Charlie Bryant has watched for the past two months as his mother disappeared, bit by bit, the victim of a rare and fatal brain disorder.
Stephanie Brown-Bryant, 58, of Naples, likely has Creutzfeldt-Jakob disease, known as a prion disease. “Likely” since there is no way to tell if she is afflicted until her brain can be biopsied, or after an autopsy.
Information from the Creutzfeldt-Jacob Disease Foundation shows that the disease affects about one in every million people and produces about 250 to 300 new cases every year in the U.S.
Furthermore, the brains of people and animals infected with a prion disease show characteristic brain tissue damage that, when seen under a microscope, shows many tiny holes almost like a sponge. Most patients suffer failing memory, behavior changes, impaired coordination and/or visual disturbances and die within a few months of onset of symptoms, some within a few weeks.
A preliminary diagnosis of Bryant’s mother showed a protein that is linked to the disease was discovered in fluid from a spinal tap she had.
Dr. Brian Appleby, at the Neurological Institute of The Cleveland Clinic in Ohio and an expert on the disease, confirmed the only way to know if the disease is the culprit is via a brain tissue exam. He confirmed that in the U.S. biopsies for CJD are not conducted normally until after death.
“We are getting better at doing clinical diagnosis,” he said, however, “even people that we see with CJD we can’t say definitively until we see the brain tissue.”
Florence Kranitz, president of the CJD Foundation, said performing a scan on a living person was not recommended.
“You have a sick patient and you’d have to bore a hole in their skull,” she said. “The natural instinct is to get answers. But you can’t get a definitive answer with CJD.”
Kranitz said that as horrible and dramatic as the disease is, “it is fast and painless and is not contagious.”
Bryant, 24, was living in Rhode Island when he bought a plane ticket for his mom to visit for Mother’s Day in mid-May.
“She had been getting dizzy and tired a lot,” from February to April, he said.
Another clue was her request for a wheelchair, Bryant said. After she got there, he said he took her to a hospital emergency room and got an inkling that his mother was suffering from a disease.
Doctors said that the changes the disease wrought on his mother likely started around the 2011 holidays, Bryant said.
“I visited for about three days at Christmas,” he said, “but I didn’t see anything then.”
From then until May, things got worse as her personality and lifestyle changed. Bryant said she neglected her pets, allowing them to soil carpets and develop a whole-house flea infestation.
The problem got so bad that he had carpeting removed from the home. Only his mother’s “best friend,” a black mutt named Luna, remains.
Bryant brought his mother back to Naples in June and has been her sole caregiver since, bathing, feeding and protecting her.
He has watched the former Realtor — and a stay-at-home mom before that for 20 years — progress from walking and feeding herself, talking and smiling to being wheelchair-bound and unable to talk or recognize people.
“She was able to feed herself as late as last week,” he said, adding that now she is basically an invalid.
He remains his mother’s rock as the disease grabs a stronger hold daily. “I’m strong-willed,” he said. “My friends and family are my world. I listen to music and talk to my mom.”
He has taken to Facebook and has compiled a page about his mom, her disease and how they have coped. “That’s my way of communication, my way of networking,” he said.
Bryant has gotten help in the guise of home health aides, a social worker and nurse from a hospice. Family friends have stopped to help and have brought food, supplies and some relief for him.
Bryant is also trying to set up a fund at a local bank.
“We lived here for 27 years,” he said. “This was the go-to house for the neighborhood. She was mom to everybody. She’d come get you, even if you weren’t hers.”
His sister, Ashleigh, 27, also helps and even Brown-Bryant’s ex-husband has helped.
Bryant said he is disappointed with the local medical community. He brought his mother home and hoped to find a local doctor to help treat her.
“I had no idea of what to do,” he said. “Not a single medical person in this town was willing to see her — she had no insurance. We scoured the area and nobody would take her without cash up front, which we didn’t have. Even doctor friends we knew would not see her.”
Bryant said he went to numerous area hospitals, doctors and the like and was unsuccessful in trying to get his mother another MRI to see the progression of the disease. At $2,500 a scan, he said, nobody was willing to do the test without cash first.
He has hired a lawyer specializing in quick terminal illness benefits to try to get her Social Security disability and he is hopeful that efforts by the hospice to get her Medicaid benefits expedited will be successful before she dies.
Team Depot helping
One bright spot is help developed by Team Depot, a Home Depot service to provide assistance in cases like this.
Daniel Zurbrigg, manager at the Naples store, said area service providers have replaced a broken air conditioner and will help install new flooring and repair the broken garage door.
“We’re always looking for ways to help out in community,” he said. “This particular situation came to our attention from several sources.”
Zurbrigg said Team Depot is an aspect of the Home Depot Foundation that provides services to veterans, neighborhoods and others.
While the quick changes from his mother’s disease are heartbreaking to the 24-year-old, he maintains a positive attitude and boundless energy despite losing his restaurant manager’s job in Rhode Island and likely losing his apartment and maybe his car, both up north.
A manager at the restaurant paid his cellphone bill this week after service was canceled for nonpayment.
Bryant has made arrangements for after his mom’s death. There will be no funeral only a private family celebration of his mother’s life.
Additionally, he has been hard at work having tie-dyed T-shirts printed for a beach-side memorial service after the disease claims his mother.
“We want her to look down and see us in the tie-dyed shirts,” he said, chuckling as he touched his mother’s arm, “She was a former hippie.”