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  1. skipper66
    05-29-2014 02:27 PM - permalink
    skipper66
    Hi Brian,
    How are things going for you? I am doing ok. Been working more hours then normal at work but that helps pay the bills. I really need to get outside and try to get a little sun. I'm white as a ghost. My daughter and I are going to go to Dallas to see my dad on June 9th. He is really getting excited about us coming. I can hardly wait. Take care, Kim
  2. texastracy
    03-18-2014 04:59 PM - permalink
    texastracy
    Hi Brian,
    I got the Dynavox last week. I've been playing with it for the past week. Still trying to get better with her EyeMax. I like less button pages than more. I don't think I have the dwell time right. Do you use dwell, blink or both. If so, what are the best settings? I'll probably want more advice because I already can tell I want to set up my own pages.

    Have a great day. I'm on spring break this week. Getting lots of rest.

    Tracy
  3. skipper66
    03-18-2014 03:42 PM - permalink
    skipper66
    Hi Brian,
    I haven't been getting quite as many advetisements as before so I'm not sure what is going on. I live in a small town about a 2 hr drive east of St. Louis off of interstate 70. We like to go to St. Louis and watch the Cardinals play baseball at least once a year and we go there Christmas shopping. I've been up in the arch once and flew over it one time in a helicopter. That was really neat.
    My dad's progression seems to be pretty much at a standstill right now. He is still getting a small dose of Athatar (sp?). He doesn't feel like it really makes much difference but he also hasn't gotten any worse while being on it either. How are you getting along? Kim
  4. texastracy
    02-09-2014 06:49 PM - permalink
    texastracy
    I have a mobility scooter for work. But they want me to switch to the power chair. Later on, when the need arises, they'll order my PWC with all the necessary gadgets. We had waited to fix up the Jazzy until we went to clinic. 4 falls since November 1, and I figured it might be time to order. But have a basic one saves some time until I have to make a big claim for a chair.

    Thanks for the offer of help with the Dynavox. I'll take you up on that.

    Tracy
  5. texastracy
    02-09-2014 01:51 PM - permalink
    texastracy
    Hi Brian,
    My cousin is a nurse in a nursing home. She an ALS patient that passed away. His family wanted to know if she knew of someone with ALS or who to send it to so it could be loaned out. She told the family about me and also the MDA loan closets. They decided to send it to me, if I agreed to pass it on to the loan closet when I don't need it. I wholeheartedly agreed.

    It's a Dynavox Vmax+, with EyeMax, phone unit, a stand and a wheelchair mount. The poor man only used it about 10 hours, because it never got mounted on a wheelchair.

    Blessings come out of nowhere sometimes.

    Went to 2nd clinic on Friday. Gained 4 pounds, and FVC was up 3%, with inhale scores up 12 points. BiPap works. They want to switch to the plain Jazzy 600 mom-in-law sent. It has no lift, tilt or anything, very basic. They say it will give me easier access at work, and allow me to adjust to a PWC. So of we go.

    Hope you are doing well. Stay warm.

    Tracy
  6. texastracy
    01-27-2014 06:29 PM - permalink
    texastracy
    Ok thanks. I got the model talker and the etiloquist. I yawn a lot and my tongue gets stubby feeling. I'm still pretty clear otherwise, just slower. Plus, I run out of breath faster. At school, I have a voice amplifier system in my classroom that the school provided for me. That helps a lot. The kids like to do tongue stretches with me to help my tongue loosen when I yawn.
  7. texastracy
    01-26-2014 04:19 PM - permalink
    texastracy
    Hi Brian,
    I read your post about the model talker software. Once you got the voices, what device do you use them on now?

    Tracy
  8. skipper66
    12-25-2013 03:33 PM - permalink
    skipper66
    Hi Brian,
    Hope you had a Merry Christmas. Take care, Kim
  9. skipper66
    11-18-2013 02:35 PM - permalink
    skipper66
    Hi Brian,
    I was wondering if you take any vitamins or any medicine for your ALS. My dad hasn't had any bad side affects from his Acthar trial yet but its too early to tell if it's doing any good. Hope you have a good week. Kim
  10. adozi
    11-12-2013 07:49 PM - permalink
    adozi
    Thank you for the Speakbook link. My Tobii didn't work the other day and we were all totally lost. It turned out it just needed a restart after the software update, but i was in a panic when they said it might be a hardware problem, and i would be without it for a week. I'm going to get one printed right away. Thanks, Brian!

About Me

  • About BrianD
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    08/2009
    City
    Colorado Springs
    State or Province
    Colorado
    Country
    US
    Occupation
    Computer Design Engineer
  • Signature
    Brian

    "When you come to the end of your rope, tie a knot and hang on. "
    -Franklin D. Roosevelt

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  • Last Activity: 05-20-2014 01:37 PM
  • Join Date: 09-15-2009

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