A big thank you to Alyssa and Binah for letting me feature their Instagram photos, If you would like to see more of them please follow: Alyssa: @wheelielifeinthewheelieworld Binah: @wheeliekool And don’t for get me ;) @wheelsnoheels_ I hope this has cleared a few things up for you and you have maybe learned something new? I have tried to get everything as correct as possible, however I’m not a medical professional, and please use this a guid only. As part of my community I have turned on “community contributions.” I would be thrilled if you would like to add close captions, translations, and subtitles. Im all about accessibility for everybody. I working so hard on my channel to give you the best content I can make. Lets work together to reach more people to inspire, motivate and feel less alone.
I'm an incomplete quad. I have incomplete cervical damage. Mine has been progressive. Thanks for this video! I'm so tired of people thinking I'm getting better because I can move my arms and legs. Its awful because I'm actually getting worse so it sucks to hear.
Great video! The only thing that I would add is that not all people in wheelchairs have spinal cord injuries. I use a wheelchair full time as I’m not weight bearing, but my condition affects the tendons and ligaments instead. Many people just assume that I have a SCI, or that I was affected by some trauma, when it is just my genetics instead!
Yes a good point. I also have a video on this. "why use a wheelchair if your not paralysed." to raise awareness. Thank you for watching. Im glad you enjoyed it. xx
I have EDS and sometimes we are more likely to get injured than the average person. I was rearended and now I'm an incomplete quad. Sadly my injury wasn't caught because I'm so lax everything looked normal on the xray. My ortho said my injury could've been worse but went back into place for the xray. It wasn't until I had an MRI that showed the damage to my spinal cord. So always demand an MRI if you're in an accident. Xray doesn't show the whole story.
Then you contact patient advocacy at the hospital you're at. You can also ask the ER doctor to contact a specialist that can explain the need. There are definitely more steps but if you understand your disease enough and explain everything the doctors will often listen.
Kerry Sheehan my ‘impairment’ is EDS too. I was in hospital (abdominal tumour) and every time I got out of bed I’d do 3 or 4 steps and I’d fall over. The staff told me off like a naughty child for ‘attention seeking, falling over on purpose’ and I wasn’t allowed out of bed, which made getting out of bed worse. Six years on I found out about POTS being linked to EDS, but the effect of being laid in bed for five months took away the ability for the tendons and ligaments to hold my leg, it just bends in all directions and doesn’t hold me up at all, so now I have to use a wheelchair for the rest of my life. I can’t help thinking that if I had been allowed out of bed to walk when I begged to, I’d still be fully mobile for the rest of my life instead.
Thank you, Gem for doing these videos. I am 76 and have cervical myelopathy, C4/C5/C6. My condition has deteriorated so much that I have had to give up driving. I recently bought a motorised wheelchair because it is so difficult to use a manual one. It is great that you making the general public aware of our disability. Bless you.😎
So the assumption that I get a lot that everyone who uses a wheelchair can’t move their legs isn’t even always true of people with SCIs! lol I wonder if people with SCIs also then get accused of faking their need for a wheelchair? I’m not sure I knew that an SCI can also cause difficulties with the autonomic nervous system! I have POTS/dysautonomia but independent of a SCI, more tied to ME/CFS.
I don’t think I have ever been accused of not needing my wheelchair, not to my face anyway, other than the lovely looks I sometimes get when I park in Disabled parking.....and some of them are “brave” enough to knock on my window. Like, what? Don’t put your yucky hands on my van. I’m not trying to get the flu.
My family sadly believes I'm faking. I didn't get a normal SCI. Sadly, my accident happened years ago and they thought was okay but the damage was slow going. Even my doctors treated me like I was crazy untilI finally got an MRI. Sadly, that didn't change my families opinion. Disability is a lonely thing. Then when you have no family support. Its awful.
Kerry Sheehan can you join up with other disabled people in your area? In my experience that usually helps a lot. Although, be aware that not all disabled folk get along lol, but if you can find some you can connect with, that can certainly make the loneliness less.
Hi Gem, I'm so greatful for your videos as they are a great help to me. I'm learning to cope with my spinal stenosis and scoliosis and agree with the mental health problems. Keep doing the great work as you are very helpful to loads of people.
