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Thread: Alot of people don't know theres NO CURE

  1. #1

    Alot of people don't know theres NO CURE

    It seems everytime I see someone I know that they always say "you'll get better", and then you have to say "No, theres no cure for a SCI." And people are standing saying really. This happens so often, I wonder does anybody else have people saying this to them too? Then maybe the General public needs to be more informed about it. or then maybe they just don't care unless it's something they could catch that will kill them. Just some of my thought's this morning after being told again yesterday that I will be Ok before long.

  2. #2
    True. I never knew before though. Had some vague info in my head about Christopher Reeve and stem cells. SCI was nowhere in my frame of reference.

    Conditions I now know something about:

    SCI
    Brain tumours
    Alzheimers

    Why?

    My injury
    Sister-in-law's hopeless two year battle with cancer
    My father's deteriorating short-term memory

    Clear pattern there...........

    It's understandable that people don't understand.

    I do get frustrated by people assuming that there is something MORE that could be done for me at present. My mum often tells me that a relative she has spoken to over the phone says I should get myself to China because they are 'curing' people.

    My infrequent (honest) takeaway deliveries are made by a very pleasant Asian man who is always very concerned about whether I'm 'getting better'. I've told him I'm unlikely to change much but he always seems disappointed when I open the door and I'm still in my chair...

    Maybe he sees my expanding quad belly and is simply registering disappointment that I've ordered a 9" Meat Feast pizza instead of a salad.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  3. #3
    Quote Originally Posted by duge
    It seems everytime I see someone I know that they always say "you'll get better", and then you have to say "No, theres no cure for a SCI." And people are standing saying really. This happens so often, I wonder does anybody else have people saying this to them too? Then maybe the General public needs to be more informed about it. or then maybe they just don't care unless it's something they could catch that will kill them. Just some of my thought's this morning after being told again yesterday that I will be Ok before long.
    Duge, I speak to many people about spinal cord injury. They have heard that there is research that provides hope for people with spinal cord injury. Many have heard that stem cells may be useful. Most don't know quite what to say because they are unsure. So, it is really up to people who know to fill them in concerning the progress in research. Let me state what is well accepted and known.

    1. The spinal cord can regenerate under certain conditions. The age-old dogma that the spinal cord cannot heal, cannot regrow, and cannot improve has been disproven by many studies.

    2. One does not have to regenerate the whole spinal cord to achieve significant functional recovery. In fact, probably less than 10% of the connections (axonal) is necessary and sufficient to restore significant function.

    3. Many of the obstacles to regeneration in the spinal cord have been identified. While axons can regrow, they tend to stop at the injury site due to several obstacles:
    • Loss of tissue and cells that provide a suitable substrate for axonal growth at the injury site. These include loss of cells, cysts, and absence of cell adhesion molecules at the injury site. Cell transplants can rectify this.
    • The injury area is usually surrounded by glial cells that have grown to separate the injured area in the spinal cord from the remaining cord. These glial cells may discourage axonal growth into the injury site.
    • An extracellular matrix material called chondroitin-6-sulfate proteoglycan accumulates at the injury site. This material will stop axonal growth but can be broken down with an enzyme called chondroitinase.
    • Myelin in the spinal cord contains several proteins that stop axonal growth, particularly a molecule called Nogo. The Nogo receptor has been identified and various treatments block Nogo effects and allow regrowth.
    • Growth factors will stimulate axonal regeneration. However, regeneration takes a long time and sustained presence of multiple growth factors is necessary for regeneration to occur.
    • Increasing the intracellular messenger cAMP will stimulate regeneration. Several drugs may increase cAMP and have been reported to stimulate regeneration when combined with other therapies.

    4. Injury damages oligodendroglia, the cells that myelinate axons. Myelin is important for efficient and effective conduction of signals in spinal axons. Regenerated axons require myelination to function. The spinal cord contains cells that remyelinate axons, probably stem cells. Many cells have been reported to remyelinate or stimulate remyelination of spinal axons, including embryonic stem cells, neural stem cells, Schwann cells, oligodendroglia precursor cells, and olfactory ensheathing glia.

    5. The spinal cord has much of the neural circuitry necessary for function. For example, walking is mediated by the locomotor or central pattern generator (CPG) that is probably located at L2 spinal cord. Although the CPG had been identified in animal spinal cord, there was some debate whether humans have a CPG. Much evidence in the past decade indicate that humans do indeed have a CPG and it can be activated and controlled with relatively few axons. This may be the reason why many people with "incomplete" spinal cord injury recover ability to walk after spinal cord injury. The same is likely to be true for recovery of voluntary control of bladder, bladder, and sexual function. The spinal cord below the injury site usually still has most of its neural circuits intact. The neural circuitry is what causes spasticity and spasms.

