Colorado man with Parkinson's pushes for right-to-die law

Dec.19, 2015

In this Monday, Nov. 23, 2015, photograph taken in Denver, Lance Wright, who is suffering with Parkinson's disease, talks about a proposal that he is advancing to allow him and other terminally ill patients to have the right to seek assistance from a third party when they want to die in Colorado. Wright wants Colorado voters to decide next year whether terminally ill people should be allowed to end their own lives with medical help.

Photo: David Zalubowski, AP

DENVER (AP) — Lance Wright is a meticulous planner: He has a line ready for when his hands shake during work presentations, and for his life's final days, an audacious plan to let people with incurable illnesses choose when they die.

The 63-year-old energy efficiency consultant and Parkinson's disease patient is trying to do what many better-funded and organized activists cannot: Get language on next year's Colorado ballot that would give him and others the right to seek assistance from doctors to die — and then convince voters to approve it as a constitutional amendment.Wright has long supported the idea that people should have the right to end their own lives, closely following the 1994 Oregon debate that led to the nation's initial right-to-die law. But when the first symptoms of Parkinson's disease appeared 12 years ago, his interest became personal.

"A battleship off the coast will focus your attention," he said.

Wright's proposal goes further than what lawmakers and advocates of the "right-to-die" movement want because a patient doesn't have to be months away from dying, and patients don't have to administer life-ending drugs on their own. So there's already opposition to Wright's effort, and since he has no organization to help with the time and money needed for the expensive task of signature-gathering, he is taking a major political long shot. But he's used to long shots.He unsuccessfully ran as a Democrat against former Republican U.S. Rep. Tom Tancredo when that suburban Denver district was GOP country in 2002. Last year, he collected 22 votes as a write-in candidate for a Denver statehouse district.

Wright has more at stake in this campaign.

"I feel that it's a basic human right to be in charge of your own destiny, if you will. The situation now is that you and I are not in control of what happens at the end of our lives," said Wright, who served two terms in the Parker Town Council from 1996 to 2000.At the moment, the disease is more of an inconvenience for Wright. During presentations, he quips that his shaking hands don't mean he's nervous, just that he has Parkinson's. In general, he's still healthy and able-bodied. He walks his wife home and carries her books from the University of Denver, where she's a law professor.

"I love life. I want to live every minute that I can," Wright said. But he knows the time may come when he will be unable to walk on his own or swallow food.

Wright is finalizing the language for his proposal to define who would qualify as having an incurable condition to get aid in dying from a doctor. He said it would not apply to people who are depressed or suicidal.

If a legal panel finds that it complies with standards for a ballot measure, he'll need to start collecting more than 98,000 signatures from registered voters by next summer.

He'll have to do that without the support of Compassion and Choices, a national group advocating for right-to-die laws. The group opposes Wright's plan because doctors can inject patients with the fatal drugs.

"We just think that it's a little bit too dangerous, quite honestly," said Roland Halpern, a Denver-based spokesman for the group, which wants laws requiring patients to take the drugs on their own to ensure it is what they want.

State lawmakers pursuing the idea do not back Wright's plan, either, largely because the ballot language does not include the "terminally ill."

"I don't think (the proposal) uses the word 'euthanasia,' but it seems to provide for euthanasia, which we do not advocate," said Democratic Rep. Lois Court of Denver, who is sponsoring end-of-life legislation specifying that a patient be certified as terminally ill, have formally requested life-ending drugs several times, and self-administer those drugs, among other conditions.

Wright argues some like him may not be able to take that medication on their own. And people in similar circumstance may not qualify for what lawmakers are proposing. An Alzheimer's patient may lose the ability to take care of himself but still not be considered terminal, for example.

Halpern's group has supported attempts to pass right-to-die bills in other states, including California, where Gov. Jerry Brownsigned a measure into law in October. Other states where doctors can prescribe life-ending drugs for the terminally ill are Oregon, Washington, Vermont and Montana.

