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Thread: Why is everybody so negative?

  1. #1

    Why is everybody so negative?

    Im not reffering to people on this site. when my brothers injury occured a month ago... the neurology practitioner seemed extremely negative. i know he was probably being practical maybe, but it came off as extremely negative. he was pushing a DNR and told us that we might as well because my brother would be extremely lucky too survive long... and said that the chances of him surviving 5 years were miniscule if he even survived in the short term. and while explaining the situation he said that the reality of it was that there was no hope and that he would just be paralyzed forever, because any treatments that may be developed wouldnt even be feasible in my life time... im 23 years old... much less my brothers life time which would probably be 5 years max. he went on to explain that christopher reeves with all his resources still died, and that normal people cant afford that, so my brothers chances were even slimmer. i even asked about stem cell technology, and also said that wasnt feasible in even my life time (remind you, im 23).
    So yes he seemed extremely negative.
    Now i have a question, would you say that therapies for paralysis is generations away; not even in my life time (im 23)?

  2. #2
    Senior Member mr_coffee's Avatar
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    thejessman3,

    I can't answer your question but from my experience ALL DOCS and THERAPISTS are extremely negative which sucks but they don't like to give false hope.

    I think false hope is better than no hope but they don't think so.
    Injured:10-16-04
    C7/C8, T1 incomplete;


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  3. #3

    Lawsuit maybe?

    i think the Doctors do not want to give you hope just to avoid any lawsuits, what do you think?

    Check this out

    http://www.stemcellschina.com/

  4. #4
    Quote Originally Posted by thejessman3
    Im not reffering to people on this site. when my brothers injury occured a month ago... the neurology practitioner seemed extremely negative. i know he was probably being practical maybe, but it came off as extremely negative. he was pushing a DNR and told us that we might as well because my brother would be extremely lucky too survive long... and said that the chances of him surviving 5 years were miniscule if he even survived in the short term. and while explaining the situation he said that the reality of it was that there was no hope and that he would just be paralyzed forever, because any treatments that may be developed wouldnt even be feasible in my life time... im 23 years old... much less my brothers life time which would probably be 5 years max. he went on to explain that christopher reeves with all his resources still died, and that normal people cant afford that, so my brothers chances were even slimmer. i even asked about stem cell technology, and also said that wasnt feasible in even my life time (remind you, im 23).
    So yes he seemed extremely negative.
    Now i have a question, would you say that therapies for paralysis is generations away; not even in my life time (im 23)?
    Thejessman3,

    I am sorry that you are going through this. It is bad enough to have to deal with the situation of a brother with such a severe injury but having to deal with unnecessarily pessimistic views from health care personnel is too much. What the doctor is saying is not well-supported by data. I know many people who have been on a ventilator for many years. His use of Christopher Reeve as an example is simply wrong.

    I am a scientist who has been working in the field for over 25 years. It is not true that therapies are generations away. Nobody can predict the timing of a cure but this person thinks that he can. You are right, this person is extremely negative and, in my opinion, inappropriately so.

    Wise.

  5. #5
    Most people who work in acute trauma centers have little or no knowledge about the long term effects of SCI or what happens to people with SCI after their initial trauma. So they have an extremely negative and distorted view of what life with SCI is like. One study done with ER staff indicated that 80% said if they had a SCI themselves they would like to be left to die!!! I shudder to think about those people taking care of my clients in the first few minutes or hours after their injury!!!

    This is one reason I always ask my clients to go back to visit the ICU and ER where they were first hospitalized. Many will not remember the staff, but the staff often remember them, and are amazed at what they can do following a good rehab program, and that it is possible to have a pretty good quality of life for many with SCI. Studies done of people with high SCI (all ventilator dependent) show than over 90% rate their quality of life is good or better, and nearly all say they are glad their life was spared.

    Statistics about life expectancy are just that...statistics. Many are averages, meaning that roughly half exceed those numbers and half don't reach them. CR was not a great example of life expectancy for someone with his level of injury. He was just one person, and one who took some risks that probably led to his ultimate death. I personally have worked with several people with high SCI (C1-3) who are ventilator dependent and have lived 20 years or longer. I was just recently talking with one young man that I cared for when he was 16 who is now 42, has a college degree (double major), lives in his own home with attendant care, and runs his own business. He is very meticulous about his health care, and makes sure that he gets good care all the time. He has been on a ventilator with no use of his limbs that entire time. You will find others on this website who have similar stories.

    While many health care providers are worried about giving unrealistic hope, they often err on the side of giving no hope at all. Both are wrong.

    Don't let this provider or similar providers get you or your brother down. At Rancho you will find not only more informed providers, but also peers for your brother (inpatients and outpatients) who can tell you what it is really like.

    (KLD)

  6. #6
    They told me I'd never walk. I did. They told me 100% chance of my never urinating normally, yet I do. They told me I couldn't move my left big toe until I made them look (they jumped like they'd been shot). I had an incomplete injury, got good acute care, worked my ass off in rehab and the following year.

    We've debated this subject a lot here on CC. Some people think false hope is bad. I think offering no hope is cruel and should be criminal. Tell your brother to ask the nurse's aides that will take care of him in rehab; they've seen it all and they told me how it all varies. The doctors are worthless at this one thing, managing expectations. They just want you to adjust to the new life.

    Re therapies, I know what I hope and what I believe. The only things I KNOW are what I've been through personally. I do KNOW that the doctors are frequently wrong!

    I gotta add, I'm impressed that you jumped to this question. A lot of people never get that far...

  7. #7
    I don't recall having many health staff that were negative about my injury. But some of them were in-your-face you-have-to-accept-this types and I lashed out as well as I could.

    I befriended most of the young pretty female nurses because they were cool and treated me like the teen I was and we just laughed all the time and developed a kinship.


  8. #8
    Senior Member Timaru's Avatar
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    Quote Originally Posted by thejessman3
    Im not reffering to people on this site. when my brothers injury occured a month ago... the neurology practitioner seemed extremely negative. i know he was probably being practical maybe, but it came off as extremely negative. he was pushing a DNR and told us that we might as well because my brother would be extremely lucky too survive long... and said that the chances of him surviving 5 years were miniscule if he even survived in the short term.
    Leaving the question of a cure aside the attitude of this medical practitioner is bordering on euthanistic.

    I thought they were there to save lives!

  9. #9
    At Bill's visit to the surgeon around a month after leaving the hospital, the Dr said, (after finishing his cell phone conversation about a vacation to Mexico), "just think Bill, a year from now you won't even remember what it felt like to walk." We were stunned, we had actually thought he had a small chance to walk again. He's a T-6, complete. I guess we were naive. Seemed pretty cruel to me. Bill's face just fell, he looked so shocked. And 5 years later, he still remembers how it felt to walk, not to mention that he walks in all his dreams, (& in most of mine).....

  10. #10
    Quote Originally Posted by Le Type Fran├žais
    I don't recall having many health staff that were negative about my injury..
    Me neither

    Quote Originally Posted by Le Type Fran├žais
    I befriended most of the young pretty female nurses
    Me too......although I suspect our motives differed
    C5/6 incomplete

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

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