National Parkinson Foundation Partners With Country Artist Doug Briney On "Parkinson's Song"

Parkinson's Song

Website:  http://www.dougbriney.com/
Nashville-based country music artist, Doug Briney and the National Parkinson Foundation have partnered for the release of Briney's "Parkinson's Song." Briney will donate a portion of the single's sales to the organization, and he will perform at live events, benefiting Parkinson's. "Parkinson's Song" was written by Briney and Howie Garoutte, a Parkinson's survivor. It was recorded at SweetSong Nashville with producer, Dennis Money (Dolly Parton, Bill Anderson.) The single is available for preview and download on itunes, amazon, and all major online retailers. It can also be downloaded from Briney's website at http://www.dougbriney.com.

Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s, affecting about one million people in the United States and an estimated four million worldwide. The Center for Disease Control rated complications from Parkinson’s disease as the 14th leading cause of death in the United States. The prevalence of the disease is expected to increase substantially in the next 20 years due to the aging of the population in the U.S., Europe and globally, as well as an increase in the age-related incidence of the disease. The economic burden of Parkinson’s disease is estimated to be over $14 billion annually in the U.S. — $8.1 billion in medical expenses and $6.3 billion in indirect costs attributed to Parkinson's disease.

For over half a century, the National Parkinson Foundation (NPF) has focused on meeting the needs in the care and treatment of people with Parkinson’s disease (PD). NPF has funded more than $189 million in care, research and support services.

In each of their research, education and outreach programs, NPF is dedicated to promoting their passionate belief that the best care is a comprehensive approach that addresses the whole person and the full range of symptoms of the disease, while continuously searching for the next insight that will change the course of this devastating disease. For more information, visit http://www.parkinson.org.

Doug Briney is a Nashville-based country artist and pastor. Signed with Tate Music Group, Doug has released two albums, It’s All Country and Super Country Cowboy. He is an Award-winning artist who has toured the country from Alaska to Alabama, winning an Independent Country Music Association Award for Best Live Performance and Best Video at the International Music and Entertainment Association Awards. He has appeared at CMA Fest, Hard Rock Cafe Nashville, Silver Dollar Saloon, Nashville Palace, Iditarod (Alaska), and the Alaska State Fair, performing alongside Bobby G. Rice, Georgette Jones, Ashton Shepherd, Billy Yates, Lulu Roman and many others. He is a Musicians On Call artist, performing for patients in Nashville hospitals. Doug is currently climbing the airplay charts with "Pretty Big Deal." For more information, visit http://www.dougbriney.com.

http://health.einnews.com/article/260699730/5EukxwoUEwWqSUFz

Michael J. Fox on Parkinson's Awareness Month - David Letterman

Michael J. Fox made his 41st and presumably final appearance on "Late Show With David Letterman" on Wednesday. And as with many of the final round of guests on the late night show, he didn't have anything in particular to promote so much as to have a final chit-chat with Letterman, who retires in May.

Fox, who was diagnosed with Parkinson's disease in 1991, spoke candidly about the moment when his doctor informed him he had the degenerative nervous system disorder.

"It was scary," he said. "I was 29 years old and so it was the last thing I expected to hear. I thought I'd hurt my shoulder doing some stunt because I had a twitch in my pinkie. And the doctor said 'You have Parkinson's disease.' He said, 'The good news is that you have 10 years of work left.'"

But as Fox proudly announced, he's managed to keep going for more than 20. He even had a new series, "The Michael J. Fox Show," which aired for a season on NBC in 2013.

Fox, whose Michael J. Fox Foundation is working to discover more clear-cut biomarkers to diagnose people with the disease before they start to display symptoms, was amazed that the way it's diagnosed is still akin to taking a drunk driving test.

 

http://health.einnews.com/article/260768256/azxXdBUZcBBuv4Gm

Traveling on a Flight with Parkinson's disease

Question: My elderly father flew on PenAir from Boston to Presque Isle, Maine. I phoned the airline ahead of time to ensure he would have wheelchair service. He has Parkinson's and is unable to walk any significant distance and the disease has affected his cognitive functions to a degree. 