If Wright succeeds in getting to the ballot, he'd face opposition from religious organizations and conservatives who view the laws in Oregon and other states as facilitating suicide. Some doctors have also expressed concern that making life-ending drugs available to patients takes away hope of recovery when a terminal diagnosis can turn out to be wrong.

Wright said he's optimistic his idea will draw support. He insists the issue is not just about what he's going through.

He said he's "determined to make sure that I've done everything that I can to provide the sort of framework for individual liberty that I can for folks here in Colorado."

Associated Press writer James Anderson contributed to this reporthttp://www.topix.com/health/parkinsons-disease

How Does Parkinson’s Disease Affect the Body?

Cells in the Brain Are Damaged

For reasons not well understood, brain cells located in a structure called the substantia nigra die or become impaired in those with Parkinson’s disease. These cells produce a neurotransmitter called dopamine, which helps to carry electrical signals from your brain to the areas of the body you wish to move. (This process allows you to carry out smooth and coordinated movements.) According to the National Parkinson’s Foundation, Parkinson’s Disease occurs when at least eighty percent of these cells that produce dopamine are affected.

Mild Changes Occur

As the body begins to have trouble coordinating movement and muscle contractions, minor changes become apparent. Your handwriting may become small and cramped. You may begin to speak softly and have difficulty projecting your voice loud enough so others can hear you. Your facial muscles may lose tone; others often notice this as a lack of facial expression when they are speaking to you. You may also begin to have trouble chewing and swallowing. Learning to recognize these early warning signs is important. Medications, exercise and surgery can all help to control your symptoms and, in some cases, slow the progression of this disease.

Movement Is Affected

As the disease progresses and less dopamine is available, more apparent movement changes will occur. Your movements may become slower and you may find that you have difficulty initiating movement at all. This is often referred to as “freezing.” For example you may want to lift your arm but since dopamine is not available to carry the electrical signal your arm muscles, you will be unable to move your arm until there is enough dopamine present. The same is true when attempting to step out to walk; you may notice a tendency to shuffle your feet and take small quick steps just to keep going. Since movements are uncontrolled some Parkinson’s patients will develop a tremor or shaking movement in the arms, face or legs.

Rigidity Occurs

The Parkinson’s Disease Foundation states that as the muscles lose tone, you may develop a tightness or stiffness especially in the trunk and hips. As the stiffness worsens, movement becomes harder and slower. This can make it difficult to twist and turn. Daily activities such as getting dressed, eating and bathing may take longer or you may need assistance. As the muscles tighten, your posture may become halted altogether and maintaining balance will be more challenging.

Cognitive Ability May Change

The Michael J. Fox Foundation notes that as further damage occurs in the brain, some patients with Parkinson’s disease develop “cognitive problems, such as short-term memory loss, difficulty following complex instructions or a loss of multitasking ability.” However they also state that the rate and severity of progression is very different for each patient.

By Lori Newell

http://mymedclinic.info/?p=2883

Brain imaging technology offers new approach for studying Parkinsonian syndromes

December 18, 2015

Source:

Drexel University

Summary:

Using a portable device, researchers have identified differences in brain activation patterns associated with postural stability in people with Parkinsonian syndromes and healthy adults. The findings describe the critical role of the prefrontal cortex in balance control and may have implications with respect to detecting and treating Parkinsonian symptoms in the elderly.

The prefrontal cortex, highlighted in red, is responsible for high-level functions like memory, attention and problem solving.

Credit: Life Science Databases

Using a portable device developed at Drexel University, researchers at Albert Einstein College of Medicine have identified differences in brain activation patterns associated with postural stability in people with Parkinsonian syndromes and healthy adults. The findings, published recently in Brain Research, describe the critical role of the prefrontal cortex in balance control and may have implications with respect to detecting and treating Parkinsonian symptoms in the elderly.

