1. P

    support for children and grandchildren of PALS

    I was personally very grateful to see a camp offerred to the minor children and grandchildren of PALS. As a CALS I was overwhelmed with gratitude when I saw the notice. Just wonderful, I thought, I wept and sent the notice on to my daughters in law who might want to participate with our...
  2. F

    Pillows or special equipment?

    Hello, I am posting on behalf of my Dad. He was diagnosed in June, rapid progression, and he is already in a nursing home living out his last days. As his muscles have weakened, he is unable to move his neck. Because of that, his head falls down and to the side (the side of his ventilator...
  3. bkite

    Smokers and ventilators

    Yesterday my RT from from the local oxygen and Trilogy supplier, went to exchange a refurbished Trilogy 100 for mine. Mine has over the number of hours before overall. After the " new ventilator" was fastened to the back of my wheelchair and the settings were being input to match mine, I asked...
  4. bkite

    Have ventilator, will travel.

    Three generations of us.
  5. T

    Question about life if a cure is ever found.

    It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...
  6. F

    What to expect during late stages?

    Hello, I made a post a few months ago suspecting my Dad had ALS. Six months ago he was up walking, doing perfectly fine. It has been a steady decline to this point, and we have waded through rehab facilities and hospitals like they were hotels. My Dad was finally transferred to UAB Hospital...
  7. R

    Leg and heel pain all night long

    My wife is on the noninvasive ventilator 12 hours at night and looks forward to that time — except that there are nights when she has leg pain most of the night. These pains are debilitating and don’t respond to Tylenol, Hylands Leg Cramp pills, heat, cold, massage. I reposition her 3-4 times...
  8. ShiftKicker

    billybob's post re: EMST150

    Moved post from Visitor Messages- on behalf of billybob: Hello! At my last visit to the SLP therapist, my MEP average was 58. Discussion followed regarding a PEG and ventilator. After sharing with her I wanted to try everything else to forestall those devices, she gave me a gizmo called...
  9. T

    Familial ALS

    Thank you for adding me/us to the forum. In brief, here is our story: My husband lost his mother to ALS when she was 59 years old. She had one aunt, one uncle, and two first cousins who also passed from ALS. There were a couple other family members who may or may not have had early signs, but...
  10. bkite

    Trail Riding

    On the banks of the mighty Columbia River, there's a park and boat launch named White Bluffs. The usual rocky basalt walls give way to this bright sandy bluff along the river. May, 2015, when I wasn't ventilator dependant and requiring someone to use the companion control on my wheelchair, I...