palliative care

  1. Sequoia

    What is true ALS advocacy?

    We want today’s ALS patients to have a shot at being the first ever to overcome their disease. That’s a lofty goal for a population that, since its first identification in 1869, has never once had a treatment known to be effective at stopping or even significantly slowing the disease’s rapid...
    • Sequoia
    • Thread
    • advocacy als als research burning cure drugs fda life palliative care problems research therapy treatment treatments
    • Replies: 14
    • Forum: People with ALS (PALS)
  2. momap53

    Advance Directives - Five Wishes Directive

    Becky had asked me about the advance directive called Five Wishes that I used to outline how I want to be treated when I'm nearing the end of life so I thought that others might find this information helpful. Here in the US, each state has different guidelines for this. More information can be...
  3. M

    ALS home care, why is nothing easy?

    After much thought and tears it has been decided that my mom needs to be in a care home to recieve the care she needs, it was mainly her decision and we all would have supported her no matter what she chose. My stepdad being her main caregiver is having a very hard time with it, but they do own...
  4. Georgia Peach

    One Year Ago Today

    One year ago today, my husband received his ALS diagnosis. His neurologist stated that there was an 80% chance that it was motor neuron disease and the Emory ALS Clinic confirmed it in April. We lived in our paid off house that we fully expected that we would stay in until our deaths but he...
    • Georgia Peach
    • Thread
    • als back bed breathing choking clinic coughing diagnosis disability health home health care life motor neuron disease neurologist palliative care pneumonia suction
    • Replies: 8
    • Forum: Current caregivers
  5. M

    Bittersweet?

    Another bridge to cross, my moms palliative care worker has found her a permanent bed in a care home. Although I know this needs to happen for so many reasons it is still a hard pill to swallow. I never thought my mom, my once strong and active mom, would be placed in a care home at the age of...
  6. M

    Reeling

    My mom is now into 16 months since diagnosis, we cheer the little stuff, she is still eatting, chewing and swallowing, and breathing on her own and we mourn the other losses, she has loss use of her arms but can move a few fingers on one hand. She is totally dependant on my step dad for...
  7. C

    How much morphine?

    Hi, I know that the answer is usually enough to make you comfortable but I wonder how we compare? Last year the nurse said Shane was so ill he only had weeks to live and we were using morphine every 4 hours (he refused syringe driver). Soon we were up to 5 mils a time through the intima ( so...
  8. B

    Opting out of pulmonary assistance . . .

    Is it possible to refuse any pulmonary assistance? How would the illness play out? What is palliative care? Can a comma be induced? Thank you in advance. Sorry for all of us.
  9. T

    When should he go to hospice?

    Hi everyone, Longtime lurker, first time poster :-) My father was diagnosed with motor neuron disease in 2009. He's now 35, has very limited control of his body including his neck. He has problems with breathing [he's forced vital capacity is under 50%]. He can still eat and talk though. He...
  10. rmstudier

    Things I've Learned

    Without ALS I'd likely never have learned: - Just about anyone can safely park in a handicap space - Doctor and dentist offices aren't ready for nonambulatory people - How expensive wheelchair vans are - The obscene profit margins on durable medical equipment - How to eat with my left hand -...
    • rmstudier
    • Thread
    • als catheter dentist lift medical palliative care running vans wheelchair wheelchair vans
    • Replies: 60
    • Forum: People with ALS (PALS)
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