respite

  1. R

    PBP with strange tongue sensation

    Hi all, I've just joined from the UK. Mum was finally diagnosed with bulbar MND this March, having had deteriorating slurred speech since Dec 2013. One 'symptom' she is really struggling with is the sensation of a fine cut or hair being on the top of her tongue. This started suddenly 5 months...
  2. P

    Dad in hospital infection? Breathing a problem

    hello all Coming in as I am frightened tonight. Dad had been chugging along ok for quite awhile (2-3 years) he has bulbar onset but while his speech went long ago he was mostly ok until about 6 months ago his neck muscles weakened and in the last two months there has been a steady decline in...
  3. HeatherFeather

    Turning in bed with both shoulders in pain

    Hey all, haven't been on in awhile - things are very hairy here, these days. Trying my best for my sweet hubby but being called a b**ch by his daughter in front of him and our respite care-giver doesn't help. Oh, my poor hubby now has both shoulders in pain. He cannot put his arms over his...
  4. D

    Help!Such a thing as Sundowners in PALS?

    :sad: I am at a total loss. My PALS does very well during the day, although he can't use arms or hands so I do everything for him, but he's sweet, funny, accepting and polite. At night it's as if I have a different husband. We are NOT getting any sleep and I am at the end of my rope. This has...
  5. dmarkland

    give me wings...

    I wish I could fly away in this very moment to a magical land. One that did require me to take care of a bwk(big wierd kid). When I originally spewed this out to my partner...that I felt like I was caring raising a bwk...it was funny to both him and me. T was diagnosed in 2010, I let this slip...
  6. HeatherFeather

    So discouraged I can't stop crying

    :cry: It took 2 hours this morning to get hubby into wheelchair, he's getting weak and so am I. We have had our respite service Mon Wed and Fri and help the rest of the week. I injured my hip and couldn't walk. Got an injection of cortisone after doctor told me I had bursitis of the hip. Better...
  7. S

    Just checking in...

    Hey ya'll! I hope everyone had a very Merry Christmas and a Happy New Year! We are plugging on along on our end but had a nice holiday break. Dad just celebrated his 81st birthday that we weren't sure he would make it too. We fixed him the dinner of his choice and the hospice ladies hooked him...
  8. D

    Need to wihine and be thankful at the same time

    My PALS, DX'd a year ago is now unable to use hands, or arms and is in a powerchair nearly full-time. So I do his meds, shower, dress, toilet (thank you bidet!) and feed him. His sister, a most loving generous woman is staying nearby in her RV to provide help but I still have difficulty with...
  9. S

    That light at the end of the tunnel is a train!

    This is off the subject of ALS but you folks are so comforting. Well I hate to say things were improving because we all know with this disease that just doesn't happen, but with new benefits approved for dad things are looking up from a help and care side. So that was kind of a bright spot if...
  10. affected

    I've crossed another hurdle

    I just need to rant a teeny bit. Feel free to give up reading it all if I go on too long, sometimes just typing it out helps. My brother has had multiple health issues (including mental health ones) for a long time. He has lived alone, almost as a hermit for many years in a gov. supplied unit...
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