call for help

  1. skipper66

    Just saying Hello

    Hi Everyone, Thought I'd stop in to say Hello. For new members I'm Kim (Skipper). I lost my dad November 21, 2015 to limb onset ALS. He lived with it for 3 1/2 years since his diagnosis. Looking back we think he had some symptoms for at least a year before his diagnosis...
  2. S

    What can I do?

    Hello Everyone, Im not sure if this is the correct forum, I hope so. My little sister was diagnosed with ALS almost 3 years ago. It has progressed to the point that she has to use a wheelchair and she keeps falling to her left because her diaphram is so weak. She can barely stand and needs...
  3. D

    Attention California Residents

    To California residents who are on hospice or will need hospice services in the future: Below is the text of a letter I sent to the Director of the California Department of Public Health (CDPH) requesting clarification and enforcement of existing regulations that are being routinely ignored by...
  4. S

    ALS and colds

    I have a cold with nasal congestion and coughing. When is appropriate to call for help?
  5. I

    When to call for help?

    Hi i was diagnosed with PLS last year and have had a steady decline. Last week I was at the ALS clinic in Vancouver for follow up. The neurologist was setting up a Respiratory consult. I have difficulty speaking, have had to modify my food choices to limit choking etc. I woke up this morning...
  6. halfin

    Scary moment with ventilator

    Had a pretty bad scare this morning. I have a trache and use a ventilator at night for sleep apnea, but I don't absolutely need it. I can't move much and I have an alarm button I can push to call for help. Recently we've moved the alarm button to the pillow beside my head, because my neck...
  7. A

    Blocked salivary glands

    Its been some time since I posted. Mum is coping with her peg, but was losing weight, so is now hooked up to it for hours at a time. She had a nasty fall down a 6 metre bank and of course with no voice could not call for help! She refuses to wear her emergency alarm! Mucous is a massive problem...
  8. BarryG

    Wheelchair maneuverability

    Hello friends, well the time has come when I an no longer able to get around inside my house using the walker. I was moving from my bed to my recliner in the living room last night and as I was half way out of my bedroom my knees just let go and I was left hanging onto my walker and half...
  9. A

    vents & humidifiers

    I love the HME. But the humidifier seems to make suctioning more effective. The humidifier and associated condensation is an enormous hassle--yesterday i had to shut off the vent, call for help, and replace the circuit. How do other vent users manage this?
  10. indigosd

    One crossed line

    Excellent soul food! Sharon Salzberg: A Crossed Wire: A Call For Help