On his return trip from Presque Isle to Boston, he approached the ticket counter on foot and due to the close proximity to the gate he was not offered a wheelchair. He had a small, wheeled suitcase as his carry-on, but due to the small size of the PenAir plane it could not be brought into the cabin. When the agent checked him in, she handed him a small ticket that she said was to be used for retrieving his carry-on luggage when he arrived in Boston and took his suitcase away. He then went through security screening and waited at the gate.

During the flight, an agent at PenAir from Presque Isle phoned me to tell me that my father had left his luggage behind. We determined that while his medication was not left in the bag, his hearing aid was. My father is unable to hear without use of his hearing aid. I worked to set up an overnight delivery of the bag and the PenAir agent was kind enough to deliver it to the UPS office after I faxed over the shipping label.

The total cost of shipping his luggage to California was $237. I am requesting a refund for this expense. My father was under wheelchair assistance request and as such, I would hope that the airline would assist with his boarding, including assuring that he brings his bags on board. I believe the ultimate responsibility for the safe passage of my father and his single carry-on item rests with PenAir. Can you help me get reimbursed for the cost of shipping his carry on?

— Liz Chassé-Crouse, Sacramento, Calif.

Answer: Chassé-Crouse tried ahead of time to ensure her father's long travel day would be as easy as possible by requesting wheelchair assistance from PenAir, a commuter airline with hubs in Anchorage and Boston. That's a free service that PenAir and other airlines offer travelers who need additional help transiting the airport. The service would have helped him manage his luggage, too.

"A passenger requiring wheelchair assistance has the option of holding onto their carry-on (in their lap while in the wheelchair) or our agent can assist in getting the bag to the security checkpoint, and onto the aircraft," says PenAir's chief operating officer, Dave Hall.

But while airlines will provide wheelchair assistance to anyone who has difficulty making it to the gate, they don't provide assistance to passengers who may have some cognitive issues, says disability travel expert Candy Harrington, author of several books on barrier-free travel.

And as it turns out, Chassé-Crouse's father was on his own once he left the check-in area. When PenAir reviewed Chassé-Crouse's complaint, the airline determined that her father had declined wheelchair assistance at Presque Isle. The distance from check-in to the Transportation Security Administration (TSA) security checkpoint is no more than 30 feet, according to the airline.

Getting an older parent to accept assistance can be challenging, according to Harrington, especially if they think it's only a short distance or that they don't really need the assistance.

"There is just nothing you can do to force a relative to use an airport wheelchair," says Harrington. "Sometimes it's like walking on eggshells."

Due to space limitations on the aircraft, PenAir required that Chassé-Crouse's father's gate check his carry-on, rather than bring it into the cabin. The check-in agent tagged the bag with the airline's blue carry-on label, and explained that he was to leave it planeside when boarding and to collect it upon arrival in Boston, but did not take the bag from him, according to PenAir. While waiting for TSA screening to start, Chassé-Crouse's father apparently forgot his carry-on in the lobby seating area.

Although every Parkinson's disease situation is unique, the stress of travel can make Parkinson's symptoms more pronounced, including cognitive issues, according to Linda Pituch, senior manager of patient services at the Parkinson's Disease Foundation.

Of course, the stress of travel leads people of all abilities to leave things behind. The TSA alone collects thousands of forgotten bags, cellphones, laptops, sunglasses and more from the 60 million people who fly each month. The catalog of misplaced items in airports and planes, hotels and rental cars can be downright bizarre -- and valuable.

Fortunately, Chassé-Crouse's father's left-behind bag was spotted in the Presque Isle airport by a TSA agent, who brought it back to PenAir.

From there, the normal procedure would have been to first do a security screening of the bag and then send it onward to his connecting carrier in Boston, according to Hall. But when a PenAir agent looked in the bag to identify it, she found that it contained items that the airline assumed he needed, says Hall. That included his hearing aid, without which he had trouble communicating.

