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Thread: When is the line drawn?

  1. #11
    Quote Originally Posted by legitsrs View Post
    I hate paras. They have no idea what the quad life is like. Hell, i can't even imagine what high quad life is like but i don't even consider being a para as being that bad of a disability.
    Attacks on members here are not helpful or tolerated, esp. from a new member with such a scant profile. Please be respectful of others. You don't know what they are going through any more than they do for you.

    (KLD)

  2. #12
    Quote Originally Posted by SCI-Nurse View Post
    Attacks on members here are not helpful or tolerated, esp. from a new member with such a scant profile. Please be respectful of others. You don't know what they are going through any more than they do for you.

    (KLD)
    I wasn't hating on anyone specifically. Just saying that sure, we both have SCI, but paras have no idea what it's like being a quad - that's all i'm saying.

    Apples to oranges.

  3. #13
    Quote Originally Posted by legitsrs View Post
    I wasn't hating on anyone specifically. Just saying that sure, we both have SCI, but paras have no idea what it's like being a quad - that's all i'm saying.

    Apples to oranges.
    They aren't even remotely the same thing, but in general that doesn't have to be stated. This conversation literally has nothing to do with paraplegics, to any educated perspective even slightly, the questionable line is not even remotely crossed. In the case of a paraplegic lifestyle I believe they should be given time to cope , Realize they are still very much independent and how much they really can still do! There are numerous real life examples with recovery or with none at all of paraplegics being free, handling their own care, able to do adapted versions of numerous sports and activities relying more on their remaining function then just adapted mechanics. And if the life is not for them, well they have many options to choose from they would not have to resort to something like starvation they have MANY other options. In context of SCI i'm really only talking about high complete/ barly incomplete quadriplegia. The kind of injury with no real independence, and the kind of injuries that lead to the true stories of someone resorting to starvation!
    Last edited by JamesMcM; 06-20-2016 at 12:06 AM.

  4. #14
    Quote Originally Posted by JamesMcM View Post
    It obviously can't right now, but that is exactly why science needs to continue moving forward quickly with us pushing it forward faster! in the future I believe many things we consider impossible to be treatable Will become not necessarily curable but very much treatable (funds provided ). Even disabilities you're born with could be picked up before birth and repaired in development genetically. Gene therapies have massive potential!

    I agree that is an option, in fact I believe it should be mandatory for everyone to have a living will and advanced directive made when you're 18. But it is far from perfect, Because so many people never think of it happening, let alone think to have one made and they only go so far, if the disease or injury doesn't kill you even if no medical intervention takes place, you're screwed and if you become brain-dead it is most likely you will be taken care of either by the hospital or by a family member's direction. Also living wills are not readily available, ambulance picks you up they don't check for a living will you could get into surgeryand the lethal part could pass Long before the person that was supposed to bring your LivingWell gets there! Especially if they're a close friend or family member, and are so preoccupied with dealing with stress such a situation causes to them so they probably don't even think of it most cases...

    Nobody should have to resort to rotting and/or starvation to escape indignity,yet so many have and somebody will continue to!
    I guess one of the useful bits about being vented are that I can't leave the house without a portable suction machine in a bag or trache emergency kit also bagged. My DNR and Advance Directives go in there. My wife also has Lasting Power of Attorney and can halt any procedures if she knows I wouldn't want them. One of the dilemmas we do have is how the law would treat her if I died on one of the nights she looks after me by herself . Not getting treatment could be seen as assisting my death and really she should call paramedics and then say I don't want treatment which seems crazy. I just hope that if I do die at home one of my care team is with her to avoid any legal problems afterwards.
    Last edited by mrb; 06-20-2016 at 06:46 AM. Reason: typo

  5. #15
    James your posts are interesting. They have opened my eyes to the living conditions of some of us.
    I am from a small town and feel trapped here even though I get out quite a bit.
    Living in the city must be difficult
    Please do not be offended by my psots as I seem to have little else to do but kill time on here.

  6. #16
    Quote Originally Posted by mrb View Post
    I guess one of the useful bits about being vented are that I can't leave the house without a portable suction machine in a bag or trache emergency kit also bagged. My DNR and Advance Directives go in there. My wife also has Lasting Power of Attorney and can halt any procedures if she knows I wouldn't want them. One of the dilemmas we do have is how the law would treat her if I died on one of the nights she looks after me by herself . Not getting treatment could be seen as assisting my death and really she should call paramedics and then say I don't want treatment which seems crazy. I just hope that if I do die at home one of my care team is with her to avoid any legal problems afterwards.
    The idea that your wife would follow your directions, and that leading to the potential of her being charged makes my blood boil. You are completely paralyzed, you are completely dependent, so dependent but you need a machine to help you take every breath it is not un rational to rather be dead. When you hit a certain vertebrae bad enough C5 and up that line is crossed and it is no longer un rational rather be dead than live like that! She would be doing the right thing!! How do these doctors leave people in such terrible, painful, undignified frankly often pathetic positions and consider that a treatment job well done, let alone use depression as an argument to keep said person trapped in such a existence!

