1. Tomswife

    Caregivers who come and go

    We have been using a local agency since January 2023. Throughout January I increased the hours. We started with 3 days per week. 4 hours per day. Then 5 days. Then 7 days. Then I added overnights. Then I added more hours per day. I was tired. I needed help. And yet, I felt that I was...
  2. ShiftKicker

    For Canadians interested in Radicava

    The CADTH (independent advisory body Health Canada consulted with) has published its recommendations on Edaravone use in Canada based on their research and consultations with ALS patients, caregivers and other health professionals. From ALS Canada The report can be found here...
  3. D

    trach questions

    I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members...
  4. E

    Won't go to the Hospital Bed!

    Cals here. Husband dx in 2013. For the last two years, he has lived in a recliner (sleeping there). Of course, goes to the power chair when need be. But, now he has zero neck muscles and needs suctioning several times a day. We have a wonderful hospital bed with all the bells and whistles...
  5. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  6. Nikki J

    Webinar on trach decision

    This is now archived on the NEALS website as are all the NEALS webinars. Worth browsing if you have not yet done so. Search NEALS ALS Consortium
  7. E

    Doing chores

    Hello, and Merry Christmas! I am writing to ask you a question about the daily chores. My father has retired about a year ago and has been suffering from PLS for 3 years. Since then, he spends most mornings doing chores: aside from showering himself and getting dressed, he cooks for the family...
  8. KimT

    Rosemarie Farrell

    Mori Farrell, a friend from my local support group, gained her wings yesterday afternoon. She was my first PALS friend after my diagnosis. She lived on the beach in Flagler. We had lunches together, visited each other, and kept in touch by e-mail. She was a lawyer and so brave. Her battle...
  9. Nikki J

    Webinar about VA and ALS
  10. Nuts

    Never thought I'd be here...

    FTD was my greatest fear early on. Then I thought we'd escaped it. Now...not so sure. Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live. Im not taking the mean remarks...