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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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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.
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9 ReactionsHi 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?
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2 ReactionsHi, 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.
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3 Reactions@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.
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