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    Simple EMG question

    First, I don't think I have ALS! But, I have an EMG in two weeks. I've had some pain, tingling, and burning sensations in my legs and my doc is just being cautious as my dad passed from ALS. I think it's stress. Anyway, I teach a 2-hour class after the EMG. I remember Dad saying he was...
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    ALS in the New York Times 4/1

    Article: Gravely Ill Butler Alumnus Joins His Team I'm reading the New York Times on my iPhone and posting here the same way. I'm not savvy enough to know how to link via my phone! It's a story about a former college athlete cheering on his alma mater in the Final Four. I hate to see anyone...
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    ALS/Parkinson's

    I've never tread in this area as long as Dad was my focus. Now that he has passed, I and my aunt (Dad's sister) are wondering if there is a connection between ALS and Parkinson's Disease. I've done some Googling, but come up with little. Dad had ALS. His dad (my grandfather) supposedly had...
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    Torturous

    The last week has been hellish and I'm finding it hard to find the strength the deal with Dad's illness. He's in the VA hospital hospice. He has pneumonia and a blood infection. The morphine and Ativan can't make him comfortable. At times, he's on a morphine drip and he's still thrashing and...
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    Too many decisions too fast

    As soon as Dad was diagnosed, Mom told me she couldn't handle all of the medical and financial stuff. I get that. Dad was always the family manager so for her to deal with his illness plus learn all of the new medical "stuff" and take over their finances is overwhelming. So, they moved near me...
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    Good day, bad communication!

    Some days are a real struggle, but today, Dad and I had a great laugh during our struggles, so I thought I'd share. His words are slurred, so at this point, only Mom and I understand him. Unfortunately, even the two of us can't always understand him. He asked me a question I couldn't...
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    confused about need for facility vs. in-home care

    I'm getting mixed messages from people on our "ALS team" and I thought I'd get some opinions from all of you who "get it." My dad is a patient at a VA ALS clinic and I'm generally pretty pleased with the care he's received. The VA social worker is telling my mom that he is eligible for 30 days...
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    Respiratory failure - signs?

    I hesitate to ask this as it seems indelicate in some way, but I'm struggling to understand the signs and symptoms of respiratory failure. Everything I'm told seems so vague - tired, shortness of breath, loss of appetite. It seems ALS alone would cause all of those symptoms. Dad's bulbar...
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    AVAP? BiPap?

    I'm confused and so is the woman I spoke to in pulmonology, I suspect. I'm told that my dad isn't getting a Bipap. He's getting an Avap. I've done a bit of research and it seems that an Avap IS a Bipap. Is anyone familiar with an Avap? I want to be sure it's bi-directional and that he's not...
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    The insight of a 5-year-old

    My son sees his grandpa quite frequently and has witnessed the changes in his health. Sunday, I talked to him about Grandpa's new feeding tube and the possibility of a "computer that talks for him." On the subject of a Dynavox, my brilliant son replied, "Don't worry, Mommy. It's still Grandpa...
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