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Thread: 13 years

  1. #21
    Senior Member lynnifer's Avatar
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    I guess I was younger so I have a different perspective going paralyzed at 12 (released from hospital on my 13th birthday) ... but other than numb, I didn't feel anything probably for the first 15yrs! I was too busy going into secondary school, then the search for college and moving out on my own instead to look for work. Finding myself at the same time as getting used to this paralyzed from the waist down body. Setting up my world on my own, meeting new people through work and being young and at night school, etc.

    Hitting 20yrs was hard because that seemed a lot of years. So I acquired a cat and named him Twoxten to make it better (two x's ten = 20). Still working, long term relationship by then.

    25 and I noticed my body was giving me trouble and frankly, it's been downhill healthwise and am now in my 30th year. Still working and relationship became an anchor instead of being enjoyable.

    I'm not as disabled and able to be independent (really didn't have a choice anyway having left home at 18 and not close/supportive with anyone plus I was lucky to be para) ... but I can't imagine being so mournful at 13yrs in and for years leading up to it. Everyone has different coping skills I know ... it must be awful to be an adult and have your life set, especially if you consider yourself a traditional male head of the household ... but on the other hand, you've experienced a lot of things I never will in a normal functioning body - as everyone should experience them.

    Work helped immensely. Other interests.

    I hate to see you like this Tim. Waiting. Waiting for something that might come in 2yrs or not for another 25. Just wondering if you 'advance the movement' in any way?

    Do you have any interests outside of the wheelchair life? What did you do for work before? Wish I could make it better for you, but only you can do that. I have shit days too.
    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

  2. #22
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    The animal as lynnifer is simply amazing. I continually tell my mother and uncle I have lost my mind. The anima though, I have a small puppy name hairball, has done wonders. He loves to play. Loves to just sit on my lap. Loves to lay aside my face when in bed. Probably licks my face ach night until his tongue gets tired. All I know is, he is just TRYING and he does a hell of a job at it. I got no idea how he is able to differentiate me in a wheelchair from someone walking, but somehow he does. I give him tons of credit for what he has done for me.

  3. #23
    Over the long haul some of us gravitate to a peaceful coexistence with the SCI. We are not consumed by the consequences of the injury but know that its problems are always lurking. We are pressed into a constant "on guard" state. We would certainly prefer to not have the injury, and we milk out of life as much as we can. We are constantly on the look out for things that will lessen the burden. Our hope is for tools like better wheelchairs or an electronic bowel stimulator that will give better control. The wish for a cure shifts from being directed toward one's self to relief for newbies. And we plod on. Eventually the bundle of electrons that have come together so arranged to give us a sense of being splinter off and serve another purpose in the cosmos.
    Last edited by SCIfor55+yrs.; 02-23-2015 at 05:53 PM.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  4. #24
    Senior Member goldnucs's Avatar
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    Hey 55; you're a poet!!! Tears are welling up in my eyes

    rick
    Rick Goldstein
    GO! Mobility Solutions
    facebook.com/goes.anywhere

  5. #25
    Quote Originally Posted by SCIfor55yrs. View Post
    Over the long haul some of us gravitate to a peaceful coexistence with the SCI. We are not consumed by the consequences of the injury but know that its problems are always lurking. We are pressed into a constant "on guard" state. We would certainly prefer to not have the injury, and we milk out of life as much as we can. We are constantly on the look out for things that will lessen the burden. Our hope is for tools like better wheelchairs or an electronic bowel stimulator that will give better control. The wish for a cure shifts from being directed toward one's self to relief for newbies. And we plod on. Eventually the bundle of electrons that have come together so arranged to give us a sense of being splinter off and serve another purpose in the cosmos.

    Well said, I don't agree with that I don't see that for myself ever, and I know many new or old injuries feel a similar way. but I understand what you're saying. Curious though, the hope for the cure shifts to better wheelchairs or stimulators etc. Is that because the hard fact is your body has basically disintegrated from being bound to a chair among other things for so long, making a cure basically pointless? (Osteoporosis, bladder shrinkage, muscle atrophy, axon, cell death, secondary damage to the cord like cysts etc, contractors, joint damage, infections, colonization.?) Or is it that you have become accustomed to the chair, reached a comfort zone basically content?

    I absolutely despise wheelchairs, and do not support them as a medical solution or their research and or funding. But for you have you ever seen The Galileo chair?
    Last edited by JamesMcM; 02-23-2015 at 10:19 PM.

  6. #26
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    I try very often to not be consumed by whatever "crutch" I may be using to get by whatever it may be doing for me. Personally, even with stuck with the crutch, I continually hope I do not get mentally stuck with it as well. I think if mentally stuck, then tht is another setback that needs to be overcome.

  7. #27
    Well said, I don't agree with that I don't see that for myself ever, and I know many new or old injuries feel a similar way. but I understand what you're saying. Curious though, the hope for the cure shifts to better wheelchairs or stimulators etc. Is that because the hard fact is your body has basically disintegrated from being bound to a chair among other things for so long, making a cure basically pointless? (Osteoporosis, bladder shrinkage, muscle atrophy, axon, cell death, secondary damage to the cord like cysts etc, contractors, joint damage, infections, colonization.?) Or is it that you have become accustomed to the chair, reached a comfort zone basically content?

