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Thread: Tipping Point - No Treatment for you!

  1. #21
    Quote Originally Posted by Curt Leatherbee View Post
    . 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..
    They don't need those stories to come to that conclusion! Some people see people living like this and that's the conclusion they come to, rightfully so in my eyes for most situations. I never thought my dads quadriplegic friend was weak until I finally got first-hand experience of how he lived for 20 years, simply expecting to be cared for every day. Honestly what others think means little, but after living this way it's the self disgust I get from living such a repulsive dependency, that's troubling,not to mention the condoned submissive attitude of accept the "inevitable" contorted to delusion to make us interpret that as some kind of warped form of strength, makes my skin crawl . If were talking on the purely physical standpoint the answer is evident doesn't matter how much hand cycling you do, physically no comparison.
    Last edited by JamesMcM; 02-15-2016 at 05:19 AM.

  2. #22
    Senior Member alan's Avatar
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    Dutchman, I hope your fusion helps. I've been fused from C-4 to C-6 since three months after my injury. Crazy sensations of my shoulder blades, like all the rest of the crazy sensations my body, are apparently neuropathic.
    Alan

    Proofread carefully to see if you any words out.

  3. #23
    I wish I believed in the e-stim. If it's real and it's being held back from us- I think we need to get a radical strategy anything from suing to protests. Something is really fishy about what's going on. It needs to be replicated and other labs before we can really get excited.

    I hear you lynnifer, we are left behind and no one is strong enough to get through the noise into the press. I once had hope, but I was fooled by so many doctors that I don't even think that I'll benefit from any of the advocacy and hard work that I've done. If we start list the doctors – Dr. Kiersted, Dr Huaage, Dr. Davies, Dr. Lima, Dr. Kliesenbloom....and on and on. It is sad. I'll keep advocating while I'm here.

    There's a large part of me that wishes I never read Dr. Young's 10 questions about SCI. Do you remember the document on how we are had passed the first generation therapies and that second and third-generation therapies were on their way. I so wish he had been right.

  4. #24
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    My daily life improves the less I think about cure. I remain hopeful. I believe it will come but when... I don't bother with. It may come too late for me as well. As a quad, even if a treatment lowered my level to a para, I would consider that very much cure-ish. It certainly would improve life.

    But I totally feel your pain and I think the same many things. SCI is cruel.

  5. #25
    Senior Member lynnifer's Avatar
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    It's the little things. I want sphincter muscles back - the ability to do kegels etc. paralysis long-term really effs over a female.
    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

  6. #26
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    Lynnifer, Women have the unique problems of females, and men have many different but similar issues that equal yours, and are much the same. And then EVERY SCI has unique problems. those problems, or challenges that are unique to them as well. There are always things that are are different and complex. We all struggle with something, and "we" all think we are the only ones that this effects, or concerns others.

    What I constantly see here and else where that folks who still manage to use manual wheelchairs, seem to think this manual wheelchair is some sort of Badge of Honor. I have watched some person who asks for advice, who struggles and describes how their shoulders are destroyed and some still think this person should still use a manual chair .... Well BS to that. It does seem that the uniqueness of the individual issues has not struck some folks. For some of us we opt to make our less difficult using a power chair, and more complicated arranging long distance transport, (cars/ buses, public transport. "I" find "I" am more independent using "my" power chair. "I" fetch the things that are in my reach. "I" take no pleasure being treated to special considerations, "I" do everything "I" can to stay personally in control of my life.

    Shoulder repair or replacement, as it was described to me by surgeons, is a no go from the start. I cannot leave my wife of 46 years to her own devices for months on end. I did however, get C-3, through C-6 and some discs replaced, for me it reduced my pain level from a 10+ at "some" times to currently 3-4 level most of the time. Sure some of the pain I felt masked some of the other pain I felt, and now some of this shows up from time to time, but that is/was just the upper body and arms which also benefited some from this surgery. At the 10+ level it made suicide look as an attractive alternative, even with the narcotic pain killers I used.

    I would suggest that every SCI patient and in fact every person visiting any doctor with a complaint, write down every aspect of your concern. Memory when it is the only resource will fail you. If pain is involved noting when and what causes this pain, and time of day, or what you had done previous to this current complaint. When pain goes away even if it is temporary it is so often erased from your mind quickly. However, no matter what we may think, the more information we give to Doctor treating you may be a key to assisting him help you. "He/she is not a mind reader. Do not let the doctor lead the conversation YOU are the one complaining, allow him to listen, he has trained to be a listener. But if he has to squeeze your symptoms out of you, he is doing your thinking.

