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Thread: Tipping Point - No Treatment for you!

  1. #1
    Senior Member lynnifer's Avatar
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    Tipping Point - No Treatment for you!

    I'll be 44 at the end of the year and paralyzed 31yrs. The years have been about survival and very rough on my body.

    It's a shame I won't benefit from any of the potential treatments we read about now. Many of us ole timers won't.

    What a shame.

    I've got wounds on my feet, backside, on/off along the bottom bones of my leg .. yet circulation is excellent .. my stamina is non-existent. Stopping work probably saved my life but the quality of it now .. jeezus. I'm waiting for the end.

    I'm just in awe that my whole life was this ... I can remember reading on this site from 40-50yr olds saying the same (that treatment would never reach them) and feeling badly and encouraging them to think positive.

    Now here I am. Nothing coming out this year or next. Not even in trials. Ain't life grand?
    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. #2
    Stay strong girl. Remember they told us even 31yrs ago there won't be a cure so get on with life; well actually they would say in 7 years......lol. Seems you did just that. Congrats on a life well lived.

    I'm sure I'll get flamed for saying it won't happen for a long long time if ever. The treatments are better. They're keeping us living longer and much healthier. The cure is no good to anyone if the body is so broken down it won't make a difference. That's why care is just as important as cure. With care at least we see improvement in lifestyle. I'm 43 years post injury and the body is worn out but I still push it hard just in case the cure comes along. I know it won't for me, but it's a good motivator. I sure hope it happens for the others.

    Go buy a ukulele, join a local group to learn to play it and have fun. A person can't be sad playing a uke.

    My hats off to you Jennifer and bowing deeply in honor of a person who has gone thru so much yet continues on.

  3. #3
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    Lynnifer; When I got the bends the last time, in 1973 the doctor's of that day said all I could do is keep plugging along, there was really nothing for them to do. Having a young family and a High Interest mortgage that came along with my house, I saw no daylight, except hope I could continue working. The Doctor's (plural) told me I had to stop doing the diving work that had been my mainstay for work. I was very good at that work, quick and efficient, since when I came onto a job there was a lot of auxiliary people and equipment awaiting my work to be finished, so they could continue the project. After the accident, my phone stopped ringing.

    Working on the dry doubled the exertion and the after effects of that labor, with the partial paralysis I was left with. The sneaky part was the after effects of this accident was the continuing deterioration of my spine. Or perhaps it was just the labor I performed, and the amount of stress I put on this body. Not something the doctor's had predicted. And of course age does us no favors either, That fella Arthritis has taken up permanent residence as well.

    A few years after my accident the Marine Chapter of the Workman's Compensation Act was changed and revised to make accidents like mine, make the things considered while being treated under the Act, more comprehensive. However, this did me absolutely no good. Had I been justly compensated for the loss of my usable and valuable skills, the kinds of work I was left with, was physically demanding, and punishing for my body.

    However, even though I had many MRI's and tests in my past, a currently aware doctor thinks has corrected several of my cervical spine discs, and he is looking to see if he can correct my spinal column in my lumbar region, which is not only painful but causes many internal problems, like toileting, and the plumbing sensation etc, (none). Can he or will he be successful? Who knows!

    I have no clue to what is the causes of your physical problems are, but don't let all this get you down. Keep asking if there is maybe a different doctor, or possible treatment, something that can alleviate either your current discomfort or abilities. I do know there are new things done every day, but us old timers may still have a shot at them. Ask or even nag them, you never know, they may suggest something to get you off their back. The squeaky wheel gets the grease, so be squeaky.

    Hey spring is coming, and with it, longer days, that will pick you up as well.

  4. #4
    Lynnifer the epidural stim, these promising cells used in Dr. Ahlfors trial (Farrr off unfortunately) etc could still provide return in function now matter how long you've been in the chair! Bowel improvements etc thing is we don't know what the treatment are fully capable of because the few people involved continue to improve the more they stimulate and work out specific functions. That's what makes it so exciting!! Cures don't exist, only treatments and like I said they're only step one

  5. #5
    Quote Originally Posted by lynnifer View Post
    ...but the quality of it now .. jeezus. I'm waiting for the end.
    This is exactly how I feel some days, waiting for the end, and I'm only 8 yrs. post. Can't imagine being 31 years post like you are Lynnifer. That is impressive! I'm hoping Wise's trials truly start this year like he's indicated. If they do and are successful then there maybe enough time left for me to regain function.
    DaDutchman
    C5/C6 since 2007 due to car accident

  6. #6
    Senior Member darty's Avatar
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    I feel your pain. I'm injured 35 going on 36 years and was told in the beginning there was no hope. In fact no one expected me to live more than a year or so. Anyone who lives with this injury knows life takes it's tole on your body and your mind. Early on I was stubborn and convinced I would either work hard enough or some miracle cure would come along and save me so I busted my butt in therapy for 10 years, 8 hours a day, every day. I was young (23) and also had a social life which gave me things to do. At some point and I can't pin point exactly when I backed off on the therapy and decided to try and live as normal a life as possible. We devised many ways for me to be more independent and accomplish daily tasks so I took on more and more of them to fill my days.

