National Parkinson Foundation “Know the early signs” campaign

MIAMI, FL — November 7, 2014 – The National Parkinson Foundation (NPF), is raising awareness of the early warning signs of the disease and the important role family and friends play in caring for those affected. The organization’s campaign is also in support of the National Family Caregivers Month in November.

In the 60-second PSA in support of the campaign, U.S. Senator Cory Booker (D-NJ) talks about his father’s battle with Parkinson’s and the role his mother played as caregiver. Sen. Booker outlines ways to spot the early warning signs and where to seek help. The PSA will air in select markets across the country and also be available online in November to align with National Caregiver Awareness Month – a time to thank and celebrate the more than 60 million Americans who deliver care to seniors or people with disabilities or illnesses across the country.

“Caregivers, like my mom, face extraordinary demands both physically and emotionally,” said Sen. Booker in an op-ed published earlier this year in The Baltimore Sun. “More often than not, they are the ones navigating the treatment and care path — trying to figure out which approaches will bear the best results for their loved ones. This is why I am so grateful for organizations like the NPF because I know that they, along with others, offer support, strength and hope to patients and caregivers.”

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. There are a wide range of symptoms, including a progressive loss of motor control (e.g., shaking or tremor and lack of facial expression), and non-motor symptoms such as depression, anxiety and loss of energy. There is currently no cure.

Through ongoing research, education and outreach, NPF works to improve the lives of people living with Parkinson’s and assist patients and families in finding the best care possible. Today, NPF has created a global network serving the needs of the Parkinson’s community including 40 “Centers of Excellence” at top medical centers that deliver care to more than 50,000 Parkinson’s patients, and U.S. chapters and support groups providing access to local resources and services.

“National Family Caregivers Month is a time to acknowledge the vital role that family, friends and neighbors play in caring for friends and relatives,” said Joyce Oberdorf, President and CEO of the National Parkinson Foundation. “NPF is here to do ‘whatever it takes’ to help caregivers and patients through this journey.”

To watch the PSA produced by global public relations firm MWW and learn more about Parkinson’s disease, visit SFLTimes.com. To learn more about the early warning signs of Parkinson’s, visit www.parkinson.org/10signs.

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New Constipation Treatment Under Study for Parkinson’s Patients

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This is Dr. John C. Morgan, neurologist at the Medical College of Georgia at Georgia Regents University and Director of the National Parkinson’s Foundation Center of Excellence at Georgia Regents Medical Center Credit: Phil Jones

Georgia Regents Medical Center is among about a dozen centers nationally exploring the potential of a new

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drug that may offer relief to people with Parkinson’s who have failed standard approaches to treating constipation.

“Constipation in Parkinson’s is very prevalent,” said Dr. John C. Morgan, neurologist at the Medical College of Georgia at Georgia Regents University and Director of the National Parkinson’s Foundation Center of Excellence at Georgia Regents Medical Center.

In fact, it’s one of a handful of related problems, like an impaired sense of smell, that can actually precede a Parkinson’s diagnosis by years then remain a factor as more classic symptoms, such as tremors and stiffness, progress, Morgan said. Additionally, constipation can be a side effect of the myriad of medications patients may take for Parkinson’s.

The new study is

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sponsored by Rhythm, a Boston-based biotech company exploring RM-131’s potential in a variety of gastrointestinal problems. The Michael J. Fox Foundation for Parkinson’s Research provided Rhythm funding for earlier-phase clinical trials of the drug for constipation in Parkinson’s.

Study participants will give themselves a daily injection of an agonist for ghrelin, called RM-131. Ghrelin is a peptide hormone that naturally stimulates gut motility independent of dopamine, a chemical messenger in the brain and gut damaged in Parkinson’s, said Morgan. In the gastrointestinal tract, ghrelin also is believed to enhance cell

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proliferation, inhibit cell death and suppress inflammation.

The Augusta-based center is enrolling about a half-dozen patients in the two-week study offered through the Parkinson’s Study Group that will compare the efficacy of this drug that activates ghrelin to placebo.

Early studies of RM-131 in healthy individuals have shown it is safe and well-tolerated for up to 14 days and that it improves the rate of stomach emptying and bowel function, both important in avoiding constipation.

While better-known symptoms of Parkinson’ are clear indicators that movement is affected, a healthy gut also depends on movement to get food through the body, said Morgan, a study Principal Investigator.

Parkinson’s appears to result from the death of brain cells, also called nerve cells, which produce dopamine, a chemical messenger important to movement. The gut actually has as many nerve cells as the brain which is why the destruction also takes a toll on a patient’s ability to defecate, Morgan said.