In order to expedite delivery of the bag to the address Chassé-Crouse provided, and not just to the airport, PenAir worked with her to send it overnight. A PenAir agent even drove several miles to drop it off for delivery.

"If we had forwarded the bag via normal procedures, it wouldn't have gotten to the San Francisco airport for at least a day or more," says Hall.

PenAir agreed to take a second look at Chassé-Crouse's complaint, and offered to reimburse her for the $237 in shipping costs.

"We have made a special exception to cover the costs of shipping the bag," says Hall. "We care about our customers and are sorry Mr. Chasse left his carry-on item behind, and are happy to make this service gesture in shipping the bag."

How can you avoid trouble?

• Escort travelers with special needs all the way to the gate. Airlines can issue gate passes to parents bringing unaccompanied minors through security and all the way to the gate. Likewise, family members or companions can also conduct people who need assistance, such as elderly parents or spouses.

"This is authorized under the Aircraft Operator Standard Security Program and it's been our experience that it is usually approved and a rather seamless process," says TSA representative David Castelveter. The accompanying family member needs to request the gate pass from the airline and present valid identification. The airline runs the information through the TSA's Secure Flight program, and issues a gate pass. Airlines issue these gate passes, not the TSA, but the latter can help answer questions and facilitate the process with airlines. Travelers can contact the TSA at (866) 289-9673 or via e-mail at TSA-ContactCenter@tsa.dhs.gov.

• Discuss travel with the doctor. Travelers with Parkinson's disease may do better with medication adjustments on the day of travel, under the supervision of their physicians, according to Pituch. Timing travels well is also important, since Parkinson's symptoms can be worse at specific times of the day, she says.

• Attach a note to the ticket information of the traveler requiring wheelchair assistance. Describe his or her carry-ons in detail, so it's easier for attendants to keep track of luggage when the traveler with Parkinson's might not remember to share those details, says Pituch. Make sure luggage has contact information both inside and out.

• Call the Parkinson's Disease Foundation's toll-free Help Line for additional tips and support at (800) 457-6676.

• Go along for the trip. For some aging parents or travelers with cognitive issues, traveling alone may simply become too difficult. "There may be some resistance on the part of the parent to have someone accompany them, so my best advice is just to make it sound like it will be a fun trip for the both of you," says Harrington.

http://www.usatoday.com/story/travel/columnist/burbank/2014/12/03/traveling-with-parkinsons-disease/19789677/

Naples man with Parkinson's, wife plan to finish visiting state Capitols

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.”

When he began showing signs of Parkinson’s in 2009, the journey stopped.

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

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’

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

Copyright 2015 Journal Media Group. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

http://www.naplesnews.com/lifestyle/faith-and-values/naples-man-with-parkinsons-wife-plan-to-finish-visiting-state-capitols_54376090

Boxing allows those with Parkinson's to fight back symptoms

posted: 4/17/2015 7:00 AM

EVANSVILLE, Ind. -- Boxing wasn't a sport Don Kellams ever considered taking up, especially after receiving a Parkinson's diagnosis. But the 68-year-old credits his three-times-a-week boxing workout with helping him control the effects of the neurodegenerative brain disorder.

The downtown YMCA has been offering the Rock Steady Boxing program since September, and Kellams has been a part since the very beginning

"It helps me immensely," he said of the class. "I never dreamed of boxing but it makes you feel good because you are doing the same things as other people."

Since the class started, the only sessions he's missed were when he was recovering from knee-replacement surgery.

Tracy Gander, health initiatives director of the YMCA of Southwest Indiana, said the Y was approached by someone in the community with Parkinson's about bringing the Rock Steady program to the Y. The method was founded in Indianapolis in 2006 and began offering affiliate programs in 2012. It is a boxing training program with no contact for those living with Parkinson's disease that helps improve balance, hand-eye coordination, speed of movement, agility, muscle power and mental focus. The local Y is the only YMCA in the country to offer the Rock Steady program.

