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    I am in great need of support

    I have often felt that way myself, and it is usually worse when another loss occurs- loss of ability to dress, walk, feed himself, etc. Even the loss of friends due to difficulty of getting out of the house. I am still working full time, which allows me an escape. Do you have something that...
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    Hospice...how to know when it's time to call?

    Just an FYI: My PALS FVC is less than 30%, which technically qualifies him for hospice. We are not needing it yet, but I contacted a couple of agencies just for information. One will not accept patients on a Trilogy.
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    CALS Roll Call Continued

    I am new to the forums and not sure how the roll call forum works or its purpose. Thanks.
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    Recently lost PALS brother

    No common gene was found for them. Also, the brother's best friend from childhood, who lives near us, was diagnosed a few months before the brother. We were told this "cluster" does not mean there is a common cause for all three cases. I do not want to know if anyone else is at risk unless it...
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    Recently lost PALS brother

    My PALS was diagnosed Oct 2006. His younger brother was diagnosed July 2011, and we lost him 2 months ago. What a nightmare.
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    Equipment?

    Hugs for you and yours.
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    Losing myself

    Thank you all for the gut-wrenching honesty. My heart hurts for everyone.
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    Quality Of Life

    tripete, medical staff want to offer something that makes a hopeless situation better, so they sometimes offer suggestions just to be doing something. I hear it at our clinic visits. I am a nurse and now realize I have done the same thing to patients. I think I have become a much better...
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    Losing myself

    Tracy, I am concerned about you. It is good that you are recognizing there is a limit to what you can provide for your PALS. Please share your situation with someone near you--friends, family, ALS clinic. Be specific on what help you need--a home health aide, respite care, meals. People want to...
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    Kat's mom

    Re: 30% palliative I am so sorry for your loss.
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