Among the treatments for Parkinson’s disease (PD), the most common are medications, which can work well up to a point. But when motor symptoms are not adequately controlled with drugs, deep brain stimulation (DBS) may be an option. Using electrodes placed in the brain, an implantable pulse generator (IPG) placed in the chest or abdomen, and a wire that connects the two, this system targets electrical currents to precise structures within the brain to block the abnormal nerve signals that cause tremor and other motor symptoms.
Originally approved by the U.S. Food and Drug Administration in 1997 to treat PD tremor, DBS approval was extended to treating advanced PD symptoms in 2002, and in 2016, to earlier stages of the disease when drugs wear off too quickly or other motor symptoms such as tremor, rigidity, stiffness, or slowness of movement become disabling. However, DBS is not a cure for PD, does not prevent its progression, and is, in fact, brain surgery. In this podcast, Dr. Nader Pouratian, Professor of Neurosurgery and director of the Neurosurgical Movement Disorders Program at the University of California, Los Angeles, discusses how DBS works, what benefits it can and cannot provide, who may be good candidates for it, possible complications, and what’s ahead.
Released: January 14, 2020
Dr. Nader Pouratian is Professor and Vice-Chair of Academic Affairs in the UCLA Department of Neurosurgery. He is the Chief of Functional Neurosurgery and director of the Neurosurgical Movement Disorders Program. He also serves on the Executive Committee of the Congress of Neurological Surgeons and the American Society of Stereotactic and Functional Neurosurgery. At UCLA, he works with a multidisciplinary team of neurologists, neurosurgeons, psychologists and other experts to provide the best care for each patient, be it medical or surgical. His research aims to use advanced brain mapping techniques to develop, improve, and optimize surgical treatments for neurological and psychiatric diseases. His research spans developing therapies for Parkinson disease, essential tremor, disorders of consciousness, chronic pain, and blindness. He leads and is involved in a number of clinical trials, is the principal investigator for 6 grants from the National Institutes of Health, and works collaboratively with other neurosurgeons, neurologists, and industry to advance the field. He has published over 150 original scientific reports. He is internationally recognized, speaking around the world on advancing the care of patients that can benefit from neurosurgical procedures. But most of all, he is dedicated to delivering the best possible care to each patient.
Neuro Talk: Surgical Options for Parkinson’s Disease
Even after years of managing Parkinson’s disease (PD), symptoms may become more challenging to control. Parkinson's Foundation Chief Scientific Officer James Beck, PhD, walks us through how symptoms may change over time and when surgical therapies, such as deep brain stimulation (DBS), may become a better option for those living with Parkinson’s.
Episode 69: Parkinson’s Foundation Center of Excellence: What Does it Take and What Does it Mean?
Since the early 2000’s, centers of excellence for various diseases or procedures have become common. These are specialized programs within healthcare institutions that bring together experts and resources to target different aspects of the disease or condition to give patients a unified resource for addressing their needs in a comprehensive manner. Besides optimizing resources for patients, the centers of excellence provide advantages for healthcare providers by integrating experts and resources to draw upon within one organization.
Much work goes into assembling and being designated a Parkinson’s Foundation Center of Excellence. At this point, the Parkinson’s Foundation has recognized 47 CoE’s – 34 in the United States and 14 international. Not only do they have to have clinical expertise, but part of their mandate is to do research, education, and community outreach to underserved communities that otherwise could not access the CoE or find appropriate care within their own locales.
In this episode Clarissa Martinez-Rubio, Senior Director of Clinical Affairs of the Parkinson’s Foundation, describes what these centers are and the criteria for earning a designation as a CoE. Then Joe Salvatore talks about his mother’s experience getting a second opinion at a Parkinson’s Foundation CoE and how it helped change the course of her disease.
Released: December 3, 2019
Clarissa Martinez-Rubio is the Sr. Director of Clinical Affairs at the Parkinson's Foundation. She completed her PhD in Anatomy and Neurobiology at the University of Puerto Rico, Medical Center followed by her postdoctoral training at the Massachusetts General Hospital/Harvard Medical School focusing in Deep Brain Stimulation and Neuromodulation. She worked at the Massachusetts General Hospital/Harvard Medical School as an Instructor in Neurosurgery for 3 years before joining the Parkinson’s Foundation in 2016. Since joining, Clarissa has led the foundation’s global Centers of Excellence network with designated centers in 9 countries, 34 US and 14 international.
