Tag Archives: disease

Young Hero: Jack Kacin

August 16, 2013 by

Seven-year-old Jack Kacin is the bravest child his mom, Kristi, has ever known.

Jack suffers from a rare disease called CANDLE Syndrome, which is Chronic Atypical Neutrophilic Dermatosis with Lipodystrophy and Elevated Temperature. This means he has daily fevers, rashes, delayed growth and development, liver enlargement, arthritis, and more to deal with on a daily basis. He also has to take his medications twice daily. Although he has this disease, Kristi says he acts like he doesn’t have one.

“Jack travels to the National Institutes of Health (NIH) in Maryland monthly and endures many medical procedures,” she says. “But he never worries about them and is very cooperative.” She believes that one of the reasons why Jack is such a good sport with these procedures is because he just likes to have fun in every situation, even if it’s a difficult one. “He likes to make people laugh…He remembers people’s names, and he always asks how their day is going.”

One of her favorite things about him, though, is just how lovable he is. She explains that there is a playroom at the NIH facility where Jack always plays with the other kids. After one visit where Jack had to stay for a month, Kristi says everyone in the playroom knew who he was. “He gives hugs to everyone. He loves to snuggle…He loves his doctors that care for him in Omaha…[He just] cares about everyone and is very social.”

Above all, Jack is a hero for other children, as well as Kristi, because he loves life no matter what. “He is truly an extraordinary boy with a big heart,” she says.

There will be a spaghetti feed, silent auction, and raffle event on September 22 at the Firefighters Union Hall (6005 Grover St.) from 12-6pm to benefit Jack and his parents. If you would like to donate to Jack, visit gofundme.com/JackKacin.

Do you have a Young Hero in your life? Tell us their story. They might be featured right here on our Young Hero page! Contact Bailey Hemphill.

From Patients to Caregivers

February 25, 2013 by
Photography by Bill Sitzmann

Margaret Ludwick spends her days sitting in a wheelchair at a senior care center in Elkhorn. She never speaks. The only expressive motion involves her hands—she constantly puts her long, tapered fingers together like a church steeple. Her big blue eyes stare straight ahead but focus on nothing. No one can reach her anymore, not her daughters, not her husband.

Alzheimer’s, the most common form of dementia in adults 65 and over, robs even the most intelligent people of their brain and eventually destroys their body. There is no cure. There is no pill to prevent it. There’s not even a test to definitively diagnose it. Effective treatments have proven as elusive as the disease, itself.

“We do have medications that may help with symptoms in some patients, especially in the early stages of Alzheimer’s,” says Dr. Daniel Murman, a specialist in geriatric neurology at The Nebraska Medical Center. “But they don’t truly slow down the disease process.”

According to researchers, the number of Americans living with Alzheimer’s will triple in the next 40 years, which means 13.8 million will have the disease by 2050 (Chicago Health and Aging Project research as reported by nbcnews.com).

Awareness of symptoms is crucial for early intervention.

“Memory loss and changes in behavior are not a normal part of aging,” stresses Deborah Conley, a clinical nurse specialist in gerontology at Methodist Health Systems who teaches other nurses and caregivers about Alzheimer’s. “I would urge family members to take [their loved one] to a family physician first, seek as much information as possible, and start making your plans.” An assessment that includes the person’s medical history, brain imaging, and a neurological exam can result in a diagnosis that’s about 85 percent accurate for Alzheimer’s.

Ludwick, a registered nurse, who worked at Immanuel Hospital for years, never received an extensive workup.

 “I would urge family members to take [their loved one] to a family physician first, seek as much information as possible, and start making your plans.” – Deborah Conley, clinical nurse specialist in gerontology at Methodist Health Systems

“I first noticed something was wrong about 15 years ago, when Mom was 70,” explains Ludwick’s daughter, Jean Jetter of Omaha. “It was the day I moved into my new house. Mom put things in odd places, like a box labeled ‘kitchen’ would wind up in the bedroom. And she stood smack in the middle of the doorway as the movers tried to carry large pieces of furniture inside, and she just stared at them.”

As Ludwick’s behavior grew worse, Jetter begged her father, Thomas, to get her mother help.