I was born with Spina Bifida and am a paraplegic. I think for my people (people with my form of Spina Bifida) it’s more like the spinal chord/spinal column stopped developing at some point, as apposed to some outside force damaging it. I think my level is L4,L5 I can bounce both knees up and down like nobody’s business lol, esp on the left side. Also if I sit on something like a bench, I can swing both legs a little, esp on the left side. This in no way means that I can bare weight on my legs or stand up and walk around. There’s’ a huge jump between that and what my legs will do. I would need whatever parts I’m missing from my spine/spinal column for all that to happen 😀.
I have SB as well @ my L4 L5 I can get my right leg to move and I can feel it a little but my left leg forget about it. I did some research a while ago because I was curious and read that Spina Bifida is a Congenital Spinal Cord Injury so yes the more serve SB is definitely a SCI just that it occurred whilst we developed in the womb
Great video Gem! Thanks so much for sharing this info so people can understand a little bit of what we go through. It really is such a wide variety of injuries, symptoms and people! You did a great job of explaining that.
Hey Katie. Thank you so much. I was so worried about this one as I really wanted to do it justice. So thank you. Please feel free to share it on your socials. :)
My boyfriend has a T6 incomplete injury. He was a victim of violence and was a healthy soldier. Generally he's positive but if he gets a sore and is laid up for months he can get so down and hates how fragile he is. I'm trying to do my best to learn as much as possible so I can be a better gf for him. Thankyou for making thos video xxx
I am a registered nurse caring for my mom with a C3-4 incomplete SC injury. She is 25 months past her injury. This is a great video...I have never thought about using a banana to demonstrate a SCI...very creative. Thank you for sharing.
Great video - you kept it nice and clear and simple, which isn't an easy task! You can't please everyone, but this will, I hope, raise some awareness about the diversity of a sci. Well done Gem xxx
Gem thank you, for another informative video. Just as a suggestion; when you have several items to cover, it may help you to have cumulative bullet points appear on screen. They could either be as an overlay or simply separate cutaway screens that appear as you are talking; much like your spinal level chart which made that section easier to grasp. The other thing about creating bullet points is it naturally generates a script outline for you. Please don’t take this as a criticism; I always enjoy your videos and I look forward to your next instalment.
Oh thank you. I don't mind at all, I always want to improve and make the videos as good as possible for everyone. If you have a sec, check out "how to instagram in a wheelchair" In there I have cutaways that I think you are referring to? Let me know if thats what you mean? xx
Hello Gem just watched the Instagram video and yes similar to that. In more instructional type videos, my thought was cumulative bullet points, so at the end the viewer has a single page summary of what you’ve been talking about, allowing you to quickly recap your video at the end. I've done heaven knows how many presentations over the years and found a clearly defined summary prompts better questions and helps retention of the information you’re providing. I often worked backwards, so I would build the summary of my presentation and then create the more in depth info around the points I was trying to make. It also helps to minimise repetition as you know what info will be covered and when. If you know the journey and destination, it’s easier to point out the views along the way. You have a lovely relaxed and welcoming presentation style, the comments you get prove that. I hope the above may be of some help. x
Your looking amazing I have always been interested in spinal chord injuries reading up on the internet found that most spinal injuries are incomplete I love your channel I hope some day they will find a cure for spinal cord injuries
@@Wheelsnoheels for me, the bladder spasms are like cramps but never ending. It's like tightening for what feels like 10 minutes than releasing. They hurt so bad though.
