I just recently became paralyzed, same as you T1, I'm actually still in rehab learning how to transfer, and I have been watching your videos non stop. I dont know what to say but thank you for making these. What an inspiration. I can barely transfer to my chair right now. But after watching your videos I'm so positive and know its possible. Thank you again, you have no idea how much they have helped motivate me!!
I am a T12 complete. Thought I'd share how I sleep. Much like you said, I'm on my butt all day, so I try to sleep on my side, or tummy - usually on the side is most popular. When I'm on my side, I bend one leg (top) up slightly, and make sure it's not resting on the leg closest to the bed. When I'm ready to turn over, I push the bent leg down, so both legs are straight. I then roll on my stomach and keep going till I'm on my other side. What tends to naturally happen, is your top leg will be well over your bottom and avoids pressure. I find it easiest this way because I don't have to sit up. It doesn't the unfortunate part of paralyzed sleeping - you still have are going to have to wake up to do it. Anyway, thanks for all the videos, Brian. I've been watching them since my accident in 2012, so keep up the great work!
Thank you so much for this video! I am studying interior design and your videos have really helped my understanding of how those with disabilities need a space to accommodate them.
Thank you so much for making these videos and sharing your life with us. My husband recently became paraplegic after falling off the roof and suffering a spinal cord injury. I have found your videos so helpful as I prepare for his home coming. Please continue doing what your doing. You are so inspirational, your strength and confidence in yourself as you explain everything is admirable.
I love the "throw legs" part. I have been in a chair since 2010, and I do the same thing. The momentum is so helpful when the rest of me is being uncooperative. I also use a body pillow between my knees at night. After three close calls on the inside of my knees, I finally started using one. I sleep in sort of a modified fetal position. It is very comfortable and I've had very few issues with skin breakdown. :) It really is trial and error though. We have a 12 inch memory/high density foam mattress. It is very nice for keeping me in good shape :) Even nearly 5 years later, I still learn new things! thank you! EDIT: I am a T11-L3 Incomplete.
I've been injured since 2001 and sleeping has always been interesting. I've used an alternating pressure pad system (pump and mattress) since my first pressure sore experience and it's worked very well. I love to see others with a positive attitude while dealing with such a life changing event. Take care, God bless!!!
Thank you for doing all of these videos. Someone dear to me had a T4 / T5 complete injury. We talk daily but I am not with him physically. So these videos help me to understand what he goes through on a moment to moment, hour to hour and day-to-day basis. Fortunately he has a lot of help, but I am trying to learn more so that I can be a more supportive friend.
How do you know if you’ve injured your legs? Like breaking a bone from how you have to throw your legs sometimes. And do you have to constantly check for scratches and scraps on your legs from hitting something without realizing it? I just recently discovered your channel. Watching your everyday life and how you cope is very fascinating and inspirational.
I am a T4 para. I was sent for a scan for possible clots. A while later I got a phone call to say I had no clots and my broken shin bone was healing well. WHAT??? No sign of a break even on the skin. Probably happened when I had a spasm getting into my car. The leg kicked out and up under the open door.
great videos, thanks for sharing all your knowledge. one thing I wanted to share about core muscles, i am a complete t4/5 para from way back in 1985. I now live in Vancouver BC and have great access to many ICORD SCI related studies, have taken part in quite a few over the past 10 years or so. I found out that i do in fact have working core/stomach muscles, wish I knew this 30+ years ago. Just wanted to share and encourage everyone to work on their stomach muscles even if the doctors have said you have non working below your level of injury. I did one study that proved I had working pelvic floor muscles still, like wow. keep up the great work.
Wow, I keep getting different assessments. Right after surgery was t7 complete, then t8complete, as of 05-20-2021 t4 incomplete. I have severe spasticity like yours before your pump. (watched almost every vid.) Currently taking 80mg baclofen oral. I had a "Pain Pump" inserted three years ago and they botched where the cathaters entered the intrathecal area of my spine and it was removed. Ironically during the fusion surgery that left me paralyzed. Sadly insurance won't allow a second. However you and I must be related some how. I will never give in to this change in the way I live. I am actually getting a ton of controlled movement back. I have just passed the one year mark and love the insight into how you are living without limits. I used to ride bikes and love how you modified yours. If only I hadn't sold mine already. I don't have the words to express how much your vid's help me stay optimistic. We are the same size and build, I say all the time " If he can do it, so can I" I do wish I could throw my feet around like you but then again the harder I work the more I can move them the way I used to. No one can or will tell me what to expect in the next 3~5 years. I have worked with EKSO and their ESKO~skeleton suit and walked 800' two days in a row. Don't have the $150k for one though. YOU ARE TOUCHING PEOPLE IN SUCH A POSITIVE WAY~ DON'T STOP. I'll be watching and by the way congrats DAD! I've raised mine so can't wait to see how you make out as a new parent. Thanks for inspiring people like me.
I am not paralyzed but I have mild spinal cord injury and I have had issue's going numb while trying to sleep, tried couple different mattresses so Thanks for making this. Sending love and light. You are Awesome... :))))))
You are so educational in your video's thank you. I teach and you are a born teacher and mentor for the disabled. Thanks again. Sitting on our butts all day is really a "pain in the neck" no pun intended.
I’ve been a T6 since 2005, and also sleep on my belly. After I pull up next to the bed, I put one leg up on the mattress then actually just roll into bed, so then I’m already on my belly! I turn my hips out slightly so the pressure isn’t directly in my knees. I also slide down so that my feet hang off the end of the bed, as the tops of my feet (esp my toes) tend to be very sensitive to the pressure of being against the mattress. This also lets my ankles take a more natural position. I typically will sleep throughout the night.
