Parkinson's support group hails law requiring a federal plan for it

A group session held by Parkinson's in Motion, in London (Image from WYMT-TV)

Kentucky Health News

The leader of a Kentucky support group for sufferers of Parkinson's disease is hailing President Biden's Tuesday signing of a law that requires the Department of Health and Human Services to develop, and evaluate progress on, a plan to address the disabling neurological disorder.

Jane Rice Williams, executive director of Parkinson’s in Motion, a London-based group, told Hazard's WYMT-TV that she hopes the National Plan to End Parkinson's Act will bring more attention to the disease.

“Parkinson’s is the fast growing neurological condition on the planet, and it’s still so under-funded,” Williams said. But she added that her group has spread awareness across the region.

“People here have been diagnosed since coming to our meetings and finding out what Parkinson’s is, and they think, ‘Well, maybe that is what my dad has, or maybe that’s what my mother has.’ And they’re able to get a diagnosis because of knowledge,” she said.

“But you can’t sustain all of that without funding. There’s so many people out there suffering that have no clue that they have Parkinson’s. Every time we turn around and think we’re gonna provide such and such, we need funding.”

Beyond funding, she said her organization wants to “try and get them in the proper exercise, teach them proper nutrition, get them in Parkinson’s communities” where they can get group support.

Parkinson's disease: Its symptoms, causes and management

Photo illustration by Pornpak Khunatorn, iStock/Getty Images Plus

By Dr. Zain Guduru

University of Kentucky

Parkinson's disease is a progressive neurological disorder that affects movement. Named after Dr. James Parkinson, who first described it in 1817, this condition currently affects millions of people worldwide. While there is no cure for Parkinson's disease, understanding its symptoms, causes and management strategies can significantly improve the quality of life for those living with the condition.

What is Parkinson's disease? PD primarily affects the brain's nerve cells responsible for producing dopamine, a neurotransmitter involved in movement regulation. As these cells degenerate or become impaired, dopamine levels drop, leading to the characteristic symptoms of PD.

Symptoms of Parkinson's disease:

• Tremors: Involuntary shaking, usually starting in the hands or fingers.
• Bradykinesia: Slowed movement and difficulty initiating movement.
• Muscle rigidity: Stiffness in the limbs or trunk, causing difficulty with movement.
• Postural instability: Impaired balance and coordination, leading to falls.
• Non-motor symptoms: These can include depression, anxiety, cognitive changes and sleep disturbances.

Causes of Parkinson's disease: The exact cause of PD remains unknown, but it's believed to involve a combination of genetic and environmental factors. Some potential factors that may contribute to the development of PD include:

• Genetic mutations: Certain genetic mutations have been linked to an increased risk of Parkinson's disease.
• Environmental factors: Exposure to toxins like pesticides, herbicides and heavy metals may increase the risk.
• Age: The risk of Parkinson's disease increases with age, typically affecting individuals over the age of 60.
• Brain changes: Abnormal protein deposits in the brain, such as alpha-synuclein, are associated with Parkinson's disease.

Managing Parkinson's disease: While there is no cure for PD, several treatment options can help manage its symptoms and improve quality of life:

• Medications: Dopamine replacement medications, such as levodopa, can help alleviate motor symptoms.
• Physical therapy: Exercise programs designed to improve flexibility, balance, and mobility can be beneficial.
• Speech therapy: Speech therapists can help with communication difficulties often associated with Parkinson's disease.
• Deep brain stimulation: In advanced cases, DBS surgery may be an option to help control motor symptoms.
• Lifestyle modifications: Eating a balanced diet, staying physically active, and managing stress can all contribute to better symptom management.

Parkinson's disease is a complex condition that requires a multidisciplinary approach to management. While there is no cure, early diagnosis and appropriate treatment can significantly improve the quality of life for individuals living with PD. By raising awareness, supporting research, and implementing effective management strategies, we can work towards a better understanding and treatment of Parkinson's disease.

Zain Guduru, M.D., is a neurologist with the Kentucky Neuroscience Institute and assistant professor in the University of Kentucky College of Medicine.