"This is an amazing group of individuals who have made great progress," Gander said. "The concept of boxing is not lost on them - they get to fight back at the disease and take back some control and power."

Kellams's wife, Chris Kellams, said she's seen a big improvement in both his physical and emotional wellbeing since he's been involved in the class.

"I think he's proud," she said. "The workout they do is pretty intense. It's a lot for them."

Rock Steady Coach John Richard said the workout they get is the same that he gives to his boxing for fitness class, but he adds more balance work.

"What really has surprised me is how the moving in boxing can be used to combat some of the things going wrong with people suffering from Parkinson's from stiffness and rigidity," he said. "Boxing has a lot of rotation and also deals with hand-eye coordination and coordinating hands and feet to work together."

He said he's joked with the Rock Steady class that he wishes his youth boxing classes worked half as hard as they do. The response from the Rock Steady participants: "We have more incentive."

"They are the most courageous group of fighters," Richards said. "It's one of the best things I've done since I've been involved in boxing. Seeing the heart and determination and watching these people get stronger and doing things they thought they'd never be able to do, breaking barriers, it has all been amazing."

Kellams first started noticing signs of the disease before he retired from the Plumbers and Steamfitters Local 136 in 2004 but ignored them. But in 2007, Chris Kellams was finally able to talk him into going to a doctor. The first neurologist they saw diagnosed him with a tremor disorder, but the symptoms continued to get worse, so they sought another opinion in 2009. The doctor immediately diagnosed him with Parkinson's.

That's when he knew he had to retire as Poseyville's deputy marshal, a position he'd held for more than 20 years.

"You can imagine what kind of reaction I'd get if I'd pulled my gun and would be going like this," Kellams said with a laugh, holding up his arms as they shook uncontrollably. "They'd think I was Barney Fife."

Programs like Rock Steady and the Parkinson's Awareness Support Association of the Tri-State have helped the Kellams manage both the physical and emotional elements of the disease, along with medical care.

"We've learned a lot about the disease, treatment and studies through the support group and Rock Steady," Chris Kellams said. "They have been amazing supports."

The Kellams continue to travel and enjoy their time together, happy that many of his symptoms are well under control. Don Kellams has even continued his art, something Chris Kellams also started doing to help keep his interest up in a lifelong passion.

"We have a very good outlook on it," Chris Kellams said. "We are staying positive. We now know what it is we are fighting, and we are dealing with it. I'm proud of the way he's dealt with it."

Richards said the goal of the Rock Steady program is to help those suffering from Parkinson's to have a little control of their life. Because there is currently no cure for Parkinson's, there isn't a lot people can do, so any effort to slow down the physical degeneration is good.

"They are spending a lot of time in doctors' offices and specialists," he said. "This is a chance for them to get out of that and not be treated like a patient. They are a boxer, a fighter. And their support team, caregiver, they are their coach or corner man."

Source: Evansville Courier & Press, http://bit.ly/1acn8odhttp://health.einnews.com/article/260564504/ClANvPDB2EdnGnZr

Parkinson's caregivers need to take care of selves too

Jill Rosner

5:27 p.m. EDT, April 16, 2015

In my last article, I discussed the signs, symptoms and consequences of Parkinson's disease. Much like many other degenerative neurologic processes, Parkinson's presents many challenges to the person affected and to the caregivers as well.

The focus after diagnosis, which can be challenging, is often aimed at treatment of the movement complaints, while the other symptoms can prove to be just as debilitating. These other symptoms — which can include pain, depression, anxiety, hallucinations, and memory and focusing problems — can lead to stress in both the person affected and the caregiver. Caregiver depression is often directly related to patient depression.

Caregivers often complain that they are overlooked and ill-equipped to provide care to their loved one. Many feel thrust into the role with little attention given to their needs. Many may feel that they are just "expected" to jump in and provide care with little preparation for what will be expected of them, as well as anticipatory guidance for what challenges they may face.