Never give up hope my friend - nothing is impossible and one day they will discover how to fix your disability - just believe that it can be done and that one day it will. My prayers are with you and all others like you - Nam-Myoho-Renge-Kyo : )
Thanks very much for your videos. They are very informative and helpful. I was wondering if you have any thoughts on multipodis boots. When I was first injured, I was told every time I'm in bed, I need to have them on to avoid drop foot. But they keep me from turning at night. I'm considering losing them so I can flip over from time to time. Any thoughts or advice?
Great question. Yes, ditch them is my suggestion. I hated those things and they are very restrictive. Besides, you spend all day on your back/butt so it's important to sleep in your side or stomach as much as possible to give your skin a rest. If you are sitting in a wheelchair with your feet flat on the footplate all day you will achieve the same effect. I've had absolutely no problems without using them.
My brother has the same t1 injury but his legs are a lot heavier so it's harder for him to transfer and move his legs so any suggestions but also have you ever had any problems with your feet swelling up after the injury
My legs were heavier too but over time the loss of muscle made them much easier to move. Yes, my feet do swell during the day but the swelling typically goes down at night once I am laying down.
Swelling of feet is normal for SCI. It happens because since the person cannot walk, & walking, moving the legs helps to move blood & fluids down then back up, it accumulates in the feet. So laying down at night it is able to move back up, but may result in high urine volumes. It is best to lay down for a bit during the day if possible to prevent so much swelling.
@@ParalyzedLiving Hi Brian, how are you? Great video!!! Your ideas are so inspiring. Take care of your health. Your an inspiration. Kind regards, from, PaulLaw.
This might be a weird thing to say, but I never thought that you could still use your body even if your brain can't move your body. It's very interesting to see how you are able to use leverage and momentum to get around.
Hello, I was wondering if you set an alarm to wake up and roll over every few hours or if you wake up naturally to do so. If you wake up on your own, did you use an alarm in the beginning?
+TheeMelKel Yes, I just naturally wake up at this point. My wife used to turn me in the beginning but that didn't last long before I started doing it myself.
@@ParalyzedLiving Hi Brian, how’s the you? I was wondering if you set an alarm clock to wake up and roll over every few hours or if you wake up naturally to do so. If you wake up on your own, did you use an alarm in the beginning? Kind regards, from, PaulLaw.
Hi i been paralyzed for 2 years n Dec my spinal cord injury is C1 and C4 from my chest down I couldn't move in my fingers wouldn't move and my arms now it's been 2 years I've been moving a lot on my own doing my own therapy at home everyday I come back from dialysis I still do my therapy even though im weak from dialysis. The doctor said I won't be able to move or walk again but I'm moving my body more than I was before hopefully I walk again
I’m not paralyzed but I can not walk and I have to hold on to a blank to pull my self up. My whole body hurts anymore. I’m looking for a good power wheelchair. One that folds so it can fit in the trunk of a car. My house isn’t to big so I thought a foldable wheelchair would be perfect. I’m waiting for my husband to order me a chair. If I was able to order I would of had one last year. I really hate having to depend on people. Not being able to do anything for myself is stressing me out. I thought a wheelchair would help me out and I would not me stuck in a bed 24/7 I do go to dr appointments Take care and stay safe.
You know, I have watched paralyzed people maneuver themselves numerous times over the years on TV or movies or presentation like this. My mother’s first husband was a paraplegic but that was before I was born. But watching your vlogs over the last couple of days, for the first time I really now realize that your legs are actually dead. Maybe it is the way you just throw your legs around. God bless you!
They aren’t dead necessarily but they certainly don’t work anymore. It’s interesting for me to watch people playing paraplegics on TV bc I can always tell that they aren’t actually paralyzed. I guess you have to live it to really tell though. Glad you found the vids interesting! Have a happy new year! 🎊
Are you still able to feel nausea and throw up if you have to for whatever reason? Like if you ate something bad for example? If not, then what happens if you do eat something bad? What if you eat too much? Do you have to be careful about not eating to much food so you don't overload your stomach without being able to feel it?
Melissa0774 My stomach still works normally and yes I can throw up and get sick. If I eat too much I just feel really uncomfortable. It’s like I can still feel the inside of my body but not the outside of that makes any sense. (Doesn’t to me) I also need to be careful with foods that make me have to poop (TMI?) so I don’t have issues.
do you ever injure or bruise your legs when throwing them around like that? Also, maybe a stupid question but do you have any feeling at all from the chest down with your T1 injury? I'd imagine you would have to be careful if you don't have any feeling when it comes to injuries below the chest. or is it just mostly muscle control?
+Dave Hanson Ironically, the only pressure sore I've had was when I was in the rehab hospital right after my injury and it cleared up fairly quickly once i got home. I use a ROHO Hybrid cushion and feel they offer the most protection out of the others I have tried.
I had a minor stroke riding my motorcycle nd fell off going slow.....hit head first so now I am T3 T4 incomplete....this happened three months ago....I am driviving again and learning my new life.....getting dressed I still need help.....wheelchair skills are going to take some time.....hopefully on my bike soon too
+james lonneville I have had a few complications......like vertigo when I was in bed too much at first....I feel I have a great therapist.....He is making things happen faster than I expected. I know it is my attitude and drive too. He has clients that have gone to Cuba and to the US for therapy......They have come back with further set backs.....I WILL stick with my therapist here in Guadalajara Mmexico...I am from Upstate,NY and have been down here a few years......My accident happened here and I had great care
+james lonneville Sorry to hear about that James but I'm glad you are getting good care down there. Just know that your attitude has everything to do with whether or not you can still be happy. If you fight it life will fight back. If you roll with it life can be much easier.
