Hi! I’ve been living with MS for 26 years and in a wheelchair for 10. I’ve had bladder and bowel problems for 23 years. I’d chose walking because at least I could get myself to the bathroom more quickly 😆. thank you for your videos I enjoy them and they have helped me ❤
I think this changed my mind. I've always said I'd rather not spend my day worrying about leaks and poop, but I never thought about how quickly I could clean myself up if my legs worked. Plus, I thank God everyday that my hands still work.
I’m super grateful to have had you on the podcast Brittney, it was a pleasure and I hope we can do it again one day soon, it seems like it was well received . Thank you 😊❤️✌️
I used to think bowel and bladder back would be the choice but I have a new perspective with this video. I always tell people not walking isn’t the worst part of being paralyzed. I still feel that way but I do wish I could do more with my child. Thank you again for all you share.
@@EmpoweredPara I started watching him during those awful first days and him trying so hard to find anything positive ...and then he started to live again ...I always get my patients to watch his vids so they see there is life ..a great life
Hi Brittany, last Saturday the time came to order my wheelchair I was dreading it as I’d left it for as long as possible and sacred I wouldn’t be able to push myself along. However much research I did I still can’t get over how much there was in ordering it. Also how much it was. I nearly fell off my chair when she told me how much. But it’s like my glasses I will be using the chair everyday. It’s replacing my legs. I miss walking the dogs on a good ten mile walk, going to the gym, shopping all day, working in my old job and socialising. I miss that so much. When you had a wheelchair did people that you knew change how they were to you?
Never thought about this. But in school one of my classmates was a below the elbow amputee and another was a below the knee amputee. Led to some interesting discussions on the topic, "if you had to give up a limb would you choose - leg or arm?" Sometimes when we were discussing the topic a teacher would scolded us because the teacher felt we were being disrespectful to our classmates, even though the amputees didn't find the discussion disrespectful and were genuinely interested in our opinion and most of the time were the ones who initiated the discussion. Ironically, we even had one teacher who said our discussion was offensive to the "handicapped students" Both of them hated the word "handicap" preferring "disabled"
I think a big factor in this question is the level of independence that each person has. If you can't manage your B&B on your own it is a much bigger obstacle, especially if you don't have any sensation of fullness or urgency. If you ask most quads who don't have functional use of their hands, then walking falls further down the wishlist. Personally, I would put stopping my burning nerve pain at the top of the list because it affects my quality of life the most. Good video.
Yeah nerve pain is another big challenge that I'm sure many people would choose to live without even if it meant staying paralyzed. Being comfortable and paralyzed is much different that being paralyzed and in pain. I should totally do a video about nerve pain!
I would choose walking but I, like you, have sensation in my b&b. Alternatively to this, I'm not a spinal cord injury but have MS instead. If I could freeze things here & not get any worse, I'd gladly stay in the chair. It's the fear of the unknown. Or it's not just physical, but mental. Regardless, love how you speak so honestly about "taboo" subjects -- being uninformed is a much worse choice!
Yeah having a progressive condition means there's some unknowns about the future. Being able to freeze things as they are and where they are manageable would be awesome:)
Wow! I just said to a friend that if I had to choose between walking and control over poop & pee that I’d be loving the wheelchair! No problem with rolling! Because…the the lack of control or having accidents is what holds me back from being around people which drives quite a bit of depression. I do suffer from occasional incontinence.
Very interesting Most of us walking people don’t cherish our abilities because it’s a given, or is it! It’s all perspective. So yes I’d take walking ❤ Keep up your education to us😊
As an A-B, I feel kinda foolish commenting here at all, but I love to give feedback, because you always make me think hard about things. I am just totally shocked that you may have changed your mind! I never thought that would happen! I think like most A-B, at first I had no idea that bowel & bladder was affected for a Para. Fred makes a really good case, and it certainly makes one think. I’ll be interested to see what others say on this. Cheers!
Cool discussion. I'm 46 yrs in and have always been in the 'I'd choose bowel and bladder over walking' camp. But I do see his point. There are degrees of walking, so for me to choose walking over 46 yrs of life experience in a chair, it would have to be walking with no compromise. Full ability or not at all. That said I'm a t12/L1 incomplete, so life is much easier for me than many.
I think my decision has flip flopped a few times over the years. I unequivocally would have chosen bowel and bladder control as a new para when it dominated my life and brought me more embarrassment. Now I think I'm less worried about that and might choose walking because I miss the woods and unpaved paths and wiggling my toes in the sand.
My friends and I have had this conversation many times before.. We all have spinal cord injuries from 40 years to 15 years. At this point, we all agree that a cure for paralysis won't happen in our lifetime. But, it would be great if they found a way to get back our normal bowl function... We would be happy with that being in a wheelchair and not having to do the bowl program.... Doing the cath, at least for me, isn't a problem. To answer your question. I'd choose Walking. If it means getting total feeling back!.. Great question! All the best.
As a T4 para I would 100% choose walking. i wouldn't mind cathing and doing the BP as I'm in the same situation as you both, I rarely have accidents. Also, it's's only 3 years since my injury, I feel people who had been longer paralyzed choose the opposite.
