Daughter stumbles on her father’s rare disease diagnosis while studying PSP in class
UpdatedOctober 10, 2019

Dayna’s studies as a speech pathologist helped her push for a diagnosis for her father’s neurological condition, and gave him a voice as the disease progressed.

By Catherine Cooke Dayna and George

Dayna, a speech pathologist who has devoted her life to helping people communicate, never thought she would need to use those skills for her own gregarious father, with a “larger than life personality.”

At age 63, her father George Hlinko began to experience dizziness and difficulty swallowing and balancing. Dayna was alongside him for many of his doctor appointments and grew ever more frustrated with a system that didn’t see the bigger picture of his symptoms.

“You run into doctors or physicians’ assistants who do not take into account patient or caregiver reports as much as they should,” Dayna said.

His options for care were also extremely limited with her father living in a rural area, and nobody seemed able to identify what was wrong.

An important clue uncovered

During this same period, Dayna was in school to become a speech pathologist and studied a disease called progressive supranuclear palsy (PSP) in a neuroscience class. At the time, she was unsure if that was the disease her father had, but it shared many of the same symptoms and gave her a clue that what he had may be neurological.

Dayna pushed for a referral to a neurologist, but no one wanted to give her one because “it was the last specialty on the list.” She broke down, feeling like no one was listening to her.

“It came to the point where I met with the nurse in the room, and I cried. I said...I know something is going on with his brain. You’ve checked everything else,” Dayna said. “The nurse turned to me and said, ‘Thankfully I listen to my patients and caregivers.’”

That was the turning point. At the very first appointment with the neurologist, he was diagnosed with PSP— only two and a half months after Dayna had studied it in school, but nearly two years after his initial symptoms. Additionally, he received a second diagnosis of corticobasal degeneration (CBD).

By that point, he was already in the mid-stages of PSP and CBD, both incurable brain disorders, and his balance, cognitive ability, and speech were all severely impaired by the diseases.

Like being ‘trapped in your own body’

Dayna describes PSP as “being trapped in your own body” and found doctors and even herself forgetting to include George in decision making.

“People that have neurodegenerative diseases cannot communicate verbally, but it doesn’t mean that they cannot communicate,” Dayna said.

Medical staff were misreading George’s nonverbal cues and just thought he was in pain, but Dayna’s training as a speech pathologist helped her father regain a voice in his medical journey.

Dayna used a mixture of speech apps, picture exchange communication, and Yes/No cards to help her father explain himself so that the doctors wouldn’t jump to conclusions that he was in pain and overmedicate him.

She believes this helped extend his life and improve his wellbeing for his remaining years.

Building a legacy

In 2019, George tragically passed away from the symptoms of PSP and CBD, four years after receiving his diagnosis.

In honor of her father, Dayna has established the PSP & CBD Foundation to raise funds for research, support others with PSP & CBD, and advance awareness of the diseases. If more doctors knew about these diseases, Dayna believes her father would have received an accurate diagnosis sooner, which could have improved his quality of life and allowed him to participate more in his own treatment plan.

That’s part of why Dayna’s family has contributed her father’s records to RDMD, to increase understanding of PSP and to accelerate research. She has also made a point to share RDMD with the PSP & CBD Foundation community.

“RDMD is patient-driven, to help improve treatments in finding a cure for rare diseases,” Dayna said. “We as a nonprofit [the PSP & CBD Foundation] definitely want to further research for treatments and a cure, and we always want the people in the support groups and our community to know the options that are out there.”

George was “passionate about his community and helping others,” and his legacy will certainly live on. He donated his brain to the Mayo Clinic and the information in his records will help teach others about PSP.

Thanks to these actions, the PSP & CBD community will benefit for years to come as the fight for a cure and better treatments continues.

If you are a patient, or family member of a patient, with PSP and are interested in contributing to research from home learn more at rdmd.com/psp.

Originally posted at October 10, 2019

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