also thank you for explaining that some wheelchair users can walk if have that problem all the time like i use a wheelchair and when i get up and have a stretch or something people look at me like its a miracale or im a fraud
I get such bad cramps and spasms in the legs that I now have a baclofen pump in my stomach that goes into my spinal cord to stop those luckily I can walk around my house but when I go out and about I have to be in a wheelchair
Hi My Name is Caitlyn and I’m a T2 and I was really close to losing my ability to use my arms at the age of 6. I have no feeling in my legs but i have pain that is really bad. I have revered pain where if something hurts somewhere else in my body I have headaches. I’ve had many pressure sours and been hospitalized for them. I’ve had Depression and anxiety. If you want to know more then please ask and thanks for making this video. Bye
I’m T9 incomplete, but walking is so good as over, standing I can for about 30/40 seconds, but I life just on my best in the wheelchair, I fall a lot if I stand or walking between the walls and tables (that’s only for kopple of meters)… I feel my blader only when he is to full (pain and loose pee) but I go pee once a hour I can only pee standing so I had maximum 40 seconds to pee, the other I can’t feel, but always same time in the morning routine and so I can not pee sitting is always directly in the shower next to the toilet.. Lots of nerve pain and chronic pain, chronic is every day a nr 8 sometimes I can’t life that day because the pain, with pain killers and sleeping medicine on bed hope for better day after.. but nerve pain is the most hell, and most is the pain on the same time, it drives us/me crazy.. little bit my story, sounds like hel, sometimes is hel, I sit for 3/4 year in wheelchair, but since I have my chair I can be happy again and mobile again, so important…
I would check your tires are pumped up fully first, then Maybe have a look at different breaks, and different tires? Are they old? Always seek professional advice fist though, this is just a suggestion. :)
Sophia Humphrey The Tiny Kitten Human You might need different wheels with more pattern on them, that and have a professional check your wheelchair brakes whenever you feel they’re not doing enough even when your tires are at the recommended air pressure (air pressure is another thing to check whenever something isn’t working right) Wheels wise on a manual chair, all I can do is recommending Schwalbe Marathon Plus, brilliant tires that works well both indoor and outdoor, they feel very secure as they have a good anti-puncture protection, and they have a pattern to give good traction outdoors but at the same time they’re not like a mountain bike tire that has so much traction that it makes it “too much” instead on most surfaces. Schwalbe Marathon Plus is a really good all round tyre, I’ve been using that kind since autumn 2014 and am currently only on my second pair, I had my first pair for 4 years and even had the same inner tubing all the time, never had a flat on them! (On Schwalbe Right Run on the other hand, I had a flat in less than 1,5 years and the patch wouldn’t hold so had a flat twice more before I could have the inner tube changed...)
I am really dissappointed with this video, I am a Th12 complete. And would I have wished that people know about is about sexuality and incontinence.The muscle loss and pain is on the side as is the rest. You could have titled your video with "what we wish you knew about inkomplete paralysis" or "what I wish you would know about my injury". I wish you would make videos specifically for others with spinal cord injuries. There is not much infornation out there, only if you you know older ones with more experience.
You're fortunate, t10 is so far down + you are incomplete. I am T2 complete. The worst part of an SCI is the lack of feeling but you have some sensation. Complete vs Incomplete are should not be spoken able like they are similar. It's like blurry vision vs blindness. Other than that, good attempt.
Rude! Your attitude screams of "Mines worse therefore you're suffering/feelings are irrelevant compared to mine". Different people would say different things are worse thing about having SCI.
Mojo IRN No she wasn’t being rude at all. T2 is very significant because you’re at risk of autonomic disreflexia which is life threatening. You are far more incapacitated with a higher complete lesion, Gem exaggerates her sci because she can walk with crutches and rarely talks about it yet consistently calls herself a paraplegic when she’s incomplete with a much lower injury. I’m less able than Gem with my level of injury but nowhere near Angel who has a much higher complete injury. Her comment was indeed reasonable. How about you are you sci? If so you’d understand that a couple of inches make a massive difference to the final outcome.
Heres what you dont know. Quads at least, can be very manipulative and nasty to the people who care for them. I see so many sites to help these people but what do you do when your the only caregiver for ten years. She has no friends and a nonexistent family.(even though they live 5 min away.) She cheats on me and is all around just awful to deal with. There are no sites for people dealing with what I am. I feel alone.
Hi there. There is a brand new forum that has opened up called "reeve connect" though the Christopher reeve foundation. www.christopherreeve.org/your-community There is so much support on there, Im sure someone there can offer you advice.
