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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.

EL2852 | @elizabethlewis2852 | May 31 8:48am
In reply to @colleenyoung "Welcome, @elizabethlewis2852. You've found the right place for a support group on apraxia. As a professor,..." + (show)
@colleenyoung

Welcome, @elizabethlewis2852. You've found the right place for a support group on apraxia. As a professor, not being able to lecture on your area of expertise and no longer being able to speak the longer terms used in your book must've been a shock. I can only imagine that it was both a shock and a relief to get the name Primary Progressive Apraxia of Speech to describe what you are experiencing.

Do you still see a speech therapist? What tip would you offer to people about using technolobgy like TD Talk and Personal Voice? Do they work for you?

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I am doing speech therapy each week. I can’t speak. I used to speak with my iPhone's personal voice, speech assistant, or text-to-speech.
Dr Tanner said I could test the Amyloid PET, one last year.
I am new health insurance is moving.
I am moving from Tallahassee, FL to Falls Church, VA, next year, to be near my son and daughter.
I am new to health insurance and am moving to Virginia.
I HAVE QUESTION TO
DR RENE:
The Amyloid PET results in a large amount of amyloid!
Can I do the new health insurance if I test for higher amyloid? Or a higher premium?
Thanks to all!

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rickjudy2012 | @rickjudy2012 | May 10 5:34pm
In reply to @arbie "After two years of tests and exploration rI finally received a diagnosis of PPOAS in March..." + (show)
@arbie

After two years of tests and exploration rI finally received a diagnosis of PPOAS in March 2025 Speech is becoming more effortful and difficult for others to understand easily. This very frustrating and there is so little information about this condition.. I would love to connect with others and share strategies and feelings.

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My wife has been diagnosed to have primary progressive aphasia.
She had a bad fall in November of 2019 & was hospitalized for two weeks. She had fractures to bones on either side of her head. Upon returning home, she suffered frequent bouts of nausea & dizziness, but I learned the Epley maneuver &, over time, her problems went away.
Her ability to speak articulately never declined for over two years; after seeing a neurologist, DJ was given the diagnosis.
Over the past two years or so her ability to speak fluently & to process the words she hears from me has declined immensely. She has s en a speech therapist weekly for a couple of years, but there is no evidence that it is helping.
A second neurologist determined that she had mild cognitive decline, but no tumor & no dementia.
She is 78 years old, physically fit & active, manages all her household chores, cooks, etc.
However, our communications are really limited & I have had to learn to be very patient.
She reads, but it is very slow & deliberate.
I would be interested in your condition, issues & any input you would care to offer.
Thank you.

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arbie | @arbie | May 9 2:50pm

After two years of tests and exploration rI finally received a diagnosis of PPOAS in March 2025 Speech is becoming more effortful and difficult for others to understand easily. This very frustrating and there is so little information about this condition.. I would love to connect with others and share strategies and feelings.

REPLY
1 reply
merrychristmas | @merrychristmas | Apr 24 9:35am
In reply to @joedeb "My wife exibits a bit of normal conversation in the morning but as the day goes..." + (show)
@joedeb

My wife exibits a bit of normal conversation in the morning but as the day goes on the apraxia gets worse. It's very frustrating. I find myself interupting her conversations in fron of others because she's not making any sense.

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Can she write it down? Does have a AAC device? In early morning can you ask her how she wants you to act when communicating ?

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joedeb | @joedeb | Apr 21 9:31pm

My wife exibits a bit of normal conversation in the morning but as the day goes on the apraxia gets worse. It's very frustrating. I find myself interupting her conversations in fron of others because she's not making any sense.

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1 reply
merrychristmas | @merrychristmas | Apr 14 9:44am
In reply to @rlu0817 "You ask a good question, @merrychristmas! We did a study on this- it would depend on..." + (show)
@rlu0817

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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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

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Rene Utianski | @rlu0817 | Apr 14 7:34am

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?

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pattinc | @pattinc | Apr 11 9:29am
In reply to @kholden "Hi fellow PPAOSers! Does anybody else have determining yes or no ? I know "should "..." + (show)
@kholden

Hi 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!

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Sometimes I reply with yes, even I meant to say no. I think it’s an unconscious response.

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kholden | @kholden | Apr 10 8:21am
In reply to @101margu "I was first diagnosed with non-fluent PPA in 2021, and in 2023 diagnosed with apraxia. Living..." + (show)
@101margu

I was first diagnosed with non-fluent PPA in 2021, and in 2023 diagnosed with apraxia. Living with PPAOS is helped by support from others: I attend conversation groups on zoom, book club for people with aphasia, and in-person events organized by Minnesota Connect Aphasia Now. https://mncan.org/
The organization has many programs for PPA, now including PPOAS. Yay, MnCAN!!

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Hi 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!

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