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

Brain & Nervous System | Last Active: Nov 7 4:35pm | Replies (45)
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@kholden

I was diagnosed with PPAOS in January 2023. I can't find any support specifically for PPAOS
I lost my speech. I feel frustrated and embarrassed

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Replies to "I was diagnosed with PPAOS in January 2023. I can't find any support specifically for PPAOS..."
John, Volunteer Mentor | @johnbishop | Aug 29 7:11am

Hello @kholden, You are not alone and I would like to welcome you to Connect so that you can share experiences, ask questions and meet others with PPAOS. @101margu mentions the Minnesota Connect Aphasia Now organization - https://mncan.org/ that has Zoom meetings and in person events for people with aphasia. Have you looked into any groups like this to see if might offer some suggestions or tips to help you manage the condition?

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Rene Utianski | @rlu0817 | Aug 29 8:24am

Your frustration and feelings are understandable- I wish we could more easily educate others about how hard this is. I've attached an awareness card and education pamphlet, if it's helpful to share with others.

Also, the National Aphasia Association holds monthly meetings for patients with PPAOS and PPA and their care partners: https://aphasia.org/stories/join-our-monthly-ppa-chats/
@101margu, have you attended these?

Shared files

PPAOS_Education (PPAOS_Education.pdf)

PPAOSAwarenessCard_condition (PPAOSAwarenessCard_condition.pdf)

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