Thanks!!!! Yes...roling with life and accepting is the only way!!! I knew my situation when I was in the hospital. I accepted it so attitude goes further than blaming and feeling like poor me!! you have a great attitude and what you are doing helps others....keep up the great work!!
Do you think it would be easier if they removed your legs from maybe the knee down. I have a friend that is paralyzed. And he always says he wished they would just remove the bottom half of his legs because they r dead weight and just in the way. How do you feel?
When you sleep let your feet hang off the mattress and let you legs carry the weight. You'll never get a pressure injury on the ball of your feet since you have no foot board.
Isn't it funny how the body automatically can sometimes give reflexive movements like your feet moving, or your knee coming up as you tell your body you're sitting up. Just goes to show it's not really that the legs aren't working, just that the paths are crossed
Question!! Sleeping on your stomach every night, does that affect your feet hanging. Cause I’m a stomach sleeper as well and my feet look like they just want to stay in that hanging position after I get up for the day?
Hey Ethan - My feet will still lay flat on my footplate during the day even though I sleep on my stomach but I have very little ability to flex my feet upward toward my body beyond 90 degrees. Like if Im sitting with legs straight and try to pull the top of my foot back toward my body it’s really stiff and the bottom of my foot stays perpendicular to my leg. I’m actually in the process of starting a stretch regiment since this has become an issue.
My internal organs still work...I just cant feel/move my muscles below my chest. My caughing/sneezing/yelling is definitely not as strong as before my injury since I don't have abs to assist but my diaphram still allows me to breathe.
The main muscle in breathing is the diaphragm, which is innervated by the so called phrenic nerve (or nervus phrenicus) which is the branch of the 4th cervical nerve. If the spinal cord injury is below the C4 (the 4th Cervical segment of the spinal cord) then the diaphragm will work after the injury allowing the patient to breathe. If the injury is in the level of the C4 or above then the patient will die shortly after the injury (unless they are ventilated mechanically) because phrenic nerve and so the diaphragm will not work.
Thanks so much for the information. I remember seeing Christopher Reeve after his accident and thinking he had nothing but a head left. Do you ever thank the lord that even tho you're injured it wasn't as bad as a that?
Lyric WasHere You are welcome! (Actually, I did not have a spinal cord injury, I'm a medical student.) I looked up Christopher Reeve in Wikipedia: "His helmet prevented any brain damage, but the impact of his 215-pound (98 kg) body hitting the ground shattered his first and second vertebrae. Reeve had not been breathing for three minutes before paramedics arrived."
What do you do to keep your legs so flexible, I am paralyzed too and my legs are stiff even though I do pt. I am guessing it is because of the muscles in my legs but I don't know, I can barely bend my legs. The stiffness is very painful as I have feeling in my legs but not like before.
Dale Jensen I too used to have extremely tight spastic legs and it was horrible. I got a Baclofen pump to control spasticity and since then life is much more manageable and comfortable.
I'm an incomplete and I too use the sides of the bed...I have a temperpedic which has very square edges to the bed...I grab onto them when turning over. I turn a lot at night due to pain in my hips, arms, do you get pain like that while sleeping?
A friend just got release from the hospital she has 2 disk fracture (from spinal cord) on the paper she got from the hospital it says she can return to work after 2 days. I feel like that's not very much resting for her. Is 2 days enough ?
Exploring and bottle collecting with Jimmy not a stupid question! I can’t “feel” when I hurt myself below my injury but my body still responds to pain. I get a very sick, uncomfortable feeling and usually feel a lot of tingling throughout my body. If the pain is bad enough it can even trigger high blood pressure and severe headaches. All of this is called autonomic dysreflexia and there are different levels depending on pain severity. It’s a common issue amongst spinal cord injuries and can be very dangerous if the source is not identified and treated immediately. I get a mild form when I have to go to the bathroom which helps me identify when I have to go.
how do you go about getting the right wheelchair I have scoliosis and stenosis with some damage on my spinal cord getting harder to move my legs and lift them had 4 surgeries nothing helped I need a real light wheelchair cause of pain but medicare doesn't cover it they say need some help any advice
You need to find a therapist that specializes in Physical Medicine and Rehabilitation to evaluate you and write a letter of necessity. Check with your primary care doctor to see if they can set you up with one.
Hi Brian. You talked about insomnia in a video. What was the insomnia like, i.e. where you experiencing any shaking or any pains when you couldn't sleep, and what did you find the problem to be? Thank you.
+Kashflo Dolla The insomnia was caused my a bad reaction to the antibiotic Cipro. It threw off the chemicals in my brain and for about 8 months I couldn't sleep normally. I think the time I had insomnia was probably worse than getting paralyzed. It almost drove me insane and really affected my personality and quality of life. I would just lay in bed for hours, tossing and turning. Then have to go to work and do it all over again. It got to the point that I dreaded going to bed. I didn't experience any shaking or pain that I can recall but when I am overly tired my body gets this constant buzzing feeling. It's hard to explain but it obviously affects the nerves.
