The NAA set up a task force to increase our resources and outreach for people with primary progressive aphasia (PPA). The PPA Task Force started a twice-monthly PPA-focused chat for people with PPA and their caregivers (and friends and family). Professionals who work with people who have PPA are welcome to join, too. The chats are lead by Becky Khayum, M.S., CCC-SLP, a speech-language pathologist, and Lauren Wisniewski from the NAA board of directors.
Becky is a speech-language pathologist who specializes in providing person-centered care for people living with primary progressive aphasia. Lauren is a board member who has worked with a range of nonprofit organizations in roles from prospect analytics to event management to fundraising.
Becky provided an overview of PPA at our first chat and answered general questions about PPA. If you missed the chat, you can access the slides from the presentation on her professional site.
She explained that PPA is a “dementia syndrome characterized by changes in language, comprehension, reading, and writing that get worse over time.” Moreover, if the “early symptoms include other cognitive areas (memory loss, behavioral changes), the diagnosis is not PPA.”
It frequently begins between the ages of 45 – 64, and it impacts both men and women equally. The rate of progression differs from person to person, with life expectancy ranging from 2 – 20 years from the onset of symptoms.
Finally, we went through treatments. Though there are no disease-modifying treatments for PPA, you can treat the symptoms with speech therapy or medication.
There is no signup for the PPA chats. We send the Zoom link when we announce the chat and then send it again two days before the call. Join the PPA chat mailing list by filling out your information, and you will receive the next mailing that goes out.
We do not record our chats, so you will need to attend the chat to view or participate in the chat.
All of our chats are open to anyone with primary progressive aphasia, their caregivers (as well as friends and family), and professionals who work with people who have PPA.
Because PPA is a progressive disease, we have two chats each month—each for a different stage of experience. You may want to try each group to find which one best fits your needs, or you can always choose to attend both groups each month.
The discussion and topics for the first chat are geared towards people with PPA and caregivers who are earlier in their experience with the disease. The discussion and topics for the second chat are geared solely towards support for caregivers (and friends and family) for people with primary progressive aphasia.
The NAA set up an email hotline for primary progressive aphasia questions. If you have questions about PPA, you can email [email protected], and a volunteer will make sure your question is answered.
We’ve also created an overview of PPA to help you understand the disease. The post includes many links at the end to additional information.
You can also download slides that give an overview of clinical studies for PPA.