website

  1. K

    Research Study

    I lost my Dad, Jeff Long (who was active on this site), in October of 2015 to ALS. I am currently looking at the Infant Feeding Characteristics of Patients with ALS with the University of North Carolina at Chapel Hill. The information is listed on the National ALS Registry website...
  2. J

    Sacred about symptoms and hoping to get feedback

    Hi everyone, I'm a new member. This forum has been very helpful for me in recent weeks, and I was hoping to get some insight on my symptoms. I apologize in advance for the long explanation: My symptoms started in early November 2017 when I noticed my upper lip began to twitch. It also felt...
  3. G

    Website to Find VA Approved Builders

    va. Gov site...
  4. R

    If you have a passion for ALS advocacy & good public policies, pls join us

    Please join us for something new Feb 13-14, 2018! https://www.morethanourstories.org Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the...
  5. J

    Another "Bulbar ALS?" Thread

    Dear all, Thanks to a wonderfully useful website to those who are affected by this horrendous disease. I do wonder if anyone who has been diagnosed with ALS has had the following course of events which I'm currently going through. My current situation is as follows: I am a 29 year old male who...
  6. O

    Advice on ALS Clinic Selection?

    Hello. My father was diagnosed w/ALS earlier this month at West Virginia University (WVU). The diagnosis and recommendation to begin Radicava was so swift from WVU that I suggested he get a 2nd opinion. We had the 2nd opinion at the Cleveland Clinic last week, and they want to re-run the EMG and...
  7. CrewsCT

    Nike FlyEase Shoes

    Check out these Nike shoes. They slip on like a clog, then zip around the heel and close with Velcro. Same prices as regular Nike shoes, but much better looking than shoes sold by medical supply stores. You can buy them on Nike website.
  8. Buckhorn

    ALSA bag or backpack?

    Does anyone know where I can get a bag or backpack with "ALSA" or "ALS" on it? I've done an on-line search and can't find one. I do not see them on the ALSA website. Someone here (Becky??) mentioned she puts one on her husband's chair (because people are curious & the Trilogy is...
  9. G

    Tobii dynavox i-15 aac device

    Tobii Dynavox I-15+ is large screen, eye controlled speech generating device. It’s rugged design, unparalleled power management, support for touch and gaze input are just a few of the things that make the I-15+ ideal for those who rely on augmentative and alternative communication (AAC) for...
  10. H

    Slightly worried, Painful

    Good evening, afternoon, good morning, I have for some reason had myself drawn to this website. Basically for a while now my shoulder and my back underneath my shoulder blades the muscle that is around there is becoming increasingly painful with the simplest of tasks it feels like I have pulled...
Top