Sharon and David DeLeo pose for a picture <\/p>\n
Sharon and David DeLeo pose for a picture in September 2011 after Lewy Body disease, a form of dementia often associated with Parkinson\u2019s disease, had taken its toll on him. (Photo courtesy of Sharon DeLeo) <\/p>\n
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. <\/p>\n
\u201cI looked up at him and said: \u2018Dave, I\u2019ve gone through a lot of things with you, but this takes the cake,\u2019 \u201d Sharon recalled. \u201cAnd he laughed.\u201d <\/p>\n
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\u2019t have known that just a few months later, they\u2019d begin a much more terrifying struggle. <\/p>\n
Lewy Body disease, a form of dementia frequently associated with Parkinson\u2019s disease, would inalterably damage David DeLeo\u2019s mind and drastically change his personality. <\/p>\n
\u201cDavid was the best, the nicest guy,\u201d 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. <\/p>\n
Lewy Body \u201cturned him into a hallucinogenic, paranoid person,\u201d she said, so violent that one of the caregivers she hired quit in fear. <\/p>\n
David\u2019s son Jim DeLeo, a St. Paul-based management consultant, also saw a stark change. <\/p>\n
\u201cPeople wanted to follow him,\u201d Jim said. \u201cHe always knew what he wanted to do. Very confident. Very decisive. \u2026 After the Lewy Body, when he started having hallucinations, you could see his confidence level wane. There wasn\u2019t that same decisiveness.\u201d <\/p>\n
Sharon\u2019s daughter, Jackie Moen of Isanti, Minn., said the change in David was \u201calmost 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.\u201d <\/p>\n
It was a bewildering adjustment for his family to make. <\/p>\n
\u201cYou\u2019re stunned. You\u2019re so stunned by this change in behavior,\u201d said Sharon DeLeo, 72. \u201cDavid was a totally different person. It was like living with a stranger.\u201d <\/p>\n
On Dec. 3, the disease ended his life. He was 75. <\/p>\n
\u2018We had a good life\u2019 <\/p>\n
David and Sharon DeLeo would have celebrated their 29th wedding anniversary on Saturday. The experiences of the past few years haven\u2019t dimmed Sharon\u2019s memories of most of their time together. <\/p>\n
\u201cWe had a good life, really,\u201d she said. \u201cWe had the kind of marriage where we did whatever we felt like doing. \u2026 Our marriage was magical. We were magical together. We didn\u2019t fight. There was nothing to fight about.\u201d <\/p>\n
Jim DeLeo, who was a young adult when Dave and Sharon married, remembers their companionship. <\/p>\n
\u201cThey were absolutely devoted to one another, and everything they did they did together,\u201d he said. <\/p>\n
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\u2019s Kitchen, a restaurant. They had a home in Florida as well as in the Northland. <\/p>\n
They traveled widely, often on a sailboat. David was an avid, competitive sailor; Sharon, though prone to seasickness, often went with him. \u201cEverybody kept asking me for years, \u2018Why do you keep sailing?\u2019 \u201d she recalled. \u201cWell, I wanted to be with David.\u201d <\/p>\n
Jim DeLeo still marvels at that. <\/p>\n
\u201cCan you imagine?\u201d he asked. \u201cGetting 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\u2019s amazing to me.\u201d <\/p>\n
Although David was diagnosed with Parkinson\u2019s in 1990, it didn\u2019t keep the couple from enjoying life. They adjusted their diet and made sure he got plenty of exercise to minimize the effects, Sharon said. <\/p>\n
When Parkinson\u2019s 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\u2019s 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\u2019s cousin was suffering from a diabetic episode. <\/p>\n
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. <\/p>\n
All five people made it to safety, but the DeLeos\u2019 Maltese dog was lost at sea. Sharon DeLeo has two Maltese dogs today, named Sugar and Spice. <\/p>\n
\u2018He wanted a better life\u2019 <\/p>\n
David still was coping well with the effects of Parkinson\u2019s in 2005, Sharon said, but he wasn\u2019t satisfied. <\/p>\n
\u201cHis gait was getting more noticeable,\u201d she said. \u201cIt did bother him. He was a big, strapping football player, a swimmer in high school and college. \u2026 He couldn\u2019t walk like he wanted to walk.\u201d <\/p>\n
David sought deep brain stimulation, a surgical procedure in which a device is implanted in the patient\u2019s brain to cut off the abnormal nerve signals that cause Parkinson\u2019s symptoms. The patient must be awake throughout the procedure. <\/p>\n
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\u2019s Florida home, and was told that the medication could be suspended for a few days. <\/p>\n
\u201cHe wanted a better life,\u201d Sharon said. \u201cPoor darling. His life was over with that surgery.\u201d <\/p>\n
The procedure was scheduled for Aug. 31, 2005. Two days earlier, David was given a neuropsychological evaluation, but they weren\u2019t told about the results, Sharon said. Instead, the surgeon told them David was a good candidate for the surgery. She didn\u2019t learn until five years later, when she requested medical records from the clinic, that the evaluation found David had symptoms of Lewy Body disease. \u201cI wouldn\u2019t have known what Lewy Body was,\u201d she said. \u201cSomeone would have had to explain it to me.\u201d <\/p>\n
But David already had shown signs of the illness. Sharon\u2019s 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. <\/p>\n
