patientslikeme

  1. J

    Still here thanks to RCH4

    RCH4 revisited again I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years. The moderator here, Laurie, has locked two previous threads...
  2. Mtzu

    RCH4 Revisited

    Hello everyone, I have not been here on the forum for quite some time. It may have even been a year or so. I am progressing down the ALS black hole. So, like many others, I am looking for alternatives to deal with this crap. I looked at some of the posts on the forum about RCH4. Unfortunately...
  3. J

    Huge help to control excess saliva from bulbar ALS (Glycopyrrolate)

    About two years after receiving his ALS diagnosis, my dad started to experience excessive saliva. He had to clear his throat through coughing because it was difficult for him to spit. After trying Nuedexta, Amitriptyline, and several other prescription drugs, we found Glycopyrrolate to be by...
  4. canmark

    Ethnic background

    As someone who participates in various online ALS forums (ALS forums, PatientsLikeMe, Facebook) it strikes me that most people (judging by profile photos) participating in these forums are Caucasian. When I’ve gone to my ALS clinic (Sunnybrook in Toronto, Canada) and attended a few ALS support...
  5. G

    PatientsLikeMe donates to Walks?!

    I was updating my PLM profile and noticed the link off to the side pointing to this. I've attached the .pdf. Has anyone taken advantage of this?
  6. M

    ALS Association Nite w/Washington Nationals

    MD/DC/VA Chapter had ALS night at the Nationals game last night. Got to be part of the presentation on the field with my kids. See video here: ALS Association Nite with Washington Nationals - YouTube
  7. A

    NP 001 is due to wrap up a trial sometime this month

    Hello everyone, Probably everyone knows that NP 001 is due to wrap up a trial sometime this month. To refresh memories included at the bottom of this note is some anecdotal graphical data prepared by a an expert PALS, and two quotes (edited as appropriate) extracted from months ago e-mail...
  8. N

    Wf10

    I was searching for info about Dexpramipexole. I'm not sure but it seems it is not doing very well as I thought. Altought the number of patients is lower it seems that this is doing better than dex. Has anyone tried it? If so is it the same as sodium chloride? I found that there are people...
  9. J

    Hand/fingers skin question

    My sister, 42, has ALS. She is a quadrapalegic (I can never spell that word right!) and on a home vent. She has nursing care every weekday morning, friends and family the rest of the time (the majority her husband when he is not at work). We all try to do ROM exercises and I do believe her...
  10. Lobster

    Patients Like Me in the news

    Full article here: TR35: Paul Wicks, 30 - Technology Review Excerpt: Each day, thousands of people around the world open an automated e-mail asking, "How do you feel now?" The e-mail's recipients belong to a social network called PatientsLikeMe, and nearly all have been diagnosed with a...
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