I'm not paralyzed in any way, but I did shatter my right femur (quite literally - the biggest, strongest bone in my body was in 8 or 9 big pieces and dozens of small shards) in a skiing incident when I was a teenager (aside: when I woke up, lying in the snow, the very first thing I did to assess my situation was see if I could move my arms and legs, so paralysis was very much on my mind), and so I got to experience many months of being unable to walk. In my full year of healing (including a massive regression 6 months after the accident when I needed a full second surgery, requiring me to basically go back to square one - long story short, my leg was so screwed up they needed to graft healthy bone from my pelvis to the broken area to make it heal) I spent about 2 or 3 months almost exclusively using a wheelchair (with crutch use being limited to minor bits of motion), and then another 3 or 4 months where I was gradually decreasing wheelchair use and increasing crutch use. All in all, I spent about 6 months without bearing any weight on that one leg though. Acknowledging that this experience isn't anywhere near the same as that of a person with paralysis, I still think I have a perspective on this, as I had to experience how the world isn't really designed for wheelchairs, and the limits this imposes (although I do think things have improved marginally since my injury 25 years ago). Nonetheless, I quite enjoy continence...I'm particular that way. So if I had to give up one, I think it would be walking. The thing that swings it for me is that being wheelchair-bound is only unbearable when it is prevents you from doing something you really REALLY want to do; in one's day-to-day life, you can accomplish most everything while in a wheelchair (or at least I could...obviously, certain jobs would be out of the question, but that's always the case...everybody has limitations in that way, as to what they can do for a living). But not having bladder or bowel control (or urogenital/rectal _sensation_ which I would argue are just as important) would be beyond nightmarish for me. Those are fundamental to my daily experience. I love hiking and climbing mountains and things like that, but I rarely do those things, so I wouldn't miss them as much.
I lost both my right leg and hip because of a broken femur that never healed. A bone infection set in ad it just kept getting infected and infected and was infected yet again during the amputation.
This just flips the perspective, I think. If you ask people with a sci (and other disabilities) which negatively impacts their quality of life more, not being able to walk or having to manage their bowl and bladder, that's where bowel and bladder would be the likely winner.
Yeah I agree. If bowel and bladder are hard to manage then it seems bowel and bladder are the clear winner but if they are easy to manage then walking wins.
I would probably choose walking, but if I had regular incontinence, I might swing towards bladder and bowel. For me, it would boil down to what keeps me from leaving the house.
I would rather have bowel and bladder back any day of the week. Why would I want bowel and bladder back over walking? It's been miserable for me not to be able to clean myself properly. I also have a hole in my back and have colitis...THAT is miserable because I have to have a nurse come in once a week and make sure it's clean. Also, being bowel incontinent is quite embarrassing. Wetting yourself can be stinky if you have constant UTIs from cathing. You would also be able to drink more without having to worry about having to transfer or wetting yourself. Your wheelchair can be part of you and be independent...relying on others...takes independence away.
I paused the video…. Before I hear what y’all have to say, I’d rather have bladder/bowel over walking (T7 Para for 33 years). The maintenance of the bladder/bowel has become more of a nuisance the older I get. Wheeling around and doing things from a wheelchair is a lot easier than dealing with the inconvenience of worrying about accidents and having them. So… on to the video….
I appreciate the perspective. And it’s still a hard decision. Fortunately (or unfortunately) for us, it’s not likely one we will have to make. Something it seems like nobody has mentioned is that most likely along with bowel and bladder function comes sexual function. This may rightfully be criticized as a stereotypical comment coming from a married guy in his 30’s that recently got injured. But it’s undeniably universal. Just food for thought.
That's a HUGE one. I just did a webinar with a sexual health expert on intimacy after spinal cord injury and research shows that for most people regaining sexual function is more important than walking.
I've long ago accepted the fact that I can't walk. The one thing I have not and probably never will accept is that I need assistance with defecation. Interesting topic. And if I had to choose after all these years, I would definitely choose normal defecation.
Walk for sure , as a para who has seen few older para friends lives struggling to keep their independence due to knackered shoulders and pressure sores it’s a no brainer for me 👍
I have had a mystery spine condition my entire 50 years of life so I have never walked without pain. Using my chair is a gift. So I would choose bowel and bladder over walking because I don't assume that I could ever walk without severe pain... Although if I could chose between not having 20 days a month of migraines vs walking pain free AND having bowel and bladder I would chose to get rid of the migraines!
It is a matter of degrees: completely uncontrollable bowel is a game changer. Where could you walk to for fear of a bowel movement happening, smell and all? Cleaning yourself up would be a nightmare. I think I would enjoy being able to walk inside my home but otherwise the fear of a bowel movement would keep me inside.
As someone who can do both (CP) honestly, I'd choose to just leave things as they are. This is my life, as I've always known it. Yes it has its ups and downs, but...I love my life.
@@EmpoweredPara I wouldn't say that it's "not broke" I'm still a wheelchair and leg brace user after all, but what I am saying is that it's just how my life is and has always been, and I'm happy with life, so no need to "fix" it in my opinion.
I had both of my legs Amputated last year and have fecal incontinence. 😢 I would rather walk. Also, get my bum fixed. All though, both may be possible for me with a lot of hard work. Great subject 👌
Alright, you two made me sit back and think about it. (I listened to it first from your link to his podcast, then again here on your channel, so had time to think about it.) I'll give you my answer at the end of my comment. (It should probably be obvious by then.) Here's my perspective. I'm an T8(left side) - T10(right side - yea, I'm imbalanced/asynchronous LOL) para due to Transverse Myelitis. It left me with a bladder that won't hold anything over a few ounces so I leak/dribble past that point. As far as fecal goes, I (currently) have a colostomy which will hopefully get reversed at some point (I hate it SO much that I've even named it - Jane the Ignorant Slut), but before that I had to use both a suppository and digital stim to have a release. That's probably what I will have to go back to if I can lose the colostomy. (Now the two of you kind of implied that needing to do a digital bowel routine is not fecal incontinence. Yea, it still is per the medical profession. If you can't hold it OR can't let it go, then you're incontinent.) Would I take walking or having bowel/bladder control again? I'd break that into three sections personally if allowed. Walking or bowel control or bladder control. First off, I still think walking is highly over-rated. Just give me a good wheelchair AND good upper body strength and I can go do most everything I want to do in society. I'll keep the T8-T10 paralysis and a wheelchair. I'm probably not as active/physical as you are. Kinda close to a couch potato really. *giggle* I'd probably be happy if I could switch to intermittent cath'ing instead of always having to worry about a 24/7 indwelling Foley or an adult diaper. But the time it used to take to deal with a bowel program, or having to deal with a poo-bag glued to my belly all the time that I have to constantly check on and deal with leaks -when- they happen (and they will/do/have), is something I can definitely do without. But, if I can't split it up then I will definitely give up the walking over getting my bladder/bowel control back. That's my over-blown use of two cents for ya. 😉
I freaking love that you took the time to give us such a thoughtful answer. I think living with bowel and bladder issues is much more taxing mentally than missing out on anything your legs can give you. These are amazing conversations to have because they bring out how different each of us really experiences our spinal cord injuries, even though they all look similar to an outside observer.