Louisville's Norton Healthcare receives $20 million gift to support Parkinson's disease programming and research

Norton Healthcare has received a $20 million gift for the "Just Imagine" campaign to support programing and research in Parkinson's disease and movement disorders at the Norton Neuroscience Institute.

 
The Just Imagine campaign aims to ensure greater access to medical expertise; expand innovative clinical translational research; and recruit, train and attract even more best-in-class specialists.

The gift comes from the estate of Dr. Elizabeth Pahk Cressman, a Louisville anesthesiologist who died in 2021.

“Dr. Cressman’s vision has helped elevate the care for Parkinson’s patients, helping to create a nationally known program through Norton Neuroscience Institute,” Lynnie Meyer, senior vice president and chief development officer of Norton Healthcare, said in a news release. “She also was the catalyst behind funding Parkinson’s disease research that already has helped transform the lives of many patients and families through access to more groundbreaking treatments.”

Cressman worked at what is now Norton Women’s & Children’s Hospital, while her husband, the late Dr. Frederick K. Cressman, was a pathologist for Norton Healthcare. This latest gift brings Dr. Elizabeth Cressman’s total support of initiatives at Norton to $28 million.

Nearly 1 million Americans have Parkinson’s disease, and that number continues to grow. The movement disorder generally develops in people 55 to 75 with the main symptom being bradykinesia, or slowness of moment. It also can cause tremors and muscle stiffness.

“Parkinson’s disease can be extremely debilitating and, unfortunately, there currently is no cure,”  Dr. Justin T. Phillips, movement-disorders neurologist with Cressman Parkinson’s & Movement Disorders Center, said in the release. “With Dr. Cressman’s generosity, we are able to build upon the work we already do and offer even more options for patients. She has already had a great impact on people with Parkinson’s in our community, and that will continue for years to come.”

Parkinson's disease: What to know about it, what to do about it

By Dr. Julia Stasich, Ochnser Health

Parkinson’s disease is named after James Parkinson, the English physician who described this degenerative disease of later life. Here are the history, symptoms, causes and treatment options for Parkinson's.

What characterizes Parkinson’s disease?

• Slowness of movement with slow, shuffling gait, short steps
• Rigidity or stiffness of the limbs and trunk
• Impaired balance and coordination
• Head held forward, and body stooped forwards
• Drooping eyelids, open mouth, drooling

What are some of the biggest misunderstandings seen in Parkinson’s disease? Not all Parkinson’s patients have tremor, and Parkinson’s disease does not shorten lifespan, but the symptoms can affect quality of life.

Who first identified Parkinson’s disease? The disease we call Parkinson’s was known to ancient eastern Indians as “Kampavata.” A man by the name of Charaka is known to have described this disease as “kampa” meaning shaking and “vata” meaning decreased muscle movement or weakness. About 500 years later in Greece, Galen, a student of Hippocrates, also described a “shaking palsy.” But it wasn’t until the 1800s when Dr. Parkinson described the criteria of patients with the “shaking palsy” and separated out other diseases that may shake or have weakness. We actually still call the syndromes that look like Parkinson’s disease by the name “Parkinsonism.”

What are the brain changes we see in Parkinson’s disease? Parkinson’s patients experience a slow, progressive loss of cells that make dopamine in the brain. Dopamine, in the right amount and right places, plays a vital role by making our bodies move faster, including arms, legs, mind and even bowels. It also makes us feel good when it is released, like during social events, eating or sex. It is also released as a reward during events such as fishing, hunting, shopping or gambling.

What are the early signs of Parkinson’s? Early Parkinson’s disease is easy to miss by doctors because the symptoms can mimic common ailments:

• Feeling “dizzy” or easily off balance
• Loss of sense of smell
• Loss of arm swing on one side of the body
• Daytime sleepiness
• Depression
• Constipation

What are some of the symptoms of Parkinson’s disease? As the disease progresses and more dopamine-producing cells are lost, more symptoms arise and may include muscle stiffness, tremor, choking and excess saliva.

