Today’s story was written by a caregiver of someone with primary progressive aphasia (PPA):
In the fall of 2020, my spouse, Karen, started to complain about losing words – which we both initially attributed to “aging” coupled with the stress of the first year of the pandemic. But as the months passed, it was clear that something wasn’t quite right. Like many folks before us, we entered what felt like a lengthy phase of medical appointments and testing, only to one day be told that Karen has Primary Progressive Aphasia. Fortunately, before leaving the UNC neurologist’s office that day that we received the diagnosis, she handed us a brochure for TAP and said, “You need to contact this group. They’re great.”
I can’t overstate the importance of the Triangle Aphasia Project. We were able to set up a consultation with Maura Silverman in fairly short order and within a couple of weeks of that meeting we attended – along with a number of good friends – the “Learning to Speak Aphasia” webinar. Maura and the TAP team also provided us with additional information and pointed both of us to helpful resources. We connected with SLP Abbe Simon, who has been working with Karen and me for over a year now. And Abbe then connected me with the TAP Care Partners Group where I’ve received much-needed support as well.
I learned very quickly after Karen’s diagnosis that I was in over my head just trying to understand PPA, let alone how to be a helpful spouse as Karen and I navigate this journey together. I’ve stumbled a lot, but the support of others in the TAP Care Partners Group helps me enormously. I not only learn a lot from others in the group, but I don’t feel so alone. I’m grateful every day for the resources that TAP provides!