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

@vball91 @ls1313 @xerky1024, I'd like to invite you to the new discussion group. It's a space where you can share the experiences of living with apraxia, honestly and openly without judgement.

Whether you have apraxia yourself or are caring for someone who does, please join in. Pull up a chair and tell us a bit about yourself.

Hi, I’m Laurel. I’m the mom of a daughter with CAS. She was diagnosed at age 3 & is now 21. She had speech therapy from age 3 to age 19 when she graduated from high school. In the nearly 3 years since high school, her speech quality has slowly declined. She still speaks well enough to be understood by others, but I can tell they are listening more intently now.

Hi Laurel, 21 is a special time of life when kids are making their own path. As a mom, it must be hard to witness the slow decline in her speech again. Has your daughter considered restarting speech therapy? Or is she reluctant to return?

Gabby does NOT want to return to any type of school situation. She didn’t do well, so she loved finishing! Gabby has fetal alcohol syndrome due to her birth mom’s drinking. We adopted Gabby at 25 months (along with a new brother—not bio-related—8.5 months old). We brought them to our home outside Detroit, Michigan in November 2004. The kids are from Kaliningrad, Russia. They are our only kids & both were prenatally exposed to alcohol.

At 21, Gabby’s emotional age is about age 8. She is unemployable, receiving SSI and has a food card. She helps around the house because I developed fibromyalgia 2 years before Covid.I want to take her somewhere to volunteer, but I also don’t really want to be Mom-taxi again. LOL! Gabby doesn’t want to learn how to drive: Everything goes too fast! She’s also afraid to try to get a job. The 3 jobs she got called back for interviewing all wanted her to be a cashier. She can’t count coins, so while the register might tell her the amount of change to give back, she can only do dollars. 🙁 (not for lack of trying…we used to play Grocery Store or Toy Store daily) She DOES want to make more friends, but refuses any group or volunteer position I suggest.

Sigh…it’s been a tough 20 years, but I wouldn’t trade those years for anything. I learned SO MUCH from our kids! I even taught doctors about fetal alcohol syndrome, apraxia, childhood depression, anxiety and preverbal trauma.

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

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 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.

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 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!!