I know what you mean. I think it may be because they feel powerless and so become very controlling. Caregivers have been given no support till recently. At one time they did not even get a meagre govt payment for their efforts. I've encountered a quad like that - very manipulative and vindictive and thought because he had a disability, the world owed him everything for nothing. Bit much as I had a multi-system but invisible disability myself. Three meetings with him were enough, and it was in a business context. Don't know what he was like before accident though. Other SI patients in his ward at the hospital also didn't like him much and thought he was greedy and exploitative too. They give people with a disability a bad name.
@@JulieSondheim This guy wasn't bossy, he was nasty and vindictive when I wouldn't hand my business to him, all the while I'm the one paying the rent and bills, and for nothing in return except his inflated ego. He was just plain narcissistic and evil.
Gem I’m suffering with muscle spasms it originally started in my right buttock but it has moved down to my right thigh, I did see my MS physio twice but she said she was unable to do anymore with my spasms and has discharged me! I’m also seeing a hospital physio because I’m having to push myself so much more nowadays I have damaged the tendon and ligament in my left elbow I have arm exercises which have to be done 3x a day, but it isn’t getting any better ☹️👨🏻🦽
A big thank you to Alyssa and Binah for letting me feature their Instagram photos, If you would like to see more of them please follow:
Alyssa: @wheelielifeinthewheelieworld
Binah: @wheeliekool
And don’t for get me ;) @wheelsnoheels_
I hope this has cleared a few things up for you and you have maybe learned something new? I have tried to get everything as correct as possible, however I’m not a medical professional, and please use this a guid only.
As part of my community I have turned on “community contributions.” I would be thrilled if you would like to add close captions, translations, and subtitles. Im all about accessibility for everybody. I working so hard on my channel to give you the best content I can make. Lets work together to reach more people to inspire, motivate and feel less alone.
Boa tarde querida
I'm an incomplete quad. I have incomplete cervical damage. Mine has been progressive. Thanks for this video! I'm so tired of people thinking I'm getting better because I can move my arms and legs. Its awful because I'm actually getting worse so it sucks to hear.
Great video! The only thing that I would add is that not all people in wheelchairs have spinal cord injuries.
I use a wheelchair full time as I’m not weight bearing, but my condition affects the tendons and ligaments instead. Many people just assume that I have a SCI, or that I was affected by some trauma, when it is just my genetics instead!
Yes a good point. I also have a video on this. "why use a wheelchair if your not paralysed." to raise awareness. Thank you for watching. Im glad you enjoyed it. xx
I have EDS and sometimes we are more likely to get injured than the average person. I was rearended and now I'm an incomplete quad. Sadly my injury wasn't caught because I'm so lax everything looked normal on the xray. My ortho said my injury could've been worse but went back into place for the xray. It wasn't until I had an MRI that showed the damage to my spinal cord. So always demand an MRI if you're in an accident. Xray doesn't show the whole story.
Sadly demanding doesn't mean you'll get one, you need to be treated by someone aware of EDS complications.
Then you contact patient advocacy at the hospital you're at. You can also ask the ER doctor to contact a specialist that can explain the need. There are definitely more steps but if you understand your disease enough and explain everything the doctors will often listen.
Kerry Sheehan my ‘impairment’ is EDS too. I was in hospital (abdominal tumour) and every time I got out of bed I’d do 3 or 4 steps and I’d fall over. The staff told me off like a naughty child for ‘attention seeking, falling over on purpose’ and I wasn’t allowed out of bed, which made getting out of bed worse. Six years on I found out about POTS being linked to EDS, but the effect of being laid in bed for five months took away the ability for the tendons and ligaments to hold my leg, it just bends in all directions and doesn’t hold me up at all, so now I have to use a wheelchair for the rest of my life. I can’t help thinking that if I had been allowed out of bed to walk when I begged to, I’d still be fully mobile for the rest of my life instead.
Thank you, Gem for doing these videos. I am 76 and have cervical myelopathy, C4/C5/C6. My condition has deteriorated so much that I have had to give up driving. I recently bought a motorised wheelchair because it is so difficult to use a manual one. It is great that you making the general public aware of our disability. Bless you.😎
So the assumption that I get a lot that everyone who uses a wheelchair can’t move their legs isn’t even always true of people with SCIs! lol I wonder if people with SCIs also then get accused of faking their need for a wheelchair?
