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

Posted by Colleen Young, Connect Director @colleenyoung, May 20, 2024

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.

merrychristmas | @merrychristmas | Feb 1 11:58pm

In reply to @colleenyoung "Welcome, @ceciford. I'm so glad that Rene directed you to this discussion group. Allow me to..." + (show)

@colleenyoung gabapentin is not the first line of treating depression . Some research studies questions if it is an antidepressant . It is commonly used for seizure , restless leg syndrome etc

ledmison | @ledmison | Feb 2 11:46am

I need a neurologist in Albany, NY or New York City. We just moved to the Albany area to be closer to our daughter who lives in Brooklyn. I haven’t found a neurologist yet. I don’t mind commuting to the City (I could plan around visits to my daughter). Surely there’s a doctor in NYC who’s aware of PPAOS. Any names would be appreciated!

ceciford | @ceciford | Feb 2 2:37pm

@aoibhin
I have had depression for many years of my adult life but deeper depression since I retired (early) in 2017.

ceciford | @ceciford | Feb 2 3:11pm

In reply to @merrychristmas "@ceciford it can cause slurred speech. Why are you on it?" + (show)

@merrychristmas
Gabapentin was originally prescribed to prevent headaches, but then added to that, it was prescribed to lessen nerve pain down my legs generated by cysts in my lumbar spine. As I am not taking it currently, I have more nerve pain down my left leg.

Allyn | @aoibhin | Feb 2 3:25pm

In reply to @ceciford "@aoibhin I have had depression for many years of my adult life but deeper depression since..." + (show)

@ceciford
Me too!

Any prescriptions?

Rene Utianski | @rlu0817 | Feb 2 7:04pm

In reply to @ledmison "I need a neurologist in Albany, NY or New York City. We just moved to the..." + (show)

@ledmison I hope the move goes smoothly! I don't have any specific recommendation, but the AFTD might be able to help: https://www.theaftd.org/find-support/ (frontotemporal degeneration support group and diagnostic center locator). If the AFTD doesn't have one, they might be able to connect you with a peer living in the areas. Did you ask your current neurologist if they have anyone in their network?

ledmison | @ledmison | Feb 3 12:03pm

In reply to @rlu0817 "@ledmison I hope the move goes smoothly! I don't have any specific recommendation, but the AFTD..." + (show)

@rlu0817 thank you! I’ll check that out. And no - my current neurologist didn’t know anybody in New York.

Colleen Young, Connect Director | @colleenyoung | Feb 5 8:53pm

In reply to @johncorvino "An essay I wrote for People magazine about my journey with PPAOS, and I wanted to..." + (show)

@johncorvino, you will be able to post links in a short while. Allow me to post the link for you:
- I Traveled the World as a Public Speaker. Soon I May Be Unable to Talk https://people.com/public-speaker-soon-i-may-be-unable-to-talk-john-corvino-exclusive-11893529

Powerful story. Wonderful triumph of acceptance and being able to pivot your career.

The sentences that rang out loud for me were the following:
"I feel like a prisoner in my own thoughts: speaking is difficult, so I often don’t. I worry that my silence comes across as cold, unfriendly, and distant. When I do speak, I worry that my halting cadence will lead people to suspect slow thinking."

I'd like to pull the thread on that part a bit more. I think your concerns about your silence or halting cadence are shared with others in this group. What approaches or tips have you found helpful in explaining (or not) your silence and manner of speech so that people still see the intelligent, vibrant, engaged you?