1. T

    Shoulder blade & lower back pain

    Does anyone know how to alleviate shoulder blade & lower back pain? It happens at night when I go to sleep. I'm using pressure alternating air mattress . It doesn't help much. Lateral rotating bed is too expensive and it's not covered by Medicare.
  2. R

    Does Medicare or anyone reimburse

    Does Medicare or anyone reimburse for personal health workers to help bathe and dress?
  3. A

    Seeking communication support for special friend

    A special friend (David) of mine and my husbands is a 17-year survivor of ALS. David currently has a Tobii Dynavox I-15 (with eye gaze interaction – AAC device) speech generating device. His AAC device is calibrated to his eyes. David was able to communicate (with his wife and family, also with...
  4. Chincoteaguer

    Medicare says shower is a luxury.

    Just learned from our ALS clinic that a shower wheel chair is not covered by Medicare. My supplemental insurance only covers items that Medicare covers. Rule says shower chair is a luxury item thus not covered. Both Medicaid and many private insurance companies cover the shower chair...
  5. T

    No Hospice

    So we are being told that since my sister is on a bipap machine that medicare will not pay for hospice. Some say that they will take her but eventually she will have to come off of it since its "prolonging her life". My question is for the CALS that have gotten hospice. What all do they do for...
  6. O

    What do I need to know to prepare for the cough assist machine and the trilogy?

    At Clinic today, I was told it is time for the cough assist machine and the trilogy machine. What should I expect and be prepared to do? I guess this is my first "big step" into the abyss and I am overwhelmed. Does anyone know if medicare advantage plans cover this? Will my husband and I be...
  7. 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...
  8. 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! 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...
  9. K

    Extending Hospital Stay

    Hi guys, I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks. After the trach was done, Kaiser sent him to a subacute facility. However, the...
  10. N

    Insurance for Spouse

    Good Morning, Giving this a try. A little background for my dad: He was diagnosed early months of 2017, receives Social Security Disability. Medicare A and B, recently enrolled into Supplemental Insurance as well. My mother depended completely on his income when he did work. My dad can no...