry.
So excited for you to get your new chair Shane. Thank you for sharing with us. Much love to you both from Indiana💗
“Chair digger”, meaning; one who befriends a chair bound person in order to get the disabled person’s chair upon their death. Way to go Paula!
Officer and a gentleman! I see what you did there.
Wheelchair user, not "chair-bound". 🤦
Paula is just a rude person, you can see the love they share!!!
What is your problem? Everything DOES NOT revolve around money!
@@chadcollinwood2280 the joke went waaay over your head. 😄
4 and a half years after a long post-surgery debacle, I'm *still* dealing with the lingering issues surrounding my worst pressure sore (I was bed-ridden for 3 months). I'm glad you are taking them seriously and finding some relief. Good luck with your new wheelchair and insurance process!
What's up family!!! Get better brother and I love y'all much love from Jacksonville Florida!!!
Get well soon Shane. I am sending positive thoughts your way that you will have a pain free summer and that the process of getting your new wheelchair will go smoothly.
It is crazy that you have to fight the insurance for everything. A wheelchair is a necessity for Shane. I am so glad that you received help adjusting your wheelchair to make it more comfortable for you.
Welcome to the U.S.
As an OT myself, I loved hearing you talking about our profession, that so few know about. It's crazy what it takes to get everything approved through insurance.
I don’t normally comment on a lot of videos. But since your hilarious reading of Paula’s rude and mean comments, I’m like-
“Oh, look! Wheel Chair Digger. Has a new. Video.”
(Punctuation added as per The Paula comments!😂)
Ahaha omg 😂
The Paula Punctuation was perfect, but you SPELLED too wel. 😉
Ngl, the term "wheelchair digger" still has me lolling!
HAHAHA THE PUNCTUATION MADE ME GIGGLE OUT LOUD HEHEHE! :)
I still keep imagining "wheelchair digger" as an attachment for the robot arm, so I've got this mental image now of Shane working at a construction site, digging holes with his Jaco arm (with some sort of fancy digging attachment hehe)
Paula Punctuation, that’s perfect 😆
How honest you guys are about everything, I’m sure that it helps people out come out with things out with things.
Im a caregiver and I'm so sorry pressure sores suck! It takes forever to heal them.
I'm a former caregiver n I agree they're far from easy to heal
Yup. Have seen some very complicated cases
I hope you get everything you need Shane 😊 Hannah your so patient and supportive you can see the love you both have for each other 🥰😍 don’t listen to the people that are negative Nancy’s . Keep staying strong you two 🙏🏻🙏🏻😍
What will help to is to massage lightly over the areas where the pressure sores are to increase the circulation.
Would laser therapy help
So glad the wheelchair company was so helpful. How awful to have to fight for what you need. Hope the pressure sores heal quickly and fully.
I knew Hannah helped with a lot of things. I didn't know he needed help raising his neck. Glad he's getting a new chair.
If you watch some of their travel videos, they are adorable when they are driving. She automatically either supports his head through turns and stuff or puts it back level when it falls. It's so knee-jerk, it's sweet. 💚
Prayers that the approval process for the wheelchair goes smoothly and quickly
Shane--I understand. In 2010 I got a spinal infection and spent 9 months flat in a bed in the hospital. Even though I was in one of those 'air beds' I still got coccygeal pressure sores periodically. You and Hannah are too valuable to our world, please keep those of us who care, informed.
how long did your coccyx take to heal? mine is hurting for months now
My life has been a struggle from birth but thanks to God and pure stubbornness I made it to 61 yrs old.
I suffer severe depression/anxiety syndrome and I am a recluse.
The one thing that has made it more bearable is your show.
You both make me laugh and smile and your love for eachother is beautiful bright and from God I believe that.
🙏🏻 keep being stubborn and God bless xx
@@filmchick6389 awe thank you
OMG! That drawing of you two at your wedding with Chloe! So cute 1:56
So glad you caught the sores in time and gel seat working better. Hope you get a shiny new wheelchair with lots of upgrades!
I remember you talking about Shane's cusion not holding it's form. Is it because of that? Thoughts and prayers out to Shane's butt. That really stinks.
I see what you did there...lol 😆 🤣...last 2 lines...lol 😆 🤣
LMBO
maybe watch the video before commenting : )
Thanks guys - I decided to check out Best Fiends yesterday afternoon and played for four hours and got up to Level 23. I'm now hooked.
I’m currently waiting for approval for an $8,000 wheelchair part that is 100% necessary but we’ll see if the government will give it to me. Fingers crossed because it could potentially give me my life back. Without this, I’m stuck at home and in bed 24/7.
Hope you get the chair
Hope you get a chair
But how can the government afford your health needs and their inflated salaries and pensions. Sorry you lose.
First, I too am a Fiends addict. Second, I began as a caregiver in 1977. You should have seen how we treated pressure sores in those days! And, congrats on the new chair!!
The insurance would much rather pay for the new wheelchair, than to cure pressure sores. Please take care of those. Sending prayers for you and your comfort.
I’m a Type1 diabetic and have been for 54 years yet when I went on Medicare I had to do a blood test to prove I was diabetic so they would pay for the medical equipment that keeps me alive. So crazy. I’m excited for the upcoming new chair.
I’m a type two diabetic and the hassle with getting the Libra sensor kit. And I don’t the prick my finger anymore. Medicare had us jumping through hoops. Finally my doc had to go through a huge mess to get for me. The time it took was awful. I don’t know why it should take so much to get it done. Oh yeah I also had to get lab work to make sure I was a diabetic it was like I was trying to rip them off.smh
I had a pressure sore and was bed bound for 3 years, I now have a pressure cushion for my wheelchair. Now I had to have a mattress that has a motor to move the mattress
Ooh - yes. Good idea about a mattress change - whether it's a gel overlay, air mattress or clinatron mattress. Just causes less stability with sleeping - but definitely another good idea to consider outside the wheelchair!
yes! my grandpa had the motorized mattress and it worked wonders
Thank you both for continuing to post and share such things from your lives & raising awareness xx