Joseph M. Salvatore joined Miller Tabak Asset Management in October 2008 as Senior Municipal Credit Analyst. Mr. Salvatore has analyzed municipal bond credits since 1990. At MTAM, Mr. Salvatore reviews and approves (or denies) all municipal bonds before purchase and assigns internal ratings and credit trends to all municipal holdings. Mr. Salvatore maintains strategic relationships with issuers, rating agencies, and credit enhancers. Prior to joining MTAM, he was a municipal consultant for MacKay Shields (New York Life Insurance Company’s investment subsidiary). He was responsible for the credit research of all municipal assets and made buy/sell recommendations with the criteria of no defaults and no surprise rating downgrades. Prior to this experience, Mr. Salvatore spent 16 years at BlackRock in their Fixed Income Municipal Credit Research Department where he became a Director. He is an active member of the National Federation of Municipal Analysts and the Philadelphia Area Municipal Analyst Society. Mr. Salvatore holds an MBA from LaSalle University in Philadelphia. Mr. Salvatore is also a history buff, sports enthusiast, and amateur chef. He lives in Worcester, PA with his partner of 20 years.
Parkinson’s disease (PD) depression may be a biological part of the disease itself, resulting from PD-related changes in brain chemistry. Untreated depression and other mood disorders can have a greater impact on well-being than even common motor symptoms.
Depression affects at least 50 percent of people with PD sometime in the course of their disease, but it is often under-recognized and, therefore, under-treated, even though effective treatments exist, both pharmacologic and nonpharmacologic. Treating depression can be a significant way to improve quality of life.
Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary in Alberta, Canada, a Parkinson’s Foundation Center of Excellence, discusses depression, the problem of under-diagnosis, and the benefits of recognition and treatment.
Released: February 7, 2023
Dr. Veronica Bruno, MD, MPH is a neurologist with a subspecialty in movement disorders. She received her medical degree and neurology residency in Buenos Aires, Argentina. She completed her fellowship in Movement Disorders at the University of Toronto and a Master of Public Health degree at the Harvard TH Chan School of Public Health.
Dr. Bruno was recognized with different international awards including the American Academy of Neurology and American Brain Foundation Clinical Fellowship and the Argentine Presidential Fellowship in Science and Technology, part of the U.S. State Department’s ‘100,000 Strong in the Americas’ initiative.
Dr. Bruno’s primary interest is the treatment of advanced Parkinson’s disease, with a particular research interest in the non-motor symptoms of the disease. She has also a special interest in Global Neurology and the search for innovative solutions to improve the quality of neurological care in low and middle-income countries.
Many people with Parkinson’s disease (PD) experience some degree of cognitive change, such as slowness of memory, changes in thinking, trouble focusing or difficulty finding words. Dementia is a permanent cognitive change that interferes with daily activities and quality of life. Identifying thinking changes early and discussing them with your doctor are the first steps in treating or ruling out PD-related dementia.
This article is based on a Parkinson’s Foundation Expert Briefing Let’s Talk About Dementia presented by Dr. James Leverenz, Director, Lou Ruvo Center for Brain Health at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence.
Slowed movement, tremor and stiffness are some of the visible movement signs of Parkinson's disease. Though not visible, the impact of non-movement symptoms can be even more challenging for people with PD and their loved ones — this includes issues with thinking and memory. While PD-related cognitive change can be mild, between 60 to 80% of people living with PD for 15 years or more can experience disease-related dementia. Awareness of thinking changes can ensure early treatment.
Lewy Body Dementias
In Parkinson’s, the protein alpha-synuclein misfolds and forms clusters in the brain called Lewy bodies. These sticky clusters upset normal brain function. Lewy bodies are strongly linked to PD and dementia.
Nearly 1.5 million Americans are impacted by Lewy body dementias, including those living with:
Parkinson’s disease dementia (PDD): diagnosed when significant cognitive decline occurs in someone living with Parkinson’s movement symptoms for a year or more (usually several years).
Dementia with Lewy bodies (DLB): diagnosed when cognitive decline occurs before or at the same time as motor symptoms.
