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Have you got Primary Progressive Apraxia of Speech? Let's connect
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?
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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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2 ReactionsYour 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?
PPAOS_Education (PPAOS_Education.pdf)
PPAOSAwarenessCard_condition (PPAOSAwarenessCard_condition.pdf)
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3 ReactionsI have attended NAA zoom meetings, and get good information from their programs. Seeing other people with PPAOS or PPA allows me to feel less "stuck alone". We discuss some serious things, but mostly encourage each other to communicate in other ways. Very helpful! The programs are led by Speech Language Pathologists.
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2 ReactionsI think I have this, but haven’t been officially diagnosed. It gets worse when I’m tired or stressed! I have had MRI’s done and PET scan and perhaps mild Alzheimer’s, but don’t have any of those symptoms. I have difficulty with enunciation and slow talking and some balance while walking issues. I see a speech pathologist next week and Finally seeing Neurologist end of September. How do I find out if I have this condition for sure? I’m frustrated and find it hard to say words that are in my mind, especially certain words! Any suggestions?
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3 ReactionsThe 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.
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3 ReactionsThank you-very helpful! Between Neurologist and speech therapist, hopefully will get more definitive answer!
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2 ReactionsThanks
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!
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1 ReactionI have ppaos
Let's "talk"
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
@rlu0817 seeking more info on the NAA meetings. Are those calls specific to PPAOS, or a variety of FTD?
Ty - Kellye
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