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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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ledmison | @ledmison | Jan 6 3:42pm
In reply to @kholden "Hi fellow PPAOSers! Does anybody else have determining yes or no ? I know "should "..." + (show)
Profile picture for kholden @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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@kholden Yes!!! I know right away if I’ve said the wrong thing and correct myself.

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ceciford | @ceciford | Jan 19 9:58am
In reply to @colleenyoung "@vball91 @ls1313 @xerky1024, I'd like to invite you to the new discussion group. It's a space..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@vball91 @ls1313 @xerky1024, I'd like to invite you to the new discussion group. It's a space where you can share the experiences of living with apraxia, honestly and openly without judgement.

Whether you have apraxia yourself or are caring for someone who does, please join in. Pull up a chair and tell us a bit about yourself.

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@colleenyoung

I am Ceci Ford. I just was diagnosed with primary progressive apraxia of speech by Mayo clinic in Rochester. I met with Rene Utianski and Hugo Botha.

I live in Madison Wisconsin and retired from sociology and linguistics professor ship at UW Wisconsin Madison.

Am severely depressed for the last several years and I saw a psychiatrist at Ayo additionally. That person recommended ECT as the less best hope for my severe depression.

Rene Utianski recommended this chat group and other others for my support with dealing with this diagnosis.

I want to know how other people have dealt with this diagnosis. I'm having trouble speaking out loud, but I can speak into this chat because of it's dictation application

I want to preserve my speech by Voice Banking. I have some recordings of my lecturing. I want to use them. Do you know of any Voice bank programs applications or other things that I can use that recording for? It's the best sample of when I could speak articulately and quickly and enthusiastically.

I'm originally from Southern California, so this weather in Madison today is excruciating!

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1 reply
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ceciford | @ceciford | Jan 19 11:31am

Coleen:
How do I get only on the lists relevant to primary progressive apraxia of speech. I'm on the general Brain & Nervous System group and got an update on all activity in that group. I only want ones related to apraxia of speech or other relevant disorders. Can you help?
ceci ford

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2 replies
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John, Volunteer Mentor | @johnbishop | Jan 19 5:17pm
In reply to @ceciford "Coleen: How do I get only on the lists relevant to primary progressive apraxia of speech...." + (show)
Profile picture for ceciford @ceciford

Coleen:
How do I get only on the lists relevant to primary progressive apraxia of speech. I'm on the general Brain & Nervous System group and got an update on all activity in that group. I only want ones related to apraxia of speech or other relevant disorders. Can you help?
ceci ford

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@ceciford - The Help Center has step by step instructions for how to setup and use Connect. There is a Help Center link at the top of every Connect page. Here's a direct link to the Help Center - https://connect.mayoclinic.org/help-center/. It can be a little overwhelming at times if you receive a lot of notifications. You can see (and change) the groups and discussions you are following if you select your profile icon at the top right of any Connect page and select Settings & Preferences.

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merrychristmas | @merrychristmas | Jan 20 9:45am
In reply to @ceciford "Coleen: How do I get only on the lists relevant to primary progressive apraxia of speech...." + (show)
Profile picture for ceciford @ceciford

Coleen:
How do I get only on the lists relevant to primary progressive apraxia of speech. I'm on the general Brain & Nervous System group and got an update on all activity in that group. I only want ones related to apraxia of speech or other relevant disorders. Can you help?
ceci ford

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@ceciford I far as I know you can’t. It’s listed under this group

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ceciford | @ceciford | Jan 21 4:45pm

does anyone have experience with quitting gabapentin and having your speech improve?

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1 reply
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JustOnlyJohn | @johncorvino | Jan 30 3:08pm

An essay I wrote for People magazine about my journey with PPAOS, and I wanted to share it here, but this site won't allow me to share links. If you search the People site for "I Traveled the World as a Public Speaker. Soon I May Be Unable to Talk," you may find it.

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1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
In reply to @ceciford "@colleenyoung I am Ceci Ford. I just was diagnosed with primary progressive apraxia of speech by..." + (show)
Profile picture for ceciford @ceciford

@colleenyoung

I am Ceci Ford. I just was diagnosed with primary progressive apraxia of speech by Mayo clinic in Rochester. I met with Rene Utianski and Hugo Botha.

I live in Madison Wisconsin and retired from sociology and linguistics professor ship at UW Wisconsin Madison.

Am severely depressed for the last several years and I saw a psychiatrist at Ayo additionally. That person recommended ECT as the less best hope for my severe depression.

Rene Utianski recommended this chat group and other others for my support with dealing with this diagnosis.

I want to know how other people have dealt with this diagnosis. I'm having trouble speaking out loud, but I can speak into this chat because of it's dictation application

I want to preserve my speech by Voice Banking. I have some recordings of my lecturing. I want to use them. Do you know of any Voice bank programs applications or other things that I can use that recording for? It's the best sample of when I could speak articulately and quickly and enthusiastically.

I'm originally from Southern California, so this weather in Madison today is excruciating!

Jump to this post

Welcome, @ceciford. I'm so glad that Rene directed you to this discussion group. Allow me to tag other members who live with primary progressive apraxia of speech (PPAoS), like @ledmison @merrychristmas @101margu @rlu0817 @kholden @kellyejean @elizabethlewis2852 @aoibhin @noteworthy @arbie @rickjudy2012 @justonlyjohn @monbethc and others. They may also have some info about Voice Bank programs.

Ceci, I'm sorry that you are also facing serious depression. Getting a life-changing diagnosis like PPAOS affects not only the physical, but also the mental wellbeing. It's a lot. Did you experience depression before your diangosis?

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2 replies
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Allyn | @aoibhin | 6 days ago
In reply to @colleenyoung "Welcome, @ceciford. I'm so glad that Rene directed you to this discussion group. Allow me to..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome, @ceciford. I'm so glad that Rene directed you to this discussion group. Allow me to tag other members who live with primary progressive apraxia of speech (PPAoS), like @ledmison @merrychristmas @101margu @rlu0817 @kholden @kellyejean @elizabethlewis2852 @aoibhin @noteworthy @arbie @rickjudy2012 @justonlyjohn @monbethc and others. They may also have some info about Voice Bank programs.

Ceci, I'm sorry that you are also facing serious depression. Getting a life-changing diagnosis like PPAOS affects not only the physical, but also the mental wellbeing. It's a lot. Did you experience depression before your diangosis?

Jump to this post

@colleenyoung

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2 replies
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Allyn | @aoibhin | 6 days ago
In reply to @aoibhin "@colleenyoung" + (show)

@aoibhin
I have severe depression brought my diagnosis

My diagnosis turned to corticobasal syndrome.

I taken venlafaxine and sertraline. It helps me greatly

Many of luck 🌷

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