Recent content by gardenvessel

  1. gardenvessel

    How do you release your alertness?

    For those of you who are sole caregivers and you are in a moment of rest between demands--whether it's a scheduled break or just stealing a minute--what do you do to really relax in that moment? How do you release the physical and mental grip of always being on alert and ready for the next...
  2. gardenvessel

    Hi Kate, You left a comment recently on Pinky's post that mentioned you were part of a CALS...

    Hi Kate, You left a comment recently on Pinky's post that mentioned you were part of a CALS video support group. I've been looking for a support group that meets remotely via skype/zoom/etc. Would you be able to share info about your group with me? My membership here is still too new to be able...
  3. gardenvessel

    Support/therapy groups via video teleconferencing

    Quick add: I did some online searching and found one avenue: The Caregiver Space, a community of caregivers started by a caregiver with a pen pal program, FB groups, and links to a lot of articles relevant to individual situations. I just clicked on the subjects "24/7", "Millennial caregivers"...
  4. gardenvessel

    Support/therapy groups via video teleconferencing

    Hi all, Do any of you here know about any group therapy or support groups that have semi-/regular meetings via video teleconferencing (such as skype, zoom, etc.)? They could be ALS-caregiving related or some other interest/circumstance-in-common type groups and may or not be led by a...
  5. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    Thanks for this!!
  6. gardenvessel

    In Praise of Wheelchair Van Rentals

    This may be a "preaching to the choir" post here, but today my partner/PALS had her ALS clinic visit today (always a stressful day for both of us) and for the first time we rented a wheelchair accessible van for transport. It was the BEST thing, and we are both over the moon about it! Over the...
  7. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    Tetramouse looks VERY cool. Money is tight, so buying any computers is out, but this looks affordable. She's only used the Tobii Dynavox that we got from the loaner closet. I'll check with this manufacturer and the loaner closet to see what options they have. Thanks!
  8. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    I don't know if she's tried WWF, but we know that Scrabble online is unplayable. It fills the screen too much and certain buttons are blocked. She doesn't go outside and that's mostly my fault (my #1 guilt actually). It's a daunting and time-consuming task. Worth it, though, I know.
  9. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    Thank you for your insight here. She is not on this forum, but she is aware of it. We have a smart tv with the main streaming services and she's got control of the remote. Fortunately we like a lot of the same stuff. I will definitely have her check out Pulse SMS since she has an Android. She...
  10. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    What!! Eyegaze Minecraft?! That's amazing. Definitely checking that out.
  11. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    That's a great idea I hadn't thought of. Before ALS she was usually taking an online class each quarter. I think she's wanting more escapism than education can provide. It's a good suggestion I'll keep on my list. Thanks!
  12. gardenvessel

    How many of us?

    I hope I'm not the only one that takes the "you're so strong" and "you're such a warrior" sentiments as condescending and patronizing. I already know I am and I just want to yell: "Stop putting me on a pedestal! Shut up already and go wash the pile of dirty dishes in my sink instead!" I know not...
  13. gardenvessel

    New member and my pals is SO BORED! Online game rec's?

    Hello all, my name is Erin. My partner Jen and I live in Seattle. Jen was diagnosed with rapid progression ALS in March 2018. She is immobile now with just eye and some jaw movement left. The tv is on all day and all night and Jen scrolls FB constantly. She is so bored. There comes a point where...
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