AFTD Volunteer Shares Story of Living with Primary Progressive Aphasia


Sheryl Whitman, who was diagnosed with primary progressive aphasia (PPA) in 2013, recently talked about living with the disease with dementia-care education specialist Teepa Snow in an installment of Snow’s “Courageous Conversations” series.

During the 30-minute discussion, Whitman, 57, shared how she manages and navigates her daily life with PPA. She talked in depth about first noticing her FTD-related symptoms, such as difficulties with recalling words and having trouble remembering how to do things. She explained how the decline in her executive functions have made her more dependent on her caregivers and loved ones.

“There’s plenty of times when I get frustrated,” Whitman said. “Having a daily routine [helps]. If I didn’t have that routine, I’d be lost.”

Whitman also went on to discuss how her PPA has progressed over time — noting how her symptoms may differ from others who have similar diagnoses — and how her humor has been one of her saving graces.

“Humor, that’s what keeps me going. If I didn’t have that I would probably be in [a] depressed state,” she said.

Whitman is a member of the Positive Approach to Care team — Snow’s company focused on destigmatizing dementia through “positive” education and community support. She is also an AFTD volunteer who recently participated in the volunteer-created #FTDHotShotChallenge to increase awareness about FTD.

To watch the full conversation, click here.

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