Congress Increases Research Funding, Shows Support for Care Partners

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Today, the president signed a bill that increases federal research funding and takes important steps to better support our nation's care partners. Through its tireless advocacy work, the Parkinson's community played a role in the passage of this important law.

Law Bolsters Funding for Research

A critical provision provides funding for the National Neurological Conditions Surveillance System. This database will capture demographic information on people living with neurological diseases, which is key to helping researchers target their work and increase understanding of these conditions. While it was signed into law in late 2016, the database was never funded or implemented. But with the passage of this bill, it now can become a reality. (As the law does not specify which diseases the National Neurological Conditions Surveillance System will track, the Foundation is working with the Centers for Disease Control and Prevention, which will house the database, to push for the inclusion of Parkinson's.)

The law also includes a $2 billion funding increase for the National Institutes of Health (NIH). The NIH is the largest public funder of Parkinson's research, investing $169 million in the disease in 2017. This funding boost is key to supporting the foundational research the agency carries out to better understand, diagnose and treat various health conditions.

OTSEGO’S WATER IS SAFE DESPITE TRACE DIOXINS

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Otsego’s municipal water has been given a clean bill of health despite a trace amount of highly toxic dioxins.

Otsego city manager Aaron Mitchell late last week announced the results of a recent round of extensive testing of the city’s three operating wells by saying the city now knows what is in the drinking water.

“I believe the testing we have gone through has been more rigorous than any municipality in the state,” Mitchell said. “And after all of that testing, we know that Otsego has clean drinking water.”

The city tested its water in unison with a Michigan Department of Environmental Quality effort to test dozens of residential wells in the surrounding area. That effort bloomed from public outcry over suspicions of increased cancer rates from decades-old contamination from the paper mill industry.

While final results of that testing are still pending, preliminary results showed some levels of some dioxins in 17; those homes are currently receiving bottled water.

According to the U.S. Environmental Protection Agency, dioxins can cause cancer, reproductive and developmental problems, damage to the immune system, and can interfere with hormones.

How the Farm Bill Could Keep You from Banning Roundup at Your Kid’s Playground

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When Julie Taddeo moved to Takoma Park, Maryland, a progressive suburb outside of Washington D.C., and saw ubiquitous yellow flags marking the places where pesticide had recently been sprayed, she was surprised. “Everyone’s a treehugger here in, the Berkeley of the East,” she says. The warnings, which swarmed the lawns of homes and apartment buildings, playing fields, public parks, hospital grounds—and even school bus stops, seemed incongruous.

Concerned about her young daughter and the emerging science linking childhood pesticide exposure to pediatric cancer, asthma, and behavioral problems, Taddeo teamed up with a neighbor whose son suffered from asthma. The two began working with city council members to craft a law restricting the cosmetic use of pesticides on lawns on public and private property.

Modeled on an Ontario law, Takoma Park’s Safe Grow Act passed in 2013, and it spurred an outpouring of interest across Montgomery County. “Moms started reaching out to us with their stories,” recalls Taddeo. “One said, ‘My son has a brain tumor and his doctor is convinced that this particular tumor was caused by over exposure to certain pesticides.’”

A group of residents founded Safe Grow Montgomery, an umbrella organization that quickly mushroomed to more than 40 environmental and health organizations, and worked to pass the 2015 Healthy Lawns Act, a county-wide version of Takoma Park’s law. It was the first such law in the nation to restrict pesticides for non-essential use at the county level. (Non-essential means exemptions are allowed for control of invasive pests or human health risks.)

But victory was short-lived. “When one town does it, it’s not a big deal,” says Taddeo. “But when a county tries to do it and you’re a million people, this is when the big guns come out and try to squash it.”

Support for Caregivers

Support for Caregivers

Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support Program offers training, educational resources, and multiple tools to help you succeed. Please contact our Caregiver Support Line for advice on being a caregiver. 

