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

I'm probably in the advanced stages of PPAOS. I can only move my tongue about a quarter of an inch out of my mouth (and that with great effort). I'll check out the Brooks Rehab site. I've been traveling this route alone and some camaraderie would be helpful...in part to know just what's ahead and what has helped other people.

Forgot to "introduce" myself first. I just turned 80 this year. But I think I've had this disease since 2020 and didn'r realize the little things going on were something other than "old age." I have been a teacher of various things throughout my life...beginning at age 16. Since I have no speech at all anymore, I do some writing. I was writing "musings and devos" before this disease progressed to the point it is, so now I've gone back to doing that. It is a delight to see how a few words and a co-ordinating picture can encourage people.

@monbethc: While I am a mentor here, I am not usually on this forum but your post did get my attention. I have a very dear friend who was diagnosed with Primary Progressive Aphasia in 2020 and has since lost her ability to speak. That said, she remains quite happy, loves listening to some of her favorite songs, looking at photographs of family/friends/vacations from over the years displayed in a digital picture frame and watching reruns of favorite TV shows as well as old movies serve as her enjoyable ways to spend the day while also visiting with friends and family.

These sites can also be helpful:
https://aphasia.org/
https://www.raredementiasupport.org/ - this website has several links and films on PPA

That's wondeful you've found writing as an outlet. Do you have any encouraging words to share?

The neuropsychologist I saw rated my brain function/mental capacity as "Superior." Her comment was fun. She said "You are off the charts. I'd like to rate you higher than superior, but that is the highest ranking we have." I do a lot of word puzzles, etc. and like to read. I play several word games every day. Games like Blossom Word Game...i aim for "Mega Boss" title. Sometimes I only get Blossom Boss, but it's still fun. I want to get my husband to log in on his computer and challenge him to see who can score the highest. (He has a very high IQ). I was told over the holidays by many people that I was the most joy-filled person they know. I think a positive attitude helps even during difficult days. I'm thankful for what I do have. With each person, their place of peace, calm, and happiness will be different than mine. I was asked to write a meditation on "Joy" for a Christmas women's group. They were going to read it. But I suggested I have my daughter come. She did a great job reading it and people were so encouraging. My physical mobility is quite limited, but if I have to sit in a chair all day, I can still enjoy doing fun things.

@monbethc: that's wonderful! And I admit to my error in conflating PPAOS with PPA; two very different conditions. I'll leave my comment with links above in the event it may be helpful to others who may do likewise and find those helpful.

@grammato3
Whoever wants to know the difference between Aphasia vs Apraxia —-
Aphasia is a language disorder affecting word finding, understanding, or writing stemming brain damage from language centers of the brain .
While apraxia of speech is a motor speech disorder where the brain struggles to plan or coordinates the muscle movement for speech, even if the muscles are strong.
Think of aphasia affect the ability to find words , while apraxia a difficulty in saying those words
Different aspects of communication .
Although they can occur together .

My wife has been diagnosed with primary progressive aphasia & mild cognitive decline. She is 78 years old, physically active & healthy.
I am 80, have late stage COPD, & on oxygen 24/7 except when sitting still to read, watch TV, etc.
She has been to Mayo Jacksonville twice this summer & has been to many speech therapy sessions here at home in Arkansas. She is now almost non-verbal & communication, even between the two of us, is increasingly difficult.
However, both our conditions are progressive & I don’t know how long we can continue living at home.
We are care partners for each other. We’ve been married for over 13 years & bmnever anticipated growing old together would be like this.

@rickjudy2012 Hello I just happened to read your posting. I’m Becky, a mentor for the Caregiving Support Groups. You said that living at home has gotten to be difficult and that you never anticipated growing old together would be do difficult or “like this.” Have you thought about assisted living? You would have a small apartment in a long term care/rehabilitation facility. The home makes all your meals, provides O2, and probably has physical therapy.
https://connect.mayoclinic.org/discussion/assisted-living-memory-care-how-did-you-find-a-good-facility/. Here is a discussion on assisted living. If you have questions, go to the Caregivers discussion group and ask the persons there. Here is the link.
https://connect.mayoclinic.org/group/caregivers/. I wish you the best!

@becsbuddy I genuinely appreciate your reply & value your comments.
Since, as of late, our conditions both seem to be rapidly deteriorating, we are now “scrambling”, along with help from my son & daughter-in-law to investigate different assisted living facilities. We are a couple years late concluding that assisted living is our most reasonable option, & are trying to find a suitable place & “start the ball rolling”.
Thank you again, & all prayers would be appreciated.

My name is Linda and I was diagnosed with PPAOS last March, though I had trouble speaking for about 2 years before that. We just moved to Albany, NY from Oklahoma 2 months ago to be closer to our daughter. I dread meeting new people. I dread phone calls. I have found a speech therapist that I like. I can make myself understood for now-but it’s very slow.