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

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?

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

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.

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

@rlu0817 seeking more info on the NAA meetings. Are those calls specific to PPAOS, or a variety of FTD?
Ty - Kellye

Hello @colleenyoung , @kholden, @101margu, @rlu0817

My name is Kellye - diagnosed with PPAOS in 2023. As there was no support group at that time - I started a biweekly Zoom support group for people that have been diagnosed with PPAOS. Formation of the group has been supported by 2 PHD SLP candidates from Vanderbilt. The group is for those whose diagnosis is PPAOS — whether their diagnosis is still solely PPAOS or has progressed to include some other condition as well.

Primarily we meet and “talk” (verbal or via chat, some people just listen) about how each of us is doing and try to help each other with challenges. We’ve also had guest speakers ( such as Vanderbilt neurologist who specializes in sleep and a MBSR certified instructor talking about the benefits of incorporating mindfulness into your day).

We meet online every other Sunday, and the meeting is for those with the diagnosis to share what is going on with them and to talk to others who “get it”. A few members bring their partners who may do the speaking for them. We would love to have some new members to welcome and support - you are not alone, though many times it may seem like it.

I’m in the Twin Cities (Burnsville, for 101margu info!) but we have members across the US and 1 from BC Canada.

Let me know if you are interested in joining us!

Best to all - Kellye

I have ppaos
Let's "talk"

Thanks
I'm struggling with my meds
Do you have any suggestions for meds for PPAOS?
My MGH neurologist has tried many different medications. They work for awhile. Other meds, side effects were worse than the symptoms!!
Thanks! Any help would be greatly appreciated!

Thank you-very helpful! Between Neurologist and speech therapist, hopefully will get more definitive answer!

The experience of AOS is frustrating enough when you have an answer, let alone when you don't. I've seen a number of patients who diagnose themselves before providers/tests catch up. Our team tries to support education so more people affected by this can get the right answers and more quickly.

Speech pathologists are able to recognize and diagnosis apraxia of speech and distinguish it from aphasia or dysarthria (a different motor speech disorder). I hope that between your speech pathologist and neurologist you will get some answers soon. An FDG PET scan is the test we have found most sensitive to brain changes associated with this. If that's not the type of PET scan you've had before, it might be worth inquiring about.