UpdatedMay 14, 2020
Mary and Jerry’s lives were forever changed when Jerry was diagnosed with the rare disease PSP. He made generous choices to try to ensure future PSP patients and caregivers don’t go through what they did.
By Catherine Cooke
“It was the worst news that I could ever get. My world stopped. You don’t know which way to turn or what to do or what to think.”
Mary and her husband Jerry had a loving marriage of more than 43 years. They enjoyed vacationing together in Gulf Shores, Ala., going fishing, camping, and making things in their workshop.
It was during one of their stays in Gulf Shores that Mary and her friends began noticing something had changed with her normally happy and upbeat husband. Jerry began shuffling his feet, getting more agitated, gazing off and losing his balance.
His friend, who had early symptoms of Parkinson’s, suggested Jerry could have it too. When they brought it up to Jerry’s doctor, he looked at them and quickly ended that theory.
With the news that Jerry did not have Parkinson’s, Mary “felt the biggest relief there was.” Sadly, this relief lasted only a few seconds before the doctor explained, “It’s worse. He has progressive supranuclear palsy.” Mary recalls feeling like she might fall through the floor.
Progressive supranuclear palsy (PSP) is a rare brain disorder that is often confused with Parkinson’s. However, PSP is much less common, affecting only 3 to 6 in every 100,000 people worldwide. The disease is characterized by an accumulation of a protein called tau that deposits itself on nerve cells in the brain, but more is unknown than known at this time. There is no current treatment or cure.
“After we found out about the disease, every moment was special. I knew that he was slowly, daily slipping away from me,” Mary said.
His speech slowed, he stopped being able to eat on his own, and he was soon bound to a wheelchair. It was a frustrating time, as Jerry slowly lost control over his life, and Mary was suddenly thrust into the role of full-time caregiver.
For the most part, she was able to keep her joy.
“Through this, you’ve got to laugh with them. You’ve got to help them through the day. It’s not about you; it’s about them. You feel like you’re going through this alone, but you’re not. You’re going through this with them.”
One of the hardest parts was how unpredictable the progression was. “There’s no set textbook that I can read,” Mary said. “Some of the time, they can tell you what’s going to happen, but for other things, they can’t tell you. Every day is learning and changing. What you can do today, tomorrow you can’t.”
In the final days of Jerry’s life, Mary was able to put aside her full-time “caregiver” role as the hospice nurse relieved her and told her it was time to focus on being a wife again. For the first time in years, Mary could just be fully present, feeling the deepness of both love and loss. It was a great release.
Before his passing, Jerry decided he wanted to donate his brain to the Mayo Clinic in Florida so that others could someday benefit from research. To both Mary and her daughter, he was a superhero for making this choice.
After getting back the results of the testing on Jerry’s brain, Mary realized she didn’t know how to put that information to good use.
After searching for ways to get the research into the hands of those who could do something impactful with it, she found AllStripes. An online platform specifically built for rare disease patients, AllStripes abstracts de-identified information from medical records and shares it with researchers who are on the forefront of rare disease treatments.
“By giving the medical history to researchers through AllStripes, a piece of information may trigger something that can help someone else,” Mary said.
For this act of generosity, we think Jerry and Mary are both superheroes, but she will take no credit for her work to help other rare disease patients. “I’ve heard people say, you’ll get a star on a crown, but I don’t want a star on a crown. I would do it for anybody.”
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 email us at firstname.lastname@example.org.