Search results

  1. wishmobbing

    International Division of Grief

    The good memories of my boyfriend are something I cherish, his weaknesses and quirks are something to chuckle about with friends. I'm a happy and pretty much trigger-free widow. Except when one of our PALS here takes leave. That always pulls the rug from under me and I howl like a hound. I...
  2. wishmobbing

    We'll meet at the bar

    Thought about posting this in the religious section but I feel more comfortable doing my ruminations in a loud bar with a friend next to and a drink in front of me. Even through the passing of my boyfriend my world view is unshook happy nihilism. In my opinion we only have the one life and...
  3. wishmobbing

    Wishmobbing's boyfriend slipped away

    Dear forum friends, after a mostly good year, a couple of harder months and a final night with lots of music and holding hands my PALS peacefully fell asleep and never woke up again. In the 13 month after diagnosis he lost a lot, his work (never missed), his ability to move (accepted with...
  4. wishmobbing

    Antifog for full-face mask?

    My PALS a mask that just covers nose and mouth will give him a pressure sore on the bridge of his nose if he wears it too long. So he wears a full-face mask almost all the time. That only works without his glasses. He has a humidifier on his bipap or his mouth would become a near desert. So...
  5. wishmobbing

    Tantrum of the day (rated R, contains strong language)

    Under the shower with my ass wedged in the corner and my PALS trapped behind his mask, hitting his feet on the walls and sliding in the ****ing showerchair. These monstrosities are just as undignified to handle as to sit in them. :evil: I'll give it a 5 on the Richter scale Soooooooooo...
  6. wishmobbing

    ipad attenant call button

    I'm not a mac person. That'll have do for my excuse why I can't find a simple app for my PALS with which he can call me or a nurse in the next room when he needs something. He can type or use default sentences, that takes a couple clicks more than necessary, I think. Just something simple that...
  7. wishmobbing

    Switch control communication software

    Quite honestly, I'm trying for days now to make proper use of the search function here but I don't find the concentration to follow through with it. My PALS speech is going quickly and things with health insurance are going slow. Time for improv. We have an old iPad and found out roughly how to...
  8. wishmobbing

    The doc and the plumber

    This one's for Pete: In a doctor's house a water pipe leaks and is quickly beginning to flood the basement. Because it's the weekend the paniked doctor calls one of his patients who is a plumber and asks him to come help him. The plumber is not happy about being disturbed on his day off, so the...
  9. wishmobbing

    C9orf72 and Riluzol

    My boyfriend's mutation has been identified as C9orf72, He's on Rilutek but progression is quick. Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS. There it said, that Riluzol doesn't seem to help the familial kinds of...
  10. wishmobbing

    Forum refugee from Germany

    Hi folks! I have a good feeling about finding this forum! I already found a LOT of helpful information in the german ALS forum, but there's not a lot of people around "living" in the forum, spending time with each other. And that's what I could use, a community where everybody know's what a bad...
Top