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  1. H

    The strife is o'er, the battle is won

    My beautiful sister died very unexpectedly of complications of ALS in the middle of the night last night. She had just been in the hospital for replacement of her feeding tube, and the Hospice nurse had examined her a few days ago, and no red flags were raised except for the fact that her blood...
  2. H

    Pain associated with ALS

    My sister has had ALS for two years and has been under hospice care for the last 9 months. She has just recently started experiencing occasional pain (as evidenced by increased respirations - she can't communicate otherwise), for which she is given morphine. This has only happened a few times...
  3. H

    Paying for home health assistance

    I'm just curious as to how others have handled home healthcare in the last stages of ALS. My sister receives Hospice care, but they only come out 3 times a week to bathe her, and her needs continue to increase, so Hospice told my brother-in-law that he must hire home healthcare providers for at...
  4. H

    MOLST forms

    My brother-in-law sent me MOLST and DNR forms to review for my sister before we sign them, and I wonder if anyone has any insights or experience that would be helpful as we go through this process. My sister has ALS and FTD and is in Hospice care, so she is not capable of doing this for...
  5. H

    Weight loss in ALS

    I recently visited my sister, who has had ALS since last December, and I was shocked at the progression over the two-month period since I last saw her. She can no longer walk or talk, her hands are clawed, and her dementia seems to be advancing, but her weight loss seemed especially alarming...
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    Bipap and progression

    I'm curious - does the need for BiPAP indicate progression? My sister is down to less than a hundred pounds now, and her husband told me that she is now on BiPAP at night. Does the fact that she only needs it at night suggest that she might just have sleep apnea? She also recently had a skull...
  7. H

    Repeated falls

    My sister just had her 14th severe fall this weekend, and each time she falls with no warning and lands flat on her face. She has sustained bruises and lacerations previously, but this time she fell hard enough on her temple to make her woozy and disoriented (but not unconscious), so they took...
  8. H

    Can ALS / FTD account for all these changes?

    My sister just left after a long visit, and I find myself just astonished at the changes in her over the last six months. She is much weaker and must use assistive aids to walk in the house or have someone support her if she walks outside, and after a mile or so of walking, foot drop kicks in...
  9. H

    Home healthcare

    Is there anyone from the Boston area who can recommend a home healthcare agency that can help my sister? She was diagnosed with bulbar ALS in December, and I am seeing her for the first time since then this week. I am utterly shocked at the change - she can barely walk and falls frequently...
  10. H

    My sister just lost her job

    My sister was just diagnosed with ALS in December, and a recent evaluation indicated that she is also probably in the early stages of frontotemporal dementia. She has worked in an academic position for some 35 years, but on Friday she was told that she was to begin disability leave immediately...
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