No, it doesn't really get in the way. Occasionally when I'm bending over it gets caught under my rib cage so that feels kinda weird but for the most part it doesn't get in my way.
I'm 22 with a T7 injury and I continously having this burning kinda a feeling from the center of my back to my legs its awful even wen I'm asleep I cn feel it
@@ParalyzedLiving thank you for your reply. I am a D4 paraplegic with left upper limb and shoulder disfunction and I use a condom catheter while sleeping supine at night.
I can usually make it all the way through the night without getting up to cath. I take oxybutynin and get bladder botox injections to control bladder spasms so that has really helped. I used to have to get up at least once or twice to avoid accidents.
Wow! Thats awesome. I have so many accidents right now with my bladder. I cath every 3 hours. Oxybutnin doesn't work for me because my body doesn't digest it so I take levsin. And thats not working. Does insurance pay for botox injections?
I found Oxybutynin didn't do anything for my bladder spasms. I take a Tolteradine 2mg tablet twice daily and it really helps. I'm the the UK so don't know if you can get this in the US. All the best.
My question is how do you keep the selling down in your feet. I see yours dont appear to be swollen. I just got out of the hospital a month ago and I would love some tips thanks.
My feet swell a little during the day when I'm up in my chair all day but the swelling tends to go down at night when I sleep since I'm laying flat. I don't do anything special though to keep the swelling down.
how come spinal cord injury people get more help be cause I got teased at school everyday calling me spastic and assorts of other names and now a ambassador and got and MBE because she's a Paralympian getting everything paid for and why should we find watching you get in and out of other things i am Physically Disabled and in a wheelchair as well but I wouldn't want people looking at me getting in and transferring but people after a Spinal Cord Injury expect to much all of you you don't see people disabled from birth though no fault of there own doing videos paralyzed living should be kept private I have all sorts wrong with me even brain Atrophy as well i am not getting at you i just would like to know why do you think its so important that people should know about how you lot get to do things i am living with my dishabilles quietly i think i have this because i was severely bullied she put my head down the toilet and she was always pushing me down the stone stairs at school I don't mean to sound awful but why
There’s a greater cause. He’s putting out information to help those who wouldn’t be able to otherwise. Not everyone is comfortable to the point where they can ask a doctor/ therapist every single thing they need to know. And honestly I’d rather take tips from someone living like me because they’re speaking from personal experiences and not research.
I don't have a spinal cord injury or, but man i'm really impressed with your videos. you are very inspiring.
I just recently became paralyzed, same as you T1, I'm actually still in rehab learning how to transfer, and I have been watching your videos non stop. I dont know what to say but thank you for making these. What an inspiration. I can barely transfer to my chair right now. But after watching your videos I'm so positive and know its possible. Thank you again, you have no idea how much they have helped motivate me!!
I am a T12 complete. Thought I'd share how I sleep. Much like you said, I'm on my butt all day, so I try to sleep on my side, or tummy - usually on the side is most popular. When I'm on my side, I bend one leg (top) up slightly, and make sure it's not resting on the leg closest to the bed. When I'm ready to turn over, I push the bent leg down, so both legs are straight. I then roll on my stomach and keep going till I'm on my other side. What tends to naturally happen, is your top leg will be well over your bottom and avoids pressure. I find it easiest this way because I don't have to sit up. It doesn't the unfortunate part of paralyzed sleeping - you still have are going to have to wake up to do it.
Anyway, thanks for all the videos, Brian. I've been watching them since my accident in 2012, so keep up the great work!
Sarah Aken waking up to move SUCKS... it’s a real struggle .. for a pretty independent quad also.
Thank you so much for this video! I am studying interior design and your videos have really helped my understanding of how those with disabilities need a space to accommodate them.
You’re great
Thank you so much for making these videos and sharing your life with us. My husband recently became paraplegic after falling off the roof and suffering a spinal cord injury. I have found your videos so helpful as I prepare for his home coming. Please continue doing what your doing. You are so inspirational, your strength and confidence in yourself as you explain everything is admirable.
Sorry to hear that. I'm glad you're preparing your best to help him every step
Did you leave him yet?
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@mydnytmover what an awful thing to say. No I did not 😢
Good to see you making videos again man.
You make it look effortless
I love the "throw legs" part. I have been in a chair since 2010, and I do the same thing. The momentum is so helpful when the rest of me is being uncooperative. I also use a body pillow between my knees at night. After three close calls on the inside of my knees, I finally started using one. I sleep in sort of a modified fetal position. It is very comfortable and I've had very few issues with skin breakdown. :) It really is trial and error though. We have a 12 inch memory/high density foam mattress. It is very nice for keeping me in good shape :) Even nearly 5 years later, I still learn new things! thank you!
EDIT: I am a T11-L3 Incomplete.
I've been injured since 2001 and sleeping has always been interesting. I've used an alternating pressure pad system (pump and mattress) since my first pressure sore experience and it's worked very well. I love to see others with a positive attitude while dealing with such a life changing event.
Take care, God bless!!!
Thank you for doing all of these videos. Someone dear to me had a T4 / T5 complete injury. We talk daily but I am not with him physically. So these videos help me to understand what he goes through on a moment to moment, hour to hour and day-to-day basis. Fortunately he has a lot of help, but I am trying to learn more so that I can be a more supportive friend.
So happy these videos are helpful!! They are for everyone - not just those who are paralyzed.