Parkinson's disease is a neurological disorder that arises when brain cells that control movement die, leaving many patients in the late stages of the disease unable to take a few steps before falling. Parkinsonian syndromes, which are common in older adults, are conditions that do not rise to a Parkinson's diagnosis but encompass many symptoms of the disease, like rigidity, tremor and difficulty walking.

Past attempts to compare brain activity and stability in people with Parkinsonian syndromes have been limited, because neuroimaging tools could only be used when a study participant was lying flat, rather than walking or standing. In these cases, the person undergoing the brain scan could only imagine that he or she was performing the tasks.

A portable system created by researchers in Drexel's School of Biomedical Engineering and Health Systems overcomes this challenge. It has allowed scientists, for the first time, to better understand the role of the brain's prefrontal cortex during standing and walking.

The device employs functional near-infrared, or fNIR, spectroscopy, which uses light to monitor changes in blood oxygenation in the brain as individuals perform tasks, take tests or receive stimulation. The prefrontal cortex is the area responsible for higher-level processing, such as memory, attention, problem solving and decision-making. When a person is learning a new skill, for instance, neural activity is greater in this region.

Unlike fMRI (functional magnetic resonance imaging), the fNIR system is fully portable: Participants wear a headband, allowing them to talk and move around while a computer collects data in real time.

"Postural instability is a major risk factor for older adults. If we can monitor the cognitive component of staying balanced, then this could eventually lead to better treatment options for people with Parkinsonian syndromes or even Parkinson's disease," said Meltem Izzetoglu, PhD, an assistant research professor of biomedical engineering at Drexel who co-authored the study.

Researchers at Albert Einstein College of Medicine used the fNIR technology to compare 126 healthy adults to 117 individuals with mild Parkinson's symptoms and 26 with more severe symptoms. While wearing the fNIR headband, the participants were asked to stand and look straight ahead while counting for 10 seconds. They then walked on a mat that captured their gait speed, pace and stride length. The fNIR system recorded their brain oxygen levels during the entire testing period.

The researchers found that those with Parkinsonian symptoms demonstrated significantly higher prefrontal oxygenation levels to maintain stability when standing than participants with mild and no symptoms.

"In fact, brain activity in the frontal brain region was nearly twice as large," said Jeannette R. Mahoney, PhD, assistant professor of neurology at Einstein and the study's lead author.

"This initial study allowed us to measure brain activity in real-time, in a realistic setting. It shows that there are indeed differences in the prefrontal cortex of healthy and Parkinsonian syndrome patients, and those differences relate to their performance in maintaining stability while standing," Izzetoglu said. "It opens up new fields of research."

In an upcoming clinical trial, the researchers will use a computerized cognitive training program and the fNIR system to identify how cognitive training affects brain activation during walking.

The portable technology could aid in diagnosing Parkinsonian syndromes or developing interventions.

"Our goal is to be able to intervene with Parkinsonian symptoms and develop novel remediation in the not-so-distant future to improve elders' quality of life," Mahoney said.

---

Story Source:

The above post is reprinted from materials provided by Drexel University. Note: Materials may be edited for content and length.

http://www.sciencedaily.com/releases/2015/12/151218113326.htm

VA to change disability claims rules for Camp Lejeune veterans

By Patricia Kime, Staff writer5:02 p.m. EST December 17, 2015

The Veterans Affairs Department has determined that eight medical conditions are linked to service at Camp Lejeune, N.C. from 1953 to 1987, and veterans with these diseases who were stationed at the sprawling Marine Corps base are eligible for disability compensation.

VA officials said Thursday that these eight diseases that have been determined to be service-connected to consuming contaminated drinking water at the base: kidney cancer, liver cancer, non-Hodgkin lymphoma, leukemia, multiple myeloma, scleroderma, Parkinson's disease and aplastic anemia or other myelodysplastic syndromes.

VA Secretary Robert McDonald said research by health experts at the Veterans Health Administration and the Agency for Toxic Substances and Disease Registry, an arm of the Centers for Disease Control and Prevention, indicated that the risk of developing these illnesses is elevated by exposure to contaminants found in the water, including perchloroethylene, trichlorotheylene, benzene and other volatile organic compounds.