I used to have control of both. Now after in hospital on bed rest and on antibiotics for most of the last 4 years I have lost the bladder control. I've been in a w/c for 40+ years and imagine walking again. What if you could walk but couldn't feel your legs? Like some diabetics.
Can't have either so I think it would be silly too drawl on something that at the end of the day will do nothing to improve my daily health so that is my 10cents. Cheers!
What a fascinating discussion. I’m not paralyzed, so if I think would I rather lose the ability to control bladder & bowels over the ability to use my legs, it’s an easy decision. Legs all the way. Maybe it’s because we have elder incontinence looming in the background, so it’s still a viable possibility. But I think those who are paralyzed who would choose bladder/bowel over walking, don’t find their lack of walking to be an impediment to a full life. So I’m digging that. Thanks for sharing, and helping me be a better member of society.
I dont have problems with my bowel movement but if being able to also pee which may mean I can get an errection then I'll definitely choose pooping but besides that I'll choose walking since having accidents isn't a big deal for me personally
Yeah, was an interesting conversation, i'm slowly loosing my hability to walk and was interesting, i like to walk; i liked to walk and cycle for hours and it's gone. I wouldn't share my "hability" to keep "things inside" over walk, i could crawl with my hands and elbows for miles, tired and with pain, i already did it, but loose my capacity of retain fluids etc...!?, no thanks, that's what's i call dignity; idk if it's because i was trained to belive/fell it or if it's 100% a thing of ine, from me. That in my eyes would be like loose my "humanity" even if that's what make me enjoy the suffering of other humans, see their pain and.. get joy from that; in my "dischargue..." i'll say that i mostly get this.. not liked feeling (it chases you in the lonelyness, when you go to bed) when i see what i think, perceive, know or identify as enemies; doesn't matter. Walk, stand up gives you a range and feeling of "freedom" that i wish for everyone, friend or foe; friend or enemy we're all humans/animals and i want everyone of us, animals, to feel free and be free.
1st comment: Since I broke my nose walking into an automatic door watching a pretty Marine coming out the chow hall in Iraq, I'm going with pooping. I think maybe the chair would hopefully prevent me from busting it yet again. I lost count how many times I broke it.
Walking IMO... yeah, going to the bathroom is certainly nothing to snarl at, but walking could be a constant. Maybe one day you get to make the choice! You never know what tomorrow brings....
DEFINITELY have control over bladder and bowel. I don't understand how people live normal lives without the control of bladder and bowel. I don't suffer from bowel incontinence (unless I get up too early after my bowel program, (which because of that fear can take up to 2 hours if not more, so that still makes bowel-stuff an issue ), but to have no control over bladder, I don't get how people exersice or have hobbies where you have to physically work hard (wich I guess could be considered the same as exersice)...When you're afraid to cough and/or laugh or lean forward to pick something up, or even transfer anywhere from your chair, in case of an explotion... It would be fine if you just leaked a little bit so a pad would solve the problem, but when the entire fu king bladder has to empty....WHILE you're transferring to the toilet! No thank you... I really wish more people would talk about this because I seriously don't know how people do this. I'm 36, born with spina bifida and discovered in the last couple of years that I totally have not accepted my disability and am totally not taking care of myself the way I shoud, BECAUSE I don't see the point since my bladder still has a life of it's own. Feels like why do the best you can when it's still not enough to guarantee you can live normally and trust the bladder. So I know I'm my worst enemy, but still...
Bowel and bladder can be dealt with while standing up, at least I could park in a parking lot and run (literally) inside to use the bathroom to sit down to empty the bladder out. Otherwise it's unzip the inseam crotch zipper and pee into a pee jug, or unpack the wheelchair to go inside if it's a brown snake playing peekaboo with my butthole or I don't have an inseam crotch zipper. I'd pick walking.
While question that I rarely hear if bladder and pooping where to fail would actually kill you worst case make extremely I'll other wise While walking highly desired but can live with out walking Either body function will missed
I would rather choose pooping. I have both legs amputated one above the knee and the other below the knee. I am 85 and my walking days are over, and I am OK with that. I used to Ballroom Dance. I have memories and that satisfies me. Having to wear diapers is not good for intimancy.
I hate to be that person but not choosing walking is the perspective of someone who has got very used to not walking. I have lost my job, my whole career, everything I did for fun, all my exercise and hobbies. Nobody's employing anyone for their ability to take a dump. Nobody takes a dump for fun. I have only ever had urinary incontinence twice including once in rehab but honestly I would wear a diaper I would take walking every day of the week. Oh and edit. If you can walk, you can presumably turn over in your sleep. I sleep in 90 minute segments because I keep waking up not being able to roll over properly. I have never been this tired in my life and it makes me go to sleep not wanting to wake up because I know what it'll be like.
How long since your injury? Thank you for such an honest and articulate description of how you feel. I'm sure there are countless people feeling exactly the same and, frankly, this is exactly how I felt for at least 5 years. What is your level of injury?
@@EmpoweredPara thanks for replying. 18 months ago, and T11 but it was a dislocation not a break, so that is based on the location of the swelling and soft tissue damage, not any broken bones. Basically if you draw a line across about an inch below my belly button that's where it is. I know I'm griping about something that is way less severe than what you have, I am way better off than some people and I'm sorry for that but it is what it is.
@Lizzie Dobrev Don't apologize. If anyone understands its those of us that have gone through it. I literally know exactly how you feel. I still get those feelings some days. And it's important for other people to know they aren't alone, so you taking the time to write how you feel is valuable. AND....you're gonna be ok. I promise. Just take it one day at a time .