In an article entitled "Quality of Life in Caregivers of Parkinson's Disease," caregivers were noted to have increased depression scores, poor social lives and low quality-of-life scores. Another study published in the South African Journal of Occupational Therapy in particular cites isolation, lack of time, feelings of powerlessness, stress, financial concerns and feeling physically drained as the most common experiences of caregivers.

Parkinson's is progressive and the course for each patient is different. Not all who are affected will experience the exact same symptoms at the same time. Some may experience symptoms occurring at different levels of intensity, and the progression may vary from one person to another. With so much uncertainty, the emergence of new symptoms may take the person affected, as well as the caregiver, by surprise. Unless they are prepared.

Particularly challenging is the sleep disturbance that often accompanies Parkinson's disease. Special attention to quality of sleep and bedtime routines is important for quality of life. Vivid dreams may interrupt sleep and contribute to decreased quality of sleep. The sufferer's quality of sleep often affects the caregiver's quality of sleep. Hallucinations can be particularly difficult to control and distressing for both patient and caregiver.

What can the family affected by Parkinson's disease do to increase quality of life for all involved? As previously acknowledged, caregivers are often the most overlooked while being a crucial part of the care team. Managing caregiver stress requires the caregiver to reach out to those around them: family, friends, social circle, and community resources to provide support.

I find an effective means for the primary caregiver (whether a spouse, child, relative or friend) to connect with other family members is to communicate via a family meeting. The experiences of various family members are often very different. When all involved are connected in person in the same room and/or via a conference call, everyone can have the opportunity to share their thoughts, concerns and suggestions for solutions.

When family members are at a distance, it can be particularly difficult for those family members to feel connected and have a full understanding of what daily life looks like for the immediate caregiver. Unfortunately, long-distance family members may have unrealistic expectations of the local caregivers and an altered view of what's really happening. This results in additional stress for the caregiver(s) who is/are doing the daily work.

If a hospitalization takes place, the most all-inclusive approach may be to involve your local palliative care team. Palliative care is often mistaken for hospice care and consequently overlooked as an option for comprehensive long-term planning. Carroll Hospital Center offers palliative care to complement on-going treatment for the symptoms of Parkinson's or any chronic disease process. This excerpt from the Carroll Hospital Center Palliative care brochure best explains what palliative care offer:

What can the palliative care team do for patients and families?

•Provide emotional and spiritual support

•Collaborate with nurses and physicians to address the management of symptoms, such as pain, shortness of breath, nausea, fatigue and anxiety

•Educate to promote understanding of the underlying disease process

•Provide easy-to-understand explanations of difficult medical conditions

•Improve care when provided simultaneously with optimal medical management

•Coordinate care between multiple providers and consultants

•Assist in establishing goals of care and priorities

•Assist with advance directives

•Ease transition out of the hospital using a multidisciplinary approach

Caregiving is a demanding and challenging endeavor. Self-care is so important for caregivers. Take a break, get help, create a "helper list " now so that if you need help you can go to the list of all the people who have offered to pitch in and access it quickly.

Some other self-care ideas for caregivers include: Create a folder or book to organize medical records and include a question page for the doctor or health care professional, let go of feelings of guilt, attend a support group, talk about your feelings with a trusted friend, and take care of your own health needs. These are just a few of the suggestions for caregivers to decrease the stress of providing care. Remember caring for another requires caring for yourself as well.

Jill Rosner is a registered nurse, certified geriatric care manager and owner of Rosner Healthcare Navigation. She provides patient advocacy and care management services to clients with health and aging issues. Contact her at JillRosnerRN@aol.com.

