Gardens doctor in drug study for dementia that plagued Robin Williams

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.

Reader Comments ...

Next Up in Local

Sportcaster, former NFL player Ahmad Rashad selling Gardens home
Sportcaster, former NFL player Ahmad Rashad selling Gardens home

Former Minnesota Viking and NBC sportscaster Ahmad Rashad has put his Palm Beach Gardens home on the market, reports. Rashad is listing his 3-bedroom, 4 1/2-bathroom house in Frenchman’s Creek Beach & Country Club for $740,000. The home has a two-car garage and a pool that’s surrounded by thick landscaping for privacy, but the...
NEW: 1 dead, five injured in crash near Palm Springs, road closed
NEW: 1 dead, five injured in crash near Palm Springs, road closed

One person is dead and five are in the hospital after a crash near Palm Springs Thursday evening, according to Palm Beach County Fire Rescue. Crews were called to a multiple-vehicle crash near Melaleuca Lane and Congress Avenue at 5 p.m. Several people were trapped inside a vehicle that was on fire, according to Capt. Albert Borroto, the spokesperson...
Mark your calendar for these 2018 meteor showers
Mark your calendar for these 2018 meteor showers

There are plenty of meteor showers to enjoy this year, reports Storm Center 7 Meteorologist Kirstie Zontini. Mark your calendars and keep checking in for the latest forecast. The Lyrid Meteor shower will peak over the weekend but the sky might not be ideal. RELATED: Download our free WHIO weather APP to stay informed  Lyrids: Active April...
Palm Beach developer admits to lying to bankroll Vero condo project
Palm Beach developer admits to lying to bankroll Vero condo project

A 74-year-old developer who operated from offices in Palm Beach faces a possible five-year prison sentence after admitting to a federal judge on Thursday that he submitted phony documents to banks to keep an oceanfront condominium project in Vero Beach afloat. Once facing eight counts of bank fraud, George Heaton pleaded guilty to a single charge of...
Cerabino: In immigration debate, Florida’s Rubio should find his voice
Cerabino: In immigration debate, Florida’s Rubio should find his voice

This would be a great time for Marco Rubio to start talking about his parents again. I’ll admit, I’ve grown weary over the years hearing the junior U.S. senator from Florida find a way in speeches to include the biographical detail that he comes from humble beginnings. “I live in an exceptional country where even the son of a bartender...
More Stories