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Thread: Tipping Point - No Treatment for you!

  1. #11
    Senior Member lynnifer's Avatar
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    Also remember, a couple of years ago with Fampyra, I gained some sensation and lower back use ... I was on such a natural high for like a year.

    When I plateaued, I crashed hard. I wanted more. It was devastating. Still is.
    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. #12
    Senior Member lynnifer's Avatar
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    Took this photo from before the Super Bowl off Mr Shillcox's Twitter account. I'm not certain what the legalities of that are, but once it's on social media ...?

    Wonder what those sensors(?) are attached all over the body?

    I've sent emails asking Dr Harkema and Mr Shillcox if they would come here to answer some questions.
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    Last edited by lynnifer; 02-13-2016 at 09:52 AM.
    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. #13
    Senior Member lynnifer's Avatar
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    He was one of the first to have the implants and I don't see incredible leg muscle definition or walking confidently (follow his Twitter account). I see a lot of standing? But who knows ... seeing that photo of a young man in terrific shape still reminds me of how fragile we are when paralyzed (the dichotomy of a strong upper body and thin, paralyzed and fragile looking legs) ... and how much my body has suffered from decades of paralysis. How much our bodies have suffered.
    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

  4. #14
    Senior Member lynnifer's Avatar
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    I've heard back already from Mr Shillcox who 'would love to talk about it.'

    Admins if you see this, is this something I can arrange or would someone else like to take over (like an admin who could help him get in here?) I readily told him and Dr Harkema (who I don't expect to hear from until Monday or Tuesday due to holiday (in Canada and US too?) that I am NOT a representative of Carecure, just a member.

    I think this would be great for the community. I know I could use a boost. It's too bad there wasn't a chat function.
    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

  5. #15
    By all means tell him to come to the forums and start a post in either "Cure or Life" forums to talk about his experiences this would be great. I'm sure it helped him, the question is how much and can if be applied to real world living situations? This sort of reminds me of the FES walking therapies which took place in the mid 1980's under the direction of Dr. Jerold Petrofsky on Nan Davis. Yes, it was great therapy, but really did not work out as far as being functional in real world life situations and kinda remained in a lab setting. I see the same thing with Epidural Stimulation. I think this is why we see so much in the way of the use of Robotic Legs and that sort of thing because there is no real answers on the curative factors once a SCI is sustained. Best bet for the function, turn the person into a robot.
    "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

  6. #16
    Senior Member darty's Avatar
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    I remember this from 30 years ago I was only 5 years into my injury, young and healthy. What happened to this "groundbreaking research".

    Jerrold S. Petrofsky
    From Wikipedia, the free encyclopedia

    Jerrold S. Petrofsky, PhD is a professor of physical therapy at Loma Linda University in the School of Allied Health Professions.[1]
    He is best known for his development while at Wright State University in Dayton, Ohio of a portable computer system which stimulated the leg muscles of paralysis victims allowing them control of their lower extremities. In November 1982 he rose to prominence when a student, Nan Davis, who had been paralyzed from the waist down for four years was made able to walk using technology Petrofsky helped developed.[2] Their story became the inspiration for the television movie, "First Steps".

    http://www.daytondailynews.com/news/...w-a-tea/nNGXN/
    ^^(A)^^

  7. #17
    Senior Member alan's Avatar
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    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.

  8. #18
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by Curt Leatherbee View Post
    By all means tell him to come to the forums and start a post in either "Cure or Life" forums to talk about his experiences this would be great.
    Okay - I'll write back and let him know I'm waiting to hear from Dr Harkema as well. Think up your questions people! I'll hope he has a free day during the week.
    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

  9. #19
    Great sounds good. I dunno maybe I'm being to hard on researchers out of frustration, maybe too much time on my hands recovering from the Surgery I had a month ago and not playing sports and hand cycling, but to me when you investigate things relating to research is kind of shocking. So may promises that never ever materialize. I think when the public is exposed to all these miracle stories they think we in wheelchairs are that much weaker than the rest of people for still being disabled. It's surprising too, how few emails, letters and calls even get answered when you try and get some answers, but if you want to donate towards research there is always somebody available 24/7.

    I was not bad mouthing the Petrofsky's, both those brothers are true genius's I have the ultimate respect for the both of them. But other than exercise or in a lab setting FES is just not all that useful in the real world. I'm sure there are those who would disagree with me, but it's just my take on the subject.
    "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. #20
    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

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