@@EmpoweredPara I appreciate your being so kind but at this point I'm not sure if I really want to be OK. There is only so much time I am going to spend sitting here waiting for worse and worse stuff to happen because as we all know it is not going to get any better.
@Lizzie Dobrev I'm not here to change your mind or how you feel. But I am offering support if that's what you need. I hope you get some help to get through these tough days because even though it doesn't seem like it, there is still l a lot to live for. Again, if you would like to email me at empoweredpara@gmail.com I can introduce you to a whole world of people that may he able to change your mind about how bad things are in a wheelchair:)
How is it possible that without bowel and bladder function, some people have incontinence and some don’t? I would this incontinence and bowel function go hand in hand!
Typically paralyzed bladders and bowels are closed by default and we have to do things to open them. So incontinence is usually when the reflexes are triggered and we can't control holding it in when that happens. But the way nerves are damaged makes a difference, and how damaged nerves act is very different for everyone. So incontinence varies from person to person.
That is the question. Or alternatively-phrased (for the able-bodied), which would you be more willing to give up forever? This is a no-brainer for me personally; I'd give up walking and keep my bowel and urinary control (and sensation, which is just as important).
If you are in a wheelchair and can't walk and also have no control over your bowel or bladder, which would you want to have? The ability to walk, but still no control over your bladder and bowel, OR, have control over bladder and bowel but still no ability to walk.
A very interesting video, and love to have another podcast to follow and potentially recommend on my blog. I'm really loving your content Brittany. We're different types of wheelchair users, but I'm a new one and working on getting my first chair, and your content is helping so much. I'm an ambulatory wheelchair user with the classic trifecta of EDS, Dysautonomia (autonomic nervous system dysfunction), and MCAS. EDS is a degenerative condition for me (it isn't always, and there's 13 different types). One of the three types of dysautonomia I have - neurocardiogenic syncope - causes me to loose consciousness, get all sorts of bad ANS issues including stopping breathing when I have blood draws, and other invasive procedures. I don't get blood tests or IVs. I can't use a catheter. Also the two ways us EDS zebras* 🦓can loose bowl function is though: 1) Damage to the intestines that can lead to needing a stoma. Another medical procedure that would be life threatening for me. 2) Getting IBS which means lots of bowel accidents in public with explosive diarrhea and/or being stuck at home on a toilet with messes all over the bathroom. My Mom and three of my four aunts have/had this (two have passed away). It's such a thing that the joke is "We have runs in our family.". I miss trail running, ballet and other dance classes, walking and standing without pain, dizzines, vertigo, and it causing migraines, blurry vision, tinnitus, fatigue, breathing issues, brain fog and (annoyingly) making my nose run constantly. But I'd still choose bowel and bladder function + wheelchair over all of the things I miss and having IBS or needing medical procedures that (for me) are life threatening. (Wow that was sad! But sooo looking forward to having a wheelchair and getting a lot of my life back. ... and eventually getting a Batec too!) 😁 *Google "Ehlers-Danlos Syndrome zebra" if you're curious about that.
That is a shit ton of stuff to deal with! Must be frustrating at times. That's why we have to remember that we have no idea what someone is dealing with despite how things look on the outside. I can see me going down a worm hole googling your diagnosis!
I have stroke-like symptoms and my left side is numb and has nerve damage, so when it comes to holding it, I can't. I can however put my brakes on and steady myself with one hand while I do the dishes with the other. Just having enough balance to be able to stand without holding on would be great. Something that has really helped my digestive system is doing ketovore.
Hi! I’ve been living with MS for 26 years and in a wheelchair for 10. I’ve had bladder and bowel problems for 23 years. I’d chose walking because at least I could get myself to the bathroom more quickly 😆. thank you for your videos I enjoy them and they have helped me ❤
wouldn't it be nice to get to the bathroom faster!
I think this changed my mind. I've always said I'd rather not spend my day worrying about leaks and poop, but I never thought about how quickly I could clean myself up if my legs worked. Plus, I thank God everyday that my hands still work.
I am so thankful for my hands too!
I’m super grateful to have had you on the podcast Brittney, it was a pleasure and I hope we can do it again one day soon, it seems like it was well received . Thank you
😊❤️✌️
We make a pretty good team ! More to come for sure.
fancy seeing you here ....I think you two are amazing people ...well I haven't met you but I love your content
@Kenzie McIntyre We're amazing in person too lol, trust me!
@@EmpoweredPara I bet !!!
I used to think bowel and bladder back would be the choice but I have a new perspective with this video. I always tell people not walking isn’t the worst part of being paralyzed. I still feel that way but I do wish I could do more with my child. Thank you again for all you share.
I love freddo wheelchair guy too ...I am obsessed with his personal and mental growth ...I admire him and you greatly
He really is such an amazing example to newly injured people because he shows how to overcome the dark days at the beginning.
@@EmpoweredPara I started watching him during those awful first days and him trying so hard to find anything positive ...and then he started to live again ...I always get my patients to watch his vids so they see there is life
..a great life
@Empowered Para I show them yours when I found u too because of your openness and great advice and you 2 are the only ones
@Kenzie McIntyre Well I think that's,pretty cool. Freddo's my favorite disability youtuber so honored to be in his league!
@@Kenzie_McIntyre wow I just came across these comments and I have to say THANKS to both of you for the kind compliments! ❤
Hi Brittany, last Saturday the time came to order my wheelchair
I was dreading it as I’d left it for as long as possible and sacred I wouldn’t be able to push myself along.
However much research I did I still can’t get over how much there was in ordering it. Also how much it was.
I nearly fell off my chair when she told me how much. But it’s like my glasses I will be using the chair everyday. It’s replacing my legs.
I miss walking the dogs on a good ten mile walk, going to the gym, shopping all day, working in my old job and socialising. I miss that so much.
When you had a wheelchair did people that you knew change how they were to you?
Never thought about this. But in school one of my classmates was a below the elbow amputee and another was a below the knee amputee. Led to some interesting discussions on the topic, "if you had to give up a limb would you choose - leg or arm?" Sometimes when we were discussing the topic a teacher would scolded us because the teacher felt we were being disrespectful to our classmates, even though the amputees didn't find the discussion disrespectful and were genuinely interested in our opinion and most of the time were the ones who initiated the discussion. Ironically, we even had one teacher who said our discussion was offensive to the "handicapped students" Both of them hated the word "handicap" preferring "disabled"
I think a big factor in this question is the level of independence that each person has. If you can't manage your B&B on your own it is a much bigger obstacle, especially if you don't have any sensation of fullness or urgency. If you ask most quads who don't have functional use of their hands, then walking falls further down the wishlist. Personally, I would put stopping my burning nerve pain at the top of the list because it affects my quality of life the most. Good video.
Yeah nerve pain is another big challenge that I'm sure many people would choose to live without even if it meant staying paralyzed. Being comfortable and paralyzed is much different that being paralyzed and in pain. I should totally do a video about nerve pain!
@@EmpoweredPara Do it.
Nice presentation by both of you, and what great humor and attitudes you both have! Personally, I'd rather walk too :)
Thanks! Stay tuned for more in the future!
I would choose walking but I, like you, have sensation in my b&b.
Alternatively to this, I'm not a spinal cord injury but have MS instead. If I could freeze things here & not get any worse, I'd gladly stay in the chair.
It's the fear of the unknown. Or it's not just physical, but mental.
Regardless, love how you speak so honestly about "taboo" subjects -- being uninformed is a much worse choice!
Yeah having a progressive condition means there's some unknowns about the future. Being able to freeze things as they are and where they are manageable would be awesome:)
Wow! I just said to a friend that if I had to choose between walking and control over poop & pee that I’d be loving the wheelchair! No problem with rolling! Because…the the lack of control or having accidents is what holds me back from being around people which drives quite a bit of depression. I do suffer from occasional incontinence.
Yeah incontinence is a mind f@#$ for sure. It's the most taxing part mentally I think.
Very interesting
Most of us walking people don’t cherish our abilities because it’s a given, or is it!
It’s all perspective.
So yes I’d take walking ❤
Keep up your education to us😊
❤ saw that video. It was amazing.
While I am not in a wheelchair, it is great that you help so many people.
I hope so!
As an A-B, I feel kinda foolish commenting here at all, but I love to give feedback, because you always make me think hard about things. I am just totally shocked that you may have changed your mind! I never thought that would happen! I think like most A-B, at first I had no idea that bowel & bladder was affected for a Para. Fred makes a really good case, and it certainly makes one think. I’ll be interested to see what others say on this. Cheers!
Thank you for the videos and the time it takes to put them
together. ✌🏻😎
Thanks for watching!!
Cool discussion. I'm 46 yrs in and have always been in the 'I'd choose bowel and bladder over walking' camp. But I do see his point. There are degrees of walking, so for me to choose walking over 46 yrs of life experience in a chair, it would have to be walking with no compromise. Full ability or not at all. That said I'm a t12/L1 incomplete, so life is much easier for me than many.
I think my decision has flip flopped a few times over the years. I unequivocally would have chosen bowel and bladder control as a new para when it dominated my life and brought me more embarrassment. Now I think I'm less worried about that and might choose walking because I miss the woods and unpaved paths and wiggling my toes in the sand.
My friends and I have had this conversation many times before..
We all have spinal cord injuries from 40 years to 15 years.
At this point, we all agree that a cure for paralysis won't happen in our lifetime. But, it would be great if they found a way to get back our normal bowl function... We would be happy with that being in a wheelchair and not having to do the bowl program.... Doing the cath, at least for me, isn't a problem.
To answer your question. I'd choose Walking. If it means getting total feeling back!..
Great question!
All the best.
Total feeling AND movement would be the ideal for sure!
As a T4 para I would 100% choose walking. i wouldn't mind cathing and doing the BP as I'm in the same situation as you both, I rarely have accidents.
Also, it's's only 3 years since my injury, I feel people who had been longer paralyzed choose the opposite.
I think those of us without troublesome bowels and bladders are lucky:)
Love you Brittney and love your channel. I hope you and your family are all well. Best wishes to you from Minnesota!❤
Thank you for watching 😉.!
WOW UNBELIEVABLE.😮😮😮
I'm not paralyzed in any way, but I did shatter my right femur (quite literally - the biggest, strongest bone in my body was in 8 or 9 big pieces and dozens of small shards) in a skiing incident when I was a teenager (aside: when I woke up, lying in the snow, the very first thing I did to assess my situation was see if I could move my arms and legs, so paralysis was very much on my mind), and so I got to experience many months of being unable to walk. In my full year of healing (including a massive regression 6 months after the accident when I needed a full second surgery, requiring me to basically go back to square one - long story short, my leg was so screwed up they needed to graft healthy bone from my pelvis to the broken area to make it heal) I spent about 2 or 3 months almost exclusively using a wheelchair (with crutch use being limited to minor bits of motion), and then another 3 or 4 months where I was gradually decreasing wheelchair use and increasing crutch use. All in all, I spent about 6 months without bearing any weight on that one leg though.
Acknowledging that this experience isn't anywhere near the same as that of a person with paralysis, I still think I have a perspective on this, as I had to experience how the world isn't really designed for wheelchairs, and the limits this imposes (although I do think things have improved marginally since my injury 25 years ago). Nonetheless, I quite enjoy continence...I'm particular that way. So if I had to give up one, I think it would be walking. The thing that swings it for me is that being wheelchair-bound is only unbearable when it is prevents you from doing something you really REALLY want to do; in one's day-to-day life, you can accomplish most everything while in a wheelchair (or at least I could...obviously, certain jobs would be out of the question, but that's always the case...everybody has limitations in that way, as to what they can do for a living). But not having bladder or bowel control (or urogenital/rectal _sensation_ which I would argue are just as important) would be beyond nightmarish for me. Those are fundamental to my daily experience. I love hiking and climbing mountains and things like that, but I rarely do those things, so I wouldn't miss them as much.
