Ambassador Stories
April 8, 2021

These Partners On and Off the Dance Floor Are Pushing for PSP Research Together

Featured image
Diane and Wayne used to be ballroom dancers. Now, Diane doesn’t have the muscle control or balance to dance.

Diane and Wayne recently began seeing an occupational therapist to see how Wayne was managing as a caregiver for Diane, who struggles with walking and balance control as a result of her rare disease, progressive supranuclear palsy (PSP). Wayne remembers the therapist was quite amazed and said she could tell Diane and Wayne were dancers because they are able to sense each other’s bodies and move together so well.

Seven years ago, Diane began experiencing balance issues. During a vacation, Diane had suffered a random fall which doctors thought was due to the arthritis Diane had in her knees. However, after Diane had two additional falls in 2019, which resulted in cracked ribs and a broken collarbone, it was clear something more was at play. A neurologist suggested Diane may have some type of Parkinson’s disease, but after additional testing an MRI showed that Diane had PSP, a rare brain disorder similar to Parkinson’s but with significant differences.

Both PSP and Parkinson’s cause movement difficulties, stiffness, and clumsiness, but PSP is much more progressive and degenerative. Problems with speech, eye movement and swallowing are usually more significant in PSP patients. Because of the similarity in symptoms, PSP is often misdiagnosed as Parkinson’s.

Diane’s diagnosis came as a shock to everyone. Her children knew she had difficulty walking, but it didn’t seem like it impacted her life all that much. For Diane’s 75th birthday, she and Wayne traveled to Disneyland, and later that year went to Germany. “We were still walking through the streets of Berlin,” Wayne remembers.

After Diane was diagnosed with PSP, she and Wayne sold their house and moved into a retirement home. It was early 2020 and the couple immediately had to go into a two-week quarantine due to COVID precautions. Afterward, it became challenging for them to meet other residents in their home because of the restrictions.

To date, Diane’s most significant PSP symptom is trouble speaking due to lack of muscle control. She’s currently undergoing speech therapy with a speech pathologist and online through the Parkinson Voice Project. “It’s been helping a lot,” Diane says.

Diane does her best to stay active, participating in a weekly workout program at the retirement home. In the last few months, the couple have also been able to meet some other residents and attend socially-distanced activities.

Wayne explains that because of Diane’s mobility and speech problems, people assume she is cognitively impaired, which she is not. “She is regularly playing Scrabble and word games on her computer which require mental skill. But she didn’t beat me at Rummy last night, which she usually does,” Wayne jokes. He finds it frustrating that people speak loudly and slowly to his wife because they assume she is having trouble understanding and wishes people would speak to her normally.

Diane is an ambassador for the AllStripes’ PSP program, growing knowledge about the condition by sharing her de-identified medical records. Additionally, she is currently participating in a multi-institutional research study for PSP and is a candidate for future clinical trials. “We’re very supportive of research,” Wayne says. Not enough is known about PSP or how to treat it, but Diane and Wayne are doing their part to change that.

If you have been impacted by
learn more about the benefits of joining AllStripes
by visiting our
research program page.