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Published February 26, 2012, 10:54 PM

Rare disease leads to Minnesota man's drastic personality change

Lewy Body disease, a form of dementia frequently associated with Parkinson’s disease, would inalterably damage David DeLeo’s mind and drastically change his personality.

By: John Lundy, Duluth News Tribune , INFORUM

DULUTH, Minn. - Wet and cold, huddled under a blanket in a small Coast Guard rescue boat, the hull of their foundering 53-foot powerboat Hermit Crab barely showing in the Gulf of Mexico, Sharon DeLeo turned to her husband, David.

“I looked up at him and said: ‘Dave, I’ve gone through a lot of things with you, but this takes the cake,’ ” Sharon recalled. “And he laughed.”

It was March 8, 2005, and the Duluth Township couple were in the midst of the most harrowing adventure of an idyllic, fun-loving marriage. They couldn’t have known that just a few months later, they’d begin a much more terrifying struggle.

Lewy Body disease, a form of dementia frequently associated with Parkinson’s disease, would inalterably damage David DeLeo’s mind and drastically change his personality.

“David was the best, the nicest guy,” Sharon DeLeo said during an interview this month in the rustic house they bought in 1987, across North Shore Drive from Lake Superior. He was easygoing, never worried, never bothered by anything.

Lewy Body “turned him into a hallucinogenic, paranoid person,” she said, so violent that one of the caregivers she hired quit in fear.

David’s son Jim DeLeo, a St. Paul-based management consultant, also saw a stark change.

“People wanted to follow him,” Jim said. “He always knew what he wanted to do. Very confident. Very decisive. … After the Lewy Body, when he started having hallucinations, you could see his confidence level wane. There wasn’t that same decisiveness.”

Sharon’s daughter, Jackie Moen of Isanti, Minn., said the change in David was “almost beyond words. To go from the gentle soul who was fun-loving, confident and decisive, to being combative and violent. It was almost like walking in a nightmare.”

It was a bewildering adjustment for his family to make.

“You’re stunned. You’re so stunned by this change in behavior,” said Sharon DeLeo, 72. “David was a totally different person. It was like living with a stranger.”

On Dec. 3, the disease ended his life. He was 75.

‘We had a good life’

David and Sharon DeLeo would have celebrated their 29th wedding anniversary on Saturday. The experiences of the past few years haven’t dimmed Sharon’s memories of most of their time together.

“We had a good life, really,” she said. “We had the kind of marriage where we did whatever we felt like doing. … Our marriage was magical. We were magical together. We didn’t fight. There was nothing to fight about.”

Jim DeLeo, who was a young adult when Dave and Sharon married, remembers their companionship.

“They were absolutely devoted to one another, and everything they did they did together,” he said.

Both David and Sharon grew up on the Iron Range. Their marriage was the second for both, and each had two children, a boy and a girl apiece. He spent 40 years as an executive in the mining industry, including top positions with Reserve Mining and as president of EVTAC. They started a business, Carousel Antiques, in Two Harbors in 1986, and four years later added Shari’s Kitchen, a restaurant. They had a home in Florida as well as in the Northland.

They traveled widely, often on a sailboat. David was an avid, competitive sailor; Sharon, though prone to seasickness, often went with him. “Everybody kept asking me for years, ‘Why do you keep sailing?’ ” she recalled. “Well, I wanted to be with David.”

Jim DeLeo still marvels at that.

“Can you imagine?” he asked. “Getting seasick virtually every time you go out, having to put the patch on or take pills, or whatever. But just muscling your way through it because you wanted to be with him. That’s amazing to me.”

Although David was diagnosed with Parkinson’s in 1990, it didn’t keep the couple from enjoying life. They adjusted their diet and made sure he got plenty of exercise to minimize the effects, Sharon said.

When Parkinson’s forced him to give up sailing in 1995, they switched to a powerboat. The accident occurred about 9 p.m. March 7, 2005, in heavy seas about 35 miles from the Florida Gulf Coast, with only the DeLeos and a cousin of Sharon’s aboard. A waterspout hit, damaging the boat and knocking out its power steering. David steered the boat manually while radioing the Coast Guard. Sharon was lying on a couch, suffering from seasickness. Sharon’s cousin was suffering from a diabetic episode.

After the Coast Guard arrived about 2:30 a.m. the boat took on water, and the three-person crew and two Coast Guardsmen were in the water, swimming against waves toward the Coast Guard boat.

All five people made it to safety, but the DeLeos’ Maltese dog was lost at sea. Sharon DeLeo has two Maltese dogs today, named Sugar and Spice.

‘He wanted a better life’

David still was coping well with the effects of Parkinson’s in 2005, Sharon said, but he wasn’t satisfied.

“His gait was getting more noticeable,” she said. “It did bother him. He was a big, strapping football player, a swimmer in high school and college. … He couldn’t walk like he wanted to walk.”

David sought deep brain stimulation, a surgical procedure in which a device is implanted in the patient’s brain to cut off the abnormal nerve signals that cause Parkinson’s symptoms. The patient must be awake throughout the procedure.

He was turned down by the Mayo Clinic in Rochester, told that a blood-thinning medication he used would make the surgery unsafe. He turned to the Mayo Clinic hospital in Jacksonville, Fla., about a five-hour drive from the couple’s Florida home, and was told that the medication could be suspended for a few days.

“He wanted a better life,” Sharon said. “Poor darling. His life was over with that surgery.”