I lost both my right leg and hip because of a broken femur that never healed. A bone infection set in ad it just kept getting infected and infected and was infected yet again during the amputation.
I'd take working plumbing over legs in a heartbeat!
I'm torn between the two now lol!
This just flips the perspective, I think. If you ask people with a sci (and other disabilities) which negatively impacts their quality of life more, not being able to walk or having to manage their bowl and bladder, that's where bowel and bladder would be the likely winner.
Yeah I agree. If bowel and bladder are hard to manage then it seems bowel and bladder are the clear winner but if they are easy to manage then walking wins.
I would probably choose walking, but if I had regular incontinence, I might swing towards bladder and bowel. For me, it would boil down to what keeps me from leaving the house.
I would rather have bowel and bladder back any day of the week. Why would I want bowel and bladder back over walking? It's been miserable for me not to be able to clean myself properly. I also have a hole in my back and have colitis...THAT is miserable because I have to have a nurse come in once a week and make sure it's clean. Also, being bowel incontinent is quite embarrassing. Wetting yourself can be stinky if you have constant UTIs from cathing. You would also be able to drink more without having to worry about having to transfer or wetting yourself. Your wheelchair can be part of you and be independent...relying on others...takes independence away.
@@westiepower2020 thank you. Paralyzed people, in my opinion, are not willing to accept what is something not attainable.
I paused the video…. Before I hear what y’all have to say, I’d rather have bladder/bowel over walking (T7 Para for 33 years). The maintenance of the bladder/bowel has become more of a nuisance the older I get. Wheeling around and doing things from a wheelchair is a lot easier than dealing with the inconvenience of worrying about accidents and having them. So… on to the video….
Yeah I do agree it gets worse as I age. Takes more intentional eating and planning to keep things healthy!
❤❤Hi Brittany, nice to see you out and about… As you know, I watch to help a friend…I always would want to walk… a diaper works …
I appreciate the perspective. And it’s still a hard decision. Fortunately (or unfortunately) for us, it’s not likely one we will have to make. Something it seems like nobody has mentioned is that most likely along with bowel and bladder function comes sexual function.
This may rightfully be criticized as a stereotypical comment coming from a married guy in his 30’s that recently got injured. But it’s undeniably universal. Just food for thought.
That's a HUGE one. I just did a webinar with a sexual health expert on intimacy after spinal cord injury and research shows that for most people regaining sexual function is more important than walking.
I've long ago accepted the fact that I can't walk. The one thing I have not and probably never will accept is that I need assistance with defecation. Interesting topic. And if I had to choose after all these years, I would definitely choose normal defecation.
It's hard to accept help with such personal things! That loss of dignity is really hard to adjust to. Thank gosh for care aids though!
I so new to being in the wheelchair I would take walking again I already had bladder and bowel troubles
Walk for sure , as a para who has seen few older para friends lives struggling to keep their independence due to knackered shoulders and pressure sores it’s a no brainer for me 👍
yeah imagine the reduction in secondary complications if you could walk and exercise and not sit on your arse all day.
I have had a mystery spine condition my entire 50 years of life so I have never walked without pain. Using my chair is a gift. So I would choose bowel and bladder over walking because I don't assume that I could ever walk without severe pain... Although if I could chose between not having 20 days a month of migraines vs walking pain free AND having bowel and bladder I would chose to get rid of the migraines!
Oh gosh! It must be frustrating to have migraines that much!
It is a matter of degrees: completely uncontrollable bowel is a game changer. Where could you walk to for fear of a bowel movement happening, smell and all? Cleaning yourself up would be a nightmare. I think I would enjoy being able to walk inside my home but otherwise the fear of a bowel movement would keep me inside.
Yeah I think the degree of bowel and bladder issues is the decision clincher.
As someone who can do both (CP) honestly, I'd choose to just leave things as they are. This is my life, as I've always known it. Yes it has its ups and downs, but...I love my life.
That's exactly how I feel.
If it's not broke, don't fix it lol!
@@EmpoweredPara I wouldn't say that it's "not broke" I'm still a wheelchair and leg brace user after all, but what I am saying is that it's just how my life is and has always been, and I'm happy with life, so no need to "fix" it in my opinion.
I had both of my legs Amputated last year and have fecal incontinence. 😢 I would rather walk. Also, get my bum fixed. All though, both may be possible for me with a lot of hard work. Great subject 👌
I hope you get both!
Walking. Nothing like running, hiking, leg days at the gym … waking for sure!
oh tp be able to get lost in the woods again or stick my feet in the sand. Simple things I miss so much.
Alright, you two made me sit back and think about it. (I listened to it first from your link to his podcast, then again here on your channel, so had time to think about it.)
I'll give you my answer at the end of my comment. (It should probably be obvious by then.)
Here's my perspective.
I'm an T8(left side) - T10(right side - yea, I'm imbalanced/asynchronous LOL) para due to Transverse Myelitis. It left me with a bladder that won't hold anything over a few ounces so I leak/dribble past that point. As far as fecal goes, I (currently) have a colostomy which will hopefully get reversed at some point (I hate it SO much that I've even named it - Jane the Ignorant Slut), but before that I had to use both a suppository and digital stim to have a release. That's probably what I will have to go back to if I can lose the colostomy.
(Now the two of you kind of implied that needing to do a digital bowel routine is not fecal incontinence. Yea, it still is per the medical profession. If you can't hold it OR can't let it go, then you're incontinent.)
Would I take walking or having bowel/bladder control again? I'd break that into three sections personally if allowed. Walking or bowel control or bladder control.
First off, I still think walking is highly over-rated. Just give me a good wheelchair AND good upper body strength and I can go do most everything I want to do in society. I'll keep the T8-T10 paralysis and a wheelchair. I'm probably not as active/physical as you are. Kinda close to a couch potato really. *giggle*
I'd probably be happy if I could switch to intermittent cath'ing instead of always having to worry about a 24/7 indwelling Foley or an adult diaper.
