Recent content by Roger4143

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    Brian Flies Free

    Thanks you for your sharing your faithful, honest, journey with Brian. You will never know the extent of the blessings you have shared. You are strong and capable. You are ok now and you will be up to meeting every challenge in the days ahead. God bless you, Roger
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    Hold on Tight...

    It’s been two months since my PALS passed from this earth and I can fully concur with the comment that we caregivers are so accustomed to planning, fixing, adjusting, directing that we keep charging ahead after the passing. I was a whirlwind for 45 days- service, burial, notifications, donating...
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    Sharing the road

    I picked the wrong title for my thread. With ALS there really is no “end of the road”. At first I felt so much relief when my PALS passed. I couldn’t make myself miss the trapped person that was my wife. Two weeks later I am sure missing the girl I had before this horrible disease grabbed us...
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    Sharing the road

    My Pals started a downward spiral 30 days ago. Could no longer talk, appetite diminished, slept 14-15 hours at night and often a long nap in the afternoon. I asked twice if she wanted our granddaughters to come decorate for Christmas and never got a response. I had them cone out anyway and she...
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    Is this depression or something else

    My pals began a new behavior last week. She has been dealing with a lot of losses - speech, ability to swallow food, choking on pheglm etc. and started sleeping more and more. Sleeps 11 hours at night. Gets up and tries to drink a little coffee, goes to bathroom then gets back in bed. Family...
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    Splints/braces for hands

    THANKS! All videos were helpful but especially the hand massage. Just what we needed. We haven’t perfected the hand massage technique quite yet, but we nailed the bear hug and kiss😉
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    Splints/braces for hands

    The only reason I am in a restricted forum is ignorance. Lol.
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    Splints/braces for hands

    My PALS’s hands are starting to bend in claw like. Are there any splints or braces that have helped with this condition?
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    New member--brother on vent

    We all have so many questions about this darn disease and how it is affecting our loved ones and us as well. Sometimes I don’t even know what question I have, leave alone the answer. That’s why this forum has been so valuable to me — situations are presented and questions get asked that fill in...
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    Hold on Tight...

    You inspire me, girl. “To know the strength of your anchor, you have to meet the fury of the storm”. Your anchor is sufficient.
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    What to do when PALS is choking?

    My wife has started choking more frequently — usually on liquids, but sometimes on grainy food. I don’t know what to do in theses cases. She continues to cough for a long time. We have used the cough assist with some success, but have not yet used the suction device. She gets a bit panicked and...
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    Progressive use of the Trilogy bi-pap

    What a wealth of information — and yes, Wisdom— in this forum. Thank you! Roger
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    Hand pain

    My PALS has been losing strength in her hand but now experiencing pain in her hand, wrist, upper arm and shoulder. What could be causing this and has anyone found a pain remedy?
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    Progressive use of the Trilogy bi-pap

    So helpful and meaningful coming from a PALS point of view. Thank you. Thank you. How do you accommodate the restrictions of a 24 hour dependence on the Trilogy? What was your “glide path” to getting to the 24 hour dependence - the slope over time of needing more from the Trilogy?
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    Progressive use of the Trilogy bi-pap

    Thanks for the insightful comments. I get the feeling that ALS Clinic personnel avoid the questions we have about what happens at end of life. Maybe not. Maybe it is because they don’t know how an individual will move through phases. My wife and I have both completed Physician Directives etc...
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