I’m not sure I knew that an SCI can also cause difficulties with the autonomic nervous system! I have POTS/dysautonomia but independent of a SCI, more tied to ME/CFS.
Ive never been accused of faking. Just people joking around. I can't speak for other people with SCI though. x
I don’t think I have ever been accused of not needing my wheelchair, not to my face anyway, other than the lovely looks I sometimes get when I park in Disabled parking.....and some of them are “brave” enough to knock on my window. Like, what? Don’t put your yucky hands on my van. I’m not trying to get the flu.
My family sadly believes I'm faking. I didn't get a normal SCI. Sadly, my accident happened years ago and they thought was okay but the damage was slow going. Even my doctors treated me like I was crazy untilI finally got an MRI. Sadly, that didn't change my families opinion. Disability is a lonely thing. Then when you have no family support. Its awful.
Kerry Sheehan can you join up with other disabled people in your area? In my experience that usually helps a lot. Although, be aware that not all disabled folk get along lol, but if you can find some you can connect with, that can certainly make the loneliness less.
Kerry Sheehan I’m so sorry. That’s awful. 😢
Hi Gem, I'm so greatful for your videos as they are a great help to me. I'm learning to cope with my spinal stenosis and scoliosis and agree with the mental health problems. Keep doing the great work as you are very helpful to loads of people.
I was born with Spina Bifida and am a paraplegic. I think for my people (people with my form of Spina Bifida) it’s more like the spinal chord/spinal column stopped developing at some point, as apposed to some outside force damaging it. I think my level is L4,L5 I can bounce both knees up and down like nobody’s business lol, esp on the left side. Also if I sit on something like a bench, I can swing both legs a little, esp on the left side. This in no way means that I can bare weight on my legs or stand up and walk around. There’s’ a huge jump between that and what my legs will do. I would need whatever parts I’m missing from my spine/spinal column for all that to happen 😀.
I have SB as well @ my L4 L5 I can get my right leg to move and I can feel it a little but my left leg forget about it. I did some research a while ago because I was curious and read that Spina Bifida is a Congenital Spinal Cord Injury so yes the more serve SB is definitely a SCI just that it occurred whilst we developed in the womb
More brilliance from Gem...superb work as always. Love all your vids and wish your family the best. ♥
Great video Gem! Thanks so much for sharing this info so people can understand a little bit of what we go through. It really is such a wide variety of injuries, symptoms and people! You did a great job of explaining that.
Hey Katie. Thank you so much. I was so worried about this one as I really wanted to do it justice. So thank you. Please feel free to share it on your socials. :)
My boyfriend has a T6 incomplete injury. He was a victim of violence and was a healthy soldier. Generally he's positive but if he gets a sore and is laid up for months he can get so down and hates how fragile he is. I'm trying to do my best to learn as much as possible so I can be a better gf for him. Thankyou for making thos video xxx
I am a registered nurse caring for my mom with a C3-4 incomplete SC injury. She is 25 months past her injury. This is a great video...I have never thought about using a banana to demonstrate a SCI...very creative. Thank you for sharing.
Great video - you kept it nice and clear and simple, which isn't an easy task! You can't please everyone, but this will, I hope, raise some awareness about the diversity of a sci. Well done Gem xxx
Thank you for your kind words. xx
Jeebus, I had no idea that SCI were so individualized! Thank you for the education
Gem thank you, for another informative video. Just as a suggestion; when you have several items to cover, it may help you to have cumulative bullet points appear on screen. They could either be as an overlay or simply separate cutaway screens that appear as you are talking; much like your spinal level chart which made that section easier to grasp. The other thing about creating bullet points is it naturally generates a script outline for you. Please don’t take this as a criticism; I always enjoy your videos and I look forward to your next instalment.
