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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.

joedeb | @joedeb | Dec 20, 2024

My wife has agraphia too. Most of the time her writing is not legible. Of all things, shw wants to watch football. She has never wanted to do that. She will watch it for hours.

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joedeb | @joedeb | Dec 20, 2024

My wife has recently had trouble speaking and forming sentences. After her two minute speach to her primary care doc, the doc said I didn't understand a single word you said.

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kholden | @kholden | Dec 19, 2024
In reply to @merrychristmas "I attended the breakout chat. Aphasia is different that PPAOS . Yes I can learn something..." + (show)
@merrychristmas

I attended the breakout chat. Aphasia is different that PPAOS . Yes I can learn something from them but I was hoping to be in a chat with people who have PPAOS

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Happy Holidays!!
I discovered the new support group of just PPAOS patients, FINALLY!!!
See you on last Wednesday in January at 4 o'clock!!

Shared files

PPAOS Friends Virtual Support Group Flyer (PPAOS-Friends-Virtual-Support-Group-Flyer.pdf)

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1 reply
merrychristmas | @merrychristmas | Dec 18, 2024
In reply to @merrychristmas "Most people have aphasia which is different from Apraxia. I didn’t get anything I was looking..." + (show)
@merrychristmas

Most people have aphasia which is different from Apraxia. I didn’t get anything I was looking for

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I attended the breakout chat. Aphasia is different that PPAOS . Yes I can learn something from them but I was hoping to be in a chat with people who have PPAOS

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1 reply
merrychristmas | @merrychristmas | Dec 17, 2024

I like to know what are the dangers of anesthesia to the PPAOS brain . Does it trigger cognitive impairments?
What meds are a concern ? I know that benzodiazepines, anticholinergics,antihistamines , opiods etc should be avoided.
Where can I find information about this subject? I tried a pharmacy consult and my questions went unanswered

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merrychristmas | @merrychristmas | Dec 17, 2024
In reply to @rlu0817 "They do breakout rooms for different types of PPA and PPAOS: https://aphasia.org/series/primay-progressive-aphasia-chats/" + (show)
@rlu0817

They do breakout rooms for different types of PPA and PPAOS: https://aphasia.org/series/primay-progressive-aphasia-chats/

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Most people have aphasia which is different from Apraxia. I didn’t get anything I was looking for

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EL2852 | @elizabethlewis2852 | Nov 6, 2024
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 usually use the Personal Voice on iPhone,
I using my TD Snap, with figures, to record my family, careers, education, and etc.
I like the TD Talk because it easier to type, I hope the TD Dynavox will in future, has app TD Talk with iPhone.
Earlier months ago, I going speech therapy twice a week, at FSU speech communication and the private speech therapist.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2024
In reply to @larry68 "Not a lot yet.I got a ultrasound of my legs today.Tomorrow i get a EEG and..." + (show)
@larry68

Not a lot yet.I got a ultrasound of my legs today.Tomorrow i get a EEG and then next week a MRI. .I have had vertigo to go along with everything else.Still have days where i can't hardly get a word out.Maybe after EEG and MRI they will figure it out.

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@larry68, how did the appointments go?

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peggypierce | @peggypierce | Oct 23, 2024
In reply to @colleenyoung "Hi @peggypierce, denial with mild cognitive impairment is common. I think you may appreciate the blog..." + (show)
@colleenyoung

Hi @peggypierce, denial with mild cognitive impairment is common. I think you may appreciate the blog posts written by the directors of the Mild Cognitive Impairment program called HABIT at Mayo Clinic. See:
- Living with Mild Cognitive Impairment https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/

Your situation reminded my of this post written by @drmelaniechandler
- Is it Denial or Something Else? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/is-it-denial-or-something-else/

I agree with @aoibhin. This is a lot to absorb and to deal with. Who on his medical team has told him about his diagnosis of MCI and apraxia? Have you been able to get support?

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Thank you, Colleen. Bill was diagnosed with. MCI in 2020 at Banner Alzheimers Institute. His apraxia diagnosis came from his speech pathologist just this year.
Peggy Pierce

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larry68 | @larry68 | Oct 23, 2024
In reply to @colleenyoung "Hi @larry68, what did you learn at your recent appointment? How are you doing?" + (show)
@colleenyoung

Hi @larry68, what did you learn at your recent appointment? How are you doing?

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Not a lot yet.I got a ultrasound of my legs today.Tomorrow i get a EEG and then next week a MRI. .I have had vertigo to go along with everything else.Still have days where i can't hardly get a word out.Maybe after EEG and MRI they will figure it out.

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