Recent content by Jrzygrl

  1. J

    Cristin's Ulf

    I am very sorry for your loss, Cristin. Your love for him was so apparent. Please go easy on yourself. You did everything you could. This beast leaves us feeling like we're constantly running a race that can't be won. Wishing you and your daughter peace as you find your way forward. 💕
  2. J

    Moving forward

    She is BEAUTIFUL! And I love her name! Congratulations!
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    Caregiver awaiting a diagnosis, todo list

    Hi John, Yes, clinic days are often long and draining for both PALS and CALS. One thing that my husband, then later I did, was email a list of questions/concerns to the clinic team a few days before each visit. It gave them a chance to prepare and kept me from forgetting things as the day...
  4. J

    My PALS and denial

    Hi V, Sorry you're going through this. My DH tried several "cures" before he accepted the fact that nothing was working. I didn't want to give up either, but hated the false hope it created. I'm sitting here in his office with a $6000 Bemer that someone convinced him would help. We also...
  5. J

    #EveryCommunity map

    I would. To me, it sounds like the intention is to indicate those affected by ALS - to show depth and breath of the devastation.
  6. J

    #EveryCommunity map

    Just put my DH and I on the map!
  7. J

    Thinking of You All

    Just popping in to say "Ditto" to Lenore and Sue. Sending strength to all the PALS and CALS out there. You are loved! ❤
  8. J

    Jasia

    So sorry for your loss. May she rest in peace.
  9. J

    outside caregivers, visiting nurses etc considering coronavirus

    Oh, wow, V! I hate to see things like this. I've been thinking how hard it would be if my DH were still here. His aide came 2x a week for a total of 12 hours. Not much, but it was a God-send. She was an angel. But - she was also a single mom with 3 kids. 2 of them pre-schoolers. I don't...
  10. J

    transfer lifts help

    Kristina, We had a manual lift at first. It worked OK, but because my DH was so tall, we had issues with the lift height. The ALS loan closet was able to get us an Invacare 450 power lift which was awesome. It not only was easier to use, but the lift height was much better. We had 2...
  11. J

    Lost my Guiding Star

    So sorry for your loss. She sounds like a wonderful lady! She was lucky to have you and your family. Wishing you peace.
  12. J

    How do you all feel ?

    Yup. My husband was diagnosed at 55. Everything changes. The balance shifts. It's the hardest job ever. We grieved for the life we lost, wishing just to be ordinary again. Our local ALS Association had a program to provide some help with aides. Our aide came 12 hrs per week. Most of the...
  13. J

    My Frank is free

    Sharon, I am so very sorry. You and Frank had such a long hard journey. I am glad to hear that his passing was peaceful. In the end, I think that is the best we can hope for them. He is now flying free. I pray that the love you shared brings you comfort and peace. Hugs, my friend. ❤
  14. J

    End of life legislation

    Wonderful and heartbreaking at the same time. ❤
  15. J

    talk to me about after market add-ons for my PWC

    We found a Ram Mount cup holder worked on my husband's F3. I attached it to the end of 1 arm. It was self leveling, which allowed him to recline without spills. We had a variety of long straws. Tervis cups with the straw lids were great and fit well. Another cheap mod I made was to put a...
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