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

Finding the right neurologist--one who specializes in neurodegenerative disorders--was key. Mayo Clinic resources have been useful, as has the PPAOS Friends virtual support group run by Jackie Hurst out of Brooks Rehab in Florida.

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I hope you can connect here with some people! I know there are benefits to a chat like this and also to a "face to face." I am hoping we will have the second option, soon-- in the meantime, have you found the support groups through the NAA, Vanderbilt, or Brooks Rehab? There are some posts with more information but let me know if you need help finding them.

Patience can be challenging and is so important to try and remember- both for her and yourself! I am sorry to hear the speech therapy wasn't helpful. Was it addressing things that were giving her/ you trouble day-to-day? Trying to focus on making things better, or easier to deal with? Were you included at all to learn some other strategies that might help?

I wish I knew more about the insurance side of things to confidently help. Those tests are more data for information you already have, so I will cross my fingers for you that it doesn't impact things. Did you get any more information to share?

Thanks for your thoughtful post and sharing about writing your memoir- what a beautiful gift! Are there any resources or tools that have been especially helpful as you've navigated this diagnosis? Or information you're searching for that you haven't found?

Hi. I'm a 56-year-old male who was recently diagnosed with PPAOS. My original diagnosis was FrontoTemporal Dementia (FTD), which was terrifying. My new neurologist assures me that I am by no means at the "dementia" stage of FTD; he was the one who, in conjunction with my Speech Language Pathologist, diagnosed the PPAOS. I wish the previous neurologist had told me that I had "FrontoTemporal Degeneration": "degeneration" is a much less frightening word (to me) than "dementia."

For many years I had a flourishing and lucrative public speaking career--which makes the speech apraxia all the more frustrating. I've lectured at over 300 universities around the world, and my YouTube channel has nearly 3 million views. For nearly three decades I've been a professor at a large public urban Midwestern university; I was also a dean for seven years, but I stepped down from my deanship and returned to faculty shortly after my FTD diagnosis. I plan to teach asynchronous online courses using voice banking technology (asynchronous courses do not meet at set times; students complete modules at their own pace and participate in discussion boards). Fortunately, my university has been very accommodating.

I am on paid leave until January, and then I will return to teaching. I am currently enjoying the beautiful Midwestern summer while I work on a book on free speech and civility. I've also begun a memoir to discuss my FTD/PPAOS journey. I never thought my life was interesting enough for a memoir, but for someone with a thriving public speaking career to develop speech apraxia--let's just say I've found my "hook."

I am doing speech therapy each week. I can’t speak. I used to speak with my iPhone's personal voice, speech assistant, or text-to-speech.
Dr Tanner said I could test the Amyloid PET, one last year.
I am new health insurance is moving.
I am moving from Tallahassee, FL to Falls Church, VA, next year, to be near my son and daughter.
I am new to health insurance and am moving to Virginia.
I HAVE QUESTION TO
DR RENE:
The Amyloid PET results in a large amount of amyloid!
Can I do the new health insurance if I test for higher amyloid? Or a higher premium?
Thanks to all!

My wife has been diagnosed to have primary progressive aphasia.
She had a bad fall in November of 2019 & was hospitalized for two weeks. She had fractures to bones on either side of her head. Upon returning home, she suffered frequent bouts of nausea & dizziness, but I learned the Epley maneuver &, over time, her problems went away.
Her ability to speak articulately never declined for over two years; after seeing a neurologist, DJ was given the diagnosis.
Over the past two years or so her ability to speak fluently & to process the words she hears from me has declined immensely. She has s en a speech therapist weekly for a couple of years, but there is no evidence that it is helping.
A second neurologist determined that she had mild cognitive decline, but no tumor & no dementia.
She is 78 years old, physically fit & active, manages all her household chores, cooks, etc.
However, our communications are really limited & I have had to learn to be very patient.
She reads, but it is very slow & deliberate.
I would be interested in your condition, issues & any input you would care to offer.
Thank you.

After two years of tests and exploration rI finally received a diagnosis of PPOAS in March 2025 Speech is becoming more effortful and difficult for others to understand easily. This very frustrating and there is so little information about this condition.. I would love to connect with others and share strategies and feelings.