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Thread: Complete High Quad Perspective

  1. #21
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    Quote Originally Posted by Leo View Post
    i'm hanging in there quite well and optimistic, and hope to get into phase 2 of some trial,

    i'm just saying that many are clueless to the crap and life of high levels

    i hope this thread will open some minds

    i have 2 sons and 4 grand kids but in great part my paralysis keeps me from them

    most of my 35 years i've had great health all in all

    today 65 degrees, but power chair broke down, so i sit and wait

    my thought, oh to be a para
    My son is c5/6 complete, he is driving and going to school full time. My hopes,wishes and thoughts are that all of you become able sooner instead of later. But I agree that life as a para would be a huge improvement for high level quads. My son is one level away from you and I am supremely thankful for what he has.

  2. #22
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    Leo,
    As I read your post I know you are being sincere and by your tone I don't feel this is a pity party on your part. And for this, I've decided to share with you a little bit of my experience and maybe shed a little light on our darkest days.
    There are a lot of things that suck about being a quad which I agree with you 100%.
    Before I get started I want to give you a little bit of background information. In September 2003 I was a senior in high school and couple months away from turning 19. I was on top of the world. A big fish in a small pond sort of speak. But at that age I think we all are :-) At the time I had a girlfriend and driving a car that I had always had my eye on and had recently purchased a month into the new school year. A couple weeks before the date of the injury I had a conversation with my girlfriend about what we feared the most. With her replying death and I responding without a doubt in my mind that death was not a problem but that I feared the most going through life being paralyzed from the neck down.

    On September 21, 2003 I got into a car and left a party with three other friends. We lost control and the driver died, I was behind the driver and broke my neck and my right arm. I don't remember anything of it because I was unconscious. The passenger was hurt and in the hospital for a week but was discharged and walked out. The other passenger in the back seat walked away without a scratch. I on the other hand slowly regained consciousness as the doctors wean me off medication from a drug-induced coma a few days later. So just imagine the realization I came to when I woke up in my biggest nightmare!


    At the time I felt lost and I didn't have family to support me (that's a whole different story) but I knew I wanted to continue what I imagined my peers doing which was going off to college. Even if it wasn't those in my inner circle of friends. Did I mention I wasn't a very good student either LOL. Anyhow, I learned to be resilient at an early age and not by choice so it was easy to make a conscious decision of what I wanted to accomplish. I was already thinking of how to get myself out of this situation of losing everything while I laying in a hospital bed in pain and with the TV on. I asked myself what I wanted and where I could see myself so I made a list in my mind. Without hesitation I knew that school would take me places and I wanted my own apartment and could see myself having people come in and take care of me and live independently as much as I could no matter what I regained back. I wanted everything right there and then and I couldn't wait to start.


    C 4/5 incomplete with sensation throughout my body. Doctors told my family that I would always be vent dependent and brain-damaged which were not true but then again doctors do say things like that because any improvement makes them look like gods. I have very little movement in my right arm but it's enough for me to push door opener buttons drive my power wheelchair with a T shape joystick and use a cell phone that's touch-screen and mounted close to my right arm. I started taking independent study classes in the hospital for high school credit. I was then discharged to a nursing home on Christmas eve. Two months later I moved to Omaha Nebraska for physical rehab and went half a day to another high school to get more school credit. After high school graduation three weeks later I started taking classes at a community college. Then I moved to Lincoln Nebraska for school and moved into another nursing home for 10 months and took the city bus to the community college every day. Then I moved into assisted living for young adults and 24-hour caretaking and after a year and a half. I made the leap and moved into the dorms at the University of Nebraska and was hiring caretakers from the state so I did the hiring and firing which meant I went through several people until I found consistent workers. In December of 2010 I graduated and majored in business administration. I still hadn't accomplish my goal of living in my own apartment but I had started looking at the beginning of my senior year but after graduation I moved in a house with three other roommates who were in wheelchairs and I was the only spinal cord injury. I was there for five months but still working and looking for my own place. I was finally approved and I have currently been in my own apartment for eight months and having caretakers come four times a day.


    Many of the things that you say are true but then again it's all about perspective but I am human again I want everything that you have mentioned and have had my bad days and have probably burned bridges. But my advice for what it's worth... is to keep an open mind and be creative with problem-solving because really it really does have to work for you but you have to look after yourself. It's also all about discipline because I can't feed myself or scratch an itch so the majority of my days I plan ahead and because I moved to a bigger city I have been able to utilize more resources and it's all about asking the right questions. I have negative thoughts but I have way more positive ones that I don't allow myself to dwell. Now I'm making bigger goals I took a longer break than I wanted but that's okay and those goals are to find a job or to go back for more school. You have to take control of your life because then you can go after bigger goals. It's been over a little eight years since I was injured but I have no regrets. It was hard at first because things were not moving fast enough and it was baby steps but you must learn how to crawl before you can run the New York Marathon. I have not had a girlfriend since my accident but I hope somebody will see some day that I can handle that too!

  3. #23
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    Quote Originally Posted by Steve View Post
    Unfortunately I heard that ( "...this year" ) every year since my accident (1991) and still waiting today
    You certain of that? As it i thought the main statements where fives years away to impossible which was the norm. 1990

    back then SCS appeared to be the main organisation to focus upon.

    No - although not a full cure things are moving in the right general direction with human trials occuring now when they were further away back then in 1990

  4. #24
    C-3,4 incomplete

    lucky enough to get off the vent after 7 months

    no movement below shoulders
    pressure sensation throughout my body
    control my chair with my chin

    i know it could be worse, been there
    SeanKelleys.com C-3,4 Incomplete Quadriplegic

  5. #25
    Quote Originally Posted by s.m.kelley View Post
    C-3,4 incomplete

    lucky enough to get off the vent after 7 months

    no movement below shoulders
    pressure sensation throughout my body
    control my chair with my chin

    i know it could be worse, been there
    I was wondering when you had your video if you had a trach like my husband does and did not think so.
    That is fantastic you got rid of the vent.

  6. #26
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    ya, it sucks.

  7. #27
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    Quote Originally Posted by Patrick Madsen View Post
    I agree with Grammy. We need to attack from all sides. If I had the choice of walking or making it a little easier for you guys; without hesitation, I'd pick help the higher injuries first.
    Im with you on this one.
    the newly injured, high quads, completes, then me,
    but I recon if people actually start getting cured, there will be something for everyone all at the same time.

    I did not consider there was any whining or complaints in this thread, just facts.

  8. #28
    Being over 45 when you have your high level SCI has a set of problems too.
    For one, you might not be in as good of physical shape as when a youth.
    My husband was a medical gas pipe fitter, installed furnaces and A/C on the side.
    He had no interest in the computer or read books before because he was a hands on person.
    After having medical set backs it made things harder and going to school not an option.
    I'm not implying it is impossible for high level quads to excell because there are many here that do.
    But it is a whole other set of issues, and I think that is what Leo is saying.

  9. #29
    ...c3-c4 complete, pathetic but my dream is to be para...

    Hope is what is keeping us on this earth.

    Thanks to all researchers!

  10. #30
    Quote Originally Posted by DupeNet View Post
    Hope is what is keeping us on this earth.
    Hope and wiener dogs.

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