“The gut does not move correctly all the way down – from the mouth to the anus, we think,” Morgan said. “But it can also be a problem with the pelvic floor because when we poop, we actually have to relax our muscles to get stool

out and patients with Parkinson’s may

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Study participants will keep a diary of their bowel activity and keep researchers posted on any abdominal pain they may experience. The most common side effects reported for RM-131 include dizziness, drowsiness and loose stools or diarrhea.

Morgan notes that while the cause of nerve cell death in the brain and gastrointestinal tract in Parkinson’s is not known, the brain shows signs of inflammation, which can indicate an autoimmune response, as seen in diseases such as lupus, arthritis and multiple sclerosis.

He always encourages patients to eat well and

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stay as active as possible and regularly asks about their bowel habits. However, even with due diligence, a percentage of patients continue to struggle with constipation, some to the point that they become impacted and require external stimulation, such as an enema, to get relief. In addition to the obvious discomfort, failure to defecate means the body holds onto toxins for extended periods, which can actually result in mental confusion, Morgan said.

While constipation is a transient state for most people, a study following thousands of Japanese-American men for decades showed the incidence of Parkinson’s was highest in those reporting less than one bowel movement daily and declined as the number of regular bowel movements increased.

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Save the Date: Miami Parkinson’s Day 2014!

Mark your calendars for our first annual Miami Parkinson’s Day! Join NPF South Florida as we learn about new treatments and medical research, try new exercise techniques for

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NPF Launches Free App for People Living with Parkinson’s Disease

MIAMI — July 23, 2013 — The National Parkinson Foundation (NPF) launched today Parkinson’s Central, a free app specifically created for people living with Parkinson’s disease and their families. This is the only comprehensive app for people living with Parkinson’s.

The Parkinson’s Central app is now available on iPhone and Android smartphones.

Research has shown that the way that patients learn about Parkinson’s is

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“NPF is dedicated to developing new concepts and technologies that engage people in their own care,” said Joyce Oberdorf, NPF’s President and CEO. “Parkinson’s Central is a simple yet powerful tool that we believe will positively impact the health of people with

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NPF’s Parkinson’s Central app features:

  • How to get the most out of your doctor visits
  • Ins and outs of diagnosis and medication management
  • Advice on how to live well with the disease
  • Information on insurance and financial matters
  • Tailored content for caregivers
  • “Near Me” tool to find local resources according to zip code

“Easy to use and easy to read, Parkinson’s Central is a veritable encyclopedia of Parkinson’s issues, not only regarding the treatment of the disease, but as a guidebook for positive and high-quality living with Parkinson’s,” said James Morgan, who was diagnosed with Parkinson’s disease

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Parkinson’s Central was developed as part of NPF’s overall vision to use innovation and technology to meet an ever-increasing demand for online health information and to help people with Parkinson’s now. This is the second free app that NPF has released; the Parkinson’s Toolkit, which launched in 2011, is an app designed for health care professionals.

The Parkinson’s Central app is free, and is available in the iTunes App Store and in the Android Market. Detailed information on the app is available at www.parkinson.org/parkinsonscentral.

Parkinson’s Central was made possible by the support of thousands of generous individual

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Posted in Chapter/Local News, Medical News, National News | Comments Off on NPF Launches Free App for People Living with Parkinson’s Disease

NPF South Florida Seeks Grant Submissions

NPF has a total of $60,000 and is offering one-time grants up to $5,000 for programs or projects that provide education and/or group classes to people who have Parkinson’s disease and/or their caregivers. Projects and

programs should be appropriate and tailored for people with PD,

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First Data from Largest, Ongoing Study of People with Parkinson’s Disease Reveals Depression Has Biggest Impact on Health Status

MIAMI, Nov. 28, 2012 /PRNewswire-USNewswire/ — The National Parkinson Foundation (NPF) today released early findings from the largest clinical

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depression is the most important factor influencing the health status of Parkinson’s patients. Read Full Article…

 

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Tai Chi Makes Parkinson’s Patients More Steady on Their Feet, Study Shows

Bloomberg – Nicole Ostrow, Feb. 6, 2012 — Tai chi, a Chinese

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Patients who did tai chi twice a week for six months had improvement in steadiness that was 2.5 times greater than those who engaged in resistance training and 4 times greater than those who did only stretching exercise, according to research published today in the New England

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Doctors recommend exercise for patients with Parkinson’s disease, a brain disorder that causes trembling, stiffness and balance impairment and increases the risk of falls, the authors wrote. Tai chi, known for its series of exact postures that flow one into the next, requires concentration and weight shifting that may have extra benefits for those with mild to moderate Parkinson’s, said lead study author Fuzhong Li.