"The water at Camp Lejeune was a hidden hazard, and it is only years later that we know how dangerous it was," McDonald said. "We thank ATSDR for the thorough review that provided much of the evidence we needed to fully compensate veterans who develop one of the conditions known to be related to exposure to the compounds in the drinking water."

MILITARYTIMES

Groups demand information on Camp Lejeune disability claims

Nearly a million people, including troops, family members and civilian employees working at Camp Lejeune from the 1950s through the 1980s were exposed to these chemicals and other cancer-causing agents in the base's drinking water, supplied by two water treatment facilities polluted by dry cleaning compounds, leaking underground storage tanks, industrial spills and poor disposal practices.

The VA has provided health care or reimbursement for medical costs for veterans who served at Camp Lejeune at least 30 days during the affected period or family members with 15 illnesses related to exposure to water contaminated by solvents and fuels, but it had not awarded "presumptive status" to any condition until now.

The changes will take effect after VA publishes regulations regarding these presumptions, and will apply to new disability claims. Veterans who have previously been denied on such claims may seek to be re-evaluated. Also, any pending claims that might be denied under current regulations will be placed on hold until the VA issues its final rules, according to a department press release.

The bedrock eligibility rules will be that veterans must have one of the eight specified conditions and must have served at Camp Lejeune between Aug. 1, 1953, and Dec. 31, 1987.

The new rules also will expand eligibility to reserve and National Guard members who served at Camp Lejeune for any length of time during that period.

A VA spokeswoman said compensation awarded as a result of the proposed regulations, if adopted, will "be effective no earlier than the date the final rule is published."

MILITARYTIMES

Veterans stung by Mabus comments on Camp Lejeune water

Veterans have expressed frustration over the low rate of claims approvals for illnesses related to the Camp Lejeune water. Hundreds of veterans attended a meeting of the Camp Lejeune Community Assistance Panel on Dec. 5 in Tampa to express frustration with the VA's handling of claims and plead with VA officials to improve the process.

Paul Maslow, a veteran who walks with a cane and said he has inoperable tumors on his spine and elsewhere, said he and thousands of former troops need assistance.

"You are not helping us, you are hurting us," Maslow told VA officials attending the meeting. "And the more you delay, the more of us ... are going to die."

Two senators who pressed VA to change its policies regarding benefits for Camp Lejeune veterans said Thursday they applaud the VA's decision, calling it a "victory for those who have suffered."

"The VA has conceded that it will no longer deny disability benefits to Camp Lejeune victims based on ridiculous scientific claims,” Sen. Richard Burr, R-N.C., said.

"VA is finally granting some justice to veterans who were exposed to contaminated drinking water while assigned to Camp Lejeune,” said Sen. Thom Tillis, R-N.C. "The victims of this tragedy have waited far too long to receive disability benefits."

http://www.marinecorpstimes.com/story/veterans/2015/12/17/va-change-disability-claims-rules-camp-lejeune-veterans/77486076/

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Read more :         https://www.vetshq.com/camp-lejeune-toxic-water/

The Marine Corps Base Camp Lejeune in eastern North Carolina supports Marine Corps commands, a Navy command and a Coast Guard command …. And it hosts the largest concentration of Marines and sailors in the world as the HOME OF EXPEDITIONARY FORCES IN READINESS.

But for 30 years in their own backyard Camp Lejeune military and their family members faced an unseen enemy.

If you served or lived at Camp Lejeune for at least 30 days between August 1, 1953 and December 31, 1987 including in these base housing areas —Tarawa Terrace, Midway Park, Berkeley Manor, Paradise Point, Hadnot Point, Hospital Point, Watkins Village — you were exposed to bath water and drinking water containing more than 70 chemical contaminants including degreasers, dry cleaning solvents and flammable liquids at concentrations 240 to 3,400 times permitted safety standards.

