BY REBECCA PALMER
BOUNTIFUL — After she retired from her career teaching in Davis School District elementary schools, Jeanine Thatcher Bosch tried to stay active. She continued golfing at Oakridge Country Club, where she was once president of the ladies’ organization, and played bridge with several groups of friends.
Jeanine was never known to be quiet or shy, so her children and husband didn’t notice anything was unusual about her behavior until extended family members
who hadn’t seen her for some time visited. They noticed her slurring speech and uncontrollable movements and when they mentioned it, daughter Becky Bosch Blaine knew she had to take action.
“Mom, you’re acting like a drunken sailor,” Blaine later reported saying.
They didn’t know it at the time, but Jeanine was experiencing early symptoms of Huntington’s Disease, a neuro-degenerative disorder similar to Parkinson’s Disease or Lou Gherig’s Disease. The disease is genetic and you can only get it if one of your parent’s had it, but Jeanine was adopted, so no one knew what to expect.
Often, people in the early stages of the disease are mistaken for drunks, and some have even been arrested.
In just one year of Jeanine’s disease, the large, uncontrollable movements known as Huntington’s chorea were bad enough that the back of her head wore a hole through the leather chair she sat in while watching television.
Later, the movements were bad enough that Jeanine fell out of a golf cart at the country club she loved so much. At bridge, her friends eventually had to hold her cards for her.
Blaine keeps a video of her mother’s last days on her smartphone, and the clips show a woman who is unable to talk or move very much, but who seems to understand her situation.
In one clip, Jeanine holds her infant great-granddaughter and tries to coo and hold the baby’s foot, but to no avail. When she’s not trying to speak, she shows characteristic signs of Huntington’s Disease such as a rigid, taut face and wild eyes.
Jeanine died a few days later, in July of 2010. She had just turned 77. Now, Becky’s brother is showing symptoms, and she is afraid that she and her children and grandchildren are also carriers.
“That’s the cruelest part of this disease,” said Blaine. “A lot of people have diseases and illnesses for lots of years before they die, and then when that person passes everyone can say ‘Now we can breathe, now we can get on with living.’ With Huntington’s, you’ve just got to turn a quarter turn and half of your family has it. Half of your family is going to die that very same way. You don’t get a reprieve.”
Blaine recalls that during her years teaching at Oak Hills Elementary, Boulton Elementary and Columbia Elementary, Jeanine was always a champion of the underdog. Now, Blaine is part of a Utah group fighting to raise money for a cure. They are a first-year affiliate chapter of the Huntington’s Disease Society of America, but can only become a full chapter if they raise $50,000 in one year.
Joining the nonprofit society would help Utah families with education and, possibly, support in the form of financial help with medical bills and other expenses. But primarily, it would help with awareness. Without that, getting enough money to find a cure will be almost impossible.
Huntington’s affects about 3 people per 10,000, or about 300 in Utah alone. It usually strikes in the thirties or forties, but can even occur in children. It is always fatal.
Before death, there is usually about a decade of living with symptoms. These include an inability to work due to the chorea, psychological problems including rages of anger and depression and cognitive problems ranging from an inability to remember words to profound dementia.
Huntington’s Disease was identified in 1872, but the gene mutation that causes it wasn’t identified until 1993.
It’s always been hard to raise awareness without hurting the people you love most, Blaine said.
“You don’t talk about it because there are so many family members at risk,” she said. “They know what’s in store for them, they’ve seen it.”
The Utah affiliate chapter of the Huntington’s society is holding a benefit concert on March 22 at Murray High School as a tribute to singer Woody Guthrie, who died from the disease. The cost is $10 per person or $25 for a family of four, and three local bands will play.
Proceeds probably won’t get the chapter all the way to $50,000, but it’s a start.
“I would love to turn my back on it and say you know what, I’m tired and I don’t want to do it, but somebody has to do it,” said on a Friday afternoon in early March. “It kind of took a group of people with enough energy for it to say you know what, we’re ready to talk Й We really want to expose the ugliness of this disease and get somebody to recognize it and say, let’s really work at this.”