But the time it used to take to deal with a bowel program, or having to deal with a poo-bag glued to my belly all the time that I have to constantly check on and deal with leaks -when- they happen (and they will/do/have), is something I can definitely do without.
But, if I can't split it up then I will definitely give up the walking over getting my bladder/bowel control back.
That's my over-blown use of two cents for ya. 😉
I freaking love that you took the time to give us such a thoughtful answer. I think living with bowel and bladder issues is much more taxing mentally than missing out on anything your legs can give you.
These are amazing conversations to have because they bring out how different each of us really experiences our spinal cord injuries, even though they all look similar to an outside observer.
I used to have control of both. Now after in hospital on bed rest and on antibiotics for most of the last 4 years I have lost the bladder control. I've been in a w/c for 40+ years and imagine walking again. What if you could walk but couldn't feel your legs? Like some diabetics.
Can't have either so I think it would be silly too drawl on something that at the end of the day will do nothing to improve my daily health so that is my 10cents. Cheers!
What a fascinating discussion. I’m not paralyzed, so if I think would I rather lose the ability to control bladder & bowels over the ability to use my legs, it’s an easy decision. Legs all the way. Maybe it’s because we have elder incontinence looming in the background, so it’s still a viable possibility. But I think those who are paralyzed who would choose bladder/bowel over walking, don’t find their lack of walking to be an impediment to a full life. So I’m digging that. Thanks for sharing, and helping me be a better member of society.
I suffer from both but I'd prefer WALKING!! And yes its does SUCK!!
I dont have problems with my bowel movement but if being able to also pee which may mean I can get an errection then I'll definitely choose pooping but besides that I'll choose walking since having accidents isn't a big deal for me personally
Yeah, was an interesting conversation, i'm slowly loosing my hability to walk and was interesting, i like to walk; i liked to walk and cycle for hours and it's gone. I wouldn't share my "hability" to keep "things inside" over walk, i could crawl with my hands and elbows for miles, tired and with pain, i already did it, but loose my capacity of retain fluids etc...!?, no thanks, that's what's i call dignity; idk if it's because i was trained to belive/fell it or if it's 100% a thing of ine, from me. That in my eyes would be like loose my "humanity" even if that's what make me enjoy the suffering of other humans, see their pain and.. get joy from that; in my "dischargue..." i'll say that i mostly get this.. not liked feeling (it chases you in the lonelyness, when you go to bed) when i see what i think, perceive, know or identify as enemies; doesn't matter. Walk, stand up gives you a range and feeling of "freedom" that i wish for everyone, friend or foe; friend or enemy we're all humans/animals and i want everyone of us, animals, to feel free and be free.
1st comment: Since I broke my nose walking into an automatic door watching a pretty Marine coming out the chow hall in Iraq, I'm going with pooping.
I think maybe the chair would hopefully prevent me from busting it yet again.
I lost count how many times I broke it.
I'll go with the walking.....
interesting conversation! it's been a mixed bag in the comments. Thanks for weighing in!
grass is always greener but I would take walking purely cos it seems to take so long to do anything in a wheelchair
I know! A day of running errands in a wheelchair is torture lol!
I was born disabled (Spina Bifida) so I've never had either, but incontinence annoys me more than not being able to walk.
Yeah its so annoying and affects mental health more.
Walking IMO... yeah, going to the bathroom is certainly nothing to snarl at, but walking could be a constant. Maybe one day you get to make the choice! You never know what tomorrow brings....
DEFINITELY have control over bladder and bowel. I don't understand how people live normal lives without the control of bladder and bowel. I don't suffer from bowel incontinence (unless I get up too early after my bowel program, (which because of that fear can take up to 2 hours if not more, so that still makes bowel-stuff an issue ), but to have no control over bladder, I don't get how people exersice or have hobbies where you have to physically work hard (wich I guess could be considered the same as exersice)...When you're afraid to cough and/or laugh or lean forward to pick something up, or even transfer anywhere from your chair, in case of an explotion... It would be fine if you just leaked a little bit so a pad would solve the problem, but when the entire fu king bladder has to empty....WHILE you're transferring to the toilet! No thank you... I really wish more people would talk about this because I seriously don't know how people do this. I'm 36, born with spina bifida and discovered in the last couple of years that I totally have not accepted my disability and am totally not taking care of myself the way I shoud, BECAUSE I don't see the point since my bladder still has a life of it's own. Feels like why do the best you can when it's still not enough to guarantee you can live normally and trust the bladder. So I know I'm my worst enemy, but still...
Bowel and bladder can be dealt with while standing up, at least I could park in a parking lot and run (literally) inside to use the bathroom to sit down to empty the bladder out. Otherwise it's unzip the inseam crotch zipper and pee into a pee jug, or unpack the wheelchair to go inside if it's a brown snake playing peekaboo with my butthole or I don't have an inseam crotch zipper.
I'd pick walking.
Yeah it seems like the obvious choice now lol!
While question that I rarely hear if bladder and pooping where to fail would actually kill you worst case make extremely I'll other wise
While walking highly desired but can live with out walking
Either body function will missed
I would want to walk.
I would rather choose pooping. I have both legs amputated one above the knee and the other below the knee. I am 85 and my walking days are over, and I am OK with that. I used to Ballroom Dance. I have memories and that satisfies me. Having to wear diapers is not good for intimancy.
Yeah bowel and bladder issues are awful in the intimacy department.
I hate to be that person but not choosing walking is the perspective of someone who has got very used to not walking. I have lost my job, my whole career, everything I did for fun, all my exercise and hobbies. Nobody's employing anyone for their ability to take a dump. Nobody takes a dump for fun. I have only ever had urinary incontinence twice including once in rehab but honestly I would wear a diaper I would take walking every day of the week. Oh and edit. If you can walk, you can presumably turn over in your sleep. I sleep in 90 minute segments because I keep waking up not being able to roll over properly. I have never been this tired in my life and it makes me go to sleep not wanting to wake up because I know what it'll be like.
How long since your injury? Thank you for such an honest and articulate description of how you feel.