    Please do not be offended, I completely understand your rational thoughts and they are completely rational to want to die in your position; I mostly speak about myself above I find bowel care and being dependent deplorable I find it sick that I begged to be left in that ditch, and that I fought in acute-care numerous times to die only to be shipped off to rehab, where they "teach me" how iam going to live from now on be penetrated and taken care of and how it's perfectly acceptable in fact strong because I bumped my spinal cord!! Like I don't know what fucked up naive scared Barney sugarplum logic that is but all it screams is to fuck with dignity and honour!!! Hey at least you keep breathing, suns up birds are chirping praise be Jesus you should be happy here's an antidepressant to help with that!

    Oy vey, then there's people just concked out beyond belief, nothing there, no personality no speaking nothing works but the shit and piss still leaks oh and modern medicine chooses to keep them alive until something horrible finally comes and wipes them away. And the family usually come and visits once in a while to absorb their guilt and/or because they have no idea what else to do. If i ever become a fucking self-respecting man again that can protect myself or those that I care about, I'll never leave my parents like that. I've seen people leave their parents like that,now that I've lived like this I'd never be able to be ignorant to what they're doing to them how they're managing everything I could I wouldn't be able to sleep knowing they're trapped in some building,trapped in them selves laying in their own filth, having it pulled out of them not a shred of dignity, well all the nurses Twitter and facebook till their next dose of "precautionary" drugs.… dead but not at peace, it makes me so sick... But we rather just not talk about it, fuck it leave everyone like that, as long as air is going out of their lungs let's make it last as long as possible even if we have to use a machine to do it, let's keep a tally, let's see who doesn't best. We don't even do this kind of shit to our dogs, and thank GOD for that; Id literally kill someone trying tokeep a dog in its suffering they are simple, loyal, honourable creatures and don't deserve that, nothing really does... There has to be someone there to make a choice, to justify that it just blows me away that a doctors moral compass are so fucked up that they are more content leaving people like that for months maybe even years, rather then letting them drift in to peace, into the inevitable... THATS FOR THEM, that's not for the patient there's no argument there, that whole notion "were supposed to help people" is just a front, A white Shield. if you didn't want to have to pull the button medical intervention should not have been given is the most likely outcome was so dismal.
    Last edited by JamesMcM; 06-20-2016 at 09:44 PM.

  7. #17
    Quote Originally Posted by stevegalliazzo View Post
    James your posts are interesting. They have opened my eyes to the living conditions of some of us.
    I am from a small town and feel trapped here even though I get out quite a bit.
    Living in the city must be difficult
    Please do not be offended by my psots as I seem to have little else to do but kill time on here.
    Steve, vent brother, that's what this site is for.

  8. #18
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by mrb View Post
    I guess one of the useful bits about being vented are that I can't leave the house without a portable suction machine in a bag or trache emergency kit also bagged. My DNR and Advance Directives go in there. My wife also has Lasting Power of Attorney and can halt any procedures if she knows I wouldn't want them. One of the dilemmas we do have is how the law would treat her if I died on one of the nights she looks after me by herself . Not getting treatment could be seen as assisting my death and really she should call paramedics and then say I don't want treatment which seems crazy. I just hope that if I do die at home one of my care team is with her to avoid any legal problems afterwards.
    I would make an appointment with your local Fire Chief or whoever handles Paramedics/EMT services where you live and get this part figured out. The way I understand the law overall in the USA is that even with a DNR if someone calls 911 the responders are bound to do everything possible to keep you alive. So if you have a living will, advance directives both with copies to all your doctors and local hospital/s then your wife should be able to just call your physician to report your death at home as long as it does not appear to be suicide. I would also ask the FC if he or someone else can tell you if autopsies are required when no doctor is present and who pays. Hospices do this all the time. But if you do not want medical intervention do not call for an ambulance.

    You should have already discussed with your doctors that it is your choice unless someone has declared you incompetent to refuse medical care. Literally, you need to ask each of your doctors if they are comfortable with your decision making on future medical care. If one isn't then ask if they can suggest someone who is more in line with your beliefs. Try to avoid very young doctors. Right out of medical school and residency and they see all living patients as "a win" generally.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #19
    Quote Originally Posted by Sue Pendleton View Post
    I would make an appointment with your local Fire Chief or whoever handles Paramedics/EMT services where you live and get this part figured out. The way I understand the law overall in the USA is that even with a DNR if someone calls 911 the responders are bound to do everything possible to keep you alive. So if you have a living will, advance directives both with copies to all your doctors and local hospital/s then your wife should be able to just call your physician to report your death at home as long as it does not appear to be suicide. I would also ask the FC if he or someone else can tell you if autopsies are required when no doctor is present and who pays. Hospices do this all the time. But if you do not want medical intervention do not call for an ambulance.

