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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 10 replies, 6 voices, and was last updated 2 months ago by DeAnn R.

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    • #22857
      Alyssa Silva
      Keymaster

      I’ll be honest… I’ve been a proud owner of an Amazon Echo for several years now and have never really explored all of its capabilities or “skills.” Basically, I ask her to play music and turn on the lights.

      What are some of your favorite skills? Now that I’m home and have some extra free time, I’d like to find ways to use Alexa that could help with my day-to-day needs.

    • #22872
      Kip Troendle
      Participant

      Gosh, you’ve missed out on the “good ol’ days”.  Gonna reminisce a moment.  A skill called Mastermind allowed me to compose AND read text messages.  This is truly missed.  I could control my cell phone by telling Mastermind to call anyone in my contacts, and it would automatically dial that person on speakerphone.  Yes, we can still call from Alexa, but the quality of my voice isn’t as nice as my cell.  Mastermind would also tell my cell phone battery level.  Why was Mastermind discontinued?  Mastermind couldn’t receive “permissions” to access the phone.  The “big boys” like Apple, Google, and Microsoft didn’t want to share.

      Then there was the AnyMote app which used the IR blaster on a cell or tablet to control an ENTIRE home theater system.  Excuse me while I grab a tissue and remember this great Alexa skill no longer supported…

      Okay, onto the present.  I have multiple echo dots throughout the house.  — Alexa, drop in on mom in the kitchen… “Mom, bring more milk please!”.  A nice way of using an intercom service without having it on all the time.  — Alexa, open the garage door.  This notifies dad I need something when he’s outside.

      Then there’s the smart outlets I use to turn on/off my electric fireplace, lava lamp, Christmas lights, etc.

      I truly wish there were more voice activated skills to assist disabled people.

    • #22875
      Crystal
      Participant

      I don’t know of any useful skills really. I mean, I have multiple news skills (including the SMA News Today one) that I listen to. But besides that, I listen to music, the Bible, and play games. The games are my favorite but my favorite games are hard for me to use since they require a lot of talking. There’s The Magic Door, which is a choose your own story game. It’s really interesting but I get frustrated easily cuz if she can’t understand me, I’m stuck. And she frequently can’t understand me. I also love The Tricky Genie…I don’t know how to explain this one really. Basically, she tells you a short story with a problem and says that a genie appears with three pouches, one of which has the solution to the problem and you have to pick the right one with only 2 tries. It may not sound fun but I love it. It’s easy to play…once you get it open. That’s the problem for me. The easiest way for me to open it is… well: “Alexa, I’m bored.” “Ok let’s find something to do. Would you like poems, jokes, games, (and on and on)?” “Games” “Games got it. Would you like family games, classic games, choose your own story games, (and on and on)?” “Choose your own story games” and then I wait for her to name the Tricky Genie and say yes and then I play. The only problem is, that almost never goes smoothly. At least not on the first try. I also like trivia games like Marvel Movie Trivia, True or False, and Jeaperdy (?). That’s all I can think of right now though.

    • #22882
      Robert Stump
      Participant

      I 2nd the great days of old when Mastermind was the absolute best use of a smart device ever, I never used anymote but I get pretty good functionality with IR devices by voice using the harmony hub.  Anymore, besides controlling my home automation devices, the most useful services I use are tune-in so I can be scared every day listening to CNN or MSNBC’s live broadcast, controlling some functionality on my firecube, and of course my flash briefing I need to listen to every morning while trying to take a poop 🙂

      Actually, I take that back.  Routines are something I cannot live without now.  I have a hard time calling for help at night, so I sleep with a echo dot 3 inches from my mouth.  It has a hard time understanding me when I’m laying down, but I have a few phrases that I can can choose from (inevitably one of them works) which will launch a routine in another room to get someone else’s attention.  The routine turns the volume all the way up in the other room, then loudly says that Bob needs help and you should go save him!

    • #22884
      Halsey Blocher
      Participant

      I mostly use mine for music. (That’s actually what I’m doing right now.) But I also like using her as my alarm. You can set one time alarms or reoccurring ones. And she right by my closet so when I pick out my clothes in the morning I sometimes ask her what the weather is so that I know how to dress. And I sometimes use her for reminders. She doesn’t always understand what I told her to remind me of, but just getting a reminder usually helps remember.

    • #22891
      DeAnn R
      Keymaster

      Robert, how did you get a routine like that set up? Sometimes the volume gets turned down, so my pca doesn’t hear when I drop in.

      Alyssa, I like Question of the Day, Volley Daily Trivia and sometimes Jeopardy. I also like listening to some actual radio stations through it. Plus all the stuff everyone else has mentioned.

    • #22893
      Alyssa Silva
      Keymaster

      Thanks for all the input! Yes, I’d like to know how routines work as well? That would be a great and useful feature for me as well.

    • #22908
      Robert Stump
      Participant

      Routines are actually pretty simple to set up, while at the same time being extremely powerful to make your Alexa devices do exactly what you want.  Here is a very easy to follow guide which should get you started and ready to come up with some amazing routines just for you: https://is.gd/KqFBXF

    • #22910
      Robert Stump
      Participant

      DeAnn, if all you need to do is turn up the volume on a different Alexa in your household (let’s assume the other device has the following name: Office), here are the steps to do so:

      Open the Alexa app

      Open up the menu (3 lines on the top-left)

      Choose Routines

      Press the “+” on the top-right corner

      Choose “routine name” and type something like “fix volume”

      Press “Next” on the top-right corner

      Choose “When this happens” and then choose “Voice”

      Type your phrase you want to say to launch this routine, like “fix office”

      Press “Next” on the top-right corner

      Choose “Add action” and then choose “Device settings”

      Choose “Volume” and then adjust the slider to your desired amount like 80%

      Press “Next” on the top-right corner, and then press “Next” again to confirm

      Scroll down (if necessary) to the FROM section and select “Choose Device”

      Choose which Alexa to change volume of, “Office” in our example

      Press “Save” on the top-right corner, then wait 60 seconds and then try it out

    • #22911
      Robert Stump
      Participant

      Another example of how I make the routines useful for me is to launch applications that I just cannot get my Alexa to understand me saying.  In every room where there is an Alexa device, there is also a Google Home.  If I want to watch Buzzr TV on stream player on my echo show, all I need to do is say “Alexa 17” to my echo show.  What this does is turn up the volume on the Echo show, and then she says “okay Google buzzer TV”, then she turns her volume back to 5.  Now, on my Google devices I have a similar routine set up (they are called Shortcuts on Google I believe) that does the following when it hears the command “buzzer TV”… The Google volume turns up to 8, then says “Alexa ask stream player to launch buzzer TV”, then it turns its volume back down to 5.  More often than not the 2 devices hear each other very well and I can sit back and watch the magic happen!

      Take that, supposed limitations!

    • #22923
      Alyssa Silva
      Keymaster

      thanks for all the insightful info, Robert!

    • #22924
      DeAnn R
      Keymaster

      So clever! Thanks Robert. I have used routines, but nothing this extensive.

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