Like so many couples, Bonnie and Jeffery Austin were ready to enjoy retirement when they moved to Florida, bought a 40-foot sailboat and took off for the Caribbean after successful careers at General Motors.
But their golden years were cut short when Jeffery had a sudden, puzzling change in behavior off the island of Bonaire, and the couple realized he lost 35 pounds in six weeks. It was the start of a three-year struggle to find an accurate diagnosis and a decade of slow, heartbreaking deterioration in Jeffery’s health, Bonnie Austin, of Boca Raton, said.
His ultimate diagnosis: dementia with Lewy bodies, or DLB, the same condition that plagued comedian Robin Williams before his death by suicide in 2014. Lewy bodies are clusters of a protein buildup in the brain.
Jeffery died of the disease this September at the age of 68. Bonnie Austin said part of the problem was that he was seeing doctors who didn’t know him after they moved to Florida from Michigan.
“We couldn’t convince them there was something that wasn’t right,” she said.
Lewy body dementia affects an estimated 1.4 million people and their families in the U.S., according to the Lewy Body Dementia Association.
A new drug that’s the subject of a clinical study could help treat the symptoms of people suffering from dementia with Lewy bodies, which differs from Alzheimer’s disease and parkinsonism. New participants for the nationwide study are being accepted in Palm Beach Gardens, Boca Raton, Orlando, Tampa and Jacksonville.
The drug, RVT-101, works by extending the life of a naturally-occurring chemical in the brain related to memory and movement, said Dr. Michael Tuchman, a Palm Beach Gardens neurologist who is involved in the study. The drug won’t cure the disease; it only has the potential to help control symptoms.
Symptoms include sudden swings in behavior — a quiet person becoming loud and inappropriate, for instance; sleep difficulty; violent nightmares; visual hallucinations such as a child walking through the room and eventually, memory loss, Tuchman said.
For the Austins, there were early signs they didn’t give a second thought. Jeffery lost his sense of smell in his 30s, another one of the symptoms. He complained of shoulder pain, but they were competitive ballroom dancers and lived an active lifestyle. Even the expression on his face became totally different, Bonnie Austin said.
Lewy body dementia begins differently from person to person and can take six months to a year or more to correctly diagnose, Tuchman said. There is no treatment specifically for the disease, so the Food and Drug Administration has given the clinical trial drug expedited status.
Patients might be given medication used to treat Alzheimer’s or Parkinson’s disease, but sometimes it makes their conditions worse.
“Sadly, many respond paradoxically to medication,” Tuchman said. “We need something better.”
In the clinical study of the new drug, participants will receive a placebo, a 35 mg dose or a 70 mg dose. To avoid skewing the results, neither the doctor nor the patient know which tablet the participant is getting. Axovant Sciences, the drug company, pays for the medication and associated tests.
The progression of Lewy body dementia is faster than traditional Alzheimer’s disease. One of the biggest heartaches for Bonnie and Jeffery Austin was when he rapidly lost the ability to speak, she said.
The disease is hard on caregivers, too. Austin now leads a Lewy body dementia support group in Boca Raton once a month.
In addition to early treatment and diagnosis, support groups can help a patient’s family, Tuchman said.
“It can’t be done alone,” he said.
To qualify for the study, a patient must be between 50 and 85 years old, have a diagnosis of dementia with Lewy bodies for at least two months and be accompanied by a caregiver who can oversee participation and answer questions about his or her health.
Contact the Palm Beach Neurological Center at 561-282-5546.