A PSP patient faces his rare-disease reality: ‘There really isn’t anyone else who understands’

UpdatedJune 4, 2020 · 2 minute read

Gary was diagnosed with a rare disease that often presents symptoms similar to Parkinson’s disease. He’s struggled with the condition, but also the feelings of isolation and frustration that accompany the symptoms.

By Catherine Cooke Gary

“Be ready for some big change, buddy,” is what Gary told himself on the day he received a diagnosis for his rare disease.

It was 2016 when Gary learned the news that he had a disease with a life expectancy of only 10 years from onset. Having already suffered symptoms for four years, it meant he likely only had six more years to live.

It began with problems swallowing. He would aspirate, or inhale food into his airways, a lot and couldn’t understand why. When he also started falling, he sought answers for what was going on. But his doctor didn’t have any. It would take four more years before a neurologist would finally give him an answer: He had progressive supranuclear palsy (PSP).

PSP causes a deterioration of brain cells in areas that control movement, coordination and thinking. It is characterized by a loss of balance, falling, and impairment of vision, speech, swallowing and memory.

In Gary’s words, “You can’t read anymore. You can’t see very well. You lose all track of everything. Your balance is lost. You fall all the time.”

Prior to his diagnosis, Gary was a fitness instructor. He was able to join a fitness class for people with Parkinson’s disease, which shares many of the same symptoms as PSP. But after a while, he was unable to continue participating as his condition deteriorated.

Today, he needs a caregiver to help him with most of his daily tasks.

One bright spot is that his daughter obtained a work-from-home job and moved in to take care of her father.

“She kind of knows [what I’m going through], but there really isn’t anyone else who understands me,” he said, calling out the isolation that many rare disease patients can feel. He hasn’t found people to connect with who share the disease and there is no current treatment or cure.

But Gary did find a way to take back some power and take action. He joined AllStripes to connect with others in the PSP community and be on the forefront of new research. By contributing his de-identified medical records to AllStripes, he can participate in multiple research efforts for PSP from home. He is also notified of developments in the research program and will receive research insights from the PSP community.

“I hope they find something real soon. It would open up all kinds of doors,” he said. “At night when I lie in bed with my eyes closed, I feel normal, but when I get up, I can’t move. I want to get my driver’s license back. I would do all kinds of things.”

If you are a patient, or family member of a patient, with PSP and are interested in contributing medical history to advance research learn more at allstripes.com/psp. Or if you’d like to send a message of support to Gary as part of the PSP community email us at support@allstripes.com.

Originally posted at June 4, 2020

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