    I have been suffering these issues and the creeping neuropathy and perhaps other physical damage for 45+ years. Trying to circumvent my physical inabilities has created more physical and neuro damage in those years. It took 35 to 40 years before I allowed myself to use mechanical aids of any sort. When I finally succumbed to a wheelchair for transport, I chose to be able to get myself around, and "MY" shoulders could not take the stresses of a manual chair, I tried it.(NFG) If I allowed myself to succumb to the well meaning assistance of others I could very easily become totally submissive and dependent. I cannot live in someone else's skin, I do not judge them. I suggest any SCI or other person with a damaged body to not judge our peers. "That", serves no good purpose.

    This is my response to James McM, quote; "never thought my dads quadriplegic friend was weak until I finally got first-hand experience of how he lived for 20 years, simply expecting to be cared for every day. Honestly what others think means little, but after living this way it's the self disgust I get from living such a repulsive dependency, that's troubling,not to mention the condoned submissive attitude of accept the "inevitable" contorted to delusion to make us interpret that as some kind of warped form of strength, makes my skin crawl" .

    Do you, or can you, imagine how, if your Dad's friend was not pushed to submission early on, may have enjoyed some independence, perhaps in a powered wheelchair, that may or may not have been excluded as an option, due to an over abundance of love, and a desire to help? In my lifetime I have witnessed this phenomenon quite often, the well meaning, controlling others to submission, while those they want to help are in no position to resist. We all have a some requirement to feel needed, and most want to do what "the think" is best for another person. Let the person being helped make those decisions if they can, or want to, don't make those decisions for them. That is my very biased opinion.



  7. #27
    Senior Member lynnifer's Avatar
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    I'm in transition to a power chair. I use my manual at home, powerchair elsewhere.

    I've got a bowel prolapse (leaking everywhere non-stop) .. had a bladder prolapse fixed in 2011 along with a hysterectomy but it's leaking around the foley. An apparently infected foot again after 13yrs that'll probably lead to IV therapy again.

    I stopped working two years ago (it'll be three this July) to take care of my body 24/7 but it's only become worse.

    I'm not actively suicidal, but I am considering refusing treatment. I just don't see the point anymore.
    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

  8. #28
    Quote Originally Posted by Bob Sullivan View Post
    Lynnifer, Women have the unique problems of females, and men have many different but similar issues that equal yours, and are much the same. And then EVERY SCI has unique problems. those problems, or challenges that are unique to them as well. There are always things that are are different and complex. We all struggle with something, and "we" all think we are the only ones that this effects, or concerns others.

    What I constantly see here and else where that folks who still manage to use manual wheelchairs, seem to think this manual wheelchair is some sort of Badge of Honor. I have watched some person who asks for advice, who struggles and describes how their shoulders are destroyed and some still think this person should still use a manual chair .... Well BS to that. It does seem that the uniqueness of the individual issues has not struck some folks. For some of us we opt to make our less difficult using a power chair, and more complicated arranging long distance transport, (cars/ buses, public transport. "I" find "I" am more independent using "my" power chair. "I" fetch the things that are in my reach. "I" take no pleasure being treated to special considerations, "I" do everything "I" can to stay personally in control of my life.

    Shoulder repair or replacement, as it was described to me by surgeons, is a no go from the start. I cannot leave my wife of 46 years to her own devices for months on end. I did however, get C-3, through C-6 and some discs replaced, for me it reduced my pain level from a 10+ at "some" times to currently 3-4 level most of the time. Sure some of the pain I felt masked some of the other pain I felt, and now some of this shows up from time to time, but that is/was just the upper body and arms which also benefited some from this surgery. At the 10+ level it made suicide look as an attractive alternative, even with the narcotic pain killers I used.

    I would suggest that every SCI patient and in fact every person visiting any doctor with a complaint, write down every aspect of your concern. Memory when it is the only resource will fail you. If pain is involved noting when and what causes this pain, and time of day, or what you had done previous to this current complaint. When pain goes away even if it is temporary it is so often erased from your mind quickly. However, no matter what we may think, the more information we give to Doctor treating you may be a key to assisting him help you. "He/she is not a mind reader. Do not let the doctor lead the conversation YOU are the one complaining, allow him to listen, he has trained to be a listener. But if he has to squeeze your symptoms out of you, he is doing your thinking.

