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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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I was diagnosed with PPAOS this month by a neurologist at UNC. I noticed a couple years ago I had trouble speaking some words. I knew the words, but it was hard to say some words. I had a brain MRI a year ago, but nothing showed up to explain the cause. I’ve been doing speech therapy for over a year now. I feel like it helps, but it’s frustrating - I know the words, but it’s hard to say the words.
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1 ReactionI have ppaos
My MRI was normal.
My PET scan showed abnormalities in left frontotemporal lobe, which controls speech
Your neurologist should order a PET scan.
Hope that helps!!
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3 ReactionsI was diagnosed in Sept after 4 years of getting worse.
When I did traditional speech therapy it was frustrating. Didn’t hold my ground much less getting better. Now I speech therapist who specializes in neuro degenerative problems. She has done other things that help me. I know it will get worse over time. It is my brain not the right signals to my mouth. But if I can anything to help, I will do it.
Welcome. We all know this diagnosis feels.
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3 ReactionsThank you for your response. Agree - the right speech therapist makes a difference! My first round with a speech therapist was okay, but now I see a speech pathologist who specializes with neurological problems. I can see the difference! I’ll keep up with speech therapy - I’m not a quitter!
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2 ReactionsMy husband has been diagnosed with apraxia but doesn't want to admit it or perhaps doesn't understand it. He has MCI which he is refusing to address too.
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1 ReactionI sorry that you are having to deal with this and his diagnosis. It is a lot to absorb. Who has told him? Neurologists are not the best messenger. Are you getting support?.
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1 ReactionI have not been diagnosed yet but i am sure i will before long.This is exactly what i got but not all the time.It just happens sometimes.I have been to neurologist,xrayed and cat scanned to tell me i am good except some dead brain cells on left side.Its aggravating when i know what i want to say but can't get it out.
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1 ReactionMy first neurologist said nothing wrong with my brain. Then the second neurologist opened my MRIs both them clearly showed I frontal atrophy. I am a doctor, but dead brain cells are not normal. Can you get another neurologist?
It is a a lot to handle
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1 ReactionAs a matter of fact i am going to a new Dr. wednesday
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1 ReactionHi @larry68, what did you learn at your recent appointment? How are you doing?