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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 17 replies, 4 voices, and was last updated 2 years, 2 months ago by David Z.

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    • #11302
      Kevin Schaefer
      Keymaster

      Hello everyone. I just wanted to get the discussion going in this new forum.

      I’ve had an Echo Show for about nine months now, and it’s an incredibly useful device. I wrote several columns about it here on SMA News Today.

      Some of the things I’ve been able to do with it include:

      -Calling my parents when my arm is stuck and I can’t move the joystick on my chair

      -Listening to music and podcasts while I’m working

      -Watching TV without having someone help me get set up

      -Calling friends

      I want this forum to be a place for other SMA individuals to talk about how this technology helps them, and to ask questions about the Echo Dot and Echo Show. Parents and caregivers are also welcome to join these discussions.

    • #11312
      DeAnn R
      Keymaster

      I love that you can pair other devices to it as well, like smart bulbs and smart sockets so you can control things like lights and lamps with your voice too.  So cool.  Speaking of cool, I’ve heard of using the smart socket & Alexa to turn on a fan!  Possibilities are almost endless.  I’m hooked on question of the day.  Other favorites?

      • #11315
        Kevin Schaefer
        Keymaster

        Right! It’s amazing what it can do. My parents also have an Echo Dot which they keep out in our kitchen. Anytime I’m back in my room and need help, I can call them and they can respond through their Dot. This is really helpful, as sometimes my hands are too tired at the end of the day to operate my phone. The voice-activation is way easier.

    • #11484
      David Z
      Participant

      I don’t have/use Alexa, mostly because I’ve been programming my own customized voice-activated system since before Alexa was available. I use it for myriad things.

      • Calling for help (of varying volume depending on how conscious my PCA is) via devices elsewhere in the house
      • Calling for help in an emergency, where it will automatically phone/SMS a list of people (I’ve never actually used this but it lets me rest easy)
      • Controlling TV (serves as my computer monitor)
      • Controlling computer in general
      • Controlling lighting, fans, HVAC thermostat (Ecobee), suction
      • A “dead man’s switch” that raises an alarm if my computer fails somehow (or if the cat steals the microphone)

      It lets me do pretty much anything, from any position, at any time. To create a machine to work your will is to create your destiny.

      • #11485
        DeAnn R
        Keymaster

        I applaud your ingenuity.  With the right brains behind it, technology sure can do amazing things.  What’s next on your list of innovative technology?

      • #11488
        Kevin Schaefer
        Keymaster

        Like DeAnn said, that’s really impressive. Do you have a background in computer science or engineering?

        • #11609
          David Z
          Participant

          I have a couple degrees in computer science and I’ve been involved with electronics most of my life. Between the internet facilitating free flow of information, and cheap niche/custom hardware from China, now’s a great time to build stuff despite lacking utterly any dexterity.

        • #11610
          DeAnn R
          Keymaster

          Kudos to you David!  I started off in computer science, but couldn’t get past a programming class, so switched to business.  Certainly am glad to be living in the technology era.  What voice activation feature that you’ve come up with do you like the most?  Currently I use my smartphone to control the TV, but debating if I should invest in the technology to be able to do voice control.  Keep up the creativity!

        • #11953
          David Z
          Participant

          Hmm, it’s not as cool to describe or show off, but for sheer time savings, it’s hard to beat simply controlling my computer keyboard & mouse via voice from bed. Combined with using a nice big TV as a screen, I can do anything while stretching out, for example reading this forum and writing this reply. No need to get my arm propped just the right way. I’ve saved countless hours of otherwise dead time.

          The hardware for good voice recognition on PC isn’t expensive: just a good USB sound card ($25) and an appropriate microphone (varies but decent ones as low as $5 if you just want to experiment). The base software I use is free (Windows only), but I’ve heavily customized/personalized/extended it. I feel like I should generalize & distribute it for others, but perhaps my usage is idiosyncratic, and it’s much more fun to build than to document.

        • #11954
          Kevin Schaefer
          Keymaster

          Thanks for sharing David! Yeah you should bring this technology to conferences or something. I’m sure many other SMA folks would be interested in using it.

        • #12161
          David Z
          Participant

          Well, I’m a hermit so I don’t go to conferences, but I’ll see about packaging it up and writing some instructions for others to try.

        • #11957
          DeAnn R
          Keymaster

          Very cool David!  Brag away.  I love hearing all of the ways technology can be customized to suit our needs.  Some of us however would need detailed step by step instructions as we’re not as tech savvy as some of you.  Here I thought I was doing good when I  discovered the on-screen keyboard a few years back.

    • #11964
      Adnan Hafizovic
      Participant

      And how much cost Echo Show?

      • #11967
        Kevin Schaefer
        Keymaster

        Adnan the standard price in the U.S. is about $200, though there are plenty of deals online. I’d recommend looking on eBay or a similar site.

    • #11973
      DeAnn R
      Keymaster

      Adnan, I just checked on Amazon, they had the Show on sale for $159.99 typically $229.99.  https://www.amazon.com/Amazon-Echo-Show-Alexa-Enabled-Black/dp/B01J24C0TI/ref=gbph_img_m-3_f5ba_d1c95c85?smid=ATVPDKIKX0DER&pf_rd_p=3819fc6b-51a0-4a0e-a6ed-d3559927f5ba&pf_rd_s=merchandised-search-3&pf_rd_t=101&pf_rd_i=11851273011&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=P5Q12T403DT4ZWB5AZBD

      I am a Prime member , so not sure if that price is available for everyone.  They also have a  Spot that looks pretty cool.  Think I saw that for $109.99.  Less expensive options are the Echo and Dot, but they don’t have screens.  As Kevin said you may be able to get them on a secondary market more reasonably priced.  I do love my Show!

    • #12002
      Adnan Hafizovic
      Participant

      Don t sell and don t send him in Bosnia

      • #12003
        Kevin Schaefer
        Keymaster

        That’s too bad. If anything you could try contacting Amazon through email or something. I have an SMA friend who works for the company.

      • #12027
        DeAnn R
        Keymaster

        What a bummer Adnan.  Technology like that can be fun and helpful.  Guess you’ll have to settle for doing things old school.  Trust me, you can do almost everything the Echo can do with a yardstick.

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