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azgirl azgirl is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 28
  1. azgirl
    01-09-2019 09:45 AM - permalink
    chally I thought you had feeding tube ll keep hydration by starting day with sixteen ounce water. This is repeated three times. We just put in food bag on slow drip. When I get dehydrated I feel awful!
  2. chally
    01-09-2019 07:11 AM - permalink
    Thanks Kay, I seem to have gone down hill pretty fast here lately.

    How do you stay hydrated? Not easy with difficult swallowing,water thickener sucks!

    Been doing mj for a while and it helps, started atavan recently

    Not sleeping is rough

    Again thanks. Love ya
  3. chally
    01-07-2019 06:29 PM - permalink
    Hey Kay, here of late I have gone into a tailspin. Would you mind if I asked you a few questions
    Do you use a feeding tube ? If so what kind of formula? I am not tolerating ensure type very well

    Thinking about using baby’s food thinned down. Do you use water thickener?

    I have a morning aide for a few hours, wanting to get a more full time helper day and night as this nightmare is wearing both my wife and I down

    How much do you have to pay your aide? Does Medicare or va help out?

    My swallowing and breathing have gone down big time.

    I can’t get comfortable ever. Going to ask Laurie about changing trilogy settings. Set now at 4/12

    Answer at your convenience and I Hope you are doing as best as you can today.

    Thanks. Love ya. Chally
  4. affected
    07-17-2017 02:46 PM - permalink
    Hopefully not much longer and you can get back in the pool? You had some koala activity in your tree too. I think of you every single day when I am out koala spotting xxx
  5. affected
    07-17-2017 02:16 PM - permalink
    love you Kay and just wanted you to know I think of you often xxx
  6. marieandian
    06-27-2017 12:20 PM - permalink
    Thankyou for welcoming me. I am still getting used to this site as I'm not used to posting. But I will try my best lol xxx
  7. WendyWooG
    11-18-2016 02:56 PM - permalink
    Didn't want to hijack the bathroom remodel thread so I thought I would post here.

    I know it's still a commode chair but provides bidet function that can be used anywhere. Seems like an improvement.
    I am a bit worried now that I have mucked up our bathroom remodel so this may be our backup plan.

    Wendy x
  8. Colawoman
    10-10-2016 08:36 PM - permalink
    I noticed you were on now - how is Max? I haven't been on in a while but I can't find any posts...
  9. nuLE
    09-19-2016 04:31 PM - permalink
    hi, i'm new to the forum...could you please give me the contact info for the person i can get the lunasin products from? we are anxious to give it a try. thank you!
  10. Jocalyn8
    07-15-2016 07:17 PM - permalink
    I hope you are well,

    How is the lunasin going for you?

    I do not know if it's related by my constant twitching has slowed almost completely.

    I bought Reese's peanut butter cup ice cream as a mixer works quite well. It is still some nasty stuff .

About Me

  • About azgirl
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    State or Province
    56 yr old recently diagonosed trying to stay positive
    Math teacher
    Walking dog, swimming, reading, anything active


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  • Last Activity: Yesterday 08:06 PM
  • Join Date: 01-20-2014


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