“We have clearly shown that tai chi has the potential to help patients ease some of the movement disorder,” Li, a senior research scientist at the Oregon Research Institute in Eugene, Oregon, said in a Feb. 6 telephone interview. “It will definitely help people improve their balance. My recommendation would be to build it into daily activity.”

The study is the first to show that an alternative form of exercise can benefit Parkinson’s patients, Li said.

Tai chi uses a set of slow, self-initiated movements to move people away from their base of support in a controlled fashion, he said. Resistance training is more like aerobics and uses less conscientious movements, Li said.

10 Million Affected

About 60,000 Americans are diagnosed with Parkinson’s each year and as many as 10 million people worldwide are living with the disorder, according to the Parkinson’s Disease Foundation, based in New York. Men are more probable than women to have the disease.

Researchers in the study included 195 patients with mild- to-moderate Parkinson’s disease. The patients were assigned to participate in tai chi, resistance training or stretching for 60 minutes twice a week for 24 weeks.

Those in the

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tai chi group improved in how far they could shift their center of gravity without falling by 15 percent over the course of the study, while those in the resistance group improved 6 percent. Those who were in the stretching group had a 4 percent decline over the study period, Li said.

The research indicated that participants in

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the tai chi group performed better on movement control, showing a 12 percent improvement, while those in the resistance training group declined 4 percent and the people in the stretching group dropped 5 percent, Li said.

Better Than Stretching

The tai chi group performed better than the stretching group in walking and strength. They also fell less than those who stretched. There was no difference in falls between the resistance group and the tai chi group, the paper showed.

The findings will receive a lot of attention in the Parkinson’s community, said Blair Ford, medical adviser with the Parkinson’s Disease Foundation and a professor of clinical neurology at Columbia University in New York.

“Tai chi and probably equivalent methods are helpful at improving balance and decreasing falls and that’s very, very important for Parkinson’s disease,” Ford said in a Feb. 7 telephone interview. The study “might just get tai chi on the map as a conjunctive treatment for Parkinson’s. Medications alone don’t prevent falling.”

Andrew Feigin, a neurologist specializing in Parkinson’s disease at the North Shore-LIJ Medical Group in Great Neck, New York, said the findings give scientific backing to doctor recommendations that patients try exercises like tai chi to improve balance.

“Balance and gait are problems that people with Parkinson’s disease have,” said Feigin, who wasn’t an author of today’s paper, in a Feb. 6 telephone interview. “Things like stretching and resistance aren’t really working on balance. Tai chi really focuses on improvements in balance. It’s nice to get some actual data that shows doing those things can be helpful.”

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New Blood Test for Parkinson’s Studied

Test Has High Degree of Accuracy; Parkinson’s Experts

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Cautiously Optimistic

Feb. 22, 2012, WebMD Health News — By Kathleen Doheny WebMD Health News. Reviewed by Louise Chang, MD

An experimental blood test for Parkinson’s disease is more than 90% accurate in diagnosing the progressive disorder that affects movement and balance, according to its developers.

The test requires a single drop

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of blood, says Robert Nagele, PhD, a professor of medicine at the University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine.

It looks for specific proteins that are produced by the body in response to Parkinson’s disease, he tells WebMD. Nagele is also the founder of Durin Technologies, the test developer. Another co-researcher is a paid consultant for the company.

No blood test is yet commercially available for Parkinson’s, which affects 5 million people worldwide. The study is published in PLoS One. The news was met with cautious optimism by two experts.

About Parkinson’s

In Parkinson’s, the nerve cells or neurons in a brain region responsible for muscle

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movement and coordination deteriorate over time. Normally these cells produce a chemical called dopamine. Dopamine helps regulate such bodily functions as movement.

“Parkinson’s affects a specific part of the brain known as the substantia nigra,” Nagele says. At least a third of the neurons in this area have already died before symptoms appear, he says.

Symptoms include shaking, tremor, slowness of movement, stiffness in the arms, legs, and trunk, and balance problems.

Doctors diagnose it by taking a medical history and doing a neurological exam.

A blood test could help doctors diagnose and treat the disease earlier. Many teams are working on such tests.

Blood Test for Parkinson’s: Study Details

When brain

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cells die, Nagele says, they explode ”like a water balloon breaking.”

The contents of those dying cells spill partially back into the blood. “Their debris is released and your body will sense it and develop autoantibodies to clear that debris,” he says.

The new test looks for these autoantibodies in the blood specific to the disease. The researchers narrowed down a list of more than 100 of these autoantibodies to 10 that looked most promising. When these antibodies rise to a certain level, it signals disease, Nagele says.

To evaluate the Parkinson’s test, Nagele’s team looked at more than 150 blood samples, including:

Overall, the test identified 93% of those who had Parkinson’s. It identified correctly 100%

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of those who did not have it. Both

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results are considered important.

