Recent content by mysisterskeeper

  1. mysisterskeeper

    my sister died on the 5th day of respit...

    my sister died on the 5th day of respit...
  2. mysisterskeeper

    just wanted to update everyone - I am giving up care of my sister and won't be her caregiver...

    just wanted to update everyone - I am giving up care of my sister and won't be her caregiver anymore. Trying to cope with my clinical depression and take care of her is more than I can handle. I have faced a lot of animosity from my family. Some of them are calling the state and making up false...
  3. mysisterskeeper

    update of my sister

    Its amazing how ALS creeps around like its going to take away my sister and changes its mind. I sure thought she was leaving here back in august and september. She is actually doing way better and breathing isn't the big issue anymore. Mucus seems to be the battle now. We have had a couple...
  4. mysisterskeeper

    Tongue problems

    My sister has the same problem on both sides of her tongue as if ear rings ripped from the ears each night she has spasms and her jaws lock causing her to bite her tongue. We are having a hard time finding a dentist who will treat her at this stage because of liability. The recomendation is a...
  5. mysisterskeeper

    We seem to have mellowed out and are just dealing with mucus right now. We have had 2 mucus...

    We seem to have mellowed out and are just dealing with mucus right now. We have had 2 mucus plug situations that we were able to clear with suction and we are trying to fight that but otherwise she is maintaining. Her attitute is fierce tho, and something to be recond with. I told her she...
  6. mysisterskeeper

    Thanks kim. I have truely been trying to get rest, but it seems the hardest thing to do. My...

    Thanks kim. I have truely been trying to get rest, but it seems the hardest thing to do. My blood pressure is so out of wack. My sis is doing ok right now. I guess its better than where she was last time I was in the forums.
  7. mysisterskeeper

    preactive dying

    awww laurel thanks
  8. mysisterskeeper

    preactive dying

    had to go get stronger blood pressure meds. starting to float in the 150's and 160's over 100's. I am training new nurses so I am not getting much sleep
  9. mysisterskeeper

    i never did like roller coasters

    Thank you - and I am not the least offended that you called me her brother, but I am female. I am loving her acceptance of my sexuality, and answering her questions she never got to ask. Its like we are trying to through a life of sister relationship to whatever als hasn't taken from her until...
  10. mysisterskeeper

    i never did like roller coasters

    i am taking my meds now as I read the responses = I think I put it off when I think about it cause I am finally feeling a free moment, or I forget because when I remember I am busy with her. Hmmmm maybe I should leave them in the bathroom. V you will be as strong as you need to be. There is...
  11. mysisterskeeper

    Feeling lost

    I hope that your father has as uneventful a walk with ALS as possible, and of course we all no how that is impossible. It may be that a lot of the tools like wheel chairs will be met with a lot of resistance. You may also find that he choose not to get a feeding tube or vent. You should be...
  12. mysisterskeeper

    i never did like roller coasters

    This has been a whirlwind of sorts. No time for sleep means taunting my epilepsy. Lets not mention my own health. I gotta figure out how to take care of us both. I try to remember my medicine everyday, but I never forget hers. So many false starts (what I call it when I think she is dying...
  13. mysisterskeeper

    just wanted to say hi. my sis has the distal slow progressing als also. she has had it for 12...

    just wanted to say hi. my sis has the distal slow progressing als also. she has had it for 12 years. I think we are rounding the final bend now. I hope that your als is slow enough that you can benefit from new discoveries. Have you heard of the neurx diaphragm stimulator thing? you have...
  14. mysisterskeeper

    Comment by 'mysisterskeeper' in media 'a painting I did'

    thanks - its my fav piece i have ever done
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