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    In memory of my lovely wife Joni

    Well next week will be the 3 month anniversary of my lovely wife Joni’s passing and ending her journey with ALS. She was not quite 61, and it had been just over 3 years since her symptoms started. She had bulbar onset, so the first symptoms were slurring speech, then followed by difficulty...
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    Brushing and flossing

    I ordered them on Amazon. There’s quite a few different brands available. The ones I used were called Wellgler's Oral Care Swabs - Disposable Mouth Cleaning.
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    Brushing and flossing

    My wife Joni had advanced bulbar ALS = couldn’t swallow, spit or move her tongue. I used the foam lollipops for elder care and Peroxyl mouthwash. Dipped it into a cap full of mouthwash and scrubbed teeth, gums, cheeks, everything. Used a second one dipped in water to rinse and clean. Then just a...
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    IPAD head or eye tracking

    Thank you so much for the quick responses with great info. Laurie I think you may be right in the near term we probably could do fine with a track pad or external switch. I’ll play around some more myself with the accessibility switch control features and see if it could work for her. Jessie...
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    IPAD head or eye tracking

    Hello everyone. I’ve been using this site for quite some time now and have found it wonderfully helpful. I’m the full time caregiver for my wife Joni. Joni has bulbar ALS along with FTD (Frontotemporal Dementia). Her symptoms started summer 2018 and was diagnosed summer 2019. Today she can’t...
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    Feeding tube decision...

    I too have a positive story for getting the PEG. My wife Joni suffers from Bulbar ALS along with frontotemporal dementia. Her symptoms started with slightly slurred speech in early 2018. It progressively got worse, and by spring 2019 developed swallowing difficulty. Formally diagnosed summer...
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