Page 1 of 4 1234 LastLast
Results 1 to 10 of 32

Thread: Tipping Point - No Treatment for you!

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320

    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
    Senior Member
    Join Date
    Mar 2012
    Location
    Hampstead NC
    Posts
    1,099
    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 alan's Avatar
    Join Date
    Jul 2001
    Location
    Baltimore, MD
    Posts
    6,711
    Quote Originally Posted by DaDutchman View Post
    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.
    This is how I always feel. It's been 34.75 years of this hellish torture that only gets worse. I don't know how to do ADLs myself, and the irony is that even if I had been more independent, continually increasing upper back pain worsening shoulder blade issues would be increasingly limiting that level of independence as time goes on (cause of ever worsening body pains and shoulder blade problems unknown, as MRIs over the years are stable.)

    I love this site for the information it has, but I feel so incompetent when I'm on it, and when I think about it.
    .
    Alan

    Proofread carefully to see if you any words out.

  7. #7
    Quote Originally Posted by alan View Post
    This is how I always feel. It's been 34.75 years of this hellish torture that only gets worse. I don't know how to do ADLs myself, and the irony is that even if I had been more independent, continually increasing upper back pain worsening shoulder blade issues would be increasingly limiting that level of independence as time goes on (cause of ever worsening body pains and shoulder blade problems unknown, as MRIs over the years are stable.)
    .

    Funny thing you mentioning shoulder blade issues. I remember complaining about the pain I'm my right shoulder blade while I was in the ICU. Moving on from ICU I continually complained about the pain in my right shoulder blade. While doing outpatient therapy I tried Bio-feedback. Unfortunately because of the high amount of baclofen I was on we couldn't get my leg muscles to fire. One day I asked my therapist to put the feedback sensor on my right shoulder blade where I was experiencing the most pain. When she did that, the signal went off the graph indicating that muscle was doing a tremendous amount of moving. The pain I was feeling was a cramp because the muscle had been working so much.

    After trying acupuncture, Botox, massages, a variety of drugs, ultrasounds of my bladder and kidneys (suspecting the pain in my shoulder blade was referred pain) and seeing 4 different neurosurgeons, it was determined I had a herniated disc between C4 and C5 that was the root of my pain. The disc was pressing on a nerve causing the muscle in my right shoulder blade to fire. Quite frustrating that some many doctors tried a bandage approach instead of looking for the root cause. Even more frustrating considering I would mention the bio-feedback and what I would do to try an alleviate the pain (putting Icy Hot or similar creams to try and make the muscle relax.

    In December of 2015 I had surgery to fuse C4 and C5 in an attempt to take pressure off that nerve. Thus far I've had good days and days where the pain is worse than before the surgery.

    Alan you talk about the pain you've been having, but you're 34.75 years post. Here I'm only 8 years post and going through the same torture. I sure do hope the fusion of my two vertebrae will bring about relief. I'm not so sure if I could another 26.75 years with this pain.
    DaDutchman
    C5/C6 since 2007 due to car accident

  8. #8
    Senior Member darty's Avatar
    Join Date
    Aug 2004
    Location
    Las Vegas, NV
    Posts
    1,207
    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)^^

  9. #9
    Senior Member darty's Avatar
    Join Date
    Aug 2004
    Location
    Las Vegas, NV
    Posts
    1,207
    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)^^

  10. #10
    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.

Similar Threads

  1. Stem cell biology at tipping point.
    By Finbar in forum Cure
    Replies: 2
    Last Post: 07-29-2012, 02:45 AM
  2. Replies: 1
    Last Post: 07-24-2005, 05:57 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •