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

Posted by Colleen Young, Connect Director @colleenyoung, May 20 1:07pm

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23 3:48pm
In reply to @peggypierce "My husband has been diagnosed with apraxia but doesn't want to admit it or perhaps doesn't..." + (show)
@peggypierce

My husband has been diagnosed with apraxia but doesn't want to admit it or perhaps doesn't understand it. He has MCI which he is refusing to address too.

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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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1 reply
larry68 | @larry68 | Oct 23 4:05pm
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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1 reply
peggypierce | @peggypierce | Oct 23 4:37pm
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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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31 10:00am
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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EL2852 | @elizabethlewis2852 | Nov 6 4:24pm
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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