What causes a loss of dopamine? We don’t know. Certainly, there are familial forms of Parkinson’s, but these are much less common than the sporadic type.

How do we treat Parkinson’s disease?

• Promote the release of dopamine
• Replace dopamine with medication
• Alternatives/additions to dopamine treatment
• Deep brain stimulation surgery

What you can be doing to increase your own dopamine levels? You can do this through regular exercise such as dancing, walking or activities such as Tai Chi. You will also feel better if you sleep better and are well-rested. Massage makes everyone feel good, but there is research that suggests that massage may reduce the symptoms of Parkinson’s disease. A loving, supportive relationship improves both lives, but the Parkinson patient may even notice improved physical effects.

What your doctor can do for you to help increase dopamine? We can directly replace that dopamine with a dopamine precursor, Levodopa. Levodopa was found to be effective in the 1950s by a Swedish scientist, Arvid Carlsson, who later won a Nobel Prize for that work. It is now available in several formulations and is always paired with carbidopa to help absorption.

We can mimic dopamine with drugs called “dopamine agonists.” Pramipexole, ropinerole and rotigatine patch are all in this category.

We can limit the breakdown of your own dopamine using drugs belonging to a family called the MAO-B inhibitors. Two examples are selegiline and rasagiline.

As with some medications, there can be side effects, so be sure to talk to your doctor about a treatment plan that is going to be right for you.

Regular, moderate exercise may slow Parkinson's symptoms

Seniors exercise. (Photo by the Parkinson's Foundation)

Regular, moderate exercise one to two hours a week by people with early-stage Parkinson's disease may help slow the damage it does to the body and the mind.

A study published in Neurology, the medical journal of the American Academy of Neurology, looked at 237 people in the early stages of the disease with an average age of 63. They were followed by researchers for up to six years. Their exercise levels at the start of the study were determined by using a questionnaire that measures time and intensity of activity during the previous week: leisure activity, like walking and biking; household activity, such as gardening; and occupational activity, like taking care of others. Other tests measured verbal and memory skills and how much time it took participants to complete mental tasks.

Researchers used a common test to rate each person’s Parkinson’s symptoms on a scale of zero to four, with higher scores indicating more severe impairment. The average score of people who got less than one to two hours of moderate to vigorous exercise once or twice a week increased over six years from 1.4 to 3.7, but those who got above-average levels of moderate to vigorous exercise increased from a 1.4 to 3.0.

Similar results were seen in the cognitive tests. One cognitive test that researchers used was a common paper-and-pencil test used to measure mental processing speed. The test gives the participant 90 seconds to match numbers with geometric figures and has a maximum possible score of 110. People who got less than 15.5 hours of work per week, on average, dropped from a 44 to a 40 on the test six years later. Those with more than 15.5 hours a week dropped only one point, from 44 to 43.

“Although medications can provide people with Parkinson’s some symptom relief, they haven’t been shown to slow the progression of the disease,” said study author Kazuto Tsukita. “We found that regular physical activity, including household tasks and moderate exercise, may actually improve the course of the disease over the long run. Best of all, exercise is low cost and has few side effects.”

Researchers note that the study does not prove that maintaining an exercise program will delay the effects of Parkinson’s disease. It only shows an association.

New treatment for symptoms of advanced Parkinson's disease approved by FDA and unveiled at UK

Portable infusion pump used
to deliver Parkinson's drug

The University of Kentucky unveiled a new treatment for people with advanced symptoms of Parkinson's disease at a news conference April 21 and invited one of the first patients to participate in the clinical trial to share how this treatment has improved his function and productivity.

The new, trademarked, treatment, Duopa, provides a continuous 16 hour dose of levodopa, which is the "gold standard" drug to treat Parkinson's disease ,using a special gel preparation, is put directly into the small intestine by a portable infusion pump. It was developed by AbbVie Inc. and approved by the U.S. Food and Drug Administration in January.

"This treatment extends our ability to manage the signs and symptoms" of Parkinson's, said Dr. John Slevin, professor of neurology and vice chair of research at UK's Kentucky Neuroscience Institute. Slevin also worked with international investigators to test this treatment and is the lead author of the study, which is published in the Journal of Parkinson's Disease.