    I have been suffering these issues and the creeping neuropathy and perhaps other physical damage for 45+ years. Trying to circumvent my physical inabilities has created more physical and neuro damage in those years. It took 35 to 40 years before I allowed myself to use mechanical aids of any sort. When I finally succumbed to a wheelchair for transport, I chose to be able to get myself around, and "MY" shoulders could not take the stresses of a manual chair, I tried it.(NFG) If I allowed myself to succumb to the well meaning assistance of others I could very easily become totally submissive and dependent. I cannot live in someone else's skin, I do not judge them. I suggest any SCI or other person with a damaged body to not judge our peers. "That", serves no good purpose.

    This is my response to James McM, quote; "never thought my dads quadriplegic friend was weak until I finally got first-hand experience of how he lived for 20 years, simply expecting to be cared for every day. Honestly what others think means little, but after living this way it's the self disgust I get from living such a repulsive dependency, that's troubling,not to mention the condoned submissive attitude of accept the "inevitable" contorted to delusion to make us interpret that as some kind of warped form of strength, makes my skin crawl" .

    Do you, or can you, imagine how, if your Dad's friend was not pushed to submission early on, may have enjoyed some independence, perhaps in a powered wheelchair, that may or may not have been excluded as an option, due to an over abundance of love, and a desire to help? In my lifetime I have witnessed this phenomenon quite often, the well meaning, controlling others to submission, while those they want to help are in no position to resist. We all have a some requirement to feel needed, and most want to do what "the think" is best for another person. Let the person being helped make those decisions if they can, or want to, don't make those decisions for them. That is my very biased opinion.


    Not sure what you're trying to get at, independence is not possible for him! He had no choice but to go right to a power chair like myself, because he did not have the function to use a manual chair. As for accepting help, unless he wanted to remain motionless in that hospital bed they put them in directly after injury ( not allowed I tried for myself ) he had no choice but to accept help. To explain his injury was severe enough to leave him incapable of even adjusting himself in bed let alone getting in or out of it! I am pretty much the exact same way I just have more spasticity. There's no way around this no if and or buts no amount of mental fortitude, exercise or practice is going to change it! No matter how much you want to change it, or do better! We barely have anything to exercise, it's to the point where simply getting a pillow out from under your head is either next to a impossible or equivalent to rewiring a household in difficulty! There is no "accepting" help, to "live" this way you have to EXPECT help. Which "I" find disgusting, Eliminating all traces of nobility that includes strength, along with dignity, honor etc. But here I'am...

    "transport. "I" find "I" am more independent using "my" power chair. "I" fetch the things that are in my reach. "I" take no pleasure being treated to special considerations, "I" do everything "I" can to stay personally in control of my life.

    Good!As you should, Must be nice to have any real control tho!
    Last edited by JamesMcM; 02-22-2016 at 06:41 PM.

  9. #29
    Quote Originally Posted by lynnifer View Post
    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.
    I was shown a video from this work while I was in rehab. It was labeled by my doctor as the most "cutting edge" technology being applied. I think he was expecting me to be more excited but I felt heartbroken after seeing it. The "walking" was all very assisted and very awkward. I believe there is a large delay time for response/action. The video I watched had patients speak out loud, and then a waited reaction from the muscles. I was as uninformed as all of us were pre-SCI. I was hoping treatment was further along after injury. Now after researching it, seems we're still a million-miles away from true recovery. I told my doctor that I had best use my time/energy for getting better on the wheelchair, than flying to Kentucky. I should be more optimistic, but maybe it's more settling to my mind to focus on what is real and available. Which is my chair

  10. #30
    Senior Member lynnifer's Avatar
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    After 32yrs, you'll wish your muscles would move - either naturally or artificially. If I had been offered? I would have taken it.

    I hate to say it, but it looks like the scam they're going in Thailand is more progressive than what's come of these clinical trials (excluding Edgerton because I have no knowledge never having seen a patient of his on youtube).

    You'll need to have access to facebook for this .. but he's on his second round of physio there and can voluntarily lift his legs.

    Remember it takes 2yr olds almost that long to walk ... to learn it all over again? Who knows.

    https://www.facebook.com/Belldogg198...4772210744708/
    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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