A Note from Maura
When I started the Triangle Aphasia Project, we assumed that most of the individuals referred for services would be those who had suffered a stroke or other traumatic brain injury. But I’ll never forget one of the first visitors to our Grand Opening. Her name was Elizabeth and she had read the announcement in the local newspaper. She arrived with said newspaper tucked firmly under her arm and proceeded to point repeatedly at the word “aphasia”, saying “I have that! I have that!” Her story, at the time, was unique…uncertain as to the insidious and frustrating loss of her words, she sought neurological evaluation and was diagnosed with Primary Progressive Aphasia (PPA); a type of Fronto Temporal Degeneration (FTD). Considered rare, but proving less so after almost two decades of service, PPA became a common diagnosis for our organization. So much so, that TAP has a special set of programs just for this population…TAPLinks.
TAPLinks provides a weekly program as well as a support group for those who love someone with aphasia as a result from PPA/FTD. Unlike aphasia resulting from stroke, individuals with PPA/FTD understand that their journey is one of challenging losses, changes in all modalities of language (reading, writing, listening and speaking), and a slow onset of cognitive deficits. TAP hopes to provide a network (Links) within and outside of the TAP community to serve these families with a caring, compassionate and comprehensive manner.
Today’s story allows an introduction to PPA/FTD with input from a couple who recently learned of this type of aphasia. We are so happy to have Jim and Arlene welcomed into the TAP family early in their journey and commit to helping them along this road. This wonderful couple has taken advantage of many of TAP’s offerings!
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Jim Baker
From Jim:
My wife, Arlene, and I retired from positions in higher educational publishing. We were on track to use our time traveling together, but about two years ago I began to experience communication difficulties. My primary care physician directed me to the Neurology Department at Duke. Testing revealed I didn’t have a stroke, but I was diagnosed with Frontotemporal Degeneration and Expressive Aphasia. What a shock!
From Arlene:
In hindsight there were signs of Jim’s condition: mispronunciation of words, difficulty concentrating, losing his train of thought in conversation. Fortunately, Duke Neurology led us to speech therapist, Sarah Stidham, who told us about TAP. We contacted Maura Silverman and were invited to participate in TAPLinks discussion group. Because of COVID concerns the group, facilitated by Kaylea Nicholson, has met on Zoom which worked out perfectly for us. Jim has always been an excellent student and preparing for this group meeting has given him something not only to study for, but also the opportunity to share memories and conversation with other participants and their caregivers. Now, we both look forward to our Monday TAP session.
I also recently took the “Learning to Speak Aphasia” session, and learned so much. I started implementing the communication strategies with Jim immediately. We are so thankful for all the resources TAP provides.
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From the Home Office
12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.
Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.
Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.
Thank you for your faith in our organization and for supporting the 12 Days of TAP!
Ways to Donate
- Text “tapholidays” to 50155
- Visit aphasiaproject.org to make a one-time donation
- Join our Ice Breaker Club to become a monthly donor
- Donate on our Facebook Fundraiser and share with your friends
- Print and clip the form below and mail a check
- Make a donation of stock; email us for more information