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  1. V

    I'm back - About My Son Johnny

    @ Rachelq - You must be reading my mind! We are working on that. Johnny is very into technology. We bought an iPad just for that purpose, due to his worsening speech. His cousin definitely gets away with more than we can. And I'm actually meeting her and her mom for lunch, so I have to run...
  2. V

    I'm back - About My Son Johnny

    @vzandt - Thanks for responding. He does keep busy but he definately needs more to occupy himself, keep his mind busy, as you said. We're working on that aspect. @ Helen - I apologize if I took your comments the wrong way. As has been said I'm sure a million times, there is no inflection in...
  3. V

    I'm back - About My Son Johnny

    @vzandt Very observant, his cousin is the best. I love her so much! She brings joy to our entire family :-) @sadiemae I remember you, so glad you posted and thanks for sending the message to Pidge. :wink:
  4. V

    I'm back - About My Son Johnny

    @ Daniiela I remember you also. And yes, you remember correctly, he's never wanted to discuss the ALS, always wanted to feel like he was living normally. Not talking has kept him feeling 'normal' for a few years but it's time for him to open up about it. He's so shy, always has been, when we...
  5. V

    I'm back - About My Son Johnny

    @ brooksea Thanks for the response, I remember you also. So sorry to see your husband passed in January. I’m glad he’s free from this horrible disease. I hope you’re doing ok. As far as Johnny being with other ALS patients, there are a few in town, not many as it's a small town. They are all...
  6. V

    I'm back - About My Son Johnny

    Those of you who've been on this forum for a few years, will (I hope) remember me and my son, Johnny. He was diagnosed at age 18 with ALS, in mid-2008. He's now 22. I posted here at that time. I haven't been regular here because I was uncomfortable posting someone else's medical information...
    • Valya
    • Thread
    • advice age als back chair choking clinical clinical trial crying diagnosed equipment fell food hope hours information life love medical physical therapy progression speech therapy trial walker wrong
    • Replies: 19
    • Forum: Current caregivers
  7. V

    Driving advice

    My son Johnny, now 21, was diagnoised with ALS about 3 years ago. He hasn't driven now in several months. He still tries to avoid talking about ALS (although it's becoming increasinly impossible for him to avoid an ALS discussion) so we haven't discussed it specifically with him, but I believe...
  8. V

    Guess my phone time is limited?

    It's different with a SIL of course, but I have a friend exactly like that. I got so frustrated I finally told her I didn't have the time to talk on the phone for an hour (as she rambled on and on about exclusively about herself) and email was really better for me. I can skim through her emails...
  9. V

    ALS/Diabetes Walk in Chico, CA

    About the walk, the momentum seems a bit slower than last year, sure hope it picks up soon. Oh...I should make our tshirt the avatar.. I'll work on that one ;-)
  10. V

    ALS/Diabetes Walk in Chico, CA

    Hello Hoping :-D I'd be happy to send you two shirts. You name the size, any is fine as the order hasn't' been placed yet. We are charging $10 each which is $4 back into the walk, which means ultimately going to ALS TDI. Message me your contact info and I'll happily add your order to the list.
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