Music67
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  • Hi Richard - Hope you enjoy the book. It seems he's hanging in there. He has a facebook page & a website (I only just found them) EdsStory - for both of those. Hope you enjoy the book. Its helped me. I don't read it every day as its a little overwhelming for me so I read it a few days a week.
    Dianne
    thanks for explaining music :) I guess I'm wondering if you are saying that ALS is not terminal for some people, that some people can somehow beat or cure themselves? I'm so glad that yours has been a slower progressing type, it does give you more time to accept and adjust, and in your case even get married!
    Hi music, I didn't want to hijack the thread but had to ask out of curiosity what you meant by "not everyone succumbs to this disease"? Hope you are doing ok. Tillie
    Hi Music67 i'm a musician, are you?

    Maybe we've met. I work at Good Will.

    I'm logging out but let's chat. I've contacted the local ALS support group they meet on Thursday and I'm almost always working. Eric will never go alone. I don't know how to connect him with people who can help him address his fears. He's like a wild cat. Trusts one person only and she (me) only barely.
    Hi...I couldn't reply on thread as it's closed...No change unfortunately i haven't been offered another ivig either...still only lmn signs though..Neuro is sending me for an emg (been over a year since last), to kill some time and see me again after that...Hope all things considered you're ok?
    Hi Vingaling,
    Actually I'm still trying to verify my diagnosis. I'm attempting to have an Ivig treatment that would definitively rule out any "copycat" diseases that I'm still hoping I have such as Multi-focal Motor Neuropathy which has similar symptoms. Maybe i can get back to you after this is confirmed.
    Hello there Music67, I'm very interested in your journey on how you first were diagnosed, what you were feeling at the time, and how you are managing. I want to make a video in hopes of raising awareness. I came across the fact that you are from WA and I was wondering if you would be interested in my little project. Would love you hear back from you. Feel free to contact me via e-mail: [email protected]
    Cheers! -YD
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