    For me a total healing of my spinal cord would likely plunge me into a sea of pain. Functionally I would have little to gain. I have no bladder, my muscles have deteriorated to a point of no return, etc. I would only risk the pain if the "fix" was to serve some high value scientific purpose. Recognizing that reality has caused me to reassess what will benefit me personally and serve the greater good when possible. For example I recognize that there is a broad spectrum of people with mobility limitations who depend on wheelchairs. The need for wheelchairs and other things SCIs need to raise the level of functioning are much more important taking the rest of the disability world into consideration. You may hate wheelchairs. But I dare say you would hate them even more if you had been placed in my first wheelchair:
    Name:  wheelchairsrev.jpg
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    I absolutely despise wheelchairs, and do not support them as a medical solution or their research and or funding. But for you have you ever seen The Galileo chair?

    Yes I have seen the chair and the other stair climbing wheelchairs that have been developed over the years. Attempts to market them quickly failed because insurance, etc. would not or could not pick up the cost. I had a chance to test drive the first attempt at providing us such a chair. It did everything the more recent models do. I wish I had had the $50,000 to buy one back in the late 1980s.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  8. #28
    Quote Originally Posted by SCIfor55yrs. View Post
    For example I recognize that there is a broad spectrum of people with mobility limitations who depend on wheelchairs. The need for wheelchairs and other things SCIs need to raise the level of functioning are much more important taking the rest of the disability world into consideration. .
    I couldn't disagree with you more, MS, SCI, anything neurological gets a treatment it will benefit the other some more than others but nonetheless. Reaching full function and full independence and quality of life avoiding disabilities in total is the most important.

    I always find it so disturbing when a disabled person says they hope for a future where everything is accessible, (which is impossible) and the general population is more understanding and accepting of disabilities. Does the disability really sucked that much out of someone that, that is as far as their Hope can aspire!! How about a future with no disabilities, no need for wheelchairs for the young, even the elderly would be kept in better condition. Obviously no matter how "happy" or "inspired" or "miserable" someone is after injury, hearing you will never walk again, and the harsh new interpretation and understanding of impossible, has a far deeper impact then we care to understand.

    Also Back then in the time of that wheelchair I think society in general was a little less cowardly and slightly more honorable (911 and antidepressants among other things weren't constantly used). When a man kindly request to peacefully die the way nature intended, rather then being picked up and cared for the rest of his life, some might have respectfully left a man in peace. So me and that chair likely wouldn't have met.
    Last edited by JamesMcM; 02-24-2015 at 08:12 PM.

  9. #29
    James, I understand your need to play mind games and create your own world. Do what you need to do to cope. I am out in the real world dealing with reality. Some would argue that we will get to experience a time without disability or pain...when we get to Heaven. I do not have anymore confidence in that future coming to be than I do of your fantasy world.

    Your view of the past is also distorted. Try to remember that I am here because of the way people like me were treated in those days. And in part, I am here because of what was learned through the heroic measures taken to keep World War II battlefield injured alive.

    My world has all kinds of disabilities, not only neurological one. And as one disease or problem is solved another pops up. My reality also suggest that the rapid decline in world resources and the rapidly increasing population are going to reshape how those resources are allocated. That will have profound implications for people who become ill or disabled.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  10. #30
    Quote Originally Posted by SCIfor55yrs. View Post
    James, I understand your need to play mind games and create your own world. Do what you need to do to cope. I am out in the real world dealing with reality. Some would argue that we will get to experience a time without disability or pain...when we get to Heaven. I do not have anymore confidence in that future coming to be than I do of your fantasy world.

    Your view of the past is also distorted. Try to remember that I am here because of the way people like me were treated in those days. And in part, I am here because of what was learned through the heroic measures taken to keep World War II battlefield injured alive.

    My world has all kinds of disabilities, not only neurological one. And as one disease or problem is solved another pops up. My reality also suggest that the rapid decline in world resources and the rapidly increasing population are going to reshape how those resources are allocated. That will have profound implications for people who become ill or disabled.

    Haha I am not like you bud, I don't need to cope , I need to attempt and progress. I won't lower myself to "cope" with people cradling me my entire life and calling it independence because I dictated it. I know, I know you're LIKE the motivated disabled man that will change his sp catheter himself with "no" hand function then use the famous line nothing is impossible, if you work at it. But then mention the quest for recovery or a cure and he'd offer a look of dismay and say that desire will pass in time. Yeah you're dealing with reality alright.

    Listen I was speaking with you in context of hope, my hope goes pass just masking a problem my hope is fixing the problem. Yes never will all diseases and disabilities be curable and eradicated, but I still certainly hope they will be, and maybe just maybe with technology and knowledge growing in the future they may, can you really say otherwise? Fact of the matter is I am without a doubt positive that in 20 years A acute spinal cord injury will be fixable, we are seeing the start of that today. and many people will not have to hear the garbage we've been fed and deal with what we have been dealt because there was no other option. So these little SCI support groups, organizations, coping mechanisms etc will be obsolete and eventually nothing but a thing of a primitive past.

    Oh I am very aware of our declining resources, and are dying ecosystem. Remember we had a big long debate on this, funny you seem to have changed perspective abit. I remember you taking the stance The disabled would be just as efficient and just as likely to survive A social collapse, interesting reality you have there haha.
    Last edited by JamesMcM; 02-25-2015 at 11:27 AM.

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