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  • Hi Paul; I see that you are on line, but we have heard very little from you. I hope you are doing well. Try and join us on the forum.

    Paulette
    Hi Paul;
    I hope you had a good Christmas inspire of this challenge. You have a great attitude so keep it up. Praying for a Happy New Year with good surprises.
    Paulette
    Hi Paul;
    I just thought I drop you a note and thank you for the insightful comments that you make on this forum. You are making the most of your life, and I wanted you to know that it is noticed. Keep well, and keep it up.
    Paulette
    I have been quietly following you and pearshot's comments. Not the norm and I share your exercise thoughts/actions. I ride an hour a day at 70% - 90% max heart rate with no ill effects. Next is looking into the DP, so any advice would be appreciated. I am not ready to go home and die, the unfortunate guidance I seem to get from the medical community.
    Thanks for the reply. Same thing for my dad. He got a PET scan and no malignancies. Ever consider trying to get 3,4 DAP drug? Modest short term benefit in ALS patients, great benefit for LEMS patients. I asked my dad's neurologist about it, as she he does not have LEMS and she cannot treat him with a drug for LEMS. Wondering if it would be worthwhile to seek another opinion. --Cheers
    Paul,

    I saw a post that you made back in March about elevated P/Q antibodies. Did anything ever come of that. My dad has been diagnosed with ALS and positive for the LEMS P/Q antibodies. We are not sure what to make of it. He is scheduled for a PET scan.

    Did you try any of the LEMS drugs (3,4 DAP), or have a malignancy removed? If so, did either help your symptoms?

    Thanks,

    Matt
    Hi Paul,
    How are you doing? My father who is 79 is going to participate in a clinical trial in a few weeks in Dallas. He can't do alot for himself but his breathing is still good, he can still eat slowly by himself, and his speech is still good. My brother and sister get him out to the movies, out to eat, church, and their kids sporting events. Take care, Kim
    Hi Paul,
    How are things going with you? I'm doing pretty good though I miss my dad. We couldn't find qualified help for him here in our home town. So, he moved to Dallas, Texas and lives in a assistant living type facility near my brother and sister. It is kind of different then others because this one has more complex 24/7 care. He has his own apartment. We are going to see how this works out for him first. Otherwise, my brother is going to renovate his house and have dad move in with him and his family. Take care of yourself, Kim
    think I might have waited to long to start using web flex or digit flex. one month, not pushing real hard no change. may start picking up the pace providing it doesn't make my hands sore the next day
    Thanks for the link. I did go there and registered but they want to much personal info. and I didn't feel comfortable with the info. they were requesting.
    got the yellow flex web, set of 5 digi-flex. how long do you use them each day may have waited to long for left hand. right hand can do red digi flex. recorded grip strength last week, may test every two weeks
    you appear to be using some home equipment that sounds unfamiliar to me. could you provide me a list of specific names of what you are using and where purchased? did you actively exercise before dx?
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