You should make a video on spasms and how bad it has been and what causes it
thank you so much for these videos. i think its a great help to those that are new to parapeligia and their families
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How do you know if you’ve injured your legs? Like breaking a bone from how you have to throw your legs sometimes. And do you have to constantly check for scratches and scraps on your legs from hitting something without realizing it? I just recently discovered your channel. Watching your everyday life and how you cope is very fascinating and inspirational.
You have to be careful, yes, the pain sensation is not there. This means an infection can result in dead if not caught.
I am a T4 para. I was sent for a scan for possible clots. A while later I got a phone call to say I had no clots and my broken shin bone was healing well. WHAT??? No sign of a break even on the skin. Probably happened when I had a spasm getting into my car. The leg kicked out and up under the open door.
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Amazing how you don't let nothing stop you from doing anything. New to your channel
great videos, thanks for sharing all your knowledge. one thing I wanted to share about core muscles, i am a complete t4/5 para from way back in 1985. I now live in Vancouver BC and have great access to many ICORD SCI related studies, have taken part in quite a few over the past 10 years or so. I found out that i do in fact have working core/stomach muscles, wish I knew this 30+ years ago. Just wanted to share and encourage everyone to work on their stomach muscles even if the doctors have said you have non working below your level of injury. I did one study that proved I had working pelvic floor muscles still, like wow. keep up the great work.
How,can you please tell me I'm a quadriplegic after an accident 10 years back.Would be glad if you could teach me.
@@engchuankoh7291 good luck
Wow, I keep getting different assessments. Right after surgery was t7 complete, then t8complete, as of 05-20-2021 t4 incomplete. I have severe spasticity like yours before your pump. (watched almost every vid.) Currently taking 80mg baclofen oral. I had a "Pain Pump" inserted three years ago and they botched where the cathaters entered the intrathecal area of my spine and it was removed. Ironically during the fusion surgery that left me paralyzed. Sadly insurance won't allow a second.
However you and I must be related some how. I will never give in to this change in the way I live. I am actually getting a ton of controlled movement back. I have just passed the one year mark and love the insight into how you are living without limits. I used to ride bikes and love how you modified yours. If only I hadn't sold mine already. I don't have the words to express how much your vid's help me stay optimistic. We are the same size and build, I say all the time " If he can do it, so can I" I do wish I could throw my feet around like you but then again the harder I work the more I can move them the way I used to. No one can or will tell me what to expect in the next 3~5 years. I have worked with EKSO and their ESKO~skeleton suit and walked 800' two days in a row. Don't have the $150k for one though. YOU ARE TOUCHING PEOPLE IN SUCH A POSITIVE WAY~ DON'T STOP. I'll be watching and by the way congrats DAD! I've raised mine so can't wait to see how you make out as a new parent. Thanks for inspiring people like me.
I am not paralyzed but I have mild spinal cord injury and I have had issue's going numb while trying to sleep, tried couple different mattresses so Thanks for making this. Sending love and light. You are Awesome... :))))))
Good luck, young man. You seem to have a very good attitude. Best wishes.
I love your videos! So happy to see a new one up. You inspire me so much! I'm a complete as we'll, T6.
Hey
Another great video - I haven't tried to transfer from my chair to the bed without a transfer board yet but you make it look easy
cokc23p36 he is skinny, long arms, and not very tall.. all pluses.
You are so educational in your video's thank you. I teach and you are a born teacher and mentor for the disabled. Thanks again. Sitting on our butts all day is really a "pain in the neck" no pun intended.
My son is T5 cvomplete, but no spasms new June 16, 2018. I will show him this to help him. Thank u for posting.
I’ve been a T6 since 2005, and also sleep on my belly. After I pull up next to the bed, I put one leg up on the mattress then actually just roll into bed, so then I’m already on my belly! I turn my hips out slightly so the pressure isn’t directly in my knees. I also slide down so that my feet hang off the end of the bed, as the tops of my feet (esp my toes) tend to be very sensitive to the pressure of being against the mattress. This also lets my ankles take a more natural position. I typically will sleep throughout the night.
Never give up hope my friend - nothing is impossible and one day they will discover how to fix your disability - just believe that it can be done and that one day it will. My prayers are with you and all others like you - Nam-Myoho-Renge-Kyo : )
This is so disturbingly sad. I’m so sorry this happened.
Thanks very much for your videos. They are very informative and helpful. I was wondering if you have any thoughts on multipodis boots. When I was first injured, I was told every time I'm in bed, I need to have them on to avoid drop foot. But they keep me from turning at night. I'm considering losing them so I can flip over from time to time. Any thoughts or advice?
Great question. Yes, ditch them is my suggestion. I hated those things and they are very restrictive. Besides, you spend all day on your back/butt so it's important to sleep in your side or stomach as much as possible to give your skin a rest. If you are sitting in a wheelchair with your feet flat on the footplate all day you will achieve the same effect. I've had absolutely no problems without using them.
hi james... feeling bad for u... but u have handled it very well... everything is a part of life... pray i'll see u on ur bike soon...
I'm so proud of you I have c6 c7 injury I can't move my body at all
My brother has the same t1 injury but his legs are a lot heavier so it's harder for him to transfer and move his legs so any suggestions but also have you ever had any problems with your feet swelling up after the injury
My legs were heavier too but over time the loss of muscle made them much easier to move. Yes, my feet do swell during the day but the swelling typically goes down at night once I am laying down.
Swelling of feet is normal for SCI. It happens because since the person cannot walk, & walking, moving the legs helps to move blood & fluids down then back up, it accumulates in the feet. So laying down at night it is able to move back up, but may result in high urine volumes. It is best to lay down for a bit during the day if possible to prevent so much swelling.
