Recent content by Janis J

  1. Janis J

    CALS Roll Call Continued

    It's been four weeks since I last checked in here and just over two weeks since Douglas died. I'm doing remarkably well, all things considered. Douglas and I had a good chat the day he died and told each other how much we loved each other; it's such a relief that we got to do that. I've...
  2. Janis J

    Douglas has died

    Douglas passed away on Tuesday June 7, 2016 after falling and not being able to get up or to breath. I was running between the kitchen and the grill in the back yard and didn't find him until he was already gone. Friends started coming by immediately as family trickled in from all over the...
  3. canuggling.jpg

    canuggling.jpg

  4. Janis J

    CALS Roll Call Continued

    Deb, it was in a thread called "Ugly cry is creeping" but I think it deserves a new thread.
  5. Janis J

    Eye gaze systems and applications

    Azgirl, my husband recently got a Tobii Dynavox I-12+ running Communicator 5 with Sono Key on Windows 10. The ACC specialist who is helping him learn to use it was here yesterday and I showed her your comments. She agreed with most of your assessments but had comments about the last two...
  6. Janis J

    second BiPAP mask

    My husband has started using BiPAP during the day. His full-face mask works well at night but we want a smaller mask to use when he's awake. A rep at the company that supplies his BiPAP equipment claims that Medicare will only cover one type of mask, and that their system will only handle one...
  7. Janis J

    What help do you as Caregivers think would be helpful?

    As caregiving tasks are added you can help by learning to do range of motion (ROM) exercises, tube feedings, or cleaning equipment. One of my daughters comes to visit for a few days every month or so and it gives me a nice break when she takes over some of those things while she's here.
  8. Janis J

    conservation of energy: Spoon Theory

    There have been several comments lately about new PALS getting tired easily and CALS having a hard time convincing them to conserve energy. Shortly after my husband was diagnosed a relative told him about spoon theory and it changed his outlook. A search shows this has shown up in the forum...
  9. Janis J

    CALS Roll Call Continued

    Hoosier, the roll call is a place for CALS (caregivers of people with ALS; the word is both singular and plural) to check in weekly, or just once in a while, to let others here know what's new with them: good, bad, weird, whatever. Bigger questions, topics for discussion, or serious rants can...
  10. Janis J

    Chin Strap

    My husband uses the linked chin strap as well, under an Amara View face mask. We've been told that that chin strap has been discontinued but there's another one made by CareFusion that's just like it. Everyone's head is different, and Douglas needed to try a couple of different chin straps...
  11. Janis J

    Ugly cry is creeping

    I'll have to try oiling myself down and then having a shower. I've always loved the therapeutic power of long hot baths, but our bathtub was removed to make way for the roll-in shower.
  12. Janis J

    CALS Roll Call Continued

    I'm doing much better than I was last Wednesday but it's still been a week full of tears and frustration. I started seeing Douglas's longtime counselor, who is planning to move out of state in a couple of months, and have an appointment for a counselor at a clinic that specializes in people with...
  13. Janis J

    Pub is back in business....

    Cheers! I'm having inexpensive but yummy Dry Reisling with crab cakes (packaged) and a Caesar salad (romaine from a bag, dressing from a jar, and shredded cheese from a plastic tub). Eating alone is still weird, but right now I feel like I'm doing it with buddies. I recently bought some tomato...
  14. Janis J

    CALS Roll Call Continued

    Douglas's Tobii Dynavox came, but the specialist who was going to set it up for him last week had to postpone her visit, and now it looks as if maybe she can't come for another month. Meanwhile it's very difficult for me to understand him and we're having lots of problems with the loaner device...
  15. Janis J

    My wife has been diagnosed with MND-ALS + FTD - Part 3

    Dave, I hope you can spend a significant amount of time during the next two weeks walking in the woods or staring at the sea to help clear your mind. Decisions will be easier (although still not easy) after that. You're doing the right thing and I'll be among the many people who are thinking of...
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