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...
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...
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...
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...
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...
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...
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...
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?