@@ParalyzedLiving Hi Brian, how are you? Great video!!! Your ideas are so inspiring. Take care of your health. Your an inspiration. Kind regards, from, PaulLaw.
very useful. i will share with my dad. thanks again. please keep posting.
This might be a weird thing to say, but I never thought that you could still use your body even if your brain can't move your body. It's very interesting to see how you are able to use leverage and momentum to get around.
Hello, I was wondering if you set an alarm to wake up and roll over every few hours or if you wake up naturally to do so. If you wake up on your own, did you use an alarm in the beginning?
+TheeMelKel Yes, I just naturally wake up at this point. My wife used to turn me in the beginning but that didn't last long before I started doing it myself.
+Paralyzed Living thank you!
@@ParalyzedLiving Hi Brian, how’s the you? I was wondering if you set an alarm clock to wake up and roll over every few hours or if you wake up naturally to do so. If you wake up on your own, did you use an alarm in the beginning? Kind regards, from, PaulLaw.
Hey thanks for your video, I have been struggling with issues that your video resolved. Thanks again....
Hi i been paralyzed for 2 years n Dec my spinal cord injury is C1 and C4 from my chest down I couldn't move in my fingers wouldn't move and my arms now it's been 2 years I've been moving a lot on my own doing my own therapy at home everyday I come back from dialysis I still do my therapy even though im weak from dialysis. The doctor said I won't be able to move or walk again but I'm moving my body more than I was before hopefully I walk again
l'm pretty much a stoic hard ass. You, however, make me feel something; not pity, mind you, but compassion.
Hello sir, what are you injured for? and which part of the spine is broken?
Q: any special kinda diet you have for eating to stay in shape since you work out n looking fit bro...huh???
I mean this is all I was afraid to ask. Thank you.
I’m not paralyzed but I can not walk and I have to hold on to a blank to pull my self up.
My whole body hurts anymore. I’m looking for a good power wheelchair. One that folds so it can fit in the trunk of a car. My house isn’t to big so I thought a foldable wheelchair would be perfect. I’m waiting for my husband to order me a chair. If I was able to order I would of had one last year.
I really hate having to depend on people. Not being able to do anything for myself is stressing me out. I thought a wheelchair would help me out and I would not me stuck in a bed 24/7 I do go to dr appointments
Take care and stay safe.
Thank you for the infor it helps instead of a 'crash' onboard bed.
Helpful video thank you
Good video but I'm paralyzed from the waist down and cant hop in bed since I cant but saved the video for the history since every bit can be useful.
You are so good.
I really like your videos!
pls brother how do i get this intermittent catheters and how do i use it as this my main chalange as to sleep with out weiting my bed. THANKS
You know, I have watched paralyzed people maneuver themselves numerous times over the years on TV or movies or presentation like this. My mother’s first husband was a paraplegic but that was before I was born. But watching your vlogs over the last couple of days, for the first time I really now realize that your legs are actually dead. Maybe it is the way you just throw your legs around. God bless you!
They aren’t dead necessarily but they certainly don’t work anymore. It’s interesting for me to watch people playing paraplegics on TV bc I can always tell that they aren’t actually paralyzed. I guess you have to live it to really tell though. Glad you found the vids interesting! Have a happy new year! 🎊
Do you do all this with a catheter in or you put on diapers. I'm asking because I'm a spinal cord patient and I need help on a lot of things
Are you still able to feel nausea and throw up if you have to for whatever reason? Like if you ate something bad for example? If not, then what happens if you do eat something bad? What if you eat too much? Do you have to be careful about not eating to much food so you don't overload your stomach without being able to feel it?
Melissa0774 My stomach still works normally and yes I can throw up and get sick. If I eat too much I just feel really uncomfortable. It’s like I can still feel the inside of my body but not the outside of that makes any sense. (Doesn’t to me) I also need to be careful with foods that make me have to poop (TMI?) so I don’t have issues.
Thanks.
Awesome coordination wow!
I'm also having same injury
do you ever injure or bruise your legs when throwing them around like that? Also, maybe a stupid question but do you have any feeling at all from the chest down with your T1 injury? I'd imagine you would have to be careful if you don't have any feeling when it comes to injuries below the chest. or is it just mostly muscle control?
Sergeant Seven yes I have to be careful throwing my legs around and always wear shoes to protect my feet.
You are great. Much love for u
Brian, have you ever had a pressure sore at any time during your injury? What cushion do you use in your chair?
+Dave Hanson Ironically, the only pressure sore I've had was when I was in the rehab hospital right after my injury and it cleared up fairly quickly once i got home. I use a ROHO Hybrid cushion and feel they offer the most protection out of the others I have tried.
Thanks very very very much for this describes
Good luck
I had a minor stroke riding my motorcycle nd fell off going slow.....hit head first so now I am T3 T4 incomplete....this happened three months ago....I am driviving again and learning my new life.....getting dressed I still need help.....wheelchair skills are going to take some time.....hopefully on my bike soon too
+james lonneville I have had a few complications......like vertigo when I was in bed too much at first....I feel I have a great therapist.....He is making things happen faster than I expected. I know it is my attitude and drive too. He has clients that have gone to Cuba and to the US for therapy......They have come back with further set backs.....I WILL stick with my therapist here in Guadalajara Mmexico...I am from Upstate,NY and have been down here a few years......My accident happened here and I had great care
+james lonneville Sorry to hear about that James but I'm glad you are getting good care down there. Just know that your attitude has everything to do with whether or not you can still be happy. If you fight it life will fight back. If you roll with it life can be much easier.