Almost 50% of people with Alzheimer's disease also have some Lewy body brain abnormalities. These are frequently seen in both people who live with sporadic and familial forms of Alzheimer's. When these changes go beyond a part of the brain called the amygdala, people often have some of the same symptoms as people living with dementia with Lewy bodies , frequently developing Parkinson's-like motor symptoms. This is known as the Lewy body variant of Alzheimer disease.
Some researchers theorize that Alzheimer's disease may drive clumping of Lewy bodies. New therapies designed to slow Alzheimer's progression could also hold possibility to slow Lewy body development — another reason for the importance of an early and correct diagnosis, and early treatment.
Dementia Signs and Symptoms
In addition to memory, thinking and behavior changes, other symptoms include:
Despite many shared symptoms across Lewy body dementia diseases, people often store and recall information differently, depending on which cognitive disorder they are living with.
Adding and retaining new memories is often difficult for people living with Alzheimer's disease. It may be challenging for someone with Alzheimer's to remember a question or conversation just minutes after, or they may have forgotten events from the previous day. Encoding new information can be an issue. However, if a person experiencing PD thinking changes struggles retrieving a memory, they can often pull it up with a clue or a reminder.
This means people with PD dementia can store memories. Rather than primary encoding difficulty, they often experience retrieval challenges — an executive dysfunction similar to difficulty multitasking or staying on track during conversations.
People with Alzheimer’s disease tend to have less awareness that they are hallucinating. A person with PD dementia or dementia with Lewy bodies can more often recognize that they are experiencing hallucinations. It’s important for the care provider to ask the person experiencing changes “Do you see things?” People with PD-related dementia will often acknowledge that they do see things, are aware the hallucinations are not real and are not bothered by what they see.
Diagnosing Lewy Body Dementias
Ensuring the person living with thinking changes receives the correct diagnosis is important. When diagnosing dementia, a doctor, neurologist or other healthcare expert will look for the ability to retrieve retained memories, early executive dysfunction or multitasking difficulties.
A review of symptoms, medications, medical history and more are also key to an accurate diagnosis. Your doctor will also rule out other medical illnesses — urinary tract infections or pneumonia can be related to sudden confusion and agitation.
Work with your doctor to identify any medications that might impact symptoms. Some medicines can cause or worsen confusion and hallucinations, including:
Certain dopamine-boosting medications that ease movement at lower doses but may worsen thinking problems at higher doses
Old antipsychotics, such as haloperidol, and anticholinergic (acetylcholine-blocking)
Medications, such as trihexyphenydil, sometimes used to treat tremor
Therapies
Medications used in Alzheimer’s disease have benefits in PD dementia, including rivastigmine, donepezil and galantamine. Selective serotonin reuptake inhibitors (SSRIs), used for depression, may also be beneficial.
For people with Parkinson’s experiencing rapid eye movement (REM) sleep behavior disorder, your doctor might recommend the over-the-counter sleep aid melatonin. Clonazepam is frequently used if melatonin is not effective, although it can cause confusion, daytime sleepiness and other side effects.
Cognitive remediation, provided by a neuropsychologist or speech-language pathologist, focuses on strengthening cognition.
Behavior management modifies activities and environments to improve abilities and independence. It includes creating a daily routine, decluttering living spaces, increasing lighting and using assistive tools to reduce confusion.
Exercise, physical activity and social connection can also benefit cognitive health.
On the Horizon
Research is currently underway to better understand dementia and discover disease-specific therapies. Diagnosing and treating the earliest stages of thinking change can ensure early lifestyle adjustments and the best chance for responsive therapy.
Understanding the biological differences behind the development and onset of all Lewy body dementias will be essential to future disease-specific therapies.
Scientists are currently working to standardize testing of blood and body fluids to reveal amassed Lewy body alpha-synuclein. This could serve as an early detection tool for neurodegenerative disorders related to the protein, such as PD.
People who experience rapid eye movement (REM) sleep behavior disorder (RBD) are at risk for developing Lewy body dementias. This risk factor might be another potential early diagnosis clue or cue to begin preventative future preventative therapies as they become available.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and dementia by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) or visiting Parkinson’s Foundation resources below.
