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

I 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?

I 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.

Your 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?

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?

I was diagnosed with PPAOS in January 2023. I can't find any support specifically for PPAOS
I lost my speech. I feel frustrated and embarrassed

I was first diagnosed with non-fluent PPA in 2021, and in 2023 diagnosed with apraxia. Living with PPAOS is helped by support from others: I attend conversation groups on zoom, book club for people with aphasia, and in-person events organized by Minnesota Connect Aphasia Now. https://mncan.org/
The organization has many programs for PPA, now including PPOAS. Yay, MnCAN!!

Welcome, @101margu. sometimes it takes one person, like you, to get the discussion rolling and to give confidence to other members who have primary progressive apraxia of speech (PPAOS) to join in. I look forward to learning more about you.

How long has it been since you were diagnosed with PPAOS? What is one thing or tip you would tell someone who have been newly diagnosed? Or what do you wish people know about living with PPAOS?

I don't have PPAOS, but see a lot of patients with it. I talk to them, their families, and their local practitioners. It comes with a lot of unique challenges- it's quite different from CAS and from AOS from tumors/strokes. I wish I could connect these patients with each other to provide the support that can only come from living with this. I'm glad this space exists and I hope the right people find it to connect with one another.

Hello, I'm Jim, 53yo male, 15 years post awake craniotomy to remove a benign tumor that had grown over three inches long and a relevant size of 2 golf balls, slowly putting pressure on the right frontal lobe and other areas over it's life. Luckily the only physical issue was a wicked intention tremor of the left hand and arm for 7 years when I finally had the insurance to see an up to date MRI that was obviously encouraged by a neurologist who disagreed it was caused by my fear of how well I think I could play golf, turned Professional in 1995, same year, at 24 years of age, I had a gran mal seizure on a course and spent 3 days at USC med center that found a tiny lesion in the region that I watched with annual mri's, out of pocket of course, until 2000 when I figured, as they had told me, these are very common... just take the Dilantin and all will be ok. nope. Upon removal, every post I have read here in this forum today, has resonated with certainty because I have seen the most recent mri and it doesn't look good, but explains why my words have become so poor of choice, to say the least... fired 3 times now since 2012 and not sure I have control. My neurosurgeon sold me on the procedure because, after all, all I asked of him was, to be able to play golf again. He told me this lesion is going to kill me if it twists the brain stem anymore, next will be my left leg if not death. So, procedure success? To most who have said, "Well you're upright aren't you?" I think with the latest mri"s conclusion, not only is there extensive encephalomalacia but there is more stuff glowing in the region with measurements of lengthy centimeters and causing damage to the Basal Ganglia leading me to the real reason I don't "feel" understood. My literal words for about a year now have been, "my brakes are broken". Not only has my left foot been taking the brunt of this since the signals to left side were interupted and my foot only pushes down now and toes have completely curled into a fist and are not receiving the signal to extend(strengthen) anytime I am upright. The loop of my own self disgust/anger is similar to the angst I have when not being able to get a word from brain/mind to mouth. I have only furthered this angst by breaking down every word, literally stuck in my head ad nauseum, the same way I used to at age 24 and the perpetual fear I display all day because, my head is glued to looking down to see where this leg is going to be in only 3 less steps because, it has been getting worse for 14 of the 15 years since i returned to "ambulatory" and peripatetic, but hey, I'm upright and find myself occasionally getting some people to laugh who may actually be listening, to my conscious unconscious dithering words, as am frantically looking for now with words sometimes slipping out freudian style and creating a new relation to be. I seem to leave almost all conversations with apologies... sorry, I've regained some good coordinated strength of my left hand and arm and typing isn't just hunting and pecking as it was with one hand for about 10 years. Now I have more than 5 dithering fingertips... thank you all for your input & output and for this forum. I hope sharing helps again. It seems as though sharing has become daring. I usually think it's just me

I joined a few weeks ago, because I have PPOAS. I have not seen other people living with the disorder chime in. Maybe soon . . .