Parkinson's is a chronic and progressive disease of the nervous system that is characterized by motor symptoms such as tremors,slowness, stiffness and impaired balance and coordination. It can also cause non-motor symptoms such as sensory deficits, cognitive difficulties and sleep problems.

The cause of Parkinson's is unknown and there is no cure, but it is known that the disease process involves the death of nerve cells in the brain that produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination.

Slevin said that there are many challenges in treating the symptoms of Parkinson's as it progresses. In addition to the continued loss of nerves in the brain, he said levodopa looses its effectiveness over time and the dose level begins to fluctuate. He also noted that over time patients will get a side-effect from the drug called dyskinesia, or involuntary muscle movement.

Another challenge, which he said prompted the development of this treatment, is that the muscles that control digestion are also affected by the disease, which creates an inconsistency in the blood level of levadopa that can be turned into dopamine in the brain.

This new treatment alleviates this challenge by placing the drug directly where it is absorbed in the intestine, allowing "The blood level, and thereby brain level (to remain) constant and that reduces the probability of having intermittent dyskinesia," Slevin said.

Marion Cox

"We are extremely pleased with the results," Slevin said in a press release. "Patients with advanced Parkinson's disease treated via this new method demonstrated marked improvement in symptom fluxuations and reduced dyskinesia."

Marion Cox, a 70-year-old Georgetown farmer and former real estate developer, who has had Parkinson's for 16 years, participated in the clinical trial for three years and said that this treatment has given him a "new lease on life."

"It was the best thing that ever happened to me. The improvements have been that great," Cox said. Later saying, "I can do anything I want to do. I can horseback ride. I've got a team of horses that I drive. I've got lots of farm equipment, excavating equipment that I drive. Before I went on the trial I was still doing those things, but unbelievably slow."

Dr. Michael Karpf, Becky Cox, Marion Cox, Dr. John Slevin

Dr. Michael Karpf, UK's vice president for health, said he was proud to be part of a major health center committed to doing clinical trials: "What UK HealthCare has to do is to not (just) practice the standards of care, we have to move the standards of care forward." Cox will be the first patient in Kentucky to receive Duopa after FDA approval.

Becky Cox, Marion's wife of 25 years, said the treatment "saved him from an early retirement." She noted that before Duopa, he had been taking an "unmanageable" number of pills to treat his symptoms, but now, after he hooks up to the pump in the morning, "It is a set it and forget it kind of thing. ... He is off and running like he always used to be, so that has been a great blessing."

Because this treatment involves an invasive procedure and because most people with Parkinson's disease respond well to oral medication initially, Slevin said this treatment is meant for those with advanced Parkinson's symptoms. He also said the cost for this treatment is still being determined, but it was already approved by Medicare. He noted that the next step will be to train other medical centers in how to deliver this treatment.

The National Parkinson Foundation website says 1 million people in the U.S. have the disease, with 50,000 and 60,000 new cases diagnosed each year. Kentucky has 14,000 people with it, Tony Bucalo, Parkinson's neuroscience account executive at AbbVie, said after the news conference.

UK is first in U.S. to conduct clinical trial for new Parkinson's treatment that shows improvement in all five patients so far

A new treatment strategy for Parkinson's disease at the University of Kentucky could change the way the ailment is treated, manage symptoms better and halt or reverse the progressive degeneration of the brain that comes with the disease, the university announced Monday.

Dr. Craig van Horne demonstrated a deep-brain stimulation
remote control unit on Parkinson's patient Rodney Parsons.
(Lexington Herald-Leader photo by Charles Bertram)

Read more here: http://www.kentucky.com/2013/11/18/2939114/uk-researchers-making-progress.html#storylink=cpy

UK is the first U.S. university to conduct a clinical trial of the strategy, led by principal investigator Dr. Craig van Horne, associate professor of neurosurgery in the College of Medicine, according to a news release from the university.