Care for Caregivers

·        Caregiver Support Line

·        Peer Support Mentoring

·        Building Better Caregivers

·        Caring for Post-9/11 Veterans

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Care for Veterans

·        Adult Day Health Care Centers

·        Home-Based Primary Care

·        Skilled Home Care

·        Homemaker & Home Health Aides

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Tips by Diagnosis

·        Alzheimer’s Disease

·        Posttraumatic Stress Disorder (PTSD)

·        Traumatic Brain Injury (TBI)

·        Parkinson’s Disease

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Connect with Others

·        Peer Support Mentoring

·        Caregiver Support Coordinator

·        Caregiver Support Line Monthly Calls

·        Caregiver Stories

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Tips & Tools

·        Managing Medicines

·        Talking with Providers

·        Caring for Oneself

·        Plan Ahead for Disasters

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Publications & Resources

·        Seriously Injured Post-9/11 Veterans

·        Understanding Diagnoses

·        Managing Demands, Stress & Emotions

·        Maintaining Relationships

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Mary Ann Clark: The challenges of living with Parkinson’s disease

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What do Michael J. Fox, Muhammad Ali, Linda Ronstadt, Neil Diamond and Alan Alda have in common? They are just a few of the celebrities diagnosed with Parkinson’s Disease who increased awareness of this progressive, neurodegenerative brain disease for which there is no known cure.

In Parkinson’s disease (PD) there is a decrease in the amount of dopamine in the brain that helps regulate movement and emotional responses. The average age of diagnosis is 62.

Michael J. Fox was 29 and working on his movie, “Doc Hollywood,” in Micanopy in 1991 when he noticed a twitch in his little finger. It turned out to be the first sign of early-onset PD. Although he did not make his diagnosis public for several years, Fox went on in 2000 to establish the Michael J. Fox Foundation for Parkinson’s Research, which has raised over $1 billion for research and programs to find a cure. He has provided inspiration and information for so many.

In January 2012 a neurologist uttered these life-changing words to me after conducting an exam, “Mary Ann, you have early stage, mild symptom Parkinson’s disease.” Although I had researched neurological symptoms such as toe curling, decreased dexterity in my hand and an arm that didn’t swing, my first fleeting thought was, “The best part of my life is over!” I was 62.

Quickly, I started to develop a more positive mindset. I was the same person I had been and had much about life to continue to enjoy. I had several close friends/colleagues who had received this diagnosis within a two-year period.

Parkinson’s is a boutique disease. There may be a range and variety of symptoms manifested as well as rate of progression. There is no one test or scan that can confirm a diagnosis, though usually an MRI of the brain is performed to rule out other possibilities.

No exact cause has been pinpointed. Genetic factors can play a role, but account for a small percentage of cases. Environmental factors such as where you live, and chemical exposure, may be part of the picture. Some research suggests links between PD and chemicals used in farming, factories or Agent Orange during the Vietnam war. But there is no one profile that proves causality.

Raymore mom battles with VA over crucial care for daughter with spina bifida

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RAYMORE, Mo. -- Jocelyn Janes is living proof that Agent Orange, the chemical sprayed over the jungles of Vietnam, did more than expose American soldiers to harm. It also affected their children.

Janes, 34, is one of an estimated 8,000 children of Vietnam veterans born with spina bifida. Her father served there as a Marine.

“It was discovered that spina bifida was the most frequent birth defect among Vietnam veterans' (children),” said Donna Wallis, Jocelyn’s mom.

So many children were born with the defect that in 1966 Congress passed legislation guaranteeing those children health care for life through the Veterans Administration.

That law has been a lifesaver for Jocelyn, paying for dozens of surgeries and home health care -- until now.

For the last four months, Wallis has been fighting with the VA to pay for her daughter’s care, which is now needed around the clock.

 “They don't understand their own policies,” said Wallis, referring to the VA’s spina bifida claims office in Denver.

The VA’s own regulations states that 24/7 care is available for spina bifida patients who have a doctor’s authorization. Because Jocelyn has that, the VA promised she would receive the benefit.

“We started the paperwork very early in 2018,” Wallis said.

A home health company called BrightStar Care begin providing round-the-clock services for Jocelyn in May. But four months later, the VA hasn’t cut a single check to reimburse BrightStar for more than $100,000 in services.