Oh thank you. I don't mind at all, I always want to improve and make the videos as good as possible for everyone. If you have a sec, check out "how to instagram in a wheelchair" In there I have cutaways that I think you are referring to? Let me know if thats what you mean? xx
Hello Gem just watched the Instagram video and yes similar to that. In more instructional type videos, my thought was cumulative bullet points, so at the end the viewer has a single page summary of what you’ve been talking about, allowing you to quickly recap your video at the end. I've done heaven knows how many presentations over the years and found a clearly defined summary prompts better questions and helps retention of the information you’re providing. I often worked backwards, so I would build the summary of my presentation and then create the more in depth info around the points I was trying to make. It also helps to minimise repetition as you know what info will be covered and when. If you know the journey and destination, it’s easier to point out the views along the way. You have a lovely relaxed and welcoming presentation style, the comments you get prove that. I hope the above may be of some help. x
Thank you Gem. Informative and empathetic as always.
Chronic pain chronic illness warrior life !stronger together gem!
Well done Gem. You kept it basic but covered lots of different areas, great video.
Your looking amazing I have always been interested in spinal chord injuries reading up on the internet found that most spinal injuries are incomplete I love your channel I hope some day they will find a cure for spinal cord injuries
Thank You Liam. I actually for got to point out that there is no cure yet. But Im sure one day there will be. xx
I totally get bladder spasms (not fun), and some mental issues. But I was born the way I am. I can totally relate to EVERYTHING you said! Thank you!!
Thanks for sharing. What do bladder spasms feel like? (email me if your more comfortable) But i think I get them too. But not sure. xx
@@Wheelsnoheels for me, the bladder spasms are like cramps but never ending. It's like tightening for what feels like 10 minutes than releasing. They hurt so bad though.
thank you for making this video it explains so much
Thank you for watching. Im glad it helped. x
also thank you for explaining that some wheelchair users can walk
if have that problem all the time like i use a wheelchair and when i get up and have a stretch or something people look at me like its a miracale or im a fraud
I get such bad cramps and spasms in the legs that I now have a baclofen pump in my stomach that goes into my spinal cord to stop those luckily I can walk around my house but when I go out and about I have to be in a wheelchair
Oh thats interesting. I was wondering if it was just me who gets cramps. Oh they are a pain. :(
Hi My Name is Caitlyn and I’m a T2 and I was really close to losing my ability to use my arms at the age of 6. I have no feeling in my legs but i have pain that is really bad. I have revered pain where if something hurts somewhere else in my body I have headaches. I’ve had many pressure sours and been hospitalized for them. I’ve had Depression and anxiety. If you want to know more then please ask and thanks for making this video. Bye
Hello Gem. I always watch your video's
Helpful video. Thank you.
Really really useful video. Thanks so much, Gem x
I enjoy your videos. Thank you
I’m T9 incomplete, but walking is so good as over, standing I can for about 30/40 seconds, but I life just on my best in the wheelchair, I fall a lot if I stand or walking between the walls and tables (that’s only for kopple of meters)… I feel my blader only when he is to full (pain and loose pee) but I go pee once a hour I can only pee standing so I had maximum 40 seconds to pee, the other I can’t feel, but always same time in the morning routine and so I can not pee sitting is always directly in the shower next to the toilet.. Lots of nerve pain and chronic pain, chronic is every day a nr 8 sometimes I can’t life that day because the pain, with pain killers and sleeping medicine on bed hope for better day after.. but nerve pain is the most hell, and most is the pain on the same time, it drives us/me crazy.. little bit my story, sounds like hel, sometimes is hel, I sit for 3/4 year in wheelchair, but since I have my chair I can be happy again and mobile again, so important…
My levels are c2 to c7 and yes T10 & 12 and C4-6. Incomplete where some where bruised and other areas it was not totally torn (complete).
Don’t know any child with cancer personally but September is also Child Cancer awareness month is the USA
Thank you lovely. xx
Any advice on how to keep a wheelchair from sliding down a hill? I don’t seem to have enough traction in my wheels.
