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| Naples, Fla. - Jim Seitz and wife Grace |
Dave Osborn
7:25 AM, Apr 18, 2015
3 hours ago
He and his wife, Grace, 76, want to finish a journey they began years ago when they first started visiting U.S. state capitol buildings. They have nine left to visit, and it will require they travel in a private plane.
Their story is the subject of a documentary Spirit of Naples (SON) Studios — a nonprofit entertainment group — is filming, titled “Now I Lay Me Down: The James D. Seitz Battle with Parkinson’s Disease.”
The Seitzes — married 54 years ago — said the movie is primarily to bring more awareness about Parkinson’s disease and hopefully raise money for research. April is Parkinson’s Awareness Month.
'It’s not to send us off to state capitals,” said Grace Seitz, a retired registered nurse. “That’s the story wrapped up around a documentary.”
The first state Capitol they visited was out West. They watched a parade in Reno in the early 1990s and drove the next day to Carson City, capital of the Silver State, about 30 miles south.
“It was kind of a fluke,” Grace said. “Jim said, ‘I’ll take your picture in front of the Capitol.’ And I said, ‘Why don’t we see the rest of them’ ?”
Capitols they have yet to visit are in Texas, New Mexico, Arizona, Ohio, Hawaii, New Hampshire, Vermont, Montana and Idaho. They have assessed each they have seen, and agreed that the most beautiful Capitol building so far is in Harrisburg, Pennsylvania. The ugliest? In Augusta, Maine.
They follow the same routine; arrive the night before and set out the next morning to take a photograph of the Capitol’s dome and take a picture of Jim in front of a statue.
“One of the best parts of this is driving through the states,” Grace said. “West Virginia was stunning.”
“Everywhere we’ve driven has been different,” he added. “Our country is just gorgeous.”
“Everywhere we’ve driven has been different,” he added. “Our country is just gorgeous.”
When he began showing signs of Parkinson’s in 2009, the journey stopped.
CLOSER TO A CURE
CLOSER TO A CURE
Parkinson’s disease is a degenerative disorder of the central nervous system. Motor symptoms of Parkinson’s result from the death of dopamine-generating cells in a region of the midbrain. The cause of this cell death is unknown.
Seitz is part of Parkinson’s research studies that have enrolled hundreds of patients. The research is through Mayo Clinic Florida in Jacksonville, and Seitz makes the more than 300-mile trek there once a year to have his blood drawn and to undergo other tests, such as a psychological assessment.
The National Institutes of Health in 1997 established a special program to study Parkinson’s and the Mayo research is part of that, said Dr. Zbigniew Wszolek, professor of neurology at Mayo Clinic Florida in Jacksonville.
The Mayo program is among three that have been continuously funded through the NIH, said Wszolek, a researcher for the last 30 years. Mayo Florida collaborates with the Universities of Pennsylvania and Washington in the program.
“Progress in Parkinson’s disease is unbelievable,” he said, referring to how scientists are learning more about the disease.
Wszolek pointed to scientists in recent years identifying the LRRK2 gene, with variants being associate with an increased risk of Parkinson’s. This one day may help identify biomarkers of Parkinson’s, he said. Biomarkers help to follow the progression of a disease, such as how diabetes patients with high blood sugar need more insulin, Wszolek said.
“We are very close to finding curative treatments of Parkinson’s disease,” he said. “We are very close to finding the biomarkers to help us diagnose this better.”
There are two types of Parkinson’s — classic and atypical — and Seitz has classic Parkinson’s, Wszolek said. Classic usually means the disease progresses more slowly, he said.
If anyone wants to have a better chance of preventing Parkinson’s, Wszolek has one word for them — exercise.
“The people who exercise have a slower progression of the illness,” he said.
Coffee has also been shown to help Parkinson’s cases with fatigue and may even help to prevent it, he added.
ACTIVE IN THE COMMUNITY
ACTIVE IN THE COMMUNITY
The Seitzes moved to Naples 32 years ago from Chicago. Jim Seitz is a native of Freeport, Illinois, and graduated from the University of Iowa. He served in the Air Force and, while stationed in Orlando, met Grace, who was a nursing student at the time, at a church young adult group in 1959. They wed in 1961.
He later began working for banks, moving to Southwest Florida for a job with Northern Trust Bank in 1983. Jim Seitz became active outside of work, serving on boards that included the Philharmonic Center for the Arts (now Artis—Naples); the Shelter for Abused Women and Children; The Community School of Naples; the Public Media Advisory Board at Florida Gulf Coast University; and the Naples Arts Association.
Jim Seitz also helped in 1985 to found Faith Lutheran Church in Naples, serving as its first president.
Dr. John Campbell, a Naples neurologist who has a special interest in movement disorders, said he first saw Seitz in 2013. Campbell said, when diagnosing Parkinson’s, he looks for four main symptoms known as TRAP — tremor, rigidity, akinesis (loss of voluntary muscle movements) and posture.
“Jim, like everyone else, has a progressive disease,” Campbell said. “It certainly has a effect that’s much more than motor symptoms. It can affect people’s personality.”
Seitz at his home, while discussing his disease, suddenly began to cry quietly when hearing a story about someone’s dogs that had died two weeks apart. Seitz apologetically said Parkinson’s has caused him to lose control of such emotions.