    6. Some recent evidence suggest that stem cells can produce and replace neurons in the spinal cord. When coupled with regenerative therapies, it may even be possible to replace and regrow motoneurons that reinnervate muscle. This was considered impossible even a few years ago. However, much research still needs to be done to identify the best cells to use and the best combination therapies to use to stimulate neuronal replacement and regeneration in the spinal cord.

    I hope that this is helpful. It is up to people to educate others.

    Wise.

  4. #4
    Senior Member ChopperChick's Avatar
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    Question

    Quote Originally Posted by Wise Young
    3.
    • An extracellular matrix material called chondroitin-6-sulfate proteoglycan accumulates at the injury site. This material will stop axonal growth but can be broken down with an enzyme called chondroitinase.

    • Increasing the intracellular messenger cAMP will stimulate regeneration. Several drugs may increase cAMP and have been reported to stimulate regeneration when combined with other therapies.


    Wise.
    Can you tell us more about the enzyme chondroitinase. And at the risk of sounding really uneductaed, is this something in use here in the states at this time?

    What kinds of drugs increase cAMP and what therapies combined are helpful?

  5. #5
    yea most of the time people say things like "u'll be better soon" because they see things on tv that researchers are doin with mice which makes them believe the "cure" is around the corner. its not that they think the cure is here they just think its close because as a casual viewer of the news u would think so.

  6. #6
    Senior Member ChopperChick's Avatar
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    How about

    " Your strong, I know you can do it!"

  7. #7
    Yeah, people really have no clue for the most part but you can't blame them because I didn't have a clue before either.

    I appreciate what you are doing Wise!

  8. #8
    Senior Member kate's Avatar
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    Duge

    How about you print what Wise just wrote and write the number of your elected representatives on the back. Make a dozen copies, keep them with you, and when some helpful soul tells you that you're about to be cured, you say,

    "Only with your help. There is much research still to be done, and not enough people are doing it. Please call Senator so and so and ask for passage of the Christopher Reeve Paralysis Act. Here is the number."

  9. #9
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    Actually, alot of people i talk to, "Say hang in there, science has come along way, it'll be soon".

    Stcwhich point i gotta tell them.... yes but it's still along time comming, then explain procedues are mainly for acutes.Why i think China and Portugal are farces.... and more.

  10. #10
    Quote Originally Posted by ChopperChick
    How about

    " Your strong, I know you can do it!"
    Yup. We'll keep praying for you. You'll be healed very soon. Don't lose faith. God is using this to teach you a lesson. God can work miracles. You know, I knew someone exactly like you--he was in a car accident and broke his pelvis and couldn't walk for 3 months, but he's been restored 100%. That can happen for you too.

    Or the worst was this L.Ac., Ph.D. that my mom dragged me to yesterday, who told me that I didn't have spinal cord injury, that there's nothing wrong with my motor neurons. [how does he know this? because I hobbled in with a cane]. That my X-rays and neurosurgeons were all wrong. All that's wrong with me is some spinal curvature/scoliosis. He basically told us what my mom wanted to hear--that there's nothing wrong with me. The problem is in my kidneys and adrenal glands. His treatment? Lean forward and to the right when you're sitting. He blew me off when I expressed concerns that due to the rods and screws in my spine, leaning forward/to the right wouldn't fix my spine. And he wanted to charge me a ton of money for these "stem cell enhancers" he manufactures out of placentas. Very noncontroversial, he said. Has nothing to do with stem cells. And when I basically explained that I didn't believe him, he referred me to a patient of his who had the exact same thing--and he took me to meet this woman whose peripheral nerve was nicked during knee surgery and had minor foot drop which went away after a few weeks of his quackery treatment. He kept telling me that she has the same thing I have. My mom was ticked off at me for being rude to the nice doctor.

    I walked away having wasted nearly 2 hours of my time (30 min drive there, he kept me waiting for 30 min, then met with him for about 30 min, then 30 min drive back) ... and $85 bucks for his "consultation." All in all, quite pissed that someone passing themselves off as a clinician (he uses the Dr., L.Ac., Ph.D. on his business cards/contracts with all the major health insurances) and have no touch with reality.
    Last edited by dan_nc; 05-29-2006 at 02:22 PM.
    Daniel

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