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Thread: A Cruel Illness

  1. #1
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    Unhappy A Cruel Illness

    Fourth anniversary with PLS and physical condition has deteriorated rapidly this year - no legs, no balance, no speech, emotional lability etc. I think the loss of effective speech is probably the worst of all so far. The fear of what's yet to come causes times of great anxiety. The experts tell me PLS is the "most benign" form of the disease - not so. To live to full lifespan like this, waiting for something else to end one's life is not my idea of benign.
    The posts of many members, fighting hard to deal with things, are examples of great inner strength and I applaud that attitude, but as a formally successful and active person that isn't for me and I would prefer an early exit.

  2. #2
    Forum Member Terry's Avatar
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    I am with you on an exit route Magnum. I don't think many PLS people live a full life span. My legs still function a bit but I have the rest and hands are quite poor now. It's all such fun.

    Regards \Terry

  3. #3
    Forum Member Jock's Avatar
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    I'm not at far down the road as you Magnum, but I understand your early exit view. There are some good folk here who combat the lack of speech with technology. Whether that's for you is another matter. All the best.

  4. #4
    Forum Member Jock's Avatar
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    If you've got some £10K Magnum you can go to Switzerland. My Mother did that to end her ALS. It's not just a matter of ringing Easy Jet...Dignitas have all sorts of safeguards and requirements in place.

    I've been reading that PLS can turn into ALS. Who is to say what will happen?

    I recall reading at this Forum not long ago of a relative with MND dying of Pneumonia. I thought to myself lucky bugger.

  5. #5
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    Hi Jock, thanks for the comment. Been into the Dignitas option so its there if needed. Read an article recently where the mother of England cricketer Stuart Broad had MND and found the chemicals for an exit from researching on the internet. Seems right she could choose her time to go with dignity when difficulties became too much for her.

  6. #6
    Forum Member pete's Avatar
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    Hi Magnum,

    Much the same position as yourself,and I agree with you about the loss of speech, for me I find that a daily struggle ,yes we have an iPad and yes it's better than nothing ,but it don't come close to being able to speak.
    As for using benign in any form of mnd bewilders me, nothing I have seen to do with mnd is benign !!. Makes me smile when I think back that once diagnosed with this condition ,that's where your left to your own devices and anything that comes along afterwards is attributed to the disease therefore your not treated, unlike our pets ,cats, dogs, in fact all pets are afforded the dignity of a peaceful end to suffering ,why is it not offered to humans , Doctors will offer all the reasons for keeping a patient alive, knowing full well they are utterly useless to give any treatment that will give us a chance at living to a better quality of life,sad reflection on life isn't it.??
    All I need is a miracle

  7. #7
    Forum Member Jock's Avatar
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    My Mother used to say we looked after our pets better too Pete. It's an absurd situation we find ourselves in.

  8. #8
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    So sad and so true. We canít bear to watch our beloved pets suffering, yet we hold onto our loved ones for dear life at any and all cost.

    I remember when I worked the ICU unit in the hospital years ago. ICU was a pretty intense unit, patients hooked up to everything, and anything possible to keep them alive. I was talking to the respiratory therapist who provided the breathing treatments as needed. He actually said to me ĎWe are treating dead people, we just canít let them go with peace and dignity can we?í haunting words, and Iíll always remember them.

    Must say Magnum itís a brave, and desperate soul that has the courage to make their own lethal concoction off the internet for their own exit. Just shows that Switzerland should not be the only land of opportunity to have this option.

    We only have a few States here that allow physician assisted suicide, but the person choosing this must be a resident there. I really donít think itís fair to be legal in one State yet not another. There are activists pushing for the dying with dignity act yet it remains a debate that many are still so against. Not me, if I ever saw it on the ballot it would get my vote for sure. No one knows what tomorrow brings, illness and suffering is not on anyoneís agenda, would be nice to know if it ever got that unbearable we could simply exit on our own terms.

    CCxx
    .

  9. #9
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    Hi Magnum,

    I am more advanced than you with my PLS. I take the view that death will greet us when we are ready for death. In the meantime there is hell to raise in pursuit of obtaining a cure. Also I am fighting for our human rights in respect of a life worth living. I have vowed to myself that I am not going to let the b*#%+*^ win.

  10. #10
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    I have just read through this thread and my heart goes out to all of you. Its only when this horrible desease attacks you or those you love, that it brings up so many thought provoking emotions. I know I love my Jim so much, we have a happy life and I just want to give him as good a quality of life as I possibly can. As for when his quality of life is not good I just don't know, I really dont know. Because its something that when he was in good health we never really, discussed. And now I suppose I am afraid to discuss it with him because I don't want to put ideas that are maybe not there or talk about something he may not ever want to talk about.
    Maybe that would be a start for everyone in our Country to fill out a form by law, stating what our wishes would be, but then again, do we actually know what we would really want until a horrible thing like this touches all of us? Respect to you all.
    Spring x
    Evil triumphs when good men stand by and do nothing.

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