“He didn’t want to hear it. He kept saying, ‘This will get better.’ He had medical and financial Power of Attorney. Dad worked full-time, and she was home alone. This went on for eight years.”

Ludwick’s steady decline rendered her unable to fix a meal or even peel a banana. She lost control of bodily functions. After she was found wandering the neighborhood on several occasions, Jetter was finally able to call Adult Protective Services and get her mother into an adult daycare program. After breaking a hip two years ago, Ludwick arrived at the Life Care Center of Elkhorn.

“This is such a sad, but not unfamiliar case,” says Conley, who began working with Alzheimer’s patients in the mid-’70s. “Even in 2013, people do not know what to do, where to turn.”

Dr. Murman adds, “There is still a stigma attached to Alzheimer’s. People don’t like to hear the ‘A’ word. But it’s much better to be open and specific about it.”

A specific diagnosis may rule out Alzheimer’s.

“Depression can mimic the symptoms of Alzheimer’s…symptoms like mistrust, hallucinations, apathy, social isolation,” explains Dr. Arun Sharma, a geriatric psychiatrist with Alegent Creighton Health. “But we can treat that. We can treat depression.”

Dr. Sharma helped establish a 22-bed, short-term residential facility called Heritage Center at Immanuel Hospital to better diagnose the reasons for a person’s memory loss. Once a patient is stabilized and receives a proper care plan, they can return home. The more doctors learn, the faster a cure will come.

“I see something exciting in the next five to 10 years,” says Dr. Sharma. “If we identify and isolate the protein believed responsible for Alzheimer’s, perhaps we can do a blood test to catch the disease early.”

 “There is still a stigma attached to Alzheimer’s. People don’t like to hear the ‘A’ word. But it’s much better to be open and specific about it.” – Dr. Daniel Murman, specialist in geriatric neurology at The Nebraska Medical Center

But what about a cure? With 78 million Baby Boomers coming down the pike—10,000 of them turning 65 each day—this country faces an epidemic. And what about the psychological, financial, and emotional toll on the caregivers, who are very often family members? They, too, feel isolated.

“It was an impossible situation for me. I couldn’t get her the help she needed,” says Jetter, who bore the brunt of the family crisis since her married sister lives in Dallas. “Now that Mom is at [the nursing home], I can take a breather and concentrate on Dad, who also has mental issues.”

In recent weeks, her father, Thomas, has been admitted as a permanent resident of Life Care Center of Elkhorn as well.

What about her own family?

“I have no one. No husband, no boyfriend. I mean, what boyfriend would put up with all this?” asks Jean, who’s been shuttling between one parent and the other for years, all the while trying to run her own business. The situation has obviously taken a huge personal toll.

Conley has two words for anyone facing similar circumstances: Alzheimer’s Association. The Midlands chapter has support groups, tons of information, and can gently guide the adult child or spouse. They even have a 24/7 hotline: 800-272-3900.

For anyone dealing with Alzheimer’s, that number could become a lifeline.

Bipolar Disease

November 25, 2012 by

“My husband didn’t know if he was going to come home to Cruella Deville or Dolly Levi from Hello Dolly.” That’s how Jane Pauley, broadcast journalist and former co-host of the TV morning show Today, described her battle with bi-polar disease in a interview on Healthy Minds, produced by New York Public Radio. “Who knows what provokes it, but it was like a swarm of bees that wants a target,” she says.

Being diagnosed with bipolar disease was a shock, recalls Pauley, but getting a diagnosis and subsequent treatment, however, allowed her to regain some normalcy in her life again.

Bipolar disease is a serious mental illness that is associated with extreme mood swings from mania to depression. “It is one of the most serious illnesses we deal with because of the disruptive nature of the disease,” says Sharon Hammer, M.D., psychiatrist at the University of Nebraska Medical Center (UNMC). “It is more serous than depression or schizophrenia because it can lead to risky behaviors, such as drug and alcohol abuse, damaged relationships, and suicide. And because of the impulsive nature of the disease, there is often no time to intervene.”

The average onset of bipolar disease tends to occur in older teenagers and young adults ages 20 to 25 years old. “Many women may start to experience symptoms of depression in their teenage years followed by their first manic episode in college,” says Hammer. “This is a very risky time because the college years are often mixed with stress, sleep deprivation, and alcohol use, which are all triggers for episodes.”

