Recent content by Jeffreyp

  1. J

    Is there any ointment that will help with nerves

    My PALS has tremendous neck pain and home health nurse suggested we try a cream that hospice uses. She suggested i call pharmacy that does compounding. I called and he had a cream so had our doctor order it. Expensive and not covered by insurance but it works. So call pharmacy that does...
  2. J

    Cancer on top of ALS

    As for tube formulas, my wife use Boost Very High Calorie--not sold in store but can get from nestle and medicare pays. it is 530 calories in 8oz box. best to thin it a little with water. Also uses Liquid Hope-again have to get from web. Both need thinned out with water.
  3. J

    Stressed Out

    Thanks all for the support. She is comfortable on love seat but it takes arranging 5 pillows and 2 or 3 hand towels to get her there. I will try the chin strap with nasal pillows on bipap.
  4. J

    Suction machine is weak?

    We had a portable Devilbis suction machine and liek you it did not work well for thick stuff. Our respiratory company then brought a non-portable Medline HSC 7000 and it does a much better job.
  5. J

    Stressed Out

    I tell her I need a break all the time and her response is she does not get a break. Her father passed at age 70 and her mom was caretaker so she thinks no big deal for me. Well her kids tall me her father was essentially self independent up to end just had blood transfusions 3 times per week...
  6. J

    Stressed Out

    She has BiPap but the first time she ever put on she delared she could not sleep with it so she has never tried. Of course every health care person says she needs to use it. She is just now starting to use it some during the day. We have tried 4 different type of mask and nasal pillows.
  7. J

    Stressed Out

    Thanks for the replies. Good to know others out there. It is just so hard when every single suggestion i make to help her seems to be rejected because not her way.
  8. J

    Stressed Out

    Everything is by PEG tube. We have tried humidifier in room and really makes no difference. She goes to PT once a week where they do passive range of motion on arms to reduce pain. I do same exercises on limited basis for her at home. No one has suggested neck exercises. No hospital bed but it...
  9. J

    Stressed Out

    No dementia. A lot of stubbornness. She can do Sunday NY Times crossword. We can through the bed process 3-5 times a night because she has to get up to suction.
  10. J

    Stressed Out

    My PALS is bulbar---no speech at all, no use of right arm, limited of left arm and can walk with some assistance. I have hit a wall with what it takes to get her in bed and comfortable sitting. Long before her ALS she had hard time getting comfortable. She spends a lot of time on love seat...
  11. J

    Making phone calls

    My wife uses iPad with text to speech app--then makes calls with phine on speaker--- the other party has to be patient and really pay attention to get everything she says. But it can be done.
  12. J

    tablets or devices with more volume needed

    you can get external wireless speakers of all shape and sizes that connect to your device through bluetooth. We have a speaker about the size of a baseball--works pretty well.
  13. J

    In the final days....

    sounds like he may be hallucinating---my dad was like this on morphine. he just could not tolerate that drug and once on something else he was back to normal.
  14. J


    Of course today you have to think about your digital property---email, texts and pictures on phone, facebook and other on line accounts such as amazon. You may not want entire family to go back and read all your old emails. Be sure you leave a list of passwords for someone to close down that stuff.
  15. J

    Diahrrea with peg formulas.

    My Pals had diarrhea with PEG --tried 6 different formulas. Finally starting using Very High Calorie Boost(had to get from internet, not in stores) ---dilutes it with water and takes immodium with am feeding. It works for her.