Thanks!!!! Yes...roling with life and accepting is the only way!!! I knew my situation when I was in the hospital. I accepted it so attitude goes further than blaming and feeling like poor me!! you have a great attitude and what you are doing helps others....keep up the great work!!
You’re a incredible person
Do you think it would be easier if they removed your legs from maybe the knee down. I have a friend that is paralyzed. And he always says he wished they would just remove the bottom half of his legs because they r dead weight and just in the way. How do you feel?
That’s a good question! There’s so much technology with prosthetics these days.
you must have strong arms :-)
When you sleep let your feet hang off the mattress and let you legs carry the weight. You'll never get a pressure injury on the ball of your feet since you have no foot board.
do you feel pain?
I'm L1 injured since 4 years now. I can't sit, sleep in any position cuz it hurts... I take painkillers still hurts a lot.
4 years
I don't have any pain below my chest level. I know several others who deal with chronic pain and I know it can be very debilitating.
+Paralyzed Living it's... I can even seat cuz it hurts a lot 😢
I admire you. I love your videos and your bike too
Pride and strength
I have heard new treatments been discovered lately , you thinking about any of that ??
Isn't it funny how the body automatically can sometimes give reflexive movements like your feet moving, or your knee coming up as you tell your body you're sitting up. Just goes to show it's not really that the legs aren't working, just that the paths are crossed
Follow me
Question!!
Sleeping on your stomach every night, does that affect your feet hanging. Cause I’m a stomach sleeper as well and my feet look like they just want to stay in that hanging position after I get up for the day?
Hey Ethan - My feet will still lay flat on my footplate during the day even though I sleep on my stomach but I have very little ability to flex my feet upward toward my body beyond 90 degrees. Like if Im sitting with legs straight and try to pull the top of my foot back toward my body it’s really stiff and the bottom of my foot stays perpendicular to my leg. I’m actually in the process of starting a stretch regiment since this has become an issue.
if you can't feel your chest how do you breathe on your own?
My internal organs still work...I just cant feel/move my muscles below my chest. My caughing/sneezing/yelling is definitely not as strong as before my injury since I don't have abs to assist but my diaphram still allows me to breathe.
The main muscle in breathing is the diaphragm, which is innervated by the so called phrenic nerve (or nervus phrenicus) which is the branch of the 4th cervical nerve.
If the spinal cord injury is below the C4 (the 4th Cervical segment of the spinal cord) then the diaphragm will work after the injury allowing the patient to breathe.
If the injury is in the level of the C4 or above then the patient will die shortly after the injury (unless they are ventilated mechanically) because phrenic nerve and so the diaphragm will not work.
Thanks so much for the information. I remember seeing Christopher Reeve after his accident and thinking he had nothing but a head left. Do you ever thank the lord that even tho you're injured it wasn't as bad as a that?
Lyric WasHere
You are welcome!
(Actually, I did not have a spinal cord injury, I'm a medical student.)
I looked up Christopher Reeve in Wikipedia:
"His helmet prevented any brain damage, but the impact of his 215-pound (98 kg) body hitting the ground shattered his first and second vertebrae. Reeve had not been breathing for three minutes before paramedics arrived."
yeah I know I was asking blackpearlv6, the man who made the video. Cheers! :)
God bless you
I am a C4 , 4th cervical vertebrae.
What do you do to keep your legs so flexible, I am paralyzed too and my legs are stiff even though I do pt. I am guessing it is because of the muscles in my legs but I don't know, I can barely bend my legs. The stiffness is very painful as I have feeling in my legs but not like before.
Dale Jensen I too used to have extremely tight spastic legs and it was horrible. I got a Baclofen pump to control spasticity and since then life is much more manageable and comfortable.
I'm an incomplete and I too use the sides of the bed...I have a temperpedic which has very square edges to the bed...I grab onto them when turning over. I turn a lot at night due to pain in my hips, arms, do you get pain like that while sleeping?
No, I don't usually have pain while sleeping. I have a complete injury with no sensation below T1 so maybe that's why.
merry xmas and happy new year
A friend just got release from the hospital she has 2 disk fracture (from spinal cord) on the paper she got from the hospital it says she can return to work after 2 days. I feel like that's not very much resting for her. Is 2 days enough ?
You are amazing!
I'm sorry but here's a stupid question if you stub your toe or bump your leg do you experience any pain with that Take care
Exploring and bottle collecting with Jimmy not a stupid question! I can’t “feel” when I hurt myself below my injury but my body still responds to pain. I get a very sick, uncomfortable feeling and usually feel a lot of tingling throughout my body. If the pain is bad enough it can even trigger high blood pressure and severe headaches. All of this is called autonomic dysreflexia and there are different levels depending on pain severity. It’s a common issue amongst spinal cord injuries and can be very dangerous if the source is not identified and treated immediately. I get a mild form when I have to go to the bathroom which helps me identify when I have to go.
how do you go about getting the right wheelchair I have scoliosis and stenosis with some damage on my spinal cord getting harder to move my legs and lift them had 4 surgeries nothing helped I need a real light wheelchair cause of pain but medicare doesn't cover it they say need some help any advice
You need to find a therapist that specializes in Physical Medicine and Rehabilitation to evaluate you and write a letter of necessity. Check with your primary care doctor to see if they can set you up with one.