“It is one of the most serious illnesses we deal with because of the disruptive nature of the disease.” – Sharon Hammer, M.D., psychiatrist at UNMC

Women with bipolar disease typically spend about 80 percent of the time in depression and 20 percent in mania. Episodes of mania are characterized by abnormal elevated moods that include irritability, being easily agitated, impulsivity, racing thoughts, and insomnia.

Many women tend to be in denial and don’t start taking it seriously until they have children, notes Hammer. Even then, it is often misdiagnosed as depression or anxiety due to the extended depressive states associated with the condition, and the fact that women are twice as likely to have depression than men. In fact, bipolar disease is the most under-diagnosed mental illness and the most challenging to diagnose, notes Hammer.

Misdiagnosis can create more problems because medications used for depression and anxiety are different than those used to treat bipolar disease and can make the condition worse.

In addition, untreated bipolar disease tends to gain momentum and become more malignant with time, says P.J. Malin, M.D., a psychiatrist with Alegent Creighton Clinic and an associate professor of psychiatry at Creighton University School of Medicine. “It can be very disruptive to other parts of your life. Approximately 60 percent of people with bipolar disease will develop substance abuse problems, and it carries a 15 to 20 percent suicide rate.

“Early treatment of the disease can help prevent the disease from getting more aggressive. Untreated bipolar disease, on the other hand, lowers one’s life expectancy by 10 years.”

If you are being treated for depression and are not responding to depression medications or you are experiencing negative or an unusual response, it is important to communicate this with your provider, adds Malin.

“Early treatment of the disease can help prevent the disease from getting more aggressive.” – P.J. Malin, M.D., psychiatrist with Alegent Creighton Clinic

You can also do your own test by taking the Mood Disorders Questionnaire (MDQ) online, which provides fairly accurate results and can help you and your clinician determine whether you are bipolar, notes Hammer.

Environmental factors and heredity appear to be the major risk factors for bipolar disease, says Malin. “There are different theories as to how the environment plays a role, but they include: obstetric complications, intra-utero viral infections, use of hallucinogenic drugs, and traumatic life events, such as the death of family or friends or abuse.”

Treatment typically involves a combination of medications and counseling that may be necessary over a person’s lifetime. “Counseling is huge for long-term success and stabilization,” says Robin Houser, a counselor for Nebraska Methodist Hospital’s employee assistance program, Bestcare EAP. “Bipolar disease is a lifetime problem, and counseling can help people learn coping techniques and avoid unhealthy thinking and unhealthy patterns of behavior. A lot of people think that once they have become stabilized that they don’t need medications or counseling anymore, but that’s when we’ll start seeing imbalances and manic episodes occur again.”

Women with bipolar disease are very sensitive to stress, lack of sleep, and environmental and seasonal changes, all of which can trigger an episode, notes Hammer. Practicing healthy lifestyle habits like getting regular exercise, adequate sleep, managing stress, and light therapy during the winter months can help keep the disease stabilized.

 “Counseling is huge for long-term success and stabilization.” – Robin Houser, counselor for Nebraska Methodist Hospital

Postpartum is also a common time to experience recurrences, probably because of sleep deprivation, says Hammer. There are medications that are safe to use during pregnancy, which are important to take to prevent a relapse. If a woman stops her medications during pregnancy, it can take up to six months to get the symptoms under control again, says Hammer.

“Newer medications as a whole have fewer side effects,” she says, “but it’s important that you are matched with the medication that works best for you and has the fewest side effects.

“Patients who are being followed and treated by a trained health care professional can function vey well and live a normal life.”

Erich Hover

October 25, 2012 by
Photography by Bill Sitzmann

Erich Hover still speaks of his father, Ed, in a tone of respect, describing him as a “big, strong, tall, handsome, six-foot-two guy” who liked to fish and hunt, play racquetball, and work in his garden.

“My dad was always strong for us…he always wanted to provide for us…he never wanted us to think that there was anything wrong with him,” Hover says.

But the younger Hover, an actor and producer, will be telling a different story about his father on the big screen. At 62, Ed Hover is in the advanced stages of Alzheimer’s disease only four years after his initial symptoms and diagnosis, typifying the early-onset form of the disease (his son prefers the term “younger-onset”) as being particularly aggressive and swift. Erich Hover is currently in pre-production for a feature film that will be based on his family’s experience.