Because of the clinical signs of Lewy Body, Sharon believes the procedure never should have been allowed. \u201cOne of the criteria is you cannot have deep brain stimulation surgery if you\u2019re showing any signs at all of dementia,\u201d she said. <\/p>\n
Dr. Wolcott Holt, a neurologist at Essentia Health in Duluth, said signs of dementia normally preclude the procedure. <\/p>\n
\u201cMost places do not do deep brain stimulation when there\u2019s cognitive impairment, because it makes it worse,\u201d Holt said. <\/p>\n
The Mayo Clinic hospital in Jacksonville didn\u2019t respond directly to News Tribune questions about Sharon DeLeo\u2019s complaint but said its care was appropriate. <\/p>\n
\u201cWe extend sincere and deep sympathy to the family for their loss,\u201d spokesman Kevin Punsky said. \u201cMayo 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.\u201d <\/p>\n
David experienced temporary improvement in his gait, Sharon said. But his loss of short-term memory was immediate and devastating. \u201cHe could no longer use the remote control on the television set. He couldn\u2019t use a cell phone, and he certainly couldn\u2019t use a computer,\u201d she said. \u201cAnd because he was so smart, he could not acquiesce to all this. He just didn\u2019t want to believe it wasn\u2019t somebody else\u2019s fault.\u201d <\/p>\n
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. \u201cAnd then, of course, David got so defensive. He knew something was wrong, but he would not admit to it. Oh, life was a nightmare.\u201d <\/p>\n
\u2018She was afraid of David\u2019 <\/p>\n
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. <\/p>\n
\u201cMovement is very hard on a person with Lewy Body,\u201d she said. \u201cTo see that much movement coming at you is terrifying. David was literally shrinking in his seat.\u201d <\/p>\n
But the family still didn\u2019t know the cause until later that month, when David was officially diagnosed with Lewy Body at the Struthers Parkinson\u2019s Center in Golden Valley, Minn. By then, hallucinations were occurring frequently. <\/p>\n
Jim DeLeo said he witnessed some of those episodes. <\/p>\n
\u201cHe would say something to me like, \u2018What are all those people doing in your car?\u2019 \u201d Jim recalled. \u201cAnd I would say, \u2018Dad, that\u2019s the Parkinson\u2019s. There\u2019s nobody there.\u2019 And he would kind of grin and accept it. If it came from me, he would accept it.\u201d <\/p>\n
But he wouldn\u2019t accept, or trust, the nursing aides Sharon hired to help with his care. <\/p>\n
\u201cHe was so violent with them,\u201d she said. \u201cHe was paranoid. He thought they were stealing from us. He\u2019d grab them and shake them and tell me to reach into their pockets. \u2026 He said, \u2018You\u2019re stupid! They\u2019re robbing us blind!\u2019 \u201d <\/p>\n
David was still an athletic, powerful man, and he intimidated some of the aides. <\/p>\n
After one incident, a caregiver quit, Sharon said. \u201cShe was afraid of David when he\u2019d grab her arm and not let go. He was very strong. You couldn\u2019t break his grip.\u201d <\/p>\n
And when Sharon tried to correct David in the midst of his hallucinations, she became the enemy. <\/p>\n
\u201cThere were two Sharons in his life,\u201d she said. \u201cThe bad Sharon that my family was afraid he was going to harm. And the other Sharon that he still loved.\u201d <\/p>\n
David was never violent toward her, Sharon said. But one night in July 2010 she called 911 after he started talking about double suicide. \u201cThat creeps you out at 3 in the morning,\u201d she said. \u201cI thought: Well, what if he covers my face with a pillow?\u201d <\/p>\n
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\u2019t care for her husband at home any longer. <\/p>\n
\u2018It\u2019s beautiful\u2019 <\/p>\n
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 \u201csnowing\u201d the patient. There still were episodes of violence. He fell while fighting with a caregiver, breaking his hip. David would never walk again. <\/p>\n
In January 2011, he nearly died because of a twisted colon. <\/p>\n
Sharon wanted to bring David home, but their house wouldn\u2019t readily accommodate a wheelchair. Jensen converted a three-car garage into an assisted-living annex. It wasn\u2019t 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. <\/p>\n
\u201cIt\u2019s beautiful,\u201d he said, when he first saw it. <\/p>\n
David\u2019s 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. <\/p>\n
But David remembered family and friends to the end. <\/p>\n
\u201cThe one thing that never escaped him, even to the day he died, was that ability to remember people and their names and faces,\u201d Jim DeLeo said. <\/p>\n
It was the right ending, Sharon said. <\/p>\n
\u201cHe was home. I was with him. He knew he was home. His family was with him all the time.\u201d <\/p>\n
The grieving process is terrible, she said. She\u2019s 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. <\/p>\n
\u201cDavid was fun to be married to. He was so easygoing, and life was an adventure with David,\u201d Sharon said. \u201cHe was the love of my life.\u201d <\/p>\n
Tags: news, health, duluth, updates <\/p>\n<\/p>\n
See the article here: Sharon and David DeLeo pose for a picture Sharon and David DeLeo pose for a picture in September 2011 after Lewy Body disease, a form of dementia often associated with Parkinson\u2019s disease, had taken its toll on him. (Photo courtesy of Sharon DeLeo) DULUTH, Minn Continue reading
\nRare disease leads to Minnesota man's drastic personality change<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"