Episode 143: Meet the Researcher: How Pesticides Impact Parkinson’s
Researchers are accumulating evidence about how the environment affects our health and our diseases – both our internal and external environments. A significant part of our internal environment is the gut microbiome, that is, the bacteria, fungi, and viruses that naturally inhabit our intestinal tracts. The external environment is everything around us that we eat, inhale, or come into contact with, including industrial chemicals and pesticides.
Studies have shown that people with Parkinson’s disease (PD) harbor distinct gut microbiomes. Environmental exposures and genetic factors can affect the composition of the microbiome. Exposure to pesticides is a leading environmental risk for many neurological diseases, including PD. Tim Sampson, PhD, a cell biologist at Emory University in Atlanta, Georgia, a Parkinson’s Foundation Center of Excellence, received one of the Foundation’s Stanley Fahn Junior Faculty Awards to study how genetics and Parkinson’s-linked pesticides affect the gut microbiome. The aim is to see how these interactions may trigger Parkinson’s symptoms within the gut as well as those originating in the brain, with a goal of gaining insight at the earliest stages of the disease to better prevent PD and develop new therapeutic targets.
Released: January 10, 2023
Timothy Sampson, PhD, is an Assistant Professor in the Department of Cell Biology at Emory University. Trained as a microbiologist through both his undergraduate and graduate training, Dr. Sampson subsequently performed postdoctoral studies with Dr. Sarkis Mazmanian at Caltech. There, he began exploring how indigenous gut microbes modulate outcomes of neurological disorders, specifically in models of Parkinson’s disease. Joining the faculty of the Department of Physiology in 2019, and subsequently Cell Biology in 2021, Dr. Sampson’s lab investigates host-microbe interactions at the interface of Parkinson’s and other neurological diseases historically studied within the context of the central nervous system (CNS). Similar to how the study of pathogens has informed the field of immunology, his work aims to reveal new pathways at the microbe-CNS interface.
There are many drugs and therapies for Parkinson’s, but none halt progression of the disease. This is partly because we still do not understand exactly what causes Parkinson’s, so it is hard to figure out how to prevent it or slow it down. One potential target for new therapies is alpha-synuclein, a protein found in the human brain that is associated with the development of PD. Scientists are looking at ways to clear abnormal forms of alpha-synuclein from the brain using various immune therapies. Dr. Mark Guttman discusses these approaches based on what is known and unknown about Parkinson’s today.
Released: August 1, 2017
If you’ve heard of alpha-synuclein, it was likely in the context of Lewy bodies. Lewy bodies are abnormal clumps of alpha-synuclein that are found in the parts of the brain that control movement, thinking, and behavior, and they are related to the development of Parkinson’s. Lewy body dementia is a general term that includes both Parkinson’s disease dementia (when you have Parkinson’s and dementia develops later on) and Dementia with Lewy bodies (DLB) (when dementia comes on before or within one year of Parkinson’s motor symptoms).
Another term used in this episode that you might not be familiar with is “ligand.” A ligand is a molecule that binds to another molecule. Ligands are used in imaging, such as PET scans, to help doctors visualize different parts of the body, including the brain. Currently there is no ligand for alpha-synuclein to let us see how Lewy bodies are forming, or how they might be cleared by a potential therapy.
Dr. Guttman remarks that the alpha-synuclein story is the most exciting development to date in terms of potential for altering the progression of Parkinson’s. It has taken the PD community a long time to reach this point. The first revolution in Parkinson’s care came in the 1960s, with the discovery that Parkinson’s is a disease of dopamine. One hundred and fifty years after James Parkinson’s Essay on the Shaking Palsy, researchers developed a treatment to greatly improve PD symptoms. Over time, many variations of levodopa have provided additional modest benefits for people with PD, and now new delivery methods for levodopapromise to improve outcomes.
Decades later the next breakthrough in care came when the FDA approval deep brain stimulation for the treatment of PD. Today, we know that Parkinson’s is a synucleinopathy – a disease of alpha-synuclein – which brings us to the therapeutic approaches being discussed in this episode.
Dr. Guttman is a movement disorder neurologist at the Centre for Movement Disorders in Toronto, Canada. He provides specialized neurological services to people with movement disorders and is involved with clinical research at the Centre and at the University of Toronto.
