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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.

This topic has 3 replies, 3 voices, and was last updated 1 year ago by Ryan Berhar.

  • Author
    • #18991
      Kevin Schaefer

      I’ve written before about struggling to find a computer that works for me. With my extremely limited arm-strength and dexterity, it’s hard for me to type on anything other than an iPhone keyboard. Even my iPad became difficult for me to use within the last two years. These days, I pretty much only use it for reading eBooks and digital magazines.

      Recently though, my boss bought me a new computer, as I need it for my work responsibilities (using Google analytics, podcasts, video conference calls, etc.). It’s working out great! It’s a MacBook Air (sorry Apple haters), and it’s the perfect size for me. I can control the mouse and onscreen keyboard with my left hand, and with my right hand I hold a pencil to operate some of the additional keys on the physical keyboard. I’m still figuring some of the kinks out, but overall it’s working out great.

      What kind of computer do you use? Do you have any tips on finding one?

    • #19004
      Tracy Odell

      In my 20’s, I could type up to 100 wpm, both hands, all fingers flying. I use a PC. Over time as my physical abilities changed, I made use of macros and cut & paste and shortcuts to save keystrokes. At 30, I got Dragon Naturally Speaking so I could type longer passages without my fingers giving out. Typing by hand was possible in short bursts, and with 9, then 8 fingers in my 40’s. I depended more on Dragon, but found it frustrating since it often misunderstood me and had to be corrected to make sure the recognition didn’t deteriorate. I tried a mini-keyboard in my mid-50’s, but it didn’t work well for me. Now at 60, I use an onscreen keyboard for shorter things, and Dragon for longer ones. I miss “voice-o’s” quite often. Not perfect but that’s what works (for now).

      • #19007
        Kevin Schaefer

        Thanks Tracy. Yeah, you definitely do what works for you. For me personally, I could never get used to using voice-activated technology, but I know a lot of people with disabilities who love it. Have you ever experimented with eye-tracking technology? Brianna did a post here the other day about it.

    • #19018
      Ryan Berhar

      Computers are really difficult for me to operate as well. I basically just avoid them like the plague and use my phone for most everything. Haha. Dragon dictation software is good for typing text, but not so much for actually operating the computer in my experience.

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