Resources

Caregiver Distress scale and Caregiver stress inventory: http://www.parkinson.org

Caregiver Alliance Caregiver Self Care: Caring for You: http://www.caregiver.org

Carroll Hospital Center palliative Care call 410-871-7890 or visit http://www.CarrollHospitalCenter.org/palliative-care

Copyright © 2015, Carroll County Times

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Stanford Dance Division brings documentary about dancing with Parkinson's to campus

Stanford Report, April 16, 2015

Stanford faculty and students explore approaching Parkinson's disease with intentional movement. Screening of documentary Capturing Grace by a Stanford alumnus is the centerpiece of two days of events during Parkinson's Awareness Month.

 BY ROBIN WANDER

Eddie Marritz

David Leventhal, director of Dance for PD, teaches a community class. Stanford's Dance Division, Dance for PD and the Mark Morris Dance Group are presenting a film about dance and Parkinson's disease on campus Friday and Saturday. 

The tagline for Dave Iverson's documentary film about dance and Parkinson's disease, Capturing Grace, is, "There are no patients. There are only dancers." The quote from a patient in the film underscores the transformative power of intentional movement not as therapy or treatment, but as joyful expression. The line is an invitation to leave your hospital gown at the door and just dance.

Stanford's Dance Division and the San Francisco Dance Film Festival in association with Dance for PD and Mark Morris Dance Group are co-presenting two screenings of Capturing Grace. The first screening is Friday, April 17, at 7 p.m. in Cubberley Auditorium and the second is Saturday, April 18, at 1:30 p.m. in Cemex Auditorium. The screenings are ticketed but free to Stanford students. The film is the centerpiece of a two-day exploration of the intersection of dance and medicine.

Since his Parkinson's diagnosis in 2004, Stanford alumnus Iverson has been an education champion for the progressive disorder of the nervous system that affects movement. He wrote, reported, directed and co-produced the 2009 PBS Frontline documentary My Father, My Brother and Me, using his family's saga with the disease as a starting point to explore the larger issues of scientific research, the quest for a cure and the political controversies surrounding stem cell transplants. He also works as a contributing editor for the Michael J. Fox Foundation for Parkinson's Research. People in the Bay Area will know Iverson as the long-time Friday host for the KQED radio program Forum.

Capturing Grace, Iverson's latest project, is about what happens when the legendary Mark Morris Dance Group joins forces with people with Parkinson's to stage a unique dance performance.

Iverson discovered Dance for PD while filming his Frontline documentary. "I visited a class and there's a short scene we included in that earlier film. But I knew when I was there that first time that someday I wanted to go back. Something happens in that dance class. I felt it the first time I was there and I continue to feel it every time I visit a class, with camera or without," he said. "Something transformative happens that has to do with both the experience of dance and the experience of community." He observed that people in the class didn't talk about Parkinson's much and the goal of the class isn't to translate dance movement into skills for daily living, like getting up out of a chair or buttoning a shirt. The goal is artistic expression. 

"One thing I've come to believe about Parkinson's is that it's a disease of subtraction. It takes things from you one by one. And one of the many things I learned from the people in the class is that if you are confronted with a disease of subtraction, you better believe in addition. You better start adding things back into your life. For the people we profiled in Capturing Grace, I think dance helped get them back on the plus side of the ledger."

When Diane Frank, dance lecturer in the Dance Division, was approached by the San Francisco Dance Film Festival about screening Iverson's film on campus, she felt a strong sense of alignment and shared purpose with the filmmakers and the dancers in the film. Frank  said she believes that dance is a transformative experience for all and that dance practice serves to build a sense of wholeness in people.

"Dancing is not simply a set of bio-mechanical skills. Dancing is driven by intent; dancing externalizes expressive purpose. Experienced together, dancing creates community," Frank said. "I want our dancers to see that transformative and generous experience, captured so well in this film."

Frank easily found enthusiastic campus co-sponsors for the Stanford screenings, crediting the university's interdisciplinary inquiry tradition and particularly the Stanford medical community’s commitment to exploring how arts practice intersects with medical practice, for both patients and physicians. Frank also found a kindred spirit in Dr. Helen Bronte-Stewart, a former dancer who is now the director of the Stanford Comprehensive Movement Disorders Center, the co-director of the Stanford Balance Center, and the division chief of movement disorders in the department of neurology and neurological sciences. She also directs the Stanford Human Motor Control and Balance Laboratory.

