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Thread: We're the orphans even here at CareCure

  1. #1

    We're the orphans even here at CareCure

    In reading statistics, CP / neuro to the degree we have it is rare even among SCI and most common in the lumbar region injured.

    We, as a class, get treated as poorly here by the majority, who while having some pain, do not suffer the endless cruelty of CP.

    I don't even bother with personal comments on the life board about what I am, I say hello, have a few folks I chat with, but for the most part, our group doesn't even get it and the severity of pain they suffered at time of injury is lost in time rather than relived all day every day.

    An observation. Not to diminish the few who try.
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  2. #2
    As someone without neuro/CP, I just want to give much respect to you folks who deal with it daily.

  3. #3
    Last night my husband was awake with neuro/CP and I felt so helpless.
    For some unknown reason if we put his vest chest percussion on (normally use it twice a day to loosen secretions) and let it shake about 15
    minutes he gets some relief. I have no idea why and it does not always help.
    I gave him his Lyrica early and also some Ativan.
    He is sleeping now.
    It is so unfair to (unfair........what a word!) to be paralyzed, but still have horrendous pain no one understands.
    Someone here recently described sitting with his "feet in a bucket of acid."
    Sigh.

  4. #4
    Senior Member alan's Avatar
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    How can one explain a burning back that feels hard and stiff like concrete, with the feeling of a ridge of bone sticking out that pushes up to your neck? When you move, the bones rip your skin. It's not even believable. How could anyone understand that? And that's just the beginning.

    I want to have a life, friends, and less dependence. Instead, I could live another 30+ years getting worse. Bah.
    Last edited by alan; 03-12-2011 at 07:09 PM.
    Alan

    Proofread carefully to see if you any words out.

  5. #5
    Senior Member
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    I don't think any of you are being ignored. For those of us who are not dealing with the chronic pain of sci, we can't offer very much. My son does have some pain, daily, but nothing like what you all go thru. I know, I think, what the "burn" feels like. Having 2 c-sections where your stomach muscles are cut thru, the healing process feels like someone is holding a blow torch against your gut. Very painful with every breath. But what you are all dealing with, most of us really don't know what to say that would be helpful. I am very grateful that we aren't dealing with the pain. So sorry for all of you!

  6. #6
    Senior Member Van Quad's Avatar
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    Quote Originally Posted by loreo View Post
    As someone without neuro/CP, I just want to give much respect to you folks who deal with it daily.
    same here. SCI is one thing, but to have excruciating pain on top of it is just wrong.

  7. #7
    Thanks for posting this thread about the chronic, severe pain you and others with neuro-cerebral palsy (CP) endure. Personally, I think CP is one of the least understood of neurological disorders. When you find particularly good articles about CP, I think it would be a good idea to post them for us to read. We will all benefit from broadening our knowledge and understanding

    That said, we have forums: (the last two don't have any submissions)
    Tranverse Myelitis, Multiple Sclerosis, Non-traumatic SCI ALS, MS, polio, stroke, and other non-traumatic causes of spinal cord injury

    Neurodegeneration Research ALS, Parkinson's, & Alzheimer's disease

    Multiple Sclerosis Research Recent research on multiple sclerosis

    But none of these forums appear to be a good fit for information and exchanges about CP. Dr. Young, Moderators, and Administrators, is there a possibility to add a CP forum?

    All the best,
    GJ

  8. #8
    Senior Member alan's Avatar
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    CP in this case is referring to central pain syndrome.
    Alan

    Proofread carefully to see if you any words out.

  9. #9
    Quote Originally Posted by alan View Post
    CP in this case is referring to central pain syndrome.
    That is what I was referring to.

    Then there is BP.
    Bowel Program
    Blood Pressure
    British Petroleum
    Bi Polar
    Batting Practice........

  10. #10
    CP (central pain) makes you a CP (couch potato) unable to concentrate on the simplest CP (crossword puzzle) and makes you into a CP (crazy person).

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