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    extreme air hunger

    this is happening more frequently and it's terrifying. Yesterday I woke from a nap and suddenly couldn't take in a deep breath. Only point five ml morphine settles me down. I suspect this is part of the end game. I don't really like the way morphine makes me feeling, but wondered if starting...
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    stop the bruises

    one of my caregivers hasn't adjusted to the need to be more gentle. I have bruise all over hands and arms., so yesterday I had notes written on tape all over my body that say be gentle! We had a big laugh but it's working!
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    conflicted, not for newly diagnosed

    sharing my feelings... We have entered the hardest stage. It’s difficult to understand if you haven’t experienced the dying process up close and personal. I want to let go and fly free of all the pain and suffering. I want my family and dear friends to be set free from this nightmare and move...
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    alternating air pressure mattress topper

    I started using this to prevent pressure sores and it works great. The pump went out last night And I woke with excruciating hip and back pain requiring morphine to alleviate pain. did not realise how important that sucker was. Fortunately we had back up pump. I could not be without it!
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    hospice thinks I'm getting better!

    Hahaha. I will be the first cured evidently someone in the office doesn't understand als. The nurse had to come out and convince them I'm still dying. Maybe I'm costing them too much .
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    warning, keep breathing equipment clean!

    I have had two breathing emergencies lately caused by ignorance about how to clean trilogy and my nose pillow masks. we didn't realize there was little foam filter On trilogy that needs cleaned weekly. It became totally clogged after a year. I thought it was just me and breathing decline. the...
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    dry eyes no more!

    I was using some random eye drops but they provided little relief. My eyes were getting difficult to open and I'd wake up with them glued shut! I was certain m my eyelids were failing. But yesterday I started using Refresh preservatives free drops! I'm ecstatic that my eyes don't hurt anymore...
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    drugs or start of ftd

    I take Ativan and mj about every four or five hours during the day and it keeps me relatively pain free and without air hunger. now I notice forgetting things. Like I decide to Google something and by the time I click on Google my mind is totally blank. It happens daily and more frequently...
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    brain donation for research

    my plan was to donate brain and spinal cord for research. However, it seems the Az research facility, barrow neurological, is no longer taking donations directly. does anyone else plan to donate, and if so, where? how?
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    finally a full face mask I like

    I've always preferred the nose pillows, but my poor nostrils are red and sore. All the full masks I've tried are claustrophobic, leak, and I can't use my glasses. The new mask is respironivcs dreamwear full face mask and it is huge improvement for me! I think it's new product.