Frank and Bronte-Stewart built two days of programming around the film.

The two screenings are followed by panel discussions and Q&A with Iverson, Bronte-Stewart and David Leventhal, a former dancer with the Mark Morris Dance Group and the current director of Dance for PD. The discussions are moderated by Dr. Maren Grainger-Monsen, a physician, filmmaker-in-residence and director of the Program in Bioethics and Film at the Stanford University Center for Biomedical Ethics.

Iverson and Leventhal will give a presentation about the collaboration between the dance company and Parkinson's patients, the power of art and the intersection of dance and health on Friday at 1:15 p.m. The presentation is in Pigott Theater in Memorial Auditorium and is free and open to the public.

Saturday at 10 a.m., Leventhal will lead a community dance class in Bing Concert Hall Studio for Parkinson's patients, students and the Stanford community. Participants will have the chance to unpack their movement experiences, and Leventhal will share his thoughts on teaching and his vision for the Dance for PD program over lunch. This event is sold out, but the organizers have a wait list.

April is Parkinson's Disease Awareness Month. Meaningfully, these campus events underscore an increased awareness of the intersections of dance, medicine and the benefits of continuous arts practice. "Dance in community sustains health and provides a way for lives to be continually engaged in motion and continually expressive of the human condition even while challenged by PD," said Frank.

Bronte-Stewart chronicles the history of Dance for PD by relating that "it started as an idea, was born as an experiment, and has emerged as an innovative global program that has launched in more than 100 communities in nine countries, impacting thousands of people with Parkinson's, their families, and care partners." Stanford Healthcare offers Dance for Parkinson's classes at the Neuroscience Hoover Pavilion.

Frank pointed out that dance therapy addresses all manner of physical, social and emotional imbalance. "Sometimes these needs are extreme, significant or progressive physical disability or disorder, severe depression or autism for example. Sometimes dance therapy is used to enhance, restore or maintain balance, a sense of general well-being, a sense of groundedness, a sense that the body is engaged fully in patterns of movement that restore breathing, complete range of motion," she said.   

Similar to Leventhal's career path, Frank reported that numerous Stanford dancers have gone on into professions that focus on the body in some substantial way. They are now primary care doctors, physical therapists, K-12 teachers, dance teachers, and neurosurgeons. "Their life's work has been informed by their dance experiences while undergrads at Stanford. As dancers, they experienced the body's sense of wholeness, its capacity to act, to express, to communicate. They carry that sensibility, that focus, into the work of their chosen fields," she said.

Recalling his own Stanford experience as an English major, Iverson remembers taking a class in Renaissance literature from the late Professor Rob Rebholz. One day in class Rebholz read Ben Jonson's poem "On My First Son." "Rebholz was a fabulous teacher and could hold a class in the palm of his hand. And when he finished reading that poem, he looked up and said 'That's the best poem that's ever been written.' I've always remembered that moment. I think it taught me something fundamental about the power of human expression and the importance of doing something as well as you possibly can. And maybe even more, it taught me that when you believe in something, sometimes you have to go out on a limb, you have to be willing to go as far as you can in order to pursue a particular dream." 

As for Iverson's Parkinson's progression, he said he's doing really well. "Parkinson's is a very idiosyncratic condition. There's an old saying that 'if you've met one person with Parkinson's, you've met one person with Parkinson's.' Progression varies hugely as do symptoms. I think I got lucky and drew the right card. I'm also fortunate in that the medications work really well for me in controlling symptoms. And I've been obsessive about exercise and I think that's made a huge difference as well."

MEDIA CONTACT

Robin Wander, University Communications: (650) 724-6184, robin.wander@stanford.edu

Diane Frank, Dance Division: (650) 723-1234, dfrank1@stanford.edu

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