It could tell the difference between blood samples from patients with Parkinson’s, those with the other disorders, and those who were healthy.

Nagele estimates the test, when and if available, would cost about $200.

The new research is a ”proof of principle” study, he says, and much more research is needed.

“It is very exciting to see that many groups around the world have been attempting to develop blood tests for Parkinson’s disease,” Michael Okun, MD, medical director of the National Parkinson

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Foundation, tells WebMD. He reviewed the results.

Although Okun calls the new study interesting, he says that ”it only included 29 patients.”

However, he remains hopeful that the research will lead to a usable blood test.

“It sounds feasible and probably worth pursuing,” says M. Flint Beal, MD, the Anne Parrish Titzell professor of neurology and neuroscience at the Weill Medical College of Cornell University. He also reviewed the findings. He is also developing an early blood test for Parkinson’s disease that uses a different approach.

“This is something that should be validated,” he says of the new test. “What frequently happens is, the test looks very good initially. When you expand it to a larger population, the accuracy falls off.” Further study is needed, he says.

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Wii® for PD!!

ScienceDaily (June 11, 2009) — Parkinson’s disease is a degenerative disease that impairs motor skills. Dr. Herz theorized that the popular computer game console, which simulates various sports and activities, could improve coordination, reflexes and other movement-related skills, but he found additional benefits as well.

In an eight-week pilot study, 20 Parkinson’s patients spent an hour playing the Wii three times a week for four weeks. The patients, all in a stage of the disease

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in which both body sides are affected but with no significant gait disturbance yet, played two games each of tennis and bowling and one game of boxing—games entailing exercise, bilateral movement, balance and fast pace.”By the middle of the study, we actually had a number of people who could [defeat] their opponent out in the first round, which amazed us,” says Dr. Herz, who presented his preliminary findings at the fifth annual Games for Health Conference today in Boston.

The victories weren’t the biggest surprise, however. Participants showed significant improvements in rigidity, movement, fine motor skills and energy levels. Perhaps most impressively, most participants’ depression levels decreased to zero.

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45 percent of Parkinson’s patients are reported to suffer from depression, though Dr. Herz suspects the actual figure is much higher.

Studies have shown that exercise and video games independently can increase the production of dopamine, a neurotransmitter deficient in Parkinson’s patients. He suspects that’s

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the case with the Wii’s exercise effect. Dopamine also helps improve voluntary, functional movements, which Parkinson’s patients “use or lose,” Dr. Herz says. Wii, which features simulated movements such as cracking an egg, swinging a tennis racket and throwing a bowling ball, responds to a player’s movements rather than cues from a controller, so players can do full body movements and see their progress on a screen.

“I think we’re going to be using virtual reality and games a lot more because it provides a controlled physical environment that allows patients to participate in the activities they need or want to do. A patient doesn’t have to go to a bowling alley and worry about environmental problems or distractions,” Dr. Herz says.

Dr. Herz’s research was funded by a $45,000 grant from the National Parkinson’s Foundation. Next he plans to test the Wii Fit balance board with Parkinson’s patients and expand his studies to multiple sites.”Game systems are the future of rehab,” Dr. Herz says. “About 60 percent of

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the study participants decided to buy a Wii for themselves. That speaks volumes for how this made them feel.”

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EXPANSION OF PARKINSON’S DISEASE OUTREACH

Support Group and Wellness Classes to be Offered in Davie, FL

December 22, 2011|By Scott Fishman, Forum Publishing Group. The National Parkinson Foundation South Florida and the David Posnack Jewish Community Center are partnering to help people with Parkinson’s Disease and their families.

“This is a very meaningful expansion” explained Bill

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Marsa, president of the Herbert Kay Parkinson Chapter, one of the areas founding outreach organizations. “We have helped many patients and their families with our support groups and exercise classes in Aventura and hope to use the knowledge we have attained to reach even more here in the Davie area”.

Introductory meetings will be held at the David Posnack Jewish Community Center (JCC) on November 8th and December 5th from 11:00 to 12:30 and everyone is welcome—you do not have to be a member of the JCC. The agenda will include:

Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s with an estimated one million people with the disease in the U.S. and four to six million worldwide. At present, there is no cure for Parkinson’s disease and 50,000-60,000 new cases are diagnosed each year in the United States. The mission of the National Parkinson Foundation South

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Florida is “to create a better quality of life for all those in our communities affected

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by Parkinson’s disease”

and we are committed to continued growth to meet the needs of patients and families in our community.

NPF South Florida David Posnack JCC
PO Box 3646 5850 South Pine Island Road
Hallandale, FL 33008 Davie, Florida 33328
(305) 243-1061 (954) 434-0499
info@NPFSouthFlorida.org info@dpjcc.org

 


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