Hey John, so nice of you to respond, and I really appreciate the links 🙂
Indeed, my brother is receiving good care at home. And we are extremely thankful (and lucky) that he was able to progress from a vegitative state/pneumonia/respirator/feeding tube -- all the way back to a freely breathing, eating, talking, laughing father and husband again. but I would love to stay current on alternative or experimental therapies aimed to restoring movement. And I would love to hear from others who may have this extreme form of neuropathy. Thanks again for your note!