The procedure was scheduled for Aug. 31, 2005. Two days earlier, David was given a neuropsychological evaluation, but they weren’t told about the results, Sharon said. Instead, the surgeon told them David was a good candidate for the surgery. She didn’t learn until five years later, when she requested medical records from the clinic, that the evaluation found David had symptoms of Lewy Body disease. “I wouldn’t have known what Lewy Body was,” she said. “Someone would have had to explain it to me.”

But David already had shown signs of the illness. Sharon’s son, David Jensen, who is in the construction industry in Florida, said he became aware of his stepfather having hallucinations as early as 2003 or 2004.

Because of the clinical signs of Lewy Body, Sharon believes the procedure never should have been allowed. “One of the criteria is you cannot have deep brain stimulation surgery if you’re showing any signs at all of dementia,” she said.

Dr. Wolcott Holt, a neurologist at Essentia Health in Duluth, said signs of dementia normally preclude the procedure.

“Most places do not do deep brain stimulation when there’s cognitive impairment, because it makes it worse,” Holt said.

The Mayo Clinic hospital in Jacksonville didn’t respond directly to News Tribune questions about Sharon DeLeo’s complaint but said its care was appropriate.

“We extend sincere and deep sympathy to the family for their loss,” spokesman Kevin Punsky said. “Mayo Clinic aspires to provide the best care to every patient every day. We believe the care provided in this case by Mayo Clinic physicians and allied health staff was appropriate. Our respect for patient privacy prevents us from offering any additional information.”

David experienced temporary improvement in his gait, Sharon said. But his loss of short-term memory was immediate and devastating. “He could no longer use the remote control on the television set. He couldn’t use a cell phone, and he certainly couldn’t use a computer,” she said. “And because he was so smart, he could not acquiesce to all this. He just didn’t want to believe it wasn’t somebody else’s fault.”

One night around midnight, she heard him calling DirecTV, claiming there was something wrong with satellite service. Another time, when a light bulb needed to be replaced, he tore out the entire light fixture. “And then, of course, David got so defensive. He knew something was wrong, but he would not admit to it. Oh, life was a nightmare.”

‘She was afraid of David’

David and Sharon moved back to the Northland from Florida for the last time in May 2010, accompanied by Jackie Moen and David Jensen. Moen said her stepfather deteriorated dramatically during the three-day journey, apparently because of highway traffic.

“Movement is very hard on a person with Lewy Body,” she said. “To see that much movement coming at you is terrifying. David was literally shrinking in his seat.”

But the family still didn’t know the cause until later that month, when David was officially diagnosed with Lewy Body at the Struthers Parkinson’s Center in Golden Valley, Minn. By then, hallucinations were occurring frequently.

Jim DeLeo said he witnessed some of those episodes.

“He would say something to me like, ‘What are all those people doing in your car?’ ” Jim recalled. “And I would say, ‘Dad, that’s the Parkinson’s. There’s nobody there.’ And he would kind of grin and accept it. If it came from me, he would accept it.”

But he wouldn’t accept, or trust, the nursing aides Sharon hired to help with his care.

“He was so violent with them,” she said. “He was paranoid. He thought they were stealing from us. He’d grab them and shake them and tell me to reach into their pockets. … He said, ‘You’re stupid! They’re robbing us blind!’ ”

David was still an athletic, powerful man, and he intimidated some of the aides.

After one incident, a caregiver quit, Sharon said. “She was afraid of David when he’d grab her arm and not let go. He was very strong. You couldn’t break his grip.”

And when Sharon tried to correct David in the midst of his hallucinations, she became the enemy.

“There were two Sharons in his life,” she said. “The bad Sharon that my family was afraid he was going to harm. And the other Sharon that he still loved.”

David was never violent toward her, Sharon said. But one night in July 2010 she called 911 after he started talking about double suicide. “That creeps you out at 3 in the morning,” she said. “I thought: Well, what if he covers my face with a pillow?”

It came to a head the next month, when David threw a heavy object at a male caregiver. The other man caught the object, preventing it from flying through a bedroom window, but badly cut his hand in the process. Sharon decided she couldn’t care for her husband at home any longer.

‘It’s beautiful’

But the eight months David spent in assisted-living facilities and hospitals were equally nightmarish, Sharon said. She believes most of the facilities relied far too heavily on medications to regulate his behavior, a process she describes as “snowing” the patient. There still were episodes of violence. He fell while fighting with a caregiver, breaking his hip. David would never walk again.

In January 2011, he nearly died because of a twisted colon.

Sharon wanted to bring David home, but their house wouldn’t readily accommodate a wheelchair. Jensen converted a three-car garage into an assisted-living annex. It wasn’t quite ready when she brought him home on April 1, 2011, but soon the couple moved in and shared the last months of his life together there. A small dining table in the apartment is next to a window that looks out over Lake Superior, where David had spent so much time sailing.

“It’s beautiful,” he said, when he first saw it.

David’s intelligence never diminished, Sharon said, but it became difficult for him to verbalize what he wanted to say. An answer would come 10 minutes after the question, or it would be addressed the next day.

But David remembered family and friends to the end.

“The one thing that never escaped him, even to the day he died, was that ability to remember people and their names and faces,” Jim DeLeo said.

It was the right ending, Sharon said.

“He was home. I was with him. He knew he was home. His family was with him all the time.”

The grieving process is terrible, she said. She’s planning to put the house up for sale this summer. At night, she looks at pictures of David that she keeps on a coffee table. The memories remain.

“David was fun to be married to. He was so easygoing, and life was an adventure with David,” Sharon said. “He was the love of my life.”