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    How do you balance being mindful of possible onset and keeping anxiety in check?

    Oregon -- you pulled me out of lurking. Similarly, family history of ALS on father's side going back to great-grandfather, some folks go within a couple years and others have slower progression. To your point there's a fine line between body awareness and hypervigilance. I don't see as you...
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    First Timer

    Old Dog has a good perspective here. After fiddling around with local neurologists for quite a while, we got Dad to University of Michigan for a workup -- his initial diagnosis was motor neuron disease that appeared to be PLS. Dad hung onto that diagnosis like a life raft, even as the disease...
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    First Timer

    Another upvote for Bill's advice, above. My father had initial symptoms very much like those you describe, and refusal to modify his routine created both near-term and long-term issues. Near term because of the falling, and long-term because many accommodations work better if they can be...
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    Nikki -- I can't seem to get the messaging system to allow me to reply. Thanks for this...

    Nikki -- I can't seem to get the messaging system to allow me to reply. Thanks for this. Wanted to thank you again for the referral to the MGH program -- I received results of the gene study from Katie Nicholson this past Friday and I am clear on at least the 80% of known genetic causes for...
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    What price do you expect for a cure?

    As re: charges, many hospitals bill insurers the anticipated amount of reimbursement. There isn’t enough detail on the EOB’s to really discern whether or not that’s the case here. But Florida providers have a reputation for being, shall we say, aggressive.
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    ALS Research

    None of us have been tested -- Dad insisted on managing his relationship with UofM without family involvement (after we got him there for a workup). Genetic testing advances continually, and frankly I've put it off waiting for greater discrimination in the results, but I am willing to...
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    ALS Research

    All; First post....my father died three years ago from ALS (U of Michigan diagnosis), his brother died the year prior from ALS (U of Iowa diagnosis), their grandfather died from ALS (Mayo Clinic diagnosis). I haven't kept up as I ought as regards new or emerging therapies, I recall when Dad...
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