Family must face mother’s disabling terminal disease
Saw own parent struggle with hereditary illness
Huntington’s disease brings chaos as well as tragedy into the lives it takes over, and Tiffany Pinkney had lived through a great deal of both long before she was diagnosed with the illness.
She and her siblings often went hungry while her mother, temperamental and erratic, drank and spun out of control in a series of relationships with men who were abusive.
Her brother, who as a boy broke into schools to steal food for the family, was shot to death during a robbery as a young man. One of her older sisters was incarcerated, leaving a son behind who needed care. Pinkney, the youngest, shouldered responsibilities that led her siblings to nickname her “Big Sister.”
When she was 17, she tried to take her own life.
By then, she realizes as she searches her memory, she knew that her mother had a hereditary condition that made her act the way she did, and that was going to kill her, and that was called Huntington’s disease.
“A psychiatrist asked me, ‘What’s your biggest fear’?” she recalls. “I said, ‘Having Huntington’s.’”
The disease is incurable and fatal. The experience of having it has been described as having the loss of physical control that comes with Parkinson’s disease and ALS — also known as Lou Gehrig’s disease — and the memory loss of Alzheimer’s along with psychosis.
Pinkney believes in a God who would never give her more than she could handle, and as she reached adulthood and started working, she said, she didn’t let fear stop her from living. With her longterm partner Marcus Lacy, she had her daughter, Saniyah, who is now 6.
Depression and wild mood swings were the first signs that Pinkney’s worst fear was coming true. She had always been smart in school and good at math, but now her memory failed her, frustrating and frightening her.
Shortly before her son, Kendric, was born in 2021, she was diagnosed with the disease that already had derailed her family’s lives.
In April, as Pinkney’s mental and physical function diminished, she lost her job at a preschool where she had worked for 10 years. A few months later, she was committed to a psychiatric ward. It was there, she says she realized, that she needed to be home to live as well and as long as possible to be the mother to her children — a mother that she wished she’d had.
‘It’s not your fault. Mommy is bipolar.’
She takes medicine for bipolar disorder and worries about the effects of both the treatment and the disease. When she takes the medicine at night, she sleeps too late and misses precious time with her children. When she doesn’t take it, she says, “I get mean.”
She tells Saniyah, “It’s not your fault. Mommy is bipolar.”
Pinkney tells her grandmother, when she forgets things, “I’m not the same Tiffany.”
She touches furniture when she walks to make sure she doesn’t fall down.
Her other sister also was diagnosed with the disease, and while she is not suffering the psychiatric effects that Pinkney is experiencing, her sister’s ability to control her movements is much worse.
When Pinkney sees her sister, she comes home crying.
“Sometimes I cry, and I don’t even know why I’m crying,” she says.
She still has good times with her children.
Dad becomes keeper of hope, caregiver to all
Pinkney smiles when she tells how Lacy, who now is her caregiver as well as her partner and the father of her children, takes her out for a drive to lift her spirits.
He is the positive one, they agree. He talks about new treatments that are being researched. They both hope she will get into a clinical trial for one. He cooks and gets their daughter ready for preschool. He entertains their son. He interlaces his fingers with hers, and their children stay close as they talk about their lives.
Both children were smiling, active and affectionate with each other and their parents during a reporter’s visit recently.
But the strain of all of it caught up with Lacy a few months ago. He broke down at work and was put on leave while seeking treatment for his own depression.
Pinkney and Lacy look forward to his return to work because they are struggling without that income. But they worry about who can supply the increasing help that Pinkney needs and provide care for Kendric, who turned 2 in August. In the meantime, their expenses mount after their car was in an accident.
The damage to one of the axles now is tearing up the tires, which have to be replaced regularly, Lacy said. The car should have been totaled, he said, but they could not afford a new one.
As Pinkney waits for her disability benefits to begin, she is overwhelmed by the uncertainties of how quickly her terminal disease will progress and of her family’s needs.
Tiffany Pinkney’s wish:
As a child, Tiffany Pinkney watched her family fall into chaos as her mother was overwhelmed by the ravages of Huntington’s disease. Now, the 32-yearold mother of two is wrestling with the same inherited and eventually fatal disease. She is no longer able to work, even as her family struggles to meet her growing needs, and their living expenses. The family needs help covering utility bills, rent and food, clothes and shoes for the children for the next year. They also need money to maintain their car. Because of her progressive physical limitations, Pinkney could use a new couch and lift bars and safety equipment to help her move as independently as possible. Pinkney knows that she soon will need a hospital bed at a cost of at least $2,000, but she wants to put that off as long as possible. And, Lacy says, “We’d like the children to have a nice Christmas.”
Nominated by: Adopt-A-Family of the Palm Beaches Inc.
Antigone Barton is a reporter for The Palm Beach Post, part of the USA TODAY network. She can be reached by email at at avbarton@pbpost.com.