Recent content by Tall John

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    BNG-chinese herb for ALS

    Indestructible Get this movie by Ben Byer, it will answer most of your questions.
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    To those who are trached

    Anyone else ? How about quadbliss or someone else ?
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    Dynavox Eyemax

    Don't know about costs If all you have left is your eyes and can blink, you can do it all
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    To those who are trached

    UCSF tells me the annual cost for care etc. is $200,000. Can some of you give me real numbers ? Send me a private message if you don't want it public.
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    Dynavox Eyemax

    Tried it Tuesday Absolutely awesome
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    clinic yesterday--shocker

    Ahands come in How did PEG appt go ?
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    clinic yesterday--shocker

    Let me know how appt goes One of my caregivers is David Ames' widow (google him), she said pacer did not work for him.
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    clinic yesterday--shocker

    Ahands-one more thing Did ask about pacers : Not approved, some study now in works, she said maybe end of August ? That is how Ben Byer (Indestructible) died, having one put in ?
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    are these EARLY als symptoms

    Nope My wife had tons of weird stuff happen when she was pregnant. Have your baby, then see. Because everything gets swollen, she had CT also.
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    Atrophy progression questions

    Mimi Baclofen or Tizanidine for the cramping
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    clinic yesterday--shocker

    Started in left hand Fasics started May 05, had a "pumped up" sensation in left bicep when trying to button left collar button on button-down shirts as early as Jan 05. Thought fasics were stress, coffee, lack of sleep. Stockbroker at work by 6am. Worked out every day. Early Dec 05 had...
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    clinic yesterday--shocker

    Ahands you and I are spooky similar Just got back from clinic, FVC 47%, had PEG talk. Doc said she won't do trach talk till 30%
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    Hello from new member

    ucsf They are excellent. Dr. Lomen-Hoerth is always reachable and very helpful.
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    permobil configuration?

    I have your c300 Haven't used it a bunch, but you can tilt and raise legs for more clearance. My clinic pushed it, think add-ons are easy-dynavox etc
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    Diagnosed December 30 2008

    My take Do Rilutek. None of us REALLY know, but trails show it works. Forget the Li. Enough here have done it, doesn't work. Do some fun things now. Yeah you'll cry a lot, but it gets much more difficult later. You sound like a slow progressor. Click on blue Tall John to read my old posts.
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