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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.

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 8 10:47am
In reply to @que1971 "Hello Everyone, Thank you for allowing me to join. My wife was diagnosed with PPAOS 2022...." + (show)
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Hello Everyone,
Thank you for allowing me to join. My wife was diagnosed with PPAOS 2022. It has really been a challenge for the both of us. She is an attorney and now after 27 years she is forced to retire due to the disease. She has been getting speech therapy but it’s really just managing it. Her speech has progressed and I really can’t understand what she is saying at times and it’s extremely frustrating at times. She recently got a Tobi device to help her speak. This is very tough for her. Can anyone share with us what to expect? I feel like it affecting her cognitively now. She has no emotions or a facial mask, she say yes but mean no or Vice versa.

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Hello @que1971 and welcome to Mayo Clinic Connect. I can understand the frustration that your wife (and you) must be dealing with. While I've not been diagnosed with PPAOS, I do have a paralyzed vocal cord, which has made speech and swallowing challenging at times.

What specialists has she seen about this issue? Has she had any swallowing problems?

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