Ius2bSJ

Ius2bSJ

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  • BarryG
    Hi Sharon, how are you? I was talking to my good friend Kari a few days ago and she suggested that I post you a message to see how you are doing. I know that you are anxious about your husband's upcoming peg placement and I want to tell you that I have had my tube for about a year and a half and I have had no problems at all. it is such an easy way to get food and drink without choking Take care,
    Barry
    joelc
    I would leave the bipap pugged in at night and recharge during the day. That way you will never have to worry about the power and can get a good nights sleep. I am glad he is getting a PEG early, that is the best way! Mine was easy and I pray his will be also.

    God Bless! Joel
    sadiemae
    http://clinicaltrials.gov/ct2/show/study/NCT00349622?term=amyotrophic+Lateral+Sclerosis&recr=Open&state1=NA:US:AZ&rank=1&show_locs=Y#locn here is the info on the Ceftriaxone. You have to go in once a month after the initial first month. In the first month you have to make about 7 visits in three weeks. You are asked to commit for a year, and two thirds get the real drug, one third the placebo. We decided against it, as the travel for us is too much. The link didn't work, just google clinical trials.gov, hit ALS, Then Ceftriaxone.
    Blubear
    I can help you with your avatar - um maybe something from Italy? Or a pic of thumper since that is what dad calls you?
    Blubear
    If that link doesnt work, just go under the drug trials secion and look at the ceftriaxone trial started by serenade. Look, if it slows the progression that much, he should be on it! Hugs!!!
    Blubear
    Hi Mom, now first of all, perhaps I should befriend you, ya think!!! Just remember when you are doing visitor messages to go to your page (here) and then to respond to the message hit THEIR name and it will take you to their page. Then post the response from there. Now as far as responding on the thread you started, you respond to what people say "on the thread" by hitting quick reply and then you can respond to everyone in one response. You will find great support and a tight family here. I am so glad you are finally reaching out!! Love you, Kari
    sadiemae
    Hi Sharon!! Back from San Fran and the research trial. Went good, go back 2 more times then it's done. Felt good to actually do something that might help!! HUGS Lori
    joelc
    Hi Saron, welcome to our forum family. I have done a lot of corresponding with Kari so feel I already know you. She got the information for glutathione from me. If you need anything please let me know. God Bless! Joel
    sadiemae
    Sharon, I just checked your page, and you wrote your message to me on your page not mine. To write on mine, just click on my name. I still do this on occasion!!! HUGS Lori
    Ius2bSJ
    Thanks for the tips. I'll try to figure out how to use them. You're a good helper so it shouldn't be too hard.
    Sharon
    sadiemae
    Also, when I sign on I like to read all the new posts, so at the top in the dark blue box, where it says User CP Blogs, FAQ, Community ect I hit New posts to read all the new posts. If you hit user CP, you can see all the threads you have responded to.
    sadiemae
    If they have a Question mark, its because they havent added a picture(avatar) to their account. You show up as a ? mark too.And Yes we are now official friends. Actually you are navigating the site pretty well. You have started a new thread, written on someones visitor page, accepted a friend request, and reposted on your wall. I think you are an expert already!
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