Recent content by stumble

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    i give up

    I have a hospital in my and I have an room commode I have nice electric wheelchair I have people who feed me, bathe me and a volunteer who takes me for walks my daughter bought a van to take to to advents and she woks across the hall from mine and to do becccn she comes to my defense. I have...
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    woman saves hersef from not being ventilates

    Health News - ALS Patient Receives Device to Aid Breathing Without Ventilator
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    All day in a wheelchair

    My bottom gets plenty of one on one contact. I looked eBay and saw a gel cushion and then I saw with holes in it. If you have this problem - which type of wheelchair do you find most helpful? Leaning back and transferring pressure to my back is no help at all. Plus, I wear a diaper """"...
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    I just can't stay awake

    I sleep all night get dressed and in wheelchair and take 5-6 hour long nap in the afternoon. I wake with any noise but tv just dosen't intrest me and I'd fall alseep watching it anyway Sandy
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    ALS and colds

    I'm doing fine. Have aspirator to get coughed up stuff out of my throat
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    Aww Crude...weight

    Hospice nurse came and I wrote out "too few calories" but all she reported to the doctor was my bipap settings. I cannot wear the bipap because I can't get the headgear off and I feel trapped.
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    Aww Crude...weight

    I have Bulbar Onset ALS. Hospice started yesterday. Son is coming up for my last Christmas. No bipap headgear, no vent. What is Cals?
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    Aww Crude...weight

    I can't speak, can't walk, have extreme strength loss in my arms, how can I call for help? I think I will collect your messages and show them to the Hospice nurse Sandy
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    Aww Crude...weight

    no nutritionist saw and nobody noticed the extreme weight loss. My caretaker doesn't like me choking so she set the rule to exclusive tube feeding. She works full time. Maybe dump some heavy cream down my tube. Hospice starts Saturday maybe she will make the change
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    Aww Crude...weight

    I am tube fed exclusively. During April 2014 my weight was 160. Now it's 134. I get 1 can 3 times a day.
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    ALS and colds

    I have a cold with nasal congestion and coughing. When is appropriate to call for help?
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    Urinary Catheterization or diapers

    When my husband died I got to use all his leftover diapers. My caregiver is leaning toward Catheterization. What are your opinions about this? Sandy
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    Always feel sick

    apparently it's my tube food that's causing the problem.
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    Always feel sick

    Do PALS always feel sick? Sometimes I feel stomach sick which burping doesn't fix. Sometimes it's affecting my head, and often both. I've tried cutting out different meds with no effect, but I suppose it's my drool med. Is this an issue I should mention to my ALS doctor? Sandy
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    I love ...

    I love going places
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