Campbell — whose office is off Goodlette-Frank Road in Naples — said he’s seeing more and more Parkinson’s cases but pointed out that people are living longer.
“It’s almost to the point now where I can see strictly Parkinson’s patients, there’s that many cases around,” said Campbell, medical director of the Parkinson’s Association of Southwest Florida.
He said he’s optimistic that a cure can be found one day. For now, though, doctors can prescribe medicine to treat the symptoms, he said.
And he agreed with Wszolek about one way to help prevent Parkinson’s.
“There’s pretty good data that vigorous exercise is the answer,” Campbell said. “That’s the only thing we’ve got right now.
“I always joke with people that it’s hard to hit a moving target. A lot of people think health descends from the clouds.”
‘NOT OVER AND DONE’
‘NOT OVER AND DONE’
Filming continues on “Now I Lay Me Down,” and owners of a jet — Edd and Nina Hendee, who own Taste of Texas restaurant in Houston — have agreed to lend their plane so the Setizes can visit. If Jim and Grace can catch a flight from Naples to Houston, the Hendees have agreed to fly them to Austin, then to Santa Fe, New Mexico, and to Phoenix, and back to Houston.
To film in those cities in mid-May, the project would need $20,500 to cover costs such as film crew fees, transportation, housing, food and other expenses.
The Seitzes then would have six states left in which to visit.
The documentary will be narrated by Gregory Seltz, speaker of the Lutheran Hour radio program that’s on more than 1,350 stations. Kyle Saylors, the film director, has shot projects in more than 50 cities in the U.S. and in Africa, India, Ireland, Italy and elsewhere.
Rebeca Seitz of Naples, who will help produce the documentary, is the Seitzes’ daughter-in-law. She’s spearheading an effort as part of Spirit of Naples to bring a nonprofit, 120,000-square-foot, $42 million movie studio to Southwest Florida. Spirit of Naples studio would produce socially worthy movies, TV shows and other works, Rebeca Seitz said.
Filming of “Now I Lay Me Down” should wrap up in August, so they’re hoping to visit the state Capitols before then, she said.
They will enter the documentary in 2016 film festivals, including Sundance in Utah and Cannes in France, and hopefully the Naples International Film Festival in November, she said.
Rebeca Seitz said her father-in-law for years was physically and socially active, but Parkinson’s has all but ended that. She said it’s been tough to watch his health deteriorate.
“He mainly was a guy who always worked out and walked,” she said. “He’s always someone who has taken care of himself. It’s hideous. He’s always been the strong leader of this family and to watch his strength be taken away every single day is gut-wrenching.”
Jim Seitz needs daily medical care, and Sergio Gomez, a certified nursing assistant who is registered with Just Like Family Home Care in Naples and lives in Golden Gate, visits him daily. Gomez helps with everything from physical therapy to bathing to helping him eat and get dressed.
“Boy, if somebody can have a caretaker, a man’s man, that is so helpful,” Seitz said as Gomez sat nearby in the home.
Later, Seitz got up and walked out to his lanai, gazing out at the green golf course fairway next to their home on a sunny day.
“The thing I realize out of this is helping people who have Parkinson’s know it’s not over and done,” he said. “You have a lot of life to live.”
A PARKINSON’S PRIMER
What is Parkinson’s? It is a chronic and progressive movement disorder whereby vital nerve cells in the brain — called neurons — malfunction and die. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination.
Who gets Parkinson’s? Most instances of Parkinson’s occur after age 50. But the illness does occur in people between the ages of 30 and 50 or, in rare cases, at a younger age. About 4 percent of people diagnosed with Parkinson’s are younger than 50.
How many people have it? About 7 million to 10 million people worldwide live with Parkinson’s. In the U.S., as many as 1 million people have it — which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease. About 60,000 Americans are diagnosed with Parkinson’s each year.
How can you prevent from getting Parkinson’s? There is no known way to prevent Parkinson’s disease. However, research has shown that diet and exercise can make a different. People who eat more fruits and vegetables, high-fiber foods, fish, and omega-3 rich oils (sometimes known as the Mediterranean diet) and who eat less red meat and dairy may have some protection against Parkinson’s.
Where can I learn more? Go to WebMD.com, pdf.org, parkinsonsmovie.com or michaeljfox.org
Sources: Parkinson’s Disease Foundation, WebMD
What is Parkinson’s? It is a chronic and progressive movement disorder whereby vital nerve cells in the brain — called neurons — malfunction and die. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination.
Who gets Parkinson’s? Most instances of Parkinson’s occur after age 50. But the illness does occur in people between the ages of 30 and 50 or, in rare cases, at a younger age. About 4 percent of people diagnosed with Parkinson’s are younger than 50.
How many people have it? About 7 million to 10 million people worldwide live with Parkinson’s. In the U.S., as many as 1 million people have it — which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease. About 60,000 Americans are diagnosed with Parkinson’s each year.
How can you prevent from getting Parkinson’s? There is no known way to prevent Parkinson’s disease. However, research has shown that diet and exercise can make a different. People who eat more fruits and vegetables, high-fiber foods, fish, and omega-3 rich oils (sometimes known as the Mediterranean diet) and who eat less red meat and dairy may have some protection against Parkinson’s.
Where can I learn more? Go to WebMD.com, pdf.org, parkinsonsmovie.com or michaeljfox.org
Sources: Parkinson’s Disease Foundation, WebMD
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