I'm sure there are countless people feeling exactly the same and, frankly, this is exactly how I felt for at least 5 years.
What is your level of injury?
@@EmpoweredPara thanks for replying. 18 months ago, and T11 but it was a dislocation not a break, so that is based on the location of the swelling and soft tissue damage, not any broken bones. Basically if you draw a line across about an inch below my belly button that's where it is. I know I'm griping about something that is way less severe than what you have, I am way better off than some people and I'm sorry for that but it is what it is.
@Lizzie Dobrev Don't apologize. If anyone understands its those of us that have gone through it. I literally know exactly how you feel. I still get those feelings some days. And it's important for other people to know they aren't alone, so you taking the time to write how you feel is valuable.
AND....you're gonna be ok. I promise. Just take it one day at a time .
@@EmpoweredPara I appreciate your being so kind but at this point I'm not sure if I really want to be OK. There is only so much time I am going to spend sitting here waiting for worse and worse stuff to happen because as we all know it is not going to get any better.
@Lizzie Dobrev I'm not here to change your mind or how you feel. But I am offering support if that's what you need. I hope you get some help to get through these tough days because even though it doesn't seem like it, there is still l a lot to live for. Again, if you would like to email me at empoweredpara@gmail.com I can introduce you to a whole world of people that may he able to change your mind about how bad things are in a wheelchair:)
110% get my legs back!
yeah seems like the obvious choice now!
How is it possible that without bowel and bladder function, some people have incontinence and some don’t? I would this incontinence and bowel function go hand in hand!
Typically paralyzed bladders and bowels are closed by default and we have to do things to open them. So incontinence is usually when the reflexes are triggered and we can't control holding it in when that happens. But the way nerves are damaged makes a difference, and how damaged nerves act is very different for everyone. So incontinence varies from person to person.
❤
I'd prefer to walk. I have sensation.
I’m of the opinion that walking and using my diaper is easier to manage because mobility aids can be expensive more than diapers 😊
I do both with diapers on in the landscaping
What does that mean, walking or pooping? I do not understand this conversation Edit: Like if I could walk I can't poop or vice versa?
That is the question. Or alternatively-phrased (for the able-bodied), which would you be more willing to give up forever? This is a no-brainer for me personally; I'd give up walking and keep my bowel and urinary control (and sensation, which is just as important).
If you are in a wheelchair and can't walk and also have no control over your bowel or bladder, which would you want to have? The ability to walk, but still no control over your bladder and bowel, OR, have control over bladder and bowel but still no ability to walk.
Walking hands down ... Bowel and Bladder can be managed.
Like my friend says, "a diaper goes a long way" lol. It's been pretty mixed in the comments which is cool!
A very interesting video, and love to have another podcast to follow and potentially recommend on my blog. I'm really loving your content Brittany. We're different types of wheelchair users, but I'm a new one and working on getting my first chair, and your content is helping so much.
I'm an ambulatory wheelchair user with the classic trifecta of EDS, Dysautonomia (autonomic nervous system dysfunction), and MCAS. EDS is a degenerative condition for me (it isn't always, and there's 13 different types).
One of the three types of dysautonomia I have - neurocardiogenic syncope - causes me to loose consciousness, get all sorts of bad ANS issues including stopping breathing when I have blood draws, and other invasive procedures. I don't get blood tests or IVs.
I can't use a catheter.
Also the two ways us EDS zebras* 🦓can loose bowl function is though:
1) Damage to the intestines that can lead to needing a stoma. Another medical procedure that would be life threatening for me.
2) Getting IBS which means lots of bowel accidents in public with explosive diarrhea and/or being stuck at home on a toilet with messes all over the bathroom. My Mom and three of my four aunts have/had this (two have passed away). It's such a thing that the joke is "We have runs in our family.".
I miss trail running, ballet and other dance classes, walking and standing without pain, dizzines, vertigo, and it causing migraines, blurry vision, tinnitus, fatigue, breathing issues, brain fog and (annoyingly) making my nose run constantly. But I'd still choose bowel and bladder function + wheelchair over all of the things I miss and having IBS or needing medical procedures that (for me) are life threatening.
(Wow that was sad! But sooo looking forward to having a wheelchair and getting a lot of my life back. ... and eventually getting a Batec too!) 😁
*Google "Ehlers-Danlos Syndrome zebra" if you're curious about that.
That is a shit ton of stuff to deal with! Must be frustrating at times. That's why we have to remember that we have no idea what someone is dealing with despite how things look on the outside.
I can see me going down a worm hole googling your diagnosis!
How often you mess your diaper ?
we talk about that I the video, it's a rare occurrence for both of us. I don't wear diapers, but do have urine incontinence sometimes.
Walk …… in an inaccessible country not being able to walk is the biggest punishment one can have.
I bet that is so frustrating!
@@EmpoweredPara definitely. everyday is struggle just to do basic things.
@@Pratyush_1990 Where do you live?
@@EmpoweredPara India. Things are improving now but there is still long way to go.
I have stroke-like symptoms and my left side is numb and has nerve damage, so when it comes to holding it, I can't. I can however put my brakes on and steady myself with one hand while I do the dishes with the other.
Just having enough balance to be able to stand without holding on would be great. Something that has really helped my digestive system is doing ketovore.
is ketovore a diet?
@@EmpoweredPara ketovore is carnivore + keto. A positive side effect was weight loss, its easier than keto.
Brittany who is he?
who is who?
Sorry forgot to take that off, answered my own question as the video continued. Thanks for answering me though :)
Id be ok with diapers so yea
poop, oh lord poop. and pee.
Wouldn't that be amazing if we actually had a choice and it would be granted!
walk like you said i can wear diapers
Do you have neurogenic bowel?
Have you ever had a poop accident while out in public?
For me the answer is always poop.
Both if there is a will there’s a way
I wish it were that easy lol!
@@EmpoweredPara I believe anything is possible with the future of medicine maybe not now but at least there is hope. Stay positive right?
@@maxsundberg5818 yep I do!