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    diagnosed dad/ genetic test

    Lisa sorry to hear that. We just met with him recently for the first time and he really took time with us to go over everything we appreciate it a lot. But of course its never pleasent to hear from Drs there is only so much they can do or anybody can. I bought tudca from nutricost are you...
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    Electric Stimulation/VitalStim

    Hi my dad was using electric stimulation and it seemed to help him maintain swallowing level FOIS 5. However when consulted with 2 speech pathologist in ALS clinic they said there is no research that supports the use of this and they dont do it. I was wondering if anybody has experience using...
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    Starting BiPaP

    Hi my dad got his machine last week and has barely been able to use for 5 minutes straights. do you have any advice on how to get him comfortable with it? how was your experience?
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    Recall of Trilogy 100, Trilogy 200, DreamStation xPAPs

    hi very interesting to know. My dad just got a trilogy 100 rented by insurance will talk with our Dr. about what to do
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    diagnosed dad/ genetic test

    Hi Lisa thank you for reaching out. I forget how small the ALS world is yes we are with Dr Granit are you from Miami? are you participating in any trial? I will ask him about the ataxin2 why I dont seem to find it in the test he recommended genedx for testing. He also mentioned a compound...
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    diagnosed dad/ genetic test

    Hi Nikki thanks for reaching out yes, he is with Dr. Granit who recommended GENEDX however I dont see the ataxin2 in the tests he recommends. the test is the one below and the other its just for C9 GeneDx I would like the ataxin2 but it doesnt appear in the test or maybe I'm mistaken. he...
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    diagnosed dad/ genetic test

    Hi!! My dad was diagnosed with Bulbar ALS 64 years old. This forum kept me busy for hours congratulations on everyone here sorry we all have to join under this circumstances. We have my dad at the University of Miami ALS center. I am inclined on having him do the genetic test since looks...