New VA Chief Declares Agency is ‘Headed in the Right Direction’

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Secretary Wilkie says he is still learning about the agency

“The state of VA is better— I didn’t say good or excellent,” Wilkie told the Senate Veterans’ Affairs Committee. 

Do what’s right for our Blue Water Vietnam veterans

WASHINGTON | REP. VALADAO URGES SENATE VETERAN’S AFFAIRS COMMITTEE TOPASS BLUE WATER NAVY VIETNAM VETERANS LEGISLATION

Navy’s Vietnam vets deserve care for Agent Orange

Do right by Blue Water veterans

Blue Water Navy Supporters Pressure Isakson, Target VA Secretary's Hardline

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Every major veterans' group and most military associations have urged the Senate to move forward with a bill that would provide health care and compensation for veterans impacted by Agent Orange. The bill is being delayed due to the VA Secretary's opposition to extending VA health care and compensation to tens of thousands of former 'Blue Water' Sailors and Marines with Agent Orange-associated ailments.

RIP Jane Newton

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By Hank Campbell — September 24, 2018

I am writing today about a woman you may never have heard of - but she was a hero of science, and I want to share her story.

Professor Mike Newton worked at Oregon State University for 58 years, published almost 400 papers, and was, in his words, a very healthy guinea pig after voluminous and nearly continuous exposure to compounds like Tetrachlorodibenzo-p-dioxin, which the science community calls TCDD and activists simply call "dioxin" in their fundraising campaigns.

I got to know him(1) after we published a piece on continual dioxin hype in our Priorities magazine and he read it and wrote me a nice email about his studies on human skin absorption of 2,4,5-T and the half-life of 2,4,5-T acid in the body (23 hours, I learned). He told me he evaluated the concentration of TCDD in wildlife (Aplodontia rufa, the mountain beaver, and Odocoileus hemionis, the blacktailed deer) whose habitats were sprayed at operational rates used in forest weed control.  No symptoms from 2,4,5-T or TCDD were detected, he noted. All fine science, but that dioxin horse is not going back in the barn, statisticians beat scientists there.(2)

Then an email told me something really fascinating. In 1972, he was asked by the National Academy of Sciences to evaluate the effects of herbicides in Vietnam. Most of you know now they were talking about Agent Orange (and White - Picloram/2,4-D). He was the field guy and created hundreds of sprayed plots at various rates including the 3 gallons per acre rate of the undiluted defoliants. With a backpack sprayer connected to a spray boom, he experimented in vegetable gardens, rice paddies, mangrove wetlands, forests, inland and coastal areas, you name it, anything that might have been exposed to the chemicals.

Then he wrote the report.

He literally wrote the book on Agent Orange, I realized.(3) Why didn't he lead with that? That is the nature of scientists, of course. Most are too humble.(4)

But he was passionate about one thing. His wife Jane. In our correspondence and phone conversation she came up numerous times.

Veterans and Parkinson’s disease - RESOURCES FOR VETERANS

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Veterans may be at an increased risk of Parkinson’s disease (PD) because of their service. Evidence suggests that one cause of Parkinson’s disease may be exposure to pesticides or herbicides. During the Vietnam War, many veterans were exposed to Agent Orange, a mix of herbicides that was used by the US military to defoliate trees and remove concealment for the enemy. There are other causes of Parkinson’s disease as well, and most people who develop Parkinson’s disease were never exposed to high levels of pesticides or herbicides.

For more information, call the PADRECC/Consortium Hotline at 800-949-1001, x5769 or visit their website www.parkinsons.va.gov

The Department of Veterans’ Affairs (VA) established six Parkinson’s Disease Research, Education, and Clinical Centers or “PADRECCs”. Each PADRECC delivers state-of-the-art clinical care, conducts innovative research, and offers outreach and educational programs to all veterans currently enrolled in the VA Healthcare System. Eligible veterans include those who have been diagnosed with Parkinson’s disease and those who have just started to notice PD-like symptoms.

PADRECCs also treat veterans diagnosed with other movement disorders, like essential tremor. PADRECCs are located in Houston, TX; Los Angeles, CA; Portland, OR; Seattle, WA; Philadelphia, PA; Richmond, VA; and San Francisco, CA.