Unsure if you’re affected by the conditions at Camp Lejeune? Take our rapid assessment quiz.

In fact the government shut down the contaminated water supply in the mid-1980s — then the government turned the water back on in violation of the law and once again EXPOSING Marines and their families to the toxic water.

This toxic contamination of groundwater is responsible for these diseases and conditions: bladder cancer , breast cancer, esophageal cancer, female infertility, hepatic steatosis, kidney cancer, leukemia, lung cancer, miscarriage, multiple myeloma, myelodysplastic syndromes, neurobehavioral effects, Non-Hodgkin’s lymphoma, renal toxicity, and scleroderma.

But there is some assistance available for veterans and their families.

Want to know more? Click on the graphic.

DID YOU KNOW that Congress passed a law providing for medical care benefits and reimbursement of out-of-pocket expenses if you were at Camp Lejeune during that time?

DID YOU KNOW the Supreme Court heard ruled in a 7-2 decision on June 9, 2014, that a group of homeowners in North Carolina cannot suit a company that contaminated their drinking water decades earlier because the state deadline of 10 years had passed before they filed suit against the company — nevermind that these homeowners were unaware of the circumstances surrounding the toxic water until after the deadline had passed. . . . The ruling was a clear setback for Camp Lejeune Marines and their families and likely meant that none of the affected individuals would be able to recover damages because the government relied on the same North Carolina law to avoid liability, until ….

DID YOU KNOW that North Carolina Gov. Pat McCrory signed into law a bill that clarified the intent of the state’s original “statute of repose,” saying it was only intended to cover product liability lawsuits and not the type of damage claim Camp Lejeune Marines and their families would be seeking. This law revives the possibility that victims can sue the company and the government for damages caused by the groundwater contamination.

DID YOU KNOW that the 11th U.S. Circuit Court of Appeals has ruled that time has run out for Camp Lejeune victims and families to file lawsuits seeking damages or other remedies because of North Carolina’s “statute of repose”, a 10-year limit on lawsuits for liability. The appeals court found that the clarification passed unanimously by the state legislature and signed by Gov. Pat McCrory after the Supreme Court ruling could only apply to future claims.

Click here to learn what the VA says about Camp Lejeune Water Contamination

DID YOU KNOW that finally — two years after Congress passed the Honoring America’s Veterans and Caring for Camp Lejeune Families Act — the VA announced it would begin to cover out-of-pocket costs for dependents of Marines affected by the Camp Lejeune water contamination. The VA will reimburse family members back to March 25, 2013 if they have been diagnosed with one of 15 contaminant-related illnesses. That date was when Congress began providing funding under the new law. Families can find out more information on the Camp Lejeune Family Member program here.

DID YOU KNOW that the VA has extended the deadline for veterans to request status as a Camp Lejeune veteran until September 24, 2016 — and be eligible for retroactive reimbursement of out-of-pocket medical costs back to August 6, 2012, the day the legislation authorized the VA to begin providing benefits to Camp Lejeune veterans.

DID YOU KNOW a Dec. 12, 2014 law changed the VA health benefits eligibility dates for veterans and their families who lived at Camp Lejeune? The new eligibility period is living at Camp Lejeune for 30 days or more between Aug. 1, 1953 and Dec. 31, 1987, revising the previous eligibility start date, which had been Jan. 1, 1957.

And DID YOU KNOW that on August 3, 2015, the VA announced it will begin the review process for amending its regulations to establish presumptions of service connection for disability related to certain conditions caused by exposure to contaminated drinking water at Camp Lejeune?

Be sure you’re receiving the treatment and care you and your family need, or if you know someone who served or lived at Camp Lejeune, make sure they’re aware that disability compensation and health care benefits are available.

Membership in VetsHQ gives you an instant read on ANY AND ALL of the veteran benefits you may qualify for …. including any related to living in or service at Camp Lejeune.

https://www.vetshq.com/camp-lejeune-water-contamination/