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Thread: News article on one of our members...

  1. #1

    News article on one of our members...

    http://www.nbcnews.com/video/paraple...t-570732099517

    Way to get back up in the air Joe!

  2. #2
    Senior Member lynnifer's Avatar
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    That's pretty damn impressive! Kudos! (How do people afford the time and equipment though?)

    That's how I felt in my job at 911 - even playing field.

    Who is the screen name? Quite impressive!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    Joesstone

  4. #4
    Wow Good for him... I have a friend that's a paraplegic similar to him not many limitations, none that he sees or really cares about. I feel that all paraplegic should go as hard as they can, once they get over the initial impact they really are not to far off function wise from able bodied people.

  5. #5
    James,
    Joe is a c-7 quad.

  6. #6
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by JamesMcM View Post
    Wow Good for him... I have a friend that's a paraplegic similar to him not many limitations, none that he sees or really cares about. I feel that all paraplegic should go as hard as they can, once they get over the initial impact they really are not to far off function wise from able bodied people.
    As someone who has been paralyzed for 30yrs James ... what you say is true ... for the first 15yrs easy. When you start to approach 20yrs, you notice getting fatigued a lot more ... at 30yrs it's a struggle. Shoulders are giving out, fatigue levels are high. The risk of pressure sores are greater the longer that you're paralyzed. Metabolic disorders etc. Suicide is high among paraplegics - because they can - and it's hard to deal with going through 'disability' a second time. Since we are so independent and if you don't have a spouse, it can be very lonely because everyone expects you to be as independent as you've always been. I purchased a power chair in Sept 2013 and started using it sparingly Jan 2014. Now I'm in a spot where pushing the manual chair long distances does not appeal to me .. but I still have a car (that I used to transfer to but can't lift this power chair now). It's freaking expensive to have to go through 'disability' a second time in changing equipment etc. I wasn't expecting to buy a car for a while so I'll probably be looking at a used van with a lift - they can still be expensive.

    Bowel and bladder management will change in 20-25yrs ... just read around here. Old ways stop working. Aging with disability is really tough. Even tougher on your own.

    Now I'm not discounting your situation and I can't even begin to imagine how tough it is ... I've known sip and puff chair users since I was 12 in rehab so I know to appreciate what I have (there was also a woman who could only blink yes or no - 12 was young to be exposed to so much human suffering) ... but the grass is not always greener. You always have someone around (I realize you probably hate this, but sometimes I think I would like it now that I'm struggling). This is pretty significant. My friend who happens to be quadriplegic usually has caregivers who she becomes friends with (they used to grocery shop but now she just takes them with her to concerts or other fun things) ... a caretaker for cleaning every week and registered nurses to get her out of bed in the mornings because of her bowel routine.

    I'm pressure sore bound with multiple spots at the moment and stuck with an RPN every other day ... I don't qualify for help (cleaning, grocery shopping) because I can bathe and dress myself. Thing is - anymore - it takes quite a bit longer - even moreso now that I haven't been working for two years.

    I really and truly believe we're going to see changes for higher injuries soon. Only we can push for that .. but just know the grass isn't always greener. We're all effing paralyzed and it sucks for all of us.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7
    Senior Member flying's Avatar
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    I went flying again in a two axes plane after my light plane crash. But its a very expensive hobby, an my income as well as my body, took a big hit. So took up cheaper hobbies like hand cycling. 23 years of flying is enough, time to move on.

    Lynnifer I'm only five years out but 60 years old, and am starting to feel some of what you were talking about. The chronic pain by far and away, takes the biggest toll so far, and is very disabling by its self.

    I'm happy this guy can find the resources to keep flying. Just hope he keeps it wheels down.
    T12L1 Incomplete Still here This is the place to be 58 years old

  8. #8
    Quote Originally Posted by TheRainman View Post
    James,
    Joe is a c-7 quad.
    Ya, so a paraplegic, I know technically that's not how it works T1 blah blah. But Numerous first-hand experience a C6, C7, C8 compared to a even complete C5 or C4 and up The level of function is life-changingly different drastically. A C7 complete is very much a paraplegic with pretty good hand function, they're not going to be performing surgery with tremendous dexterity but all the necessity is there. Now a C7 incomplete The level of function is astronomical in comparison. Judging by the video I'm willing to bet that he can feel even slightly around his anus gross but that is the only real way to know the difference, and even then it's not really 100% accurate.

