1. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  2. P

    neck pain

    My husband, Frank, has had increasing neck flexion (chin resting on chest) and tilt to the right. His head is now so far forward that the wheelchair headrest supplies no support. He has a neck brace but even this no longer helps. I am applying heat and he is taking extra strength Tylenol with...
  3. swalker

    Time for a new wheelchair

    As many of you know, I have 4 wheelchairs, one of which has been funded by private insurance. The other three we bought used for particular purposes. The wheelchair funded by insurance is a Permobil C500s VS, which was ordered 4 years ago this month and arrived in January of 2015. It has over...
  4. T

    Help! Strength: Conserve or Use It or Lose It?

    My Dad was diagnosed in Dec. 2017, with limb onset, starting with his hands / arms. Yesterday evening, he was unable to stand from his lift chair for the first time. My husband and I drove over and were able to get him out of it with the lift, (after a youtube troubleshooting video. It was...
  5. K

    Similar stories

    Hi everyone, thanks for taking the time to read. I posted a couple weeks ago about my mom who is progressing rapidly. She is continuing to progress after her diagnosis on August 24. Most of her words are not audible now and she is getting weaker with transfers from bed to chair etc and is...
  6. S

    Georgia Tech Research Study - Caregivers of individuals with ALS in Atlanta, GA area?

    Hi, My name is Susan Lee, and I am an occupational therapist and research scientist at the Center for Assistive Technology and Environmental Access (CATEA), at Georgia Tech. I'm involved in a research project that is looking at developing new products and technologies for toilet transfers...
  7. A

    What do you say when you can't say "It's going to be okay,"?

    I have lingered a lot on these pages the past few months, but not really participated. Thank you to all of you for sharing your stories, insights and experiences. It’s been so helpful to me so often, and comforting to know there is such a supportive community of people here who actually know...
  8. M

    My father

    My father passed away last Wednesday surrounded by his family. Despite all the misery that ALS inflicted on his body, his last few days were very peaceful. His condition took a drastic downturn in November, after a couple of cycles on Edaravone. We will never know if this was a cause of his...
  9. Buckhorn

    Very helpful transfer "sling"

    If your PALS is still able to stand, even with great difficulty, this transfer "sling" may help you to maintain your ability to do stand-pivot transfers from bed to w/chair, etc. I have found it amazingly helpful for transfers in and out of the car. Your PALS must still have some leg strength...
  10. L

    Neck support question

    When a PALS needs extra neck support what is available beyond an attachment on the PWC? I mean when they are not in the PWC, like when taking a shower in a shower chair or during transfers with a lift.