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Have you got Primary Progressive Apraxia of Speech? Let's connect
Brain & Nervous System | Last Active: Nov 7 4:35pm | Replies (45)Comment receiving replies
@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.
Replies to "@vball91 @ls1313 @xerky1024, I'd like to invite you to the new discussion group. It's a space..."
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
Hello @colleenyoung , @kholden, @101margu, @rlu0817
My name is Kellye - diagnosed with PPAOS in 2023. As there was no support group at that time - I started a biweekly Zoom support group for people that have been diagnosed with PPAOS. Formation of the group has been supported by 2 PHD SLP candidates from Vanderbilt. The group is for those whose diagnosis is PPAOS — whether their diagnosis is still solely PPAOS or has progressed to include some other condition as well.
Primarily we meet and “talk” (verbal or via chat, some people just listen) about how each of us is doing and try to help each other with challenges. We’ve also had guest speakers ( such as Vanderbilt neurologist who specializes in sleep and a MBSR certified instructor talking about the benefits of incorporating mindfulness into your day).
We meet online every other Sunday, and the meeting is for those with the diagnosis to share what is going on with them and to talk to others who “get it”. A few members bring their partners who may do the speaking for them. We would love to have some new members to welcome and support - you are not alone, though many times it may seem like it.
I’m in the Twin Cities (Burnsville, for 101margu info!) but we have members across the US and 1 from BC Canada.
Let me know if you are interested in joining us!
Best to all - Kellye
Hi. I am Allyn.
Just diagnosed as having Primary Progressive Apraxia. After 3 years of my neurologist telling me nothing was wrong. I finally met a new neurologist who diagnosed me in 7 weeks. I thought I am going crazy. It looks maybe I am heading that way.
It seems hopeless. I am trying to live every day with hope. But it is getting harder the more I learn.
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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I joined a few weeks ago, because I have PPOAS. I have not seen other people living with the disorder chime in. Maybe soon . . .