“We want to shed some light on Alzheimer’s disease, and we also want to portray a family that’s sticking together through a very difficult situation. We want to tell an uplifting story…it’s important to me for it not to have to be a downer,” Hover says.

The Hover family at Erich's brother's wedding, 2011. Photo provided by Erich Hover.

The Hover family at Erich’s brother’s wedding, 2011. Photo provided by Erich Hover.

Hover, who graduated from Omaha Benson High School in 1998, launched his acting career eight years ago, appearing in local commercials for Horseshoe Casino, Regency Court, and the Iowa Lottery (he is still remembered for bursting out of a bucket, doused in black oil). In 2006, he left his full-time real estate position and relocated to Los Angeles. Among other films, he’s appeared in 2009’s For the Love of Amy (beloved Omaha actor John Beasley was a lead), and he also had a small role in 2011’s Moneyball, starring Brad Pitt.

The feature film will be his first project serving as a producer, and Hover credits his education over his acting experience with getting him there. He graduated from the University of Nebraska-Kearney in 2002 with a degree in organizational communication and a minor in marketing.

“Communications and marketing is kind of what this business is. A film never gets seen unless you find ways of marketing it,” he explains. “It absolutely helped me having that degree. It gave me the confidence that I can go out and produce something,
 create something.”

Hover, who already visits Omaha frequently to see family, says he made a deliberate choice to film in the area, with shooting likely to begin next spring, if not this fall. Local actors will be included in the cast, and he’s also partnering with some of the same Omahans “in the business” who helped him along in his acting career, including filmmaker Derek Baker, Manya Nogg of Actors Etc., and businessman/executive producer Jeff Burton. The three will share producing credits with him.

“We want to shed some light on Alzheimer’s disease, and we also want to portray a family that’s sticking together through a very difficult situation.”

“[Omaha’s] where I was born and raised, and it’s important to me to be able to bring a project back here. And it’s a personal story about me and my family, so I want to keep it as close to home as possible,” he says.

Hover is also excited to have others he’s grown to respect attached to his project. “Jay Giannone, who has acted in such movies as Gone Baby Gone, The Departed, the recently-released Safe, and the upcoming The Iceman, will act in the film, produce with me, and write the screenplay with Eric Watson based on my story,” he said. “Eric will write and direct the film. His credits include Pi (which won The Sundance Film Festival), Requiem for a Dream, and The Fountain.”

His movie, in which Hover plays the lead character, is close to home in other ways, too. The film is filled with personal references, from a 1950s pickup truck that refuses to start to dogs with the names of real Hover family pets.

“The people in the film are parallel to my family, and the major elements are actual real-life occurrences my family has gone through,” Hover says. “Even the dialog—the conversations between me and my father—are from things my dad and I have actually said to each other in real life.”

Ironically, Ed Hover watched his mother, now 93, struggle with Alzheimer’s before his own diagnosis. His son says he is acutely aware that the odds of being a third-generation sufferer are significant.

Hover with actor Philip Seymour Hoffman on the set of Moneyball. Photo provided by Erich Hover.

Hover with actor Philip Seymour Hoffman on the set of Moneyball. Photo provided by Erich Hover.

“I don’t want to live my life in fear, so I want to create something that can help find a cure,” he says. “I don’t have millions that I can donate to research, I’m not a doctor who can be in a lab finding a cure…I’m an actor and a producer, and if I can put something up on the screen that can reach a large audience, well, then, that can increase awareness and hopefully motivate people to take action with their time and their donations to research.”

His family, who is depicted in the movie, has been behind him from the beginning, Hover says.
“I really couldn’t have done this without my parents’ and brothers’ blessing. I mean, we’re talking about something that’s happening with our family, with our father,” Hover says. “My father’s in a place where I don’t know if he’s really exactly aware of what we’re doing, but he has always been supportive of my career…If my dad would have said ‘No, don’t do this movie about me,’ I would not have done it; I would have respected his wishes.

“The fact that he’s in this place where [Alzheimer’s disease] has been so aggressive and he’s so far along with it, I feel like I have to do this for him to honor him and to help other people, including my own family.”