1. A

    Nuedexta denial from Medicare

    I have been taking nuedexta for the last month (samples from my doctor) while we tried to get the prescription filled. Medicare has denied and says we can appeal. Walgreens says our cost would be $1200 a month ! I think it has really helped with swallowing since I’ve gone from 3 nighttime...
  2. J

    Compression boots, Grandma's "infinity scarf," and microwaveable slippers

    Several things we've found helpful, thought I'd post here: 1) "Compression boots" or "sequential leg massager" (Search that term on Amazon and you'll see what I mean). Friends bought these for a Christmas gift, and they've been very helpful. We had seen them and discussed them before -- got a...
  3. J

    Nurown - by 2019?

    it is in trial III phase. does anybody know when (if it pass) it will be available and what will be cost range, since it is not common "drug"? i think i read 2019, but dont remember that trial will end then or... thanks
  4. KatieNBoyd

    Books that helped me

    Hello my friends, I am listing the books that we have. I want them to go to anyone that feels they would like them. No cost I will just mail them to you. Each of these have helped me through all of this. I hope that others might be able to use them too. The Comfort of Home, A complete guide...
  5. 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...
  6. worrieddaughter77

    The cost of ALS in the long term

    Hello, I would like to figure out what is going to be the financial side of my dad's illness. My dad has a very good PPO insurance in Illinois, and so far all of his treatments were covered ( when they were approved by insurance. The insurance has only rejected his spine MRI once). What should...
  7. O

    Genetic Testing

    I've asked this question before but want to see if anyone has new information. When I was going through the diagnostic process, the neuro I was seeing suggested genetic testing through the Athena Lab in the Boston area. (Think this lab has a new name now) The cost was about $35,000, so it was...
  8. G

    Radicava or NurOwn stem cell trial?

    Assuming you had access to both, and cost was not an issue, which would you choose? Radicava or a 50/50 coin flip as a participant in the NurOwn stem cell trial (placebo or actual treatment)? You can't do both. My wife started Radicava last week, but is still haunted by the PR from BrainStorm...
  9. C

    Tobii Eye Tracker question.

    Hi. My mother has ALS. I would guess that within the next year she will completely lose dexterity in her hand/fingers. I am a software developer that recently purchased a Tobii Eye Tracker 4C device and am currently building an extensible application that would allow a user to control an...
  10. DaChief

    Return to Wine Country

    13 years ago we discovered Paso Robles, CA and fell in love with the area. We have returned almost every year to enjoy the wineries. I bought my first "expensive" bottle of wine on that first trip. It was a Barbera and cost $22. ;-). Oh how times and tastes have changed. I spent $150 on a...