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  1. N

    What to do with meds?

    Unfortunately, my husband can no longer use the Rilutek, Lithium and Glycopyrrolate pills that were prescribed for him. We live in the Seattle area and hate like all get out to just throw these in the garbage. Any ideas? Leave message at (425) 248-7185 and I'll also check back for posts to...
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    Husband passed away

    My beloved husband Jim (age 64) passed away on 10/4/09, seventeen months after diagnosis. It drove me mad taking care of him, the relentless escalation of his care needs. Now, it's a very strange world without him in it. He struggled with Bulbar onset and progressive weakness that finallly...
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    Hidden blessings - note from a skeptic

    When I looked at this thread title, I just couldn't imagine what hope there could possibly be. I've been told to "look for the silver lining" - well, hell, it's just not possible for there to be one when the love of your life has bulbar onset ALS. Well, our minister has been counseling...
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    Soc Sec Disability - ALS Presumptive Diagnosis

    I learned recently that ALS has been accepted under "presumptive diagnosis" for approval of SSD within 7 days. When you call the 800 number, or your local office, to apply, you tell them that you have ALS and want it handled as presumptive diagnosis. They are required by law to issue your...
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    M.S., A.L.S. and R.A. A triple play!

    We have been flabbergasted, as have the doctors involved, that my husband has been diagnosed with both M.S. and A.L.S. The MS was diagnosed 9 yrs ago and was confirmed by MRI and spinal fluid electrophoresis for oligoclonal banding...definitive diagnosis, with subsequent follow-ups, MRI...
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    Caregiver frustration, anger, guilt...

    Reader beware - this is blunt. My husband was diagnosed with bulbar onset ALS in May 08. He started slurring his speech in Mar 07 and, after ruling out stroke, doctors figured it was the progression of his Multiple Sclerosis (which he was diagnosed with in 2000). Yes, both M.S. and A.L.S...
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    travel with Cough Assist?

    Has anyone done flights within continental US with a cough assist machine? Ours is the big pale blue one. Bought a rolling duffle bag today but have not yet called the airline about our bringing this. Any suggestions to make it through on long flight with plane change? Any ideas of what to...
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    laryngotracheal separation?

    Hi, Anybody had laryngotracheal separation surgery, or know of anyone? It's been recommended for my husband who has Bulbar Onset ALS; apparently it's a fairly un-common procedure. Thanks, Newbie
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    Tracheotomy - ins and outs

    My husband is facing choices with negative trade offs. Anyone had hands on experience with managing trachs at home? Because of choking all the time, even on his own saliva, and also having laryngeal spasms, Dr.s recommend a trach or laryngotracheal separation. Any experience with either one?
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    Laryngotrachael Separation

    Hi. Anyone experienced with laryngotrachael separation? I'm wondering about the actual maintenance involved after healing and generally about the degree of satisfaction with the procedure...
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