1. NvrGiveUp

    back from a long absence

    Hi everyone. Sorry I've been away so long. Things have been pretty tough with T. Her breathing is shallow and the doctor wanted her to go on a trach/vent ASAP. She left for Brazil to see her family and friends on Christmas day (I went a couple weeks ago and just got home today) and she was...
  2. Whitsend

    Coping Techniques

    Not emotional. Physical. Does anyone have as much trouble as I do getting into bed and turning over in bed? It is such a struggle. Scrunch, scrunch, wiggle, wiggle, pull, push, scrunch some more. And as much as I love him, having hubby in bed just adds to the struggle. Has anyone figured...
  3. L

    Neck Brace--Home made collar

    For anyone who wants to construct a home made collar. Cervical collar (There should be 5 photos with these instructions) What you need for a medium to small collar: 24” by 4” of 1 ½ ” or 1 ¾ “ thick foam 4” by 4” piece of dense (firm) foam (Density of 'M70') About 6” of 2” wide webbing...
  4. R

    rotation beds

    I am now about two years with ALS. Arms pretty much gone, some movement in the legs. I am now sleeping on a gel mattress. Does anyone have any experience with the lateral rotation mattress? any suggestions would be appreciated. Jack
  5. G

    bed turner

    This is a quote from another site. Excerpt: "one of the problems i experienced was having discomfort during the night and needing to be turned. this led to another problem, the lack of quality sleep for my wife who needed to turn me every...
  6. C

    Questions from a CNA - Bedding for ALS Patients (sores developing)

    I'm a CNA providing 9pm to 7am respite care for a 50yr old female diagnosed 2 1/2 years ago. She wears a bi-pap 24-7 and weighs perhaps 70 pounds. She does have care 24-7 from various health organizations, and from her mother and sister. She can only move her neck from side to side on a pillow...
  7. D

    Mattress overlays

    I live in Edmonds, Washington and I have had ALS for over > three years, having been diagnosed in November of 2002. At this point > in my progression (I have limb-onset) I have very little movement of > my arms and legs. Since I can't move my legs, my hips ache after > about two to three hours...