Alright thanks that is something I didn't know thank you for the help and God Bless yoj
Have they offered you a spinal fusion? I had 2 spinal fusions as one failed.
Hi Brian. You talked about insomnia in a video. What was the insomnia like, i.e. where you experiencing any shaking or any pains when you couldn't sleep, and what did you find the problem to be? Thank you.
+Kashflo Dolla The insomnia was caused my a bad reaction to the antibiotic Cipro. It threw off the chemicals in my brain and for about 8 months I couldn't sleep normally. I think the time I had insomnia was probably worse than getting paralyzed. It almost drove me insane and really affected my personality and quality of life. I would just lay in bed for hours, tossing and turning. Then have to go to work and do it all over again. It got to the point that I dreaded going to bed. I didn't experience any shaking or pain that I can recall but when I am overly tired my body gets this constant buzzing feeling. It's hard to explain but it obviously affects the nerves.
I was curious...you said you usually sleep on your stomach. Does the pump make that uncomfortable sometimes?
No, it doesn't really get in the way. Occasionally when I'm bending over it gets caught under my rib cage so that feels kinda weird but for the most part it doesn't get in my way.
what a model strollers?
My wheelchair is a Tilite ZRA
blackpearlv6 в вашей стране её дали бесплатно? или вы купили её за свои деньги?
Do you wear a leg bag? Im a C6-C7 Quad & im paralyzed from the chest down as well. I use intermittent catheters
Yep, I intermittent cath too.
Did you go for a surgery?
I'm 22 with a T7 injury and I continously having this burning kinda a feeling from the center of my back to my legs its awful even wen I'm asleep I cn feel it
Hi. I am 25 with a t4 injury. How long have you been para?
NawnySoLovely hi I'm 20 with a T7-8 . How long have you been injured
Do you sleep alone or do you still sleep with your spouse. It seems like a lot of room is required to move over.
Yes, I still sleep with my wife. She is used to me moving around by now. I don't kick her off the bed or anything. :)
How do you manage to avoid urine leakage while sleeping at night (since u r not using anytype of catheter).???
I pee before bed and usually wake up in the early morning to pee. I do sleep on a pad just to be safe though.
@@ParalyzedLiving thank you for your reply. I am a D4 paraplegic with left upper limb and shoulder disfunction and I use a condom catheter while sleeping supine at night.
Them Spasms you get are called Clonus.
Have you ever had any skin breakdowns?
I had
How often do you have to cath at night.
I can usually make it all the way through the night without getting up to cath. I take oxybutynin and get bladder botox injections to control bladder spasms so that has really helped. I used to have to get up at least once or twice to avoid accidents.
Wow! Thats awesome. I have so many accidents right now with my bladder. I cath every 3 hours. Oxybutnin doesn't work for me because my body doesn't digest it so I take levsin. And thats not working. Does insurance pay for botox injections?
I found Oxybutynin didn't do anything for my bladder spasms. I take a Tolteradine 2mg tablet twice daily and it really helps. I'm the the UK so don't know if you can get this in the US. All the best.
Thanks I'll look into it
My question is how do you keep the selling down in your feet. I see yours dont appear to be swollen. I just got out of the hospital a month ago and I would love some tips thanks.
My feet swell a little during the day when I'm up in my chair all day but the swelling tends to go down at night when I sleep since I'm laying flat. I don't do anything special though to keep the swelling down.
K thanks man
You must have very strong
who films this?
his wife
Hahaha that’s such a good question
Sorry, but I could never sleep on my stomach.
The way you throw ur legs was so funny but kinda scary 😅😕
Hi... Are you still alive 2024, how are u now
I got tumor Thoracal 4 to 12, it such a shit... Very painful sorry my English not so good
Am from Indonesia
level of your sci ?
T1 complete
Hey are you still alive ? ❤️
Haha yes! I’ve just been busy raising my kiddo and enjoying the time while she’s still young enough to think I’m cool. Lol
Para 27yrs and I will say a temper pedic mattress is fkn horrible 😂 don't do it!
Hahaha thanks for the tip!! I just use a standard pillow top mattress and haven’t had any issues.
It's like trying to maneuver through sand.
Do you believe that you have touched many lives? And that God have a purpose for you.
Nea; Watson yes I see some truth in that!
This is dumb but are your organs at all affected
1:36
j'aim
how come spinal cord injury people get more help be cause I got teased at school everyday calling me spastic and assorts of other names and now a ambassador and got and MBE because she's a Paralympian getting everything paid for and why should we find watching you get in and out of other things i am Physically Disabled and in a wheelchair as well but I wouldn't want people looking at me getting in and transferring but people after a Spinal Cord Injury expect to much all of you you don't see people disabled from birth though no fault of there own doing videos
paralyzed living should be kept private I have all sorts wrong with me even brain Atrophy as well i am not getting at you i just would like to know why do you think its so important that people should know about how you lot get to do things i am living with my dishabilles quietly i think i have this because i was severely bullied she put my head down the toilet and she was always pushing me down the stone stairs at school I don't mean to sound awful but why
There’s a greater cause. He’s putting out information to help those who wouldn’t be able to otherwise. Not everyone is comfortable to the point where they can ask a doctor/ therapist every single thing they need to know. And honestly I’d rather take tips from someone living like me because they’re speaking from personal experiences and not research.
This is not a life
hi Brian im from Pakistan. love watching your videos , do you drive i mean go to office by yourself?
Sameer khan he uses menox hand controls