    Curious though why is this even brought up, it says paraplegic in the video. I'm happy for him, he should feel the way he feels, some people are blessed with that much function but still feel they have major limitations if you look at it very very realistically yes there are a few well let's be 100% honest I'm not here to pretend to motivate people there are a substantial amount of things that can't be done without your legs that's just the way it is. But these are things he needs not concern themselves about as I said about the friend I have... Looks like this good man doesn't mind at all
    Last edited by JamesMcM; 11-21-2015 at 09:25 PM.

  9. #9
    Quote Originally Posted by lynnifer View Post
    As someone who has been paralyzed for 30yrs James ... what you say is true ... for the first 15yrs easy. When you start to approach 20yrs, you notice getting fatigued a lot more ... at 30yrs it's a struggle. Shoulders are giving out, fatigue levels are high. The risk of pressure sores are greater the longer that you're paralyzed. Metabolic disorders etc. Suicide is high among paraplegics - because they can - and it's hard to deal with going through 'disability' a second time. Since we are so independent and if you don't have a spouse, it can be very lonely because everyone expects you to be as independent as you've always been. I purchased a power chair in Sept 2013 and started using it sparingly Jan 2014. Now I'm in a spot where pushing the manual chair long distances does not appeal to me .. but I still have a car (that I used to transfer to but can't lift this power chair now). It's freaking expensive to have to go through 'disability' a second time in changing equipment etc. I wasn't expecting to buy a car for a while so I'll probably be looking at a used van with a lift - they can still be expensive.

    Bowel and bladder management will change in 20-25yrs ... just read around here. Old ways stop working. Aging with disability is really tough. Even tougher on your own.

    Now I'm not discounting your situation and I can't even begin to imagine how tough it is ... I've known sip and puff chair users since I was 12 in rehab so I know to appreciate what I have (there was also a woman who could only blink yes or no - 12 was young to be exposed to so much human suffering) ... but the grass is not always greener. You always have someone around (I realize you probably hate this, but sometimes I think I would like it now that I'm struggling). This is pretty significant. My friend who happens to be quadriplegic usually has caregivers who she becomes friends with (they used to grocery shop but now she just takes them with her to concerts or other fun things) ... a caretaker for cleaning every week and registered nurses to get her out of bed in the mornings because of her bowel routine.

    I'm pressure sore bound with multiple spots at the moment and stuck with an RPN every other day ... I don't qualify for help (cleaning, grocery shopping) because I can bathe and dress myself. Thing is - anymore - it takes quite a bit longer - even moreso now that I haven't been working for two years.

