Losing a loved one can be life-shattering. Ginny Toman knows this, as she lost her father to progressive supranuclear palsy (PSP) in 2019. Since then, she has learned how to cope and live a life without one of her biggest cheerleaders, along with helping others through her book Always In Your Heart.
John’s PSP Journey
Ginny describes her father, John Seiler, as “larger than life.” He was a wonderful father, husband, and man. She looks back at her childhood fondly, remembering all of the happy times she shared with her dad, mom, and brother Kevin.
Things began to change when Ginny grew up. John stopped talking; something was very off. She recalls a time when she introduced her parents to the man she ended up marrying, telling her dad “You need to talk at dinner.” John couldn’t.
Things just kept getting worse. John was involved in two car accidents within a month, which finally pushed Ginny and her mother to seek medical help. They began in internal medicine before being sent to a neurologist. This doctor ended up referring them to a different neurologist: Dr. Gregory Day of Washington University. It was Dr. Day who finally diagnosed John with PSP.
For a year, Ginny’s mother took care of John, but they were faced with challenges, one of which was their size difference. John was more than a foot taller than his wife, which made it hard to take care of him. She put an alarm system in their home to ensure that he didn’t wind up outside, hid car keys so he wouldn’t drive, and did everything she could to take care of her spouse.
Finally, the family acknowledged that John needed more care than they could provide. Eventually, he needed to live in a home. On January 1, 2019, he passed away, but not before seeing his daughter in her wedding dress.
Always In Your Heart
Coping with losing her father, not having him present for all of her special moments, was very difficult for Ginny. He couldn’t walk her down the aisle or meet her baby. She also knew that her child would miss out on having one of her grandparents.
In order to help her daughter understand such a complex issue, she decided to write a children’s book. Always In Your Heart explains to children why they cannot meet someone who should’ve been a presence in their lives. It also urges people to share stories and memories of their loved ones so they live on in everybody’s hearts.
Throughout the book, Ginny hid small nods to her father. His initials are on a tree, the St. Louis skyline is in the background, and his birthday was used for a racecar number. On the back of the book, Ginny gives details about PSP in order to raise awareness and help others reach a diagnosis sooner.
About PSP
PSP is a brain disorder that damages the nuclei, causing progressive issues with movement. It affects approximately three to six of every 100,000 people, although this number could be higher due to the number of people who are misdiagnosed with Parkinson’s. This is because the symptoms of the two conditions are similar. PSP effects include issues with balance and walking, falling, sleep disturbances, changes in personality and judgment, stiffness, issues with eye movement, slowed movement, alterations in mood and behavior, speech issues, eating and swallowing problems, and depression.
The exact cause of this disorder is unknown, but medical professionals do know that progressive damage to nerve cells in the brain stem is a part of it. In rare cases, PSP is inherited from parents due to a mutated MAPT gene. In order to obtain a diagnosis, doctors will look for the characteristic symptoms, perform a clinical evaluation, look at patient history, perform MRIs, and use PET scans. Treatment is symptomatic.
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