    Now after all this time I don't believe I will see a cure in my lifetime and even if that miracle happened my body is so broken down it either wouldn't help or I wouldn't be a candidate. Life is precious and as far as I know I only have one, sure living it this way is not how I planed it but it is the way it is. I am 80% independent and every day I'm up early doing as much as I can to contribute to my life, and my family and friends lives. I help out where I can and given the circumstances have accomplished a great deal. Believe it not a song that gives me peace when I am most frustrated is Pink Floyd's Comfortably Numb.

    Comfortably Numb Lyrics
    Hello?

    Is there anybody in there?
    Just nod if you can hear me.
    Is there anyone home?
    Come on now
    I hear you're feeling down.
    Well I can ease your pain
    Get you on your feet again.
    Relax.
    I'll need some information first.
    Just the basic facts.
    Can you show me where it hurts?

    There is no pain you are receding
    A distant ship smoke on the horizon.
    You are only coming through in waves.
    Your lips move but I can't hear what you're saying.
    When I was a child I had a fever
    My hands felt just like two balloons.
    Now I've got that feeling once again
    I can't explain you would not understand
    This is not how I am.
    I have become comfortably numb.

    O.K.
    Just a little pinprick.
    There'll be no more, ah!
    But you may feel a little sick.
    Can you stand up?
    I do believe it's working, good.
    That'll keep you going through the show
    Come on it's time to go.

    There is no pain you are receding
    A distant ship, smoke on the horizon.
    You are only coming through in waves.
    Your lips move but I can't hear what you're saying.
    When I was a child
    I caught a fleeting glimpse
    Out of the corner of my eye.
    I turned to look but it was gone
    I cannot put my finger on it now
    The child is grown,
    The dream is gone.
    I have become comfortably numb.

    Songwriters: WATERS, ROGER/GILMOUR, DAVID JON
    Comfortably Numb lyrics ? Warner/Chappell Music, Inc., IMAGEM U.S. LLC

    I feel for you and I know how frustrating it can be but I hope you can find the strength to carry on.
    Last edited by darty; 02-10-2016 at 11:18 AM.
    ^^(A)^^

  7. #7
    Senior Member darty's Avatar
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    STRONG LANGUAGE Chris Rock on Doctors from Bigger And Blacker 1999.

    https://www.youtube.com/watch?v=hRy58wetRyo

    https://www.youtube.com/watch?v=G7P4iFg048k
    ^^(A)^^

  8. #8
    Quote Originally Posted by darty View Post
    STRONG LANGUAGE Chris Rock on Doctors from Bigger And Blacker 1999.

    https://www.youtube.com/watch?v=hRy58wetRyo

    https://www.youtube.com/watch?v=G7P4iFg048k
    That was funny! Thanks for the laugh.

  9. #9
    I know how you feel Lynnifer, it is very frustrating. Here's a copy of a post I did over at R and S about the Epi-Stim. I just don't get why this is being held back from us when it could help a lot of us from all that has been written about it.I'm just really upset the way the whole thing with the trials for the EPI Stim has been handled. Here's something from the way it has been described that could be helping a real lot of people NOW, I'm sure there is a way to get special FDA Approval going through the proper channels, but nope, they have to raise as much funding as possible for the current trial that ends in 2020, a lot of people involved make huge salaries off the said funding. I would not be surprised if they go into another trial after the one in 2020 is completed and raise yet more funding. I've seen this scenario play out time and time again over my 35 years of SCI. If Epidural Stim really works so good, get it to the people now, we all are not getting any younger. I signed up for the trial, donated a bunch of money to both Louisville and CR Foundation, never heard anything, just get a bunch of junk mail now from all these guys looking for yet even more money. Why bother? As you can tell I'm pretty emotional on this topic, but have good reason to be. Heck if this thing could do for me what was described in the four people who had the Stim unit placed in them I'd be very happy. I just don't see it ever happening. Of course when you talk to these people they will reassure you it's possible and all that jazz. Ya right. Here it is, the first implant was done in 2009 on Summers and he had good results according to the article http://www.reuters.com/article/us-sc...A3707J20140408 This was over 6 years ago. Heck even if it did not work out in people and it was implanted vs surface stim as they say they are working on, it could simply be removed. What's the big deal. So 6 years wasted and 4 more to go with the current trial, can you see why I think it will go on at least another 10 after the current 10 years coming up in 2020? But in answer to the original poster, yes, it sounds great and all, just no telling when in the heck it will become available if ever, I've seen so many things like this that were hyped fall by the wayside the past 35 years.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  10. #10
    Senior Member lynnifer's Avatar
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    In agreement. They want to maximize their return financially. It feels shitty to be someone who lots make money from, but it is what it is.

    Sometimes I'm sorry I ever found this site for false hope sake.

    I wonder if there have been further improvements? One of the guys is on my Twitter ... he was desperately trying to raise awareness and get on Ellen for it. I should ask if he'll come here and explain how he's doing. Wonder if he plateaued? It's a treatment, but not a cure after all.

    Maybe Harkema would come here too. I can ask as she's on Facebook and willing to answer questions.
    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

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