I would check your tires are pumped up fully first, then Maybe have a look at different breaks, and different tires? Are they old? Always seek professional advice fist though, this is just a suggestion. :)
I advise seeing a wheelchair specialist, my powerchair slides as the tyres that come with it are bloody useless lol
Sophia Humphrey The Tiny Kitten Human You might need different wheels with more pattern on them, that and have a professional check your wheelchair brakes whenever you feel they’re not doing enough even when your tires are at the recommended air pressure (air pressure is another thing to check whenever something isn’t working right)
Wheels wise on a manual chair, all I can do is recommending Schwalbe Marathon Plus, brilliant tires that works well both indoor and outdoor, they feel very secure as they have a good anti-puncture protection, and they have a pattern to give good traction outdoors but at the same time they’re not like a mountain bike tire that has so much traction that it makes it “too much” instead on most surfaces. Schwalbe Marathon Plus is a really good all round tyre, I’ve been using that kind since autumn 2014 and am currently only on my second pair, I had my first pair for 4 years and even had the same inner tubing all the time, never had a flat on them! (On Schwalbe Right Run on the other hand, I had a flat in less than 1,5 years and the patch wouldn’t hold so had a flat twice more before I could have the inner tube changed...)
Good one
Suicide awareness on 10th September
I am really dissappointed with this video, I am a Th12 complete. And would I have wished that people know about is about sexuality and incontinence.The muscle loss and pain is on the side as is the rest. You could have titled your video with "what we wish you knew about inkomplete paralysis" or "what I wish you would know about my injury".
I wish you would make videos specifically for others with spinal cord injuries. There is not much infornation out there, only if you you know older ones with more experience.
thor-ra-sick and say-crum
nice video my sci leval d8&l1 🇮🇳
Boa tarde querida
You're fortunate, t10 is so far down + you are incomplete. I am T2 complete. The worst part of an SCI is the lack of feeling but you have some sensation. Complete vs Incomplete are should not be spoken able like they are similar. It's like blurry vision vs blindness. Other than that, good attempt.
This is unnecessarily rude. Gemma of course can only speak to her experience.
Rude! Your attitude screams of "Mines worse therefore you're suffering/feelings are irrelevant compared to mine". Different people would say different things are worse thing about having SCI.
I'm quadriplegic.
Mojo IRN No she wasn’t being rude at all. T2 is very significant because you’re at risk of autonomic disreflexia which is life threatening. You are far more incapacitated with a higher complete lesion,
Gem exaggerates her sci because she can walk with crutches and rarely talks about it yet consistently calls herself a paraplegic when she’s incomplete with a much lower injury.
I’m less able than Gem with my level of injury but nowhere near Angel who has a much higher complete injury.
Her comment was indeed reasonable.
How about you are you sci? If so you’d understand that a couple of inches make a massive difference to the final outcome.
@@HighTen_Melanie don't agree
Gem hi u good im good u need help im liek for u help u im married for u need help tell for u dubai vr
Olá querida bjs
She’s married.
Heres what you dont know. Quads at least, can be very manipulative and nasty to the people who care for them. I see so many sites to help these people but what do you do when your the only caregiver for ten years. She has no friends and a nonexistent family.(even though they live 5 min away.) She cheats on me and is all around just awful to deal with. There are no sites for people dealing with what I am. I feel alone.
Hi there. There is a brand new forum that has opened up called "reeve connect" though the Christopher reeve foundation. www.christopherreeve.org/your-community There is so much support on there, Im sure someone there can offer you advice.
I know what you mean. I think it may be because they feel powerless and so become very controlling. Caregivers have been given no support till recently. At one time they did not even get a meagre govt payment for their efforts. I've encountered a quad like that - very manipulative and vindictive and thought because he had a disability, the world owed him everything for nothing. Bit much as I had a multi-system but invisible disability myself. Three meetings with him were enough, and it was in a business context. Don't know what he was like before accident though. Other SI patients in his ward at the hospital also didn't like him much and thought he was greedy and exploitative too. They give people with a disability a bad name.
@@JulieSondheim This guy wasn't bossy, he was nasty and vindictive when I wouldn't hand my business to him, all the while I'm the one paying the rent and bills, and for nothing in return except his inflated ego. He was just plain narcissistic and evil.
Gem I’m suffering with muscle spasms it originally started in my right buttock but it has moved down to my right thigh, I did see my MS physio twice but she said she was unable to do anymore with my spasms and has discharged me! I’m also seeing a hospital physio because I’m having to push myself so much more nowadays I have damaged the tendon and ligament in my left elbow I have arm exercises which have to be done 3x a day, but it isn’t getting any better ☹️👨🏻🦽