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Have you got Primary Progressive Apraxia of Speech? Let's connect

Posted by Colleen Young, Connect Director @colleenyoung, May 20, 2024

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?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

noteworthy | @noteworthy | Feb 6 1:33pm
In reply to @maryj "Adding to this: Sky high inflammation markers in bloodwork during initial illness Shortness of breath if..." + (show)
@maryj

Adding to this:
Sky high inflammation markers in bloodwork during initial illness

Shortness of breath if I try to talk while walking/moving about

Eating or speaking triggers a cough-comes & goes

During first 18 -20 mos, constant back of neck ache & stiffness, stiffness & full ness & pressure around ears, jaws, neck, temples

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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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kholden | @kholden | Feb 9 11:45am
In reply to @maryj "Me too, Frustrated, embarrassed, anxious, depressed, and afraid." + (show)
@maryj

Me too, Frustrated, embarrassed, anxious, depressed, and afraid.

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Dear 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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merrychristmas | @merrychristmas | 2 days ago

At 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

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1 reply
Rene Utianski | @rlu0817 | 1 day ago
In reply to @merrychristmas "At my office visit with PCP she asked me if I would mind being being recorded..." + (show)
@merrychristmas

At 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

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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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