Recent content by chrisroski

  1. C

    Saliva

    Try mucinex four times a day and papaya enzyme pills under the tongue if you can't swallow, if you can swallow just chew them. Thins the thick stuff out, I got mine at rite aid,
  2. C

    Attendant care program

    Iam a caregiver for my mom who has ALS and I was wondering if anybody is familiar with the attendant care program in Philadelphia. I am trying to get paid by the state for being her caretaker. We had an assessment today for the corporation of aging and some things were a little confusing...
  3. C

    Thanks for the info, appreciate it very much. I see doctor in a few weeks

    Thanks for the info, appreciate it very much. I see doctor in a few weeks
  4. C

    Hi Tom, I was diagnosed in 2011 with bulbar als. I still am mobile, but now having some hand...

    Hi Tom, I was diagnosed in 2011 with bulbar als. I still am mobile, but now having some hand weakness and legs are getting heavy. I cannot speak, use iPad to communicate and also have a PEG. My neuro has been after to me to get the pacer. I am on bipap but finding breathing getting worse. My...
  5. C

    My brother passed away last night

    So sorry for your loss. Prayers to you and your family. God Bleaz
  6. C

    Feeding tube and DPS

    I use bipap, but my neuro encourages patients to get pacer also. I already have a peg tube for a year now, but really don't want more surgery. How uncomfortable is the pacer, is it like shocks going through you? Can you see the wires under your clothes? Just trying to get an idea what this...
  7. C

    Feeding tube and DPS

    Helen how are you making out with the pacer? Thinking of getting one, but not sure if I want wires hanging out of me. Do you find your breathing to be that much better? Do,you also,use bipap?
  8. C

    Your thoughts on how your coping with dying

    I am 66 years old but always felt and looked younger then my age, so I was told. Of course since this disease took over my body I look horrible, face sicken in, all facial muscles have atrophied and bottom lip just hangs there. Not a pretty site, but I am now not so worried about my looks...
  9. C

    Medicare changes

    Just thought I would give a heads up to the PALS out there that have Medicare. I recently had to change where I get my formula from because Medicare did not accept the company I had. Apparently, they are bidding on these companies, and if they don't make the bid, Medicare will not use them...
  10. C

    Hi. Just checking to see if you're ok! Haven't seen you in the forum lately. Hope all is well...

    Hi. Just checking to see if you're ok! Haven't seen you in the forum lately. Hope all is well. Chris
  11. C

    Diaphragm pacer system

    My numerologist has been after to me to get the diaphragm pacer. I am on bipap, but she says they like patients on both yo get the full benefits. I could only find one story on the forum of someone having this done. I'm curious how many pals here have had it done, and what were the results and...
  12. C

    My brave and courageous momma is free.

    So sorry for your loss. Prayers to you and your family. God Bless
  13. C

    Mouth hanging open

    Well I do get Botox for the excessive saliva and drooling, which is helping. I can't chew anything, can't get my mouth to close at all unless I hold it shut. I do have the headmaster collar, which I find does nothing for the chin, and it cost me $120.00, and you can't return it. Guess I'll have...
  14. C

    Mouth hanging open

    Does anyone use a chin strap for just everyday use. My mouth hangs down so far, the only way I can keep it closed is to pinch my Lips together and that gets very annoying after awhile. My mouth gets so dry thru the day that the roof of my mouth peels. I do use the toothette things to moisten my...
  15. C

    Non verbal pet peeve

    I know exactly what you mean, I hav biulbar. People call the house and ask to speak to mr and they are to,d I have als and cannot speak, and it never fails they have no clue what it is, some know if you say Lou Gehrig's, but thr majority of no clue. Some will insist to speak to me cause they...
Top