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  1. E

    What to eat without peg

    Hello everyone, My mom cannot eat purée food anymore. I was wondering is there anything we can put on her tongue that tastes good but dissolves without causing her to choke? She still says no to the peg tube and takes very small amounts of liquid now. She has a desire to taste but just can't...
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    Genervon

    I just received an email that there is going to be a rally for ALS in Washington DC on March 25th at noon to ask FDA to fast track drugs. My family lives very close to DC so was hoping to go.
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    Visiting physicians

    Hello everyone, I was just thinking how helpful it would be if there could be a team of neurologists, respiratory therapists, etc. that can visit the PALS every time it becomes clinic time as it gets harder and harder to move. I know some things are not doable but my mom is so scared to go out...
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    Vote

    Please vote for coach Ernie Kent who is supporting team gleason. I really love what this group is all about. Home | Infiniti Coaches' Charity Challenge
  5. E

    C9 test

    My mom was recommended to do the C9 DNA blood test. Since it was recommended from the neurologist at the clinic, we went ahead and did it because the doctor said that they were working on drugs for this specific mutation leading to ALS. After getting back the negative result, there was nothing...
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    Thank you for responding

    I just wanted to take a moment to thank you for responding to the survey. I know there are so many of these surveys out there and have been done in the past but I am just always hoping that there is something new that hasn't been tapped into yet regarding ALS. Thank you so much. Decoding ALS
  7. E

    Decoding ALS

    December 16, 2013 - a date engraved in my mind because it was the day my mom came back with the diagnosis of Amytrophic Lateral Sclerosis. When that term came out of my aunt’s mouth I froze in disbelief - In my college class it was discussed so briefly but the one thing I remembered was that...
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