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    BiPAP Titration

    Have you considered a cough assist to help with the breathing exercises during the day in prep for sleep?
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    Still going strong

    My friend is 1.5 years since symptoms, 4 months since diagnosis, no limb involvement. No PEG tube yet, would like not to need one. still maintaining weight with oral intake.
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    ALS Patients Traveling to higher altitudes

    I am a caregiver with a best friend who has bulbar ALS. I need help so she can travel to a higher elevation to see a grand-baby's birth! K has support of CPAP at night (yes, I know it should be BiPap but I can't write the medical order to change it- I am working on it) we can use supplemental...
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    Experiences with Bulbar ALS w/No PEG

    goooglecat I am a caregiver. My friend also has bulbar onset and I have the same questions as you. I am also frustrated by the lack of answers- as a nurse, I can't help but feel that someone knows the "usual" progression, but I can't get the docs or nurses involved in her care to share with me...
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    Any advice on getting into a car?

    I used the garbage bag trick. Get a hefty lawn and leaf bag. Put it on the seat witht he open end towards the door. Back onto seat, sit down. (Hold the door with your strong hand, have your wife keep her hip on the door so that it does not swing shut. ) your wife will be able to swin you easily...
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    CALS with Bulbarian friend

    Thanks for the search tip- now I know another way to use the forum.
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    CALS with Bulbarian friend

    My friend is newly diagnosed. Speech slurred, sleep apnea, some fasiculations, lyrangospasms and some vagal events with near syncope. She is recently complaining of itchy scalp. Is this common with ALS? Anyone have a suggestion? we are finishing up initial visit with ALS clinic in a couple...
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    Cramps in ALS

    A friend whose Dad had ALS told me tonic water managed the cramps.
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    Happening too fast

    Also a nurse caring for a friend with straight bulbar involvement. You are right that we hold ourselves to a whole new standard- i hope we both can figure out how to be forgiving of ourselves. The lift is an amazing thing- a family friend has one for her hubby- he is post stroke. she is 5' he is...
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    Describing symptoms to dr

    Vicki Talk to a PT at the ALS clinic. they are much better with mobility discussions- lots more experience. i bet a PT could help Dawne