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.

kholden | @kholden | Sep 22 3:31pm

Thank you so much for forming your group, Kellye!
I'm in!!
Kathie in Massachusetts

EL2852 | @elizabethlewis2852 | Sep 22 9:28pm

APRAXIA (PPAOS)
@elizabethlewis2852
This Beth, 72 years old, I am lived Florida.
I am retired an Architect and as Professor on 'Architecture on Spring 2020.
In Fall 2019, was I lectured my book about Sustainable Design, I cant speak long words on my book.
I visited Neurologist in my city for 2 years, the Neurologist said he doesn't the name of my disease after 2 years.
I went to Mayo Clinic on Jax. on Spring 2022, the first appt the neurologist said I have a Primary Progressive Apraxia of Speech.
My speech is declined over the last year. I was going to Speech Therapy 2 x week.
I recorded my voice on Acapela and I learned to TD Snap and TD Talk, a bit little. I learned to Personal Voice on my iphone, a bit little.
I think I can slight on Aphrasia.
I am looking forward for discussions on Support Group on Apraxia.

Rene Utianski | @rlu0817 | Sep 24 9:34am

In reply to @kellyejean "@rlu0817 seeking more info on the NAA meetings. Are those calls specific to PPAOS, or a..." + (show)

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

Rene Utianski | @rlu0817 | Sep 24 9:57am

In reply to @kholden "Thanks I'm struggling with my meds Do you have any suggestions for meds for PPAOS? My..." + (show)

The balance with side effects is so challenging! I unfortunately don't know of any medications to help PPAOS, but speech therapy has shown to be helpful in supporting communication and potentially slowing change. Have you tried speech therapy?

Colleen Young, Connect Director | @colleenyoung | Sep 24 11:31am

In reply to @elizabethlewis2852 "APRAXIA (PPAOS) @elizabethlewis2852 This Beth, 72 years old, I am lived Florida. I am retired an..." + (show)

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?

kholden | @kholden | Sep 26 4:16pm

In reply to @rlu0817 "The balance with side effects is so challenging! I unfortunately don't know of any medications to..." + (show)

Thanks Rene for your input. I started speech therapy when I noticed I had trouble with multisyllable words, 7 years.
I'm still going to speech therapy though I lost speech.
I take meds for hands tremors, mouth tics and drooping. I had success the meds until they working. I wondering if anyone had a similar experience!
Thanks again Rene!

101margu | @101margu | Sep 29 9:21am

In reply to @kellyejean "@rlu0817 seeking more info on the NAA meetings. Are those calls specific to PPAOS, or a..." + (show)

The NAA has two zoom meetings per month for persons diagnosed with PPA or PPAOS. https://aphasia.org/primary-progressive-aphasia/

aoibhin | @aoibhin | Sep 30 3:35pm

In reply to @colleenyoung "@vball91 @ls1313 @xerky1024, I'd like to invite you to the new discussion group. It's a space..." + (show)

Hi. I am Allyn.

Just diagnosed as having Primary Progressive Apraxia. After 3 years of my neurologist telling me nothing was wrong. I finally met a new neurologist who diagnosed me in 7 weeks. I thought I am going crazy. It looks maybe I am heading that way.

It seems hopeless. I am trying to live every day with hope. But it is getting harder the more I learn.

Colleen Young, Connect Director | @colleenyoung | Sep 30 7:37pm

In reply to @aoibhin "Hi. I am Allyn. Just diagnosed as having Primary Progressive Apraxia. After 3 years of my..." + (show)

Welcome, @aoibhin. What a relief to get a proper diagnosis with the new neurologist. Allow me to introduce you to @101margu @kholden @elizabethlewis2852 @kellyejean and others in this discussion group who are also living with primary progressive apraxia. Several of them have been living with PPA for many years.

Allyn, are you working with a speech language pathologist? What helps you find hope?