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  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. J

    My symptoms, my fears

    Hello, first of all thank you for letting me join this forum. I’ve been dealing with some symptoms in the last month and I wanted to ask your opinnion about it. I’m 40. For some time I had some numbness in my hands, legs and upper lip so I had an appointment with neuro to see if something...
  3. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  4. T

    Rectal burning sensation (sorry to be so blunt)

    Does anyone have trouble with rectal burning made worse when sitting in the power chair? Multiple cushion combinations have been tried and every over the counter remedy has been tried. Prescription level lidocaine and pain relievers including Norco. I'm currently on gabapentin and Lyrica in...
  5. T

    tricks against fears and anxiety

    Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally. The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my...
  6. S

    My Dad was diagnosed a year ago and I’m looking for some support

    Hello all, My father was first diagnosed with lower motor neuron ALS roughly one year ago. He got the official diagnosis in September 2018 when they were finally certain that it was not CIDP. Within the week my Dad was diagnosed, I accepted my first job out of graduate school and moved 2 and a...
  7. A

    Worried about these symptoms

    Hi! Male 44 years old here. ’m sorry to be posting but I finally decided to seek your advice. My wife and I are nervous and some of your thoughts might really help us. I’m having some symptoms that are worrying me. Here they are in brief: Dec 22: Odd headache in left temple— three pulses, long...
  8. Jamesgol

    How much Trilogy?

    I've had a Trilogy 100 for a month, even though I have no problems breathing. When they tested me a month ago, I was at 90 and 64. But they kept having me blow over and over until I finally blew one under 50, which qualified me for the Trilogy. The RT came to my home and setup the Trilogy. She...
  9. D

    Medication for skin issue?

    Roughness and small scab on behind. I assume that this is because I sit 16 to 20 hours a day.. Any suggestions for a medication that might help?
  10. T

    Radiation therapy for secretion management

    Was hoping for feedback from this useful group on their experience with radiation therapy for secretion management. To date, we have been managing my PALS secretions with a combination of scopolamine patches, glyco subQ injections (pills were not effective and he now takes injections every 4...
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