The NAA set up a task force to increase our resources and outreach for people living with primary progressive aphasia (PPA) and primary progressive apraxia of speech (PPAOS) and their care partners. These resources include virtual chats for people with PPA/PPAOS and their care partners (family and friends).
Our PPA chats provide an opportunity for people living with PPA and their care partners to connect, share stories, and provide support for one another. Our facilitators are speech-language pathologist clinicians and researchers who have extensive experience working with people living with PPA. The chats also provide education about PPA with short presentations and guest speakers.
There are two PPA chats each month. They are always on Fridays at 2:30 pm ET, but the Fridays vary due to the facilitators’ schedules. You will receive an email from the NAA each month with the upcoming chat schedule if you have signed up for the chats on the NAA website (see below).
The first chat of each month is just for people living with PPA. We divide into different breakout rooms depending on the variant of PPA or people’s symptoms. This helps them to better identify and chat with the people in their room. It is fine if a care partner sits next to the person with PPA and provides assistance for communication during the chat. For example, they might help to fill in a missing word to better help the person to get their message across.
The second chat of each month is for people living with PPA AND their care partners. We have two breakout rooms for this chat. The first room is for people with PPA and their care partners. It is a good fit for people who have been more recently diagnosed. There is a second breakout room that is just for caregivers who would like to speak with other caregivers. It’s a good fit for care partners who are caring for a loved one. They often have been coping with the diagnosis for more than 3-4 years.
The chats follow this set format:
- Everyone meets as a group at the beginning of the chat. We give important updates and explain the format of the chat.
- We welcome new members to the group and ask them to raise their hands. They can tell everyone their name and where they are from if they are comfortable with introducing themselves.
- Sometimes there is a short presentation about a particular topic, or we may have a guest speaker.
- We divide into our breakout rooms. The facilitators help to move everyone to the correct room.
- In the breakout room, there is usually a general question to begin the discussion. For example: “Have you shared your diagnosis with your family or friends? If so, was it helpful?” Participants can engage in the conversation or just listen. No one is put on the spot. The rest of the conversation is an open discussion. Participants can express questions or concerns to the group, and then they discuss them together.
Again, 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.
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.