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    • #14324

      ALS News Today’s forums moderator, Amanda Sifford, discusses how some speech difficulties for pALS are like Translating the Talking Boxes at the Drive-thru.

      Are you interested in learning more about ALS? If so, please visit alsnewstoday.com/

      What are your thoughts on this news? Share them in the comment section below.

    • #14337
      Paul Tavano
      Participant

      I am having speech difficulties and as a result I am constantly asked to repeat myself. It is frustrating but I do understand. I find myself not talking as much especially with people I don’t know very well. I’m not antisocial but my speech is starting to make me an introvert even though I really have a lot to say.
      there are certain sounds that are harder to understand so in mid sentence I find myself looking for an alternative words which will be more readily understood.
      There you have my 2 cents

    • #14340
      Michael Giles
      Participant

      My speech difficulties have regressed to the point that I often use a speech assistant app on my iPad. It’s called Predictable. I find it makes things easier, but also complicates things for people who are not accustomed to a conversation that moves much slower than normal. When I am with friends who know me and are familiar with my condition, I find they will wait while I type my message. I find that keeping my messages short helps the conversation flow. Even so, it can get frustrating. I agree, Paul Tavano, I find myself searching for words that are easier to pronounce, and I find myself talking less. I am by nature an introvert, but when I have something to say, I want to say it! I am learning to listen more, and it’s very interesting at times to really hear what people are saying. I realize that often I wasn’t really listening, but waiting for my time to speak.
      That’s my 2 cents worth.

       

       

       

       

    • #14350
      Dagmar Munn
      Keymaster

      I began to have speech problems 5 years ago, but have managed to maintain use of my own voice and not rely on assistive devices. The three things that helped me the most:

      • Change your breathing pattern from upper chest, shallow breaths to – – more fuller, deep diaphragm breathing. (here’s a helpful video: https://youtu.be/WhLm1xqrrrk )
      • Always sit ( or stand) with good posture. Sit on your thigh bones, not slouch onto your lower back area. Use pillows to prop yourself up – – this gives space for your ribs, lungs and diaphragm to move. (helpful video: https://youtu.be/h2abFgAcLc8
      • Move (pronounce) consonants more in the front of the mouth. Example: “K” sound is usually made in upper back of mouth… try making “K” sound clicking tongue at upper middle of mouth. Grinning broadly while doing this helps tongue placement.

      Let me know if you want more online resources in these areas. I believe we can keep speaking longer than many lead you to believe. It’s just learning how.

    • #14352
      Anonymous
      Inactive

      ” I believe we can keep speaking longer than many lead you to believe. “

      Very well put Dagmar !

    • #14354
      Brian Torgunrud
      Participant

      I’m new to forum – diagnosed mid November, 2019.  It was my slurring speech that ultimately got me looking for answers.  The health care system took over and I was diagnosed shortly after my first visit to my Doctor.

      I’ve been using a voice banking website – ModelTalker – to record my voice and manage the files.  My question is: Is that what most pALS do, or is this something that really isn’t worth the effort?  I also saw a reference to an iPad app – is there a popular iPad app that is commonly used?

      I have a million other questions and am kind of giddy to have found this forum – I’ll have to pace myself.

      Thx – Brian

    • #14355
      Dagmar Munn
      Keymaster

      Brian – – every pALS has a variance to the standard symptoms, so, keep in mind you need to do what’s best for you.

      That said, I’ll share my opinions and experiences.

      • Do read my comments above for some basics.
      • Personally, I’m not a fan of voice banking. I think it just distracts pALS from the real issue: learning how to keep talking through the symptoms. It’s a lot of time spent recording so that “your” voice will come out of an AI device. But, family considerations, etc. may warrant having your recording of “good night” or “I love you.” I wrote about it here: https://alsnewstoday.com/2019/08/20/voice-banking-dysarthria/
      • There are a lot of text-to-talk apps. I use a simple one “Type and Speak” to give my Echo Show & Amazon Alexa commands. They just don’t understand me, but they understand the voice in my phone (ha!)
      • One more… speech therapists give the impression that pALS go from slurred speech right to augmentative devices, but if you approach your speech issues logically, and think out-of-the box…. I believe you can extend the use of your voice. https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html

      Hope all this is of help for you.

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