One Couple’s Journey with Primary Progressive Aphasia

In between growing up in Cary and retiring in Chapel Hill, Russell Flowers, PhD, traveled the world as the head of a major corporation.

“Russ is a world-renowned food scientist,” says his wife, Mary Jo Flowers.

Mr. and Mrs. FlowersShe’s right: Mr. Flowers’ alma mater, NC State University, called him “one of the country’s leading microbiologists for nearly 40 years.” After teaching at Arizona State University, he rose to be CEO and chief scientific officer of Merieux NutriSciences, which conducts testing for and consults with some of the world’s largest food corporations.

His business travel, which included stops in places such as Italy, China and Brazil, involved handling complex acquisitions and mergers with foreign laboratories in about 20 countries. Mr. Flowers earned his bachelor’s and master’s degrees from NC State and his doctorate from the University of Illinois.

After decades of work, the couple longed for a quiet retired life in North Carolina. They moved back in 2014. Soon after, his wife noticed he was having trouble finding the words he needed to communicate.

Mr. Flowers, now 67, was diagnosed in 2016 with primary progressive aphasia, or PPA, a neurological syndrome in which a patient slowly loses the ability to speak, write, read and, eventually, comprehend language.

Diagnosing Primary Progressive Aphasia

The symptoms of neurocognitive disorders like PPA, Lewy body dementia and Alzheimer’s disease tend to overlap, so diagnosis is difficult.

PPA begins gradually, said UNC Medical Center neurologist Daniel Kaufer, MD, who diagnosed Mr. Flowers. “Many people don’t notice the early signs because they think it’s just early manifestations of word-finding difficulty that’s normal for aging.”

And the condition is inconsistent, Mrs. Flowers says. “Sometimes when he tries really hard to find the word, it doesn’t come, but sometimes we still have fluent sentences.”

Mr. Flowers first went to his primary care physician, who said diagnosing him with anything more than normal aging would be difficult.

His wife wouldn’t settle for that. “I just pushed, pushed, pushed and pushed, and a year into it, I demanded the referral to neurology,” she says.

That neurologist was Dr. Kaufer, who took Mr. Flowers through a series of tests of his cognitive abilities, motor skills and speech. Then he ordered an MRI to determine which parts of his brain were affected. The MRI showed significant shrinkage in the left frontal and temporal lobes of Mr. Flowers’ brain.

“I think Dr. Kaufer determined after one appointment with him that there was something neurologically going on,” Mrs. Flowers says.

A detailed language assessment showed “that he had a lot of difficulty with naming objects and at times had trouble getting words out,” Dr. Kaufer said.

Help for the Symptoms of PPA

After the diagnosis, the Flowers family began working with UNC Medical Center speech therapist Amber Corbin, MA.

During speech therapy, Mrs. Flowers had to leave the room. “I wouldn’t want him to see me because it was emotional for me to see him struggle over basic word recognition, being as successful and as intelligent as he is,” she says. And he has the accolades to show it, including a Distinguished Alumni Award from NC State and an Honorary Life Membership Award from the International Association for Food Protection.

Corbin helped the family create a book of images of Mr. Flowers in his home doing specific things. It’s useful when he can’t think of the word for something; he can point at the image and get his meaning across to his wife.

Mr. Flowers also began taking a combination of medications, memantine and galantamine, which are typically used to treat dementia.

Living a New Normal with PPA

Mrs. Flowers says that although the medications help, “the best therapy for Russ right now is to live as normal a life as possible. We have great friends; we belong to the country club.”

The couple take it day by day, starting off each morning as if it’s going to be a normal day. Then they adjust their plans as needed, based on how he is doing. “Sometimes it’s hourly,” his wife says.

Friends make a big difference. Initially, they were private about the PPA diagnosis. But eventually, they opened up. It was a little scary, since they were still new to the neighborhood after moving to North Carolina.

“We’ve been exceedingly lucky in this community to have people help us,” Mrs. Flowers says.

At that, her husband chimes in: “Community,” he says, as a point of emphasis.

The neighbors help in many ways, Mrs. Flowers says. “They come over; they hang out at the pool with Russ; they cook lunch; they take him to movies for the Men’s Mindless Movie Society,” she says, referring to the group of friends who go to action movies their wives don’t want to see.

At the mention of the movie club, Mr. and Mrs. Flowers chuckle for several seconds. The couple also enjoy spending time with their family, which includes four grandsons in Raleigh, the children of their son. They have another son in Boone, a daughter in Raleigh and a daughter in California.

They have learned a lot from the experience, Mrs. Flowers says.

“The biggest mistake I made was not accepting help earlier,” she says. “But the best thing we’ve done is keeping our daily activities as normal as possible and keeping a positive attitude. Russ has always had an incredibly positive attitude through his entire life.”

Need to see a neurologist? Talk to your primary care physician, or find one near you, for a referral.

Editor’s note: Dan Kaufer, MD, died July 2, 2020. He was the founding director of the UNC Memory Disorders Program. Renowned for his research and treatment of memory disorders, Dr. Kaufer was deeply devoted to his patients and their families.