Recent content by DawneO

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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
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    Question for Bulbarians

    My friend started the Nuedexta and it has really helped with the emotional lability. she does not have the outbursts of crying now and is glad of that victory! The neurologist had a coupon to defray the cost. Dawne
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    The emotional aspects with ALS

    primeconcern, My best friend was diagnosed a month ago. I guess I knew what the diagnosed would be at Christmas, but could not face. We heard the words at the neuro docs office...I am a nurse so I knew what it meant. The hardest thing about being a nurse when a loved one is sick is that we go to...
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    jamie, I saw that you were bulbar from a post today. I am caregiving my best best friend just...

    jamie, I saw that you were bulbar from a post today. I am caregiving my best best friend just diagnosed with bulbar. She says at night she feels a "humming" in her chest- like a cat purring? ever heard/felt anything like that? What are the most helpful things people did for/with you? I love her...
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    Looking to learn

    I know she should be on BiPAP instead of CPAP but the pulmonary doc won't order bipap and she cant get into the ALS clinic until March. it has been a headache. we are going to start with the CPAP so that she has something and switch to bipap when the ALS clinical sees.
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    Looking to learn

    My dearest friend was diagnosed with ALS on Jan 11. She has bulbar presentation. Speech is slurred, swallowing troubles at times, voice has changed. First sleep study and nocturnal oximetry are done, showing obstructive sleep apnea. Some fasiculations. Occasional lyrangospasm are really scary...
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