Today we are sharing the perspective of a care partner. Lisa shares her TAP experience below.
I don’t know where we would be right now without the Triangle Aphasia Project (TAP).
It’s been a little over a year since Frazier was officially diagnosed with Primary Progressive Aphasia (PPA). As I think many of us do, after Frazier’s initial diagnosis I dove headfirst into researching PPA.
To put a name to what was happening was a relief, of course. It did not, however, alleviate the heartache of watching the most outgoing person I had ever met go from radiating joy and lighting up every room with laughter to someone who rarely smiled, never laughed, and became crippled by sadness and insecurities.
In talking to others and reading about PPA, a common theme that began to emerge was the importance of Community. Diving a little deeper led me to the website for the Triangle Aphasia Project (TAP).
After the initial client intake with TAP, we started joining the Virtual Progressive Aphasia Group with Olivia on Wednesdays and I began joining the Virtual PPA Care Partner Group with Abbe. I cannot overstate how instrumental these groups have been in helping us navigate this complicated new world.
The Wednesday group has allowed Frazier to find his voice again. He has a safe place where perceived challenges aren’t judged but, instead, embraced as opportunities. Olivia meets each person where they are at any given moment. She has such positive energy and has an innate ability to fully engage with each individual and make everyone feel validated.
The group is intended to include care partners for which I am grateful. It has been such a joy to watch Frazier not only laugh again but to see him reminded of the joy that comes from making other people smile.
The Virtual PPA Care Partner Group with Abbe has been equally important for me. It’s somehow freeing to spend an hour with a small group of people who share in the confusion of the PPA diagnosis. There is kinship in knowing that we are all doing our very best in each moment and admitting that we sometimes fall short, and that it’s okay.
It’s easy to concentrate on what has been lost and sometimes it’s difficult to find peace in this new reality. Abbe does an amazing job of recognizing these feelings while encouraging everyone to celebrate the small victories, helping us find creative alternatives, and reminding us to always nurture Self.
We have found Community with TAP. And for that we are both deeply grateful.