Parkinson's, a progressive and degenerative disease, affects around 1 million Americans and 10 million people worldwide, according to the release. Symptoms include both motor and non-motor symptoms including tremor, rigidity, slow movement and unstable posture. No cure exists.

The first course of treatment is medication, but any medication loses its effectiveness over time.The second line of treatment is deep brain stimulation, a surgical procedure that works like a "brain pacemaker." Electrodes are surgically implanted into the malfunctioning part of the brain where cells have died to emit electrical impulses to regulate the brain's abnormal impulses, according to the release.

Deep brain stimulation has improved the quality of life for many people with Parkinson's, but while it manages symptoms, it does not change the course or outcome of the disease, according to the release. UK's clinical trial explores an additional treatment option, and possibly a way to alter the course of the disease.

"They are conducting an innovative clinical trial that builds upon the established deep brain stimulation procedure by supplementing it with a nerve graft of patients’ own peripheral nerves," the release says. "The nerves in the brain do not regenerate when they are damaged, but peripheral nerves—nerves outside of the brain and spinal cord—can regenerate." The trial will "aim to use the regenerative capacity of peripheral nerves to allow the brain to heal itself."

The procedure will implant a small piece of a patient's peripheral nerve from just above an ankle. This can be done at the same time as deep brain stimulation, so the patient will get the benefit from both procedures, the release says. The effect of the implant will be tested by simply turning off the deep brain stimulator. The hope is that the peripheral nerve will "stimulate regeneration in the parts of the brain that have been damaged by Parkinson's disease."

So far, five Parkinson’s patients have undergone the combined procedure. The trial calls for six. All five have shown consistent improvement in symptoms and "were able to entirely go off the medication one month later, relying on the deep brain stimulation device to manage their symptoms," the release says. Normally, deep-brain stimulation patients are able to reduce their medication but not eliminate it.

"The patients can have more consistent 'on' times—fewer ups and downs with their symptoms," Van Horne said. "They’re not fluctuating due to meds if they’re just using the stimulation."

The trial has progressed quickly because it uses the patient's own tissue, with no risk of rejection or need for immuno-suppressant drugs, and takes only 30 minutes longer than standard deep brain stimulation.  If successful, this procedure could significantly change the treatment of Parkinson’s disease, the release says, and could have an impact on other neuro-degenerative disorders. To learn more click here.

Tobacco virus may be used to combat Parkinson's disease

A tobacco crop affected by drought. Courier-Journal photo
by David R. Lutman.

University of Louisville researchers say a virus that attacks tobacco plants may be used to develop a vaccine for Parkinson's disease.

The answer lies with the tobacco mosaic virus, which causes antibodies that "may be protective against Parkinson's," said Dr. Robert Friedland, a clinical and research neurologist at U of L.

Friedland's findings come after more than 60 studies have shown that smokers seem to have a reduced risk for developing Parkinson's, a motor system disorder that can cause tremors, stiffness and impaired balance. 

But Friedland and Dr. Honglei Chen, an investigator with the National Institute of Environmental Health Sciences, part of the National Institutes of Health, warn the findings should not be considered an excuse to smoke. Friedland's research is partly funded by the NIH, but not by any tobacco companies, reports Laura Ungar for The Courier-Journal. (Read more)

As renowned minister fights two tough diseases, journalist chronicles his journey

A well-known Kentucky pastor is nearing the end of his battle with Alzheimer's and Parkinson's. Laura Ungar, health writer for The Courier-Journal, has been chronicling Charles Music's fight since 2005.

In her latest installment, Ungar speaks to Music's wife of 51 years, Jane, who remains his loving caregiver at his Texas nursing home. Jane recently returned from a trip to Central Asia to visit her daughter, "a part of a life course that Jane, 73, must now chart for herself ... She's focusing on her roles as mother, grandmother and friend so she doesn't lose herself as she loses Charles," Ungar writes.

During his lifetime, Music pastored at Methodist churches in many rural Kentucky towns before settling in Louisville. Ungar's piece provides a good example of how to write sensitively and informatively about life-ending conditions. (Read more)