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    Attendant care program

    Iam a caregiver for my mom who has ALS and I was wondering if anybody is familiar with the attendant care program in Philadelphia. I am trying to get paid by the state for being her caretaker. We had an assessment today for the corporation of aging and some things were a little confusing...
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    Medicare changes

    Just thought I would give a heads up to the PALS out there that have Medicare. I recently had to change where I get my formula from because Medicare did not accept the company I had. Apparently, they are bidding on these companies, and if they don't make the bid, Medicare will not use them...
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    Diaphragm pacer system

    My numerologist has been after to me to get the diaphragm pacer. I am on bipap, but she says they like patients on both yo get the full benefits. I could only find one story on the forum of someone having this done. I'm curious how many pals here have had it done, and what were the results and...
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    Mouth hanging open

    Does anyone use a chin strap for just everyday use. My mouth hangs down so far, the only way I can keep it closed is to pinch my Lips together and that gets very annoying after awhile. My mouth gets so dry thru the day that the roof of my mouth peels. I do use the toothette things to moisten my...
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    Questions

    First, does anybody put anything in their feeding tube beside formula, like puréed things, soda, ice tea. Just what can you put in safely. Also, I have bulbar als and my facial muscles have atrophied,so much that my bottom lip hangs down and open, and because my mouth is always open it is very...
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    Just got bipap

    I just got my bipap machine yesterday. I have bulbar als and mouth does not stay closed unless I try to hold it closed. The RT gave me a full mask that covers nose @ mouth, not very comfortable and of course with the drooling I have to keep putting paper towels under the mask. He also left me...
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    Question for Bulbarians

    I was diagnosed last Jan with bulbar ALS. I was doing pretty good, had tube put in in June. Recently had Botox done for saliva and now I'm having problems sleeping, feel like thick junk stuck in my throat. I toss and turn all night long. Sleep with two pillows almost in a sitting position...
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    Feeling alone and lonely

    I haven't written anything on here for awhile but I do read articles almost everyday. Jan 2013 will be one year that I was diagnosed. As of right now i am still mobile, but I am starting to see some slight weakness in right hand. My biggest problem has and still is the man that I live with. He...
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    Clinical trials

    Just curious how many people on this forum participate in clinical trials. I was asked to do one about high fat feeding for tubes, but I had clogged artery last year cleaned out and take cholesterol medication, they said it wouldn't effect my cholesterol, but I'm a little Leary about doing it...
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    Interesting article

    I just read an article on Facebook from someone who has been doing fundraising, and other things for ALS patients. What I found interesting, he stayed that pharmaceutical companies consider ALS and Orphan Disease and do not invest much money into research because they say the amount of people...
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