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Have you got Primary Progressive Apraxia of Speech? Let's connect
Are you living with Primary Progressive Apraxia of Speech? Sometimes it's called progressive apraxia of speech or PPAOS. It reflects difficulty with speaking quickly and accurately. It may start with a simple word you can’t pronounce. Your tongue and lips stumble, and gibberish comes out. It can sometimes occur by itself (speech is the only problem) or develop into other neurologic syndromes like corticobasal syndrome or progressive supranuclear palsy.
On Connect we would like to bring together people who have been affected by PPAOS and provide a space to share your experiences and provide tips for managing it. Patients and family members are welcome.
Grab a cup of tea, or beverage of your choice, and let's connect. Why not start by introducing yourself?
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My ALS has made my speech almost impossible. I am weak all over my body and
my throat Has constant phlegm. I will try my coughing machine again to see if it will help. To ease the cough reflex I use Ricola lemonmint sugarless cough drops. Nobody should have to suffer as we are. So sorry.
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2 ReactionsDear Maryj, you are not alone!!
I started to have symptoms in 2016, I went to speech therapy and the therapist said my speech wasn't bad. I knew that something was wrong. I taught ESL for 45 years, now English was becoming my second language. My disease was progressing, my speech got worse. My PCP said "some men like a woman who can't speak", I left his practice. I saw all specialists and all of kinds tests. I was finally diagnosed with PPAOS in January 2023 at MA General Hospital in Boston. A PET scan showed irregularity in my frontotemporal lobe, which controls speech.
I lost my speech over last 6 months. I use tablet and speech applications to communicate. My attitude is keep going!! It is what it is!!
I could worse off! ♥ ♥
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7 ReactionsAt my office visit with PCP she asked me if I would mind being being recorded so AI would do her charting. I asked if AI could understand my AOS because some people can’t. She said yes. (I doubt it. ) God knows what’s on my record LOL
You ask a good question, @merrychristmas! We did a study on this- it would depend on the system they are using, but I think your concern is a valid one.
https://pubs.asha.org/doi/abs/10.1044/2024_JSLHR-24-00049 (direct message me if you can't access it and would like to read it)
Are you able to see the report to verify if it/she got the information correct?
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1 ReactionHi fellow PPAOSers!
Does anybody else have determining yes or no ?
I know "should " saying but can't!! I read somewhere it's common problem with PPAOS patients
It's frustrating!
Enjoy your day!
Sometimes I reply with yes, even I meant to say no. I think it’s an unconscious response.
Yes, we've heard about this as a fairly common change and have seen how frustrating it can be! Some people seem to benefit from using a thumbs up/down (or pointing to a yes/no, but we recognize that takes more time and tools). Others just need a little more time and tend to be able to always self-correct.
Do you notice a difference based on how you're responding (speaking, shaking your head, thumbs up/down, writing)?? Does extra time help?
Mayo Clinic health
I looked at the clinical notes. And there are no quotes from me But did chart that examined a told me things that she DIDNT