    I really and truly believe we're going to see changes for higher injuries soon. Only we can push for that .. but just know the grass isn't always greener. We're all effing paralyzed and it sucks for all of us.
    I hear what you're saying, I understand that and as a paraplegic your shoulders probably are going to go to shit. I can move my right shoulder but it has not many muscles to stabilize it so after even three years it grinds and snap, and it's probably very damaged already and keeps me up every night I only put weight on it In physiotherapy, I can't even use it for my iPad. Lynifer , you don't understand the disgrace of being completely dependent, you don't know what it's like to be thirsty at four in the morning with a water bottle maybe 3 feet away from you and not a chance in hell of obtaining it. You don't know what it's like to shit yourself at a friends party when you're planning on spending the night, no caregivers to call why because you wanted to try and be a human, and leave without a nurse or a parent and just hang out with your friends didn't work out well. And you don't know what it's like to fall right or left in your chair with your seatbelt on but hanging there like a fish out of water wrecking your lower spine four hours not the slightest bit of hope of changing your unfortunate circumstance, only to beg complete strangers when they do finally come within hearing distance. There is a great emptiness to waiting on someone to get you up every morning, take you out nothing is your own anymore. I think you're undermining the fact that you got to enjoy those youthful years as a paraplegic, I'm sorry for how much your shoulders have suffered, but the situation is uncomparable by that fact alone, unless something changes God willing I'm not going to get that respect from people to expect me to be able to do things, I will always be looked at as a broken helpless little cripple no matter how much I try to do for myself my minuscule accomplishments like sliding the iPad onto my lap, sipping my own water etc. are meaningless in scheme of things. I'm not going to get that freedom ever, old-age will take a much greater affect on a quadriplegic as it will paraplegic don't make the assumption that because you move around a lot more wearing on your body, that old age will somehow skipped over a motionless quadriplegic the human body not meant to sit, the joints are not meant to move with only a slight percentage of stabilizing muscles. Body disintegrates far more drastically when completely motionless. Heart problems, osteoporosis, infections etc. all of it affects quadriplegics more. also even the most caring caregiver out there loving the person she cares for etc. nobody will care quite as good for yourself, as yourself. The only person that's going to be happy about waking up at 3 AM to get me a water bottle, is me the only person that's going to take the extra effort to shower me again even after bowel care and scheduled shower time on a frequent basis without making a fuss over it is me. The examples of this are almost unlimited, and probably very very hard for someone that can do almost everything for themselves to realize.c sometimes caregivers just want to break, sometimes caregivers just don't feel like doing above what they have to, sometimes caregivers have things they need to do for themselves that will take obvious priority, And you're essential caregiving will get done but well hopefully, but potentially not efficiently why, because he/she has something important that needs to be done for themselves they are human, that's the way humans work. Finally the amount of things a para can do in life is ungodly different than a high complete quadriplegia, it's not even on the same chart. Something that comes to mind is missionary position haha seriously the grass is substantially greener. Old-age hits us all disabled able-bodied there's not even an argument, none. The thought that Bridget thinks there is is is sickening frankly, completely disgusting I'm sorry you are blessed with hand function you faced a God awful tragedy that is paralysis but it could be so much worse. Just like if I was a C1 that would be substantially worse than the situation I'm in and I realize that I would never argue with that, but the difference between me being the c1 verse a C7 and down being a C-5 is quite a different scenario again not even on the same chart.

    A lot of paraplegics fail to realize they know what it is to be paralyzed but they don't know what it is to be nearly completely dependent for life, where as a quadriplegic knows what it is to be paralyzed and they also know what it is to be completely dependent. Trying to understand what being completely dependent for life when you are basically completely independent, or even slightly independent can't be done I've had this talk face-to-face with para there is just so much the Emotions, emptiness, little situations, physical and mental pain that you can't possibly comprehend. Now for a fully dependent quadriplegic to imagine what it is like to transfer himself, bath himself, do his own program, use a manual chair efficiently that's very realistic we try to do these things well most of us do even though for the unfortunate few of us to be badly enough injured its impossible. We are very aware of joint deterioration, and how it's going to affect the things we can do even if they are very small tasks and comparison. I'm sorry basically hijack this thread, but that kind of crap I cannot listen to. One thing that has come from my injury, is I've tried to teach everyone around me, especially able-bodied people appreciation because I remember the ignorance I had when I was able bodied. To turn on the shower fell warm water caress your body, to move your fingers, to reach and pick up anything f you want to use or desire, to reach and touch , feel the different textures all around this world trees, rocks, Sand the warmth of a partner in your hand, to use these glorious tools we call hands to interact with the world around us these are gifts beyond compare could go on anon and it's impossible to realize when you have them what it's like when you don't.

    Not too long ago I was put in contact with a C2 injury, nothing seems to be new seen these kind of injuries to be honest I don't have much more independence (I couldn't imagine not being able to move my neck tho no real functional purpose just for anxiety reasons) but this lad was different he suffered a brain injury he can't even go in the light, he can't talk this was the moment when I got a harsh brick to swallow of my own advice and really look at the small things that I do have that are actually extremely substantial. Didn't for one second feel like a hypocrite, or make me feel like my advice was wrong in fact made me fully realize how right and true it really is...

    ps for anyone that has read my post before, this poor lad that I continue to talk to has allowed me to appreciate few things I do have, but in no way has it changed my strong often harsh perspective on dependency, nothing ever well... Because I feel deep down that it is wrong, it's far more than just opinion to me.

  10. #10
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    I am thrilled for him but we quad c6c7 that are older 50 when I joined this family and single its tough now 65 getting tougher but I am so happy to see thse youngster get on with life

    but I am like you all how do you afford it

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