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  1. V

    Got away.... get away

    I think all PALS should get their room comped regardless. Glad you had a good getaway.
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    CALS Roll Call Continued

    Robin, is your husband using bipap at night? When my PALS first needed to start on bipap he exhibited the same behavior. He was restless and could not sleep. He started exhibiting other behaviors as well (confusion, paranoia, and urinary incontinence) that I attribute to CO2 buildup. Once he...
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    Traveling v4.0

    John, good you were able to do your trip. When my PALS was better we did a little traveling. Our last trip was to Yellowstone when he had started bipap and needed a walker/push chair. I pushed him in the chair all over the trails which was no small task. You will be so glad you traveled as...
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    Advice on In-Home Care

    Rose, sorry about your aunt. When we started needing additional caregiving support we contacted our local ALS Association for recommendations on caregivers. I hired a highly recommended woman. She was with us for a year and left when she was pregnant with twins. She referred me to our next...
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    CALS Roll Call Continued

    Congrats Mary, how romantic! It will all work out somehow. V
  6. V

    CALS Roll Call Continued

    Checking in again. I've made a point of trying to keep up with my cycling while caregiving and have tried to do a longer ride on Wednesdays. Today was the perfect day for it; it has cooled down a bit and there's a hint of fall in the air. A welcome relief from the heat. I did 48 today...
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    CALS Roll Call Continued

    Thanks Laurie and Tillie. I just got him a new latex mattress topper. We also have a Roho cushion on the chair. I've been putting a special bedsore cream I bought on the area too. I have tried to put him on his side as well. We'll keep doing what we can for him.
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    CALS Roll Call Continued

    Mary sounds like you had a great visit with your family. I miss my family so much but they are 2000 miles away. Robin sounds like you had a lovely time with your parents at the condo. It's important to do these things for yourself while you can. My PALS has not even wanted to go outside...
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    CALS Roll Call Continued

    Robin, so glad you had a lovely time at the cabin. I cherish those moments when my PALS was better and we could do things. I think we are entering a new phase of this illness now. My PALS is nearly always uncomfortable. He has a dark spot on his sacrum which I am hoping will not turn into a...
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    CALS Roll Call Continued

    Robin, hope everything went OK with your VA visit. I agree about being nervous about COVID. I am wearing a mask everywhere I go again. Can't help but feel angry with people who refuse to get the vaccine and end up in the hospital with COVID endangering health care workers, as one of my PALS'...
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