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    • #13247
      Dagmar Munn
      Keymaster

      Navigating the world while having speech issues is for me, a lot like placing a drive-thru order. From having to prepare what I want to say before I say it, to hoping the listener understood me correctly, I go through an elaborate sequence of steps during every conversation.

      I shared my experiences here, in: Translating the Talking Boxes at the Drive-thru

      What has been your experience when talking to friends or family? How about AI devices, do they understand what you are saying? What are your thoughts about new technology that is enabled to ‘understand’ people with heavy accents? Do you think this will be helpful for people with ALS-speech issues?

    • #13272
      John Russell
      Participant

      Hi Dagmar , I just read your column on the drive thru speaker problems and am still chuckling😁 (I have to be careful not to guffaw because my diaphragm goes into spasms and I can’t inhale). I am just beginning to have speech problems and have been using some of the conversational hints you gave without realizing it.

      Another drive thru issue for me is holding on to money and the drinks with my failing left hand. After putting the van in park an letting go of the hand controls I pick up pre arranged bills from the console with my right hand carefully make a pass to my left and stick it out the window telling the cashier to keep any coins making up the change and hope I can grab any bills that are returned. I tell them to hold on to the drink cup till I say OK. I have stopped trying to use the pneumatic tube at the bank.

      I think we will eventually have devices to understand and translate our slurred speech in conversation.

      Thanks for a funny and useful article.

    • #13274
      Dagmar Munn
      Keymaster

      Hello John – – good to hear from you! I’m happy you found my column helpful (and shared a laugh with me!).

      Here is a short video I found helpful & entertaining. It certainly applies to anyone, but there are also good tips for those of us facing voice issues:

      https://youtu.be/Acl6owhFMHQ

      I’m now more aware of my monotone voice and trying to “go up the stairs.” 🙂

       

    • #13296
      Rosioru
      Participant

      Yes

    • #16800
      Kathy stitz
      Participant

      I am feeling more depressed because I am having difficulty with speaking and feel embarrassed when others don’t understand what I’m saying.  Sometimes I also feel frustrated.   I’ve noticed that people I talk to more frequently understand more of what I’m saying than people I don’t talk to very much.  I start laughing because I’m embarrassed. Speaking is something I took for granted before and when you are no longer able to do so effectively it is very upsetting and depressing.  This is just one of the many things about ALS that is so awful and difficult to deal with.  I know that it’s not my fault  but it’s still hard.

    • #16804
      Dagmar Munn
      Keymaster

      Kathy – – yes, the changes in speaking we experience are so frustrating. I’ve been there and back again. But – – I maintain, that we pALS shouldn’t get pushed into giving up talking too soon. There are lots of great ways to continue to use our own voice. You have to put in the work, but the payoff is self-esteem and… of course, continuing to talk.

      Start here: https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html

      And then: https://alsnewstoday.com/columns/2020/01/28/speaking-dysarthria-voice-amplification-microphone-vocalization-symptoms/

      and: https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html

      I’ve been talking 4 years beyond what my speech therapist predicted and I’m happy to share my tips and suggestions.

    • #16808
      Kathy stitz
      Participant

      Thanks Dagmar. I will read the links you provided.

    • #16858
      GtrJim
      Participant

      My wife was diagnosed with ALS three years ago.  She has been unable to speak or swallow for about two years.  We have a Tobii Dynavox eye gaze device.  If the device is calibrated well with her eyes, she can gaze at a keyboard and create words and sentences and the device can verbalize those.  She can receive and send email.  The DirecTV and Apple TV remotes are programmed into the device. It is her main form of communication. Usually it works OK but occasionally doesn’t and she gets frustrated.  We have been on tech support with Tobii and the technicians are very good.

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