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A form of dementia but not Alzheimer's

Pantagraph - 4/7/2017

April 07--LINCOLN -- Some people might see Darren Hellman of Lincoln "and think 'Oh, that person is just crazy," said Katrina Hellman.

"I see it differently," she said.

She sees her husband, who has a disease that is so rare that even some doctors don't know about it.

He has frontotemporal degeneration (FTD), a form of dementia characterized by brain atrophy and gradual loss of brain function. The disease frequently is initially diagnosed as either Alzheimer's disease or a psychiatric problem.

"It's a very uncommon condition," said Dr. Tom Ala, Darren's neurologist and associate professor of neurology and interim medical director of the Center for Alzheimer's Disease and Related Disorders at SIU School of Medicine, Springfield. Ala has about 25 patients with FTD and, over the years, has had about 100. Symptoms and severity vary.

"It's not a new disease but people are becoming more aware of it," Ala said.

While Alzheimer's hallmark symptom is memory loss, FTD is primarily a disease of behavior and language dysfunction, according to the Association for Frontotemporal Degeneration.

Patients exhibit behavioral and personality changes, such as lack of concern for social norms, while retaining memory of daily events and orientation to time and space, the association said.

FTD also begins earlier than Alzheimer's. Darren is 51. His symptoms began to appear 6 1/2 years ago.

During a March 29 visit with the Hellmans -- and Darren's sister, Deanna Hellman-Baker of Tremont -- in the Hellmans' home, Darren was open and conversational but frequently forgot words.

The former welder, welding inspector and manufacturing line technician forgot words like "semi-trucks," "math," "drafting," "supervisor" and "valves."

He would remember words after he was reminded by Katrina or Deanna or if he looked them up.

"That's why I have a smartphone...," Darren said. "I use the smartphone to help me remember names and addresses and facts for life. I write things and eventually put it on my smartphone and use it as a reference."

Darren frequently connects his thoughts with the phrase "and oh" -- even though the thoughts are only tangentially related.

Darren no longer understands humor; doesn't pick up on social cues, such as when his wife and sister want to move the conversation along; and sometimes fixates on certain things.

"I hurt for him," said Katrina, who married Darren on May 2, 2009, in what was the second marriage for both.

She looked at Darren as she spoke. He continued to show visitors a video on his smartphone, oblivious to his wife's poignant remarks.

"This was not what we had planned," Katrina continued. "This is not what we thought married life would be."

Darren was reared in Lincoln, received a degree in metals and manufacturing from Illinois State University in Normal and worked for companies in the Chicago area. The couple, with son Joshua, now 6 1/2 , moved to Lincoln in 2015.

Katrina first noticed symptoms in 2010, when the couple was living in Crystal Lake.

"The initial symptom was irritability," Katrina recalled. "I assumed it was because he was working third shift and taking care of Joshua while I was at work during the day. He was unable to manage his sleep and wake time."

The next symptom was a decline in language.

"One of the things I noticed was I couldn't remember peoples' names," Darren recalled. "I was like, 'Oh,' and I couldn't remember everything at work. My head was cloudy."

Darren was diagnosed with sleep apnea. But sister Deanna noticed he couldn't remember names of longtime family friends. Katrina realized it was more when Darren brought a dead raccoon into the yard and wasn't sure what to do with it.

Compulsive behavior, such as excessive hand washing, became magnified.

His Chicago-area neurologist conducted tests and concluded that Darren had dementia. A second battery of tests at Mayo Clinic concluded he had non-hereditary version of FTD.

"My reaction is 'Oh, I didn't understand. Well, it's nice to have a diagnosis,'" Darren said.

"I'd never heard of it so I got on the computer and researched it," Katrina said. "There was a relief because we had an answer but it was terrible because I knew our lives would continue to change dramatically."

No longer able to safely work in his field, Darren was approved for disability. "I didn't want to (stop working) but the neurologist didn't want me fired," Darren said.

"I was coming to the end of my rope," admitted Katrina, who quit her job as a sales professional when the couple moved to Lincoln, where Darren's parents live.

Katrina drives a school bus and helps family friends with farming to help make ends meet. Darren's parents, his sister and brother-in-law and Katrina's parents -- who also recently moved to Lincoln -- help with Joshua.

"Joshua knows that Daddy has dementia," Katrina said. "He's a very bright young boy."

"We all rallied around Joshua," Deanna said. "We try to fill in the gaps where needed. My husband has become his buddy ... Darren was very receptive to that."

"Moving to a small community where people already knew him and were familiar with his behavior changes helped," Katrina said.

There is no cure, Ala said, so treatments are focused on mitigating symptoms, a Mediterranean diet and exercise to keep the body as healthy as possible.

Katrina and Deanna have organized a support group for caregivers of people with frontotemporal degeneration.

"I knew I needed it and that others needed it, too," Katrina said. The group meets at 10 a.m. on the fourth Saturday of each month at First United Methodist Church, Tremont.

According to the association, people with FTD can live as long as 20 years after diagnosis but the average is 6 1/2 to 7 years.

"We don't know," Ala said of Darren's prognosis. "But he is atypical. He's had a very mild course and he has done well, which suggests to me -- and I hope -- that he has many good years ahead of him."

***

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