For veterans who cannot travel to a PADRECC, the VA more than 51 Consortium Centers—VA clinics that offer specialized Parkinson’s disease and movement-disorder specialty care. These Centers are staffed by movement disorder specialists or clinicians with vast experience and interest in the field of movement disorders. These VA Consortium Centers work collaboratively with the six PADRECCs to ensure the highest level of care for all veterans.

Agent Orange

Veterans exposed to Agent Orange during military service may be eligible for a free Agent Orange Health Registry Exam. Registry health examination, healthcare benefits, and disability compensation. Vietnam veterans with Parkinson’s disease or other diseases possibly associated with Agent Orange may claim benefits without having to prove that their conditions are due to Agent Orange exposure.

Former VA secretaries spar over ‘blue water’ Navy benefits

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WASHINGTON — The fight over extending benefits to “blue water” veterans who served on ships off the coast of Vietnam is now pitting former Veterans Affairs secretaries against each other, adding to the confusion over Congress’ next steps.

Last week, four former VA secretaries — Anthony Principi, Jim Nicholson, James Peake and Bob McDonald — wrote to the Senate Veterans’ Affairs Committee urging lawmakers not to grant presumptive illness status to roughly 90,000 blue water veterans who claim exposure to the chemical defoliant Agent Orange, saying there is insufficient proof for their cases.

“(This legislation) is based on what we believe to be inconclusive evidence to verify that these crews experience exposure to Agent Orange while their vessels were underway,” the group wrote. “We urge the committee to defer action … until such a study is completed and scientific evidence is established to expand presumptions to those at sea.”

The recommendation is in line with arguments laid out by current VA Secretary Robert Wilkie earlier this month. Department officials have argued that granting the presumptive status to veterans could upend the system by establishing new, non-scientific criteria for awarding benefits.

But advocates for the Vietnam veterans have argued that scientific proof of exposure is impossible given that proper sampling was not done decades ago, as the ships patrolled the waters around the South China Sea.

They say rare cancers and other unusual illnesses clustering among the blue water veterans should be enough to spur action from Congress.

Earlier this year, members of the House agreed. They overwhelmingly passed legislation that would require VA officials to automatically assume those veterans were exposed to Agent Orange for benefits purposes, the same status granted to troops who served on the ground in Vietnam or on ships traveling upon inland rivers.

Under current department rules, the blue water veterans can receive medical care for their illnesses through VA but must prove toxic exposure while on duty to receive compensation for the ailments. Advocates have argued that VA officials are systematically denying those claims.

In a letters to Wilkie and the committee this week, John Wells — counsel to the Blue Water Navy Vietnam Veterans Association — blasted the department’s stance as unfair and inhumane.

“Whether (the opposition) is due to bureaucratic intransigence or incompetence I do not know,” he wrote. “The bottom line, however, is that they have misrepresented and ‘cherry picked’ evidence to support their flawed position. That is a stain on the national honor.”

Save the VA. Veterans' lives depend on it | Opinion

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By Jersey Journal Guest Columnist

By Joseph Hirsch

In May of 1968 I was sent to Vietnam, where I translated intercepted communiques during the war. The horrors of war I witnessed changed me forever. Since I returned home, I have worked to end war and for social justice.

In Vietnam, I, like millions of Vietnamese and many other American soldiers, was exposed to Agent Orange.  Decades later, the VA linked that exposure to my diabetes.

Right now there is a push to get vets out of the VA system and into the private sector medical industry. But the private sector is not prepared to care for vets. Private sector doctors do not understand the unique medical needs of vets, including war trauma, battle induced hearing loss or toxin exposure such as Agent Orange.

A recent RAND study of New York doctors showed only 16 percent asked about occupational or military exposures such as Agent Orange. The same report found just 20 percent of doctors even asked their patients if they had spent time in the military.

While I may suffer from chronic diabetes because of Agent Orange, I am one of the luckier ones. Many people exposed to Agent Orange ended with Parkinson's disease, devastating cancers or they saw their children born with birth defects.