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Hackensack and Paramus will sport special jerseys when they clash on the softball diamond April 16 in Hackensack to promote awareness of ataxia, a hereditary neurological disorder that impairs movement, coordination and speech.
It’s a condition Comets coach Brian Hooper is unfortunately all too aware of. His beloved grandmother, “Grandma Gay,” and his father, Glenn, are battling ataxia.
“I know there are games and events out there for autism research and cancer and I think those games really help the causes,” Brian said. “Ataxia is something most people have not heard of. I want to make people aware that that it is very difficult to deal with and the more attention something like this gets, the closer we can get to helping people with it.”
The American Brain Foundation believes the condition impacts more than 150,000 people in the United States alone.
Hackensack will wear custom gold jerseys with a blue ribbon (the ataxia color) and Paramus will wear grey jerseys also with a blue ribbon. Hooper is directing friends to National Ataxia Foundation website for any donations.
“It’s a neurological disorder, kind of like Parkinson’s,” Brian said. “It impacts your motor functions and balance and your speech. Eventually people have trouble eating and it can shorten your life span. It’s rare.”
Grandma Gay (real name Gesa Hooper) had a home in Paramus and would take her grandsons fishing in Schlegel Lake when they were growing up. Brian describes her as always active, someone who loved to travel and had fudge-stripped cookies at the ready.
She was diagnosed with ataxia near the age of 70, when her symptoms become serious. She’s now 93 and requires full-time care in Wyckoff.
“Mentally she is pretty sharp for her age,” Brian said with a laugh. “She has outlived every doctor’s expectation.”
Brian’s father, Glenn, who was chief of police in the Township of Washington and served 42 years on the force, was diagnosed with the disorder last February. He now walks with a cane, but Brian said his father, 71, is attending physical therapy and getting along well.
“He’s managing as best as he can,” Brian said. “At PT, they work with him on his balance, but he is starting to understand the limitations of what he can and can’t do. He has to go at a slower pace.”
Brian’s aunts, Susan and Sharon, are also dealing with the early stages of the disorder. Brian and his brother Glenn, a policeman in Paramus, know they have a 50-50 shot of being diagnosed when they get older.
“I’ve talked to my doctor and he said there’s no point in getting tested now, there’s nothing they can do about it early right now anyway,” Brian said. “I just try to keep myself mentally and physically fit and stay healthy. I’m sure more advance treatments will become available.”
Doing an awareness game against Paramus made perfect sense to Brian. It’s where his family grew up, and he and Spartans coach Marc Gregory are friends.
Brian prefers to keep family matters private, but wants to use this opportunity to spread the word.
“I try not to show too much, but when I told my team’s parents and the players what we were doing, I started to get emotional,” Brian said. “I’m not usually someone who shows much emotion, but I know if we win Thursday, I will cry happy.”
This article originally appeared on NorthJersey.com: Hackensack NJ softball coach out to raise awareness of ataxia
Continue reading...
It’s a condition Comets coach Brian Hooper is unfortunately all too aware of. His beloved grandmother, “Grandma Gay,” and his father, Glenn, are battling ataxia.
“I know there are games and events out there for autism research and cancer and I think those games really help the causes,” Brian said. “Ataxia is something most people have not heard of. I want to make people aware that that it is very difficult to deal with and the more attention something like this gets, the closer we can get to helping people with it.”
The American Brain Foundation believes the condition impacts more than 150,000 people in the United States alone.
Hackensack will wear custom gold jerseys with a blue ribbon (the ataxia color) and Paramus will wear grey jerseys also with a blue ribbon. Hooper is directing friends to National Ataxia Foundation website for any donations.
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“It’s a neurological disorder, kind of like Parkinson’s,” Brian said. “It impacts your motor functions and balance and your speech. Eventually people have trouble eating and it can shorten your life span. It’s rare.”
Grandma Gay (real name Gesa Hooper) had a home in Paramus and would take her grandsons fishing in Schlegel Lake when they were growing up. Brian describes her as always active, someone who loved to travel and had fudge-stripped cookies at the ready.
She was diagnosed with ataxia near the age of 70, when her symptoms become serious. She’s now 93 and requires full-time care in Wyckoff.
“Mentally she is pretty sharp for her age,” Brian said with a laugh. “She has outlived every doctor’s expectation.”
Brian’s father, Glenn, who was chief of police in the Township of Washington and served 42 years on the force, was diagnosed with the disorder last February. He now walks with a cane, but Brian said his father, 71, is attending physical therapy and getting along well.
“He’s managing as best as he can,” Brian said. “At PT, they work with him on his balance, but he is starting to understand the limitations of what he can and can’t do. He has to go at a slower pace.”
Brian’s aunts, Susan and Sharon, are also dealing with the early stages of the disorder. Brian and his brother Glenn, a policeman in Paramus, know they have a 50-50 shot of being diagnosed when they get older.
“I’ve talked to my doctor and he said there’s no point in getting tested now, there’s nothing they can do about it early right now anyway,” Brian said. “I just try to keep myself mentally and physically fit and stay healthy. I’m sure more advance treatments will become available.”
Doing an awareness game against Paramus made perfect sense to Brian. It’s where his family grew up, and he and Spartans coach Marc Gregory are friends.
Brian prefers to keep family matters private, but wants to use this opportunity to spread the word.
“I try not to show too much, but when I told my team’s parents and the players what we were doing, I started to get emotional,” Brian said. “I’m not usually someone who shows much emotion, but I know if we win Thursday, I will cry happy.”
This article originally appeared on NorthJersey.com: Hackensack NJ softball coach out to raise awareness of ataxia
Continue reading...
