Search results

  1. nona

    sh** is getting real

    I have spent most of the last week saying goodbye in person and in writing. It is surreal to say goodbye and mean it. When I entered hospice at the end of last year, I knew I had some time left to see friends and share experiences. This time, it's for real. This is not a drill. My close college...
  2. nona

    back pad?

    I love my Roho seat cushion on my PWC but the seat back is relatively hard and increasingly rough on my spine. I'm concerned that I am developing the beginning of pressure sores on a few spots. Short of replacing the whole seat back, can anyone recommend a thin gel pad that I can put behind my...
  3. nona

    Resource Brigance Brigade Foundation

    I was not aware of the Brigance Brigade Foundation and their support for CALS in particular until I read this very nice article in the Guardian.
  4. nona

    notifications gone

    Both Windows 10 and Chrome recently updated and now I'm no longer receiving notifications for this forum and the other sites. I assume it's something in Chrome but all of my settings still say Allow. Has this happened to anyone else?
  5. nona

    Hoyer pep talk?

    I am juuuust about at the point of needing to use the hoyer lift. Most of my caregivers can still stand and pivot me but I know my stepmother won't be able to for much longer. I don't know if she'll like the hoyer though. It seems like a lot of steps and finagling for one person to manage alone...
  6. nona


    For the past two months or so (about the same time that I've been on a catheter), I've had occasional severe pain in my right heel in the middle of the night. Last night was excruciating and even hurt to touch my sheet. It felt like my foot was being squeezed by a vice grip that was heated by a...
  7. nona

    Free adaptive dresses and skirts

    I am a five foot tall woman who used to be a size small, but I have outgrown some of my dresses and skirts. All of the dresses have a hole cut for my mic-key button, so they are rather specialized for that use. The skirts have been cut up the back because when I could transfer myself to the...
  8. nona

    Right To Die discussion

    There is an interview in NH tonight with Diane Rehm, who wrote a book about both sides of the Right to Die debate.
  9. nona

    Facebook Tobii Dynavox Community

    For those of you who use a Tobii and are on Facebook, I recommend joining the group called Tobii Dynavox Community. Although some posts relate to its products for other disabilities, I have posted a few questions, made suggestions (and received responses from the Tobii development team), and...
  10. nona

    Trouble taking in food

    I take all of my food through my feeding tube and recently cut back on my calories in the hopes of reducing bloating and reflux. In the morning my caregiver will blend an 11 ounce container of Kate Farms peptide with 12 ounces of Liquid Hope, about 950 calories total plus prune juice and water...