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  • Users: KW1234
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  1. K

    Slings for hoyer's and ceiling lifts

    Yay...I received my new sling this week from the Osprey sling company in England. It fits better and is much more comfortable. I was afraid my arm was going to break with the other one. The new one was 1/3 the cost of the old one. They don't ship to the US but if you have a friend in...
  2. K

    Chunky Monkey

    I have started coughing up chunky stuff. I know I have scar tissue in my lungs from two bad bouts of pneumonia but I don't think that is what it is. I think it is clumps of semi dry mucus. Has anyone else seen this. It is pretty scary. Normally I cough up white slimy mucus but the...
  3. K

    Is this the end?

    Waking with headaches several times at night and during the day. RT says AVAP can not be tuned more. Was cold all the time now having hot spells. Skin has become blotchy. Can't stay awake for 30 minutes ....
  4. K

    Eyelids

    My muscles supporting my eyelids are going, I now have my eyes closed most of the time or half closed. I can still use my right arm a little and have to manually open my eyes in the morning. My tobi has become impossible to use. Any suggestions on communicating. I can scribble a little on...
  5. K

    Sitting upright

    My core and back muscles are very weak and I flop to the side or forward . Anyone have suggestions? Also my spine is protuding which makes the wheelchair uncomfortable, looking fof suggestions here as well .
  6. K

    Dental hygiene

    I am at wits end. I can no longer brush my teeth or rinse out my mouth. I can munch ice and suction out the residual toothpaste. I am not eating anything bu mouth but can't stand the taste of saliva. What do PALS do?
  7. K

    Breathing challenge

    Starting to have episodes where I want to inhale but the muscles aren't responding. I still have about 40 percent lung capacity and use the AVAP all night and several hours during the day but even when it tries to force a breath, my lungs don't always respond. I suspect the end draws near.
  8. K

    Kangaroo Pump

    Having trouble with persistent nausea since my radicava nightmare. My doctor and dietician have me started on a slow drip feed with a kangaroo pump in an effort to get more calories in me. I struggle to break 1000 a day. I am trying to figure out how to sleep with this and not pull the tube...
  9. K

    Eyelids

    My muscles controlling my eyelids are getting weaker and I am struggling to keep my eyes open. Does anyone have suggestions?
  10. K

    Anaesthesia for surgery and Colostomy

    I have a fissure from a bad bout of constipation that isn't healing and I am now scheduled for surgery. The surgeon wants to use general anesthesia. Have any fellow PALS had any experience with general anesthesia and suggestions? The surgeon also suggested that I might want to do a colostomy...
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