    You should have already discussed with your doctors that it is your choice unless someone has declared you incompetent to refuse medical care. Literally, you need to ask each of your doctors if they are comfortable with your decision making on future medical care. If one isn't then ask if they can suggest someone who is more in line with your beliefs. Try to avoid very young doctors. Right out of medical school and residency and they see all living patients as "a win" generally.
    If only it was that simple, there isn't anyone in charge of emergency services, calls just go to a call centre and local crew respond, we've tried to get agreements in the past on which hospital I'b be taken to in the event I agreed and couldn't get that sorted! I have spoken to doctors and district nurses who know our concerns but no-one can guarantee what would happen if I were to die as that is in the hands of the police and Director of Public Prosecutions. I was classed as not having capacity to refuse medical treatment whilst in hospital by one lunatic psychiatrist have been re-assessed since then and am deemed to have capacity. I was seriously ill over christmas and very recently, district nurses brought sedatives so that if my breathing deteriorated to a point that I was suffering they'ed sedate me. That is great if it is a slow, gradual decline but for example 2 weeks ago I was vented with huge amounts of oxygen, being suctioned continually with sats still dropping, got down to 63% before I responded. That took about 30 minutes and my wife and carer didn't know when to call nurses and that I might be dead by the time they arrived as it isn't a fast response emergency service.

    We are trying to work through the legal aspects informing all medical professionals we deal with of my wishes so no-one can question her actions if/when it does happen.

  10. #20
    Quote Originally Posted by JamesMcM View Post
    The idea that your wife would follow your directions, and that leading to the potential of her being charged makes my blood boil. You are completely paralyzed, you are completely dependent, so dependent but you need a machine to help you take every breath it is not un rational to rather be dead. When you hit a certain vertebrae bad enough C5 and up that line is crossed and it is no longer un rational rather be dead than live like that! She would be doing the right thing!! How do these doctors leave people in such terrible, painful, undignified frankly often pathetic positions and consider that a treatment job well done, let alone use depression as an argument to keep said person trapped in such a existence!

    Please do not be offended, I completely understand your rational thoughts and they are completely rational to want to die in your position; I mostly speak about myself above I find bowel care and being dependent deplorable I find it sick that I begged to be left in that ditch, and that I fought in acute-care numerous times to die only to be shipped off to rehab, where they "teach me" how iam going to live from now on be penetrated and taken care of and how it's perfectly acceptable in fact strong because I bumped my spinal cord!! Like I don't know what fucked up naive scared Barney sugarplum logic that is but all it screams is to fuck with dignity and honour!!! Hey at least you keep breathing, suns up birds are chirping praise be Jesus you should be happy here's an antidepressant to help with that!

    Oy vey, then there's people just concked out beyond belief, nothing there, no personality no speaking nothing works but the shit and piss still leaks oh and modern medicine chooses to keep them alive until something horrible finally comes and wipes them away. And the family usually come and visits once in a while to absorb their guilt and/or because they have no idea what else to do. If i ever become a fucking self-respecting man again that can protect myself or those that I care about, I'll never leave my parents like that. I've seen people leave their parents like that,now that I've lived like this I'd never be able to be ignorant to what they're doing to them how they're managing everything I could I wouldn't be able to sleep knowing they're trapped in some building,trapped in them selves laying in their own filth, having it pulled out of them not a shred of dignity, well all the nurses Twitter and facebook till their next dose of "precautionary" drugs.… dead but not at peace, it makes me so sick... But we rather just not talk about it, fuck it leave everyone like that, as long as air is going out of their lungs let's make it last as long as possible even if we have to use a machine to do it, let's keep a tally, let's see who doesn't best. We don't even do this kind of shit to our dogs, and thank GOD for that; Id literally kill someone trying tokeep a dog in its suffering they are simple, loyal, honourable creatures and don't deserve that, nothing really does... There has to be someone there to make a choice, to justify that it just blows me away that a doctors moral compass are so fucked up that they are more content leaving people like that for months maybe even years, rather then letting them drift in to peace, into the inevitable... THATS FOR THEM, that's not for the patient there's no argument there, that whole notion "were supposed to help people" is just a front, A white Shield. if you didn't want to have to pull the button medical intervention should not have been given is the most likely outcome was so dismal.
    Keeping me alive was called duty of care although no-one actually cared about my wishes. My first words coming round in ICU were "turn the machines off" but no-one did despite me asking a lot more times and then trying to chew through the breathing pipe.
    I see it the same way you do, you wouldn't keep a pet alive like this, I'm totally dependent on others and have little quality of life, yeah, I work, go on my fes bike, get out in my off road wheelchair but I force myself to do this just so I have some semblance of a life that doesn't involve being prodded or handled.

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