Episode 132: Managing Comorbidities with Parkinson’s Disease
Just as people in the general population have to contend with various unrelated medical conditions, so may people with Parkinson’s disease (PD). Such conditions are termed “comorbidities,” that is, diseases or conditions occurring along with, in this case, PD. Examples are cardiovascular disease, strokes, arthritis, diabetes, asthma, cancer, cataracts, other diseases of aging, as well as those that can occur at any stage of life. An important consideration is to determine which health professional would be best at addressing them and who coordinates the care.
A movement disorders specialist may feel comfortable treating a general neurological condition in addition to PD, but in this podcast episode, movement disorders neurologist Ashley Rawls, MD, MS of the University of Florida College of Medicine in Gainesville, a Parkinson’s Foundation Center of Excellence, emphasizes that one’s time with her is best used addressing the person’s PD, while comorbidities are most appropriately managed by specialists in those particular areas. For best patient outcomes, proper coordination of care and sharing of information will give each health professional a total picture of the person’s medical management, including prescribed drugs and possible drug interactions.
Released: July 12, 2022
Ashley Rawls, MD, MS is a clinical assistant professor at the University of Florida College of Medicine, specializing in Movement Disorders at the Fixel Institute for Neurological Diseases. After completing her undergraduate degree at Duke University and master’s degree in aging and neuroscience from the University of South Florida, Dr. Rawls received her medical degree from the University of Florida in 2014. After medical school, she completed her neurology residency at the Medical University of South Carolina. Then, she pursued a clinical movement disorders fellowship and post-doctoral research fellowship at Stanford University. Dr. Rawls is board-certified in neurology by the American Board of Psychiatry and Neurology, and she is currently licensed to practice medicine in both Florida and California. Dr. Rawls has also been recognized for her diversity and inclusion advocacy, such as serving as co-Chair on the University of Florida Department of Neurology Diversity and Inclusion Committee, and recently being elected to the Journal of America Medical Association (JAMA) Neurology as the Diversity, Equity, and Inclusion Editor.
The focus of this webinar will be to address the needs of veteran’s living with Parkinson’s disease (PD). A healthy lifestyle is an important part of living well with Parkinson’s. Physical exercise is well-established as beneficial for symptom control and possibly disease modification, and physicians regularly counsel patients to increase overall fitness. Similarly, diet and overall brain health can be another tool to fight PD. This webinar will explore how exercise, dietary choices, stress management, sleep and social connection can affect your brain health and PD care.
John Eric Duda, MD
Professor of Neurology at the Veteran's Administration Medical Center
Director, Parkinson's Disease Research, Education and Clinical Center of the Michael J. Crescenz VA Medical Center, University of Pennsylvania
Co-Director, Center for Neurotrauma, Neurodegeneration and Restoration of the Michael J. Crescenz VA Medical Center, University of Pennsylvania
James F. Morley, MD, PhD
Assistant Professor of Neurology at the Veteran's Administration Medical Center Staff Neurologist, Philadelphia VA Medical Center
Associate Director, University of Pennsylvania/PADRECC Movement Disorders Fellowship Program. Co-director, Parkinson's Disease Research, Education and Clinical Center, Crescenz VA Medical Center
Podcasts
Episode 144: How to Cope with Blood Pressure Fluctuations
Parkinson’s disease (PD) affects several automatically regulated bodily functions, such as digestion, bowel activity, sweating, and blood pressure control, together known as autonomic functions. Low blood pressure, or hypotension, is common in PD, and high blood pressure (hypertension) can also occur. They may be a result of the disease itself or be caused by some of the medications to treat it. Hypotension, in particular, can be dangerous, leading to dizziness, fainting, falls, and fractures.
Up to 60% of people with PD may experience orthostatic hypotension at some point, which is a drop in blood pressure within three minutes of changing to a more upright position, that is, from sitting to standing or from a lying position to sitting or standing.
In this episode, Jeni Bednarek, RN, BSN, ACRP-CP, nurse team coordinator and associate director of education of the Parkinson Center of Oregon in the Parkinson’s Center and Movement Disorders Program of the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses several ways for individuals with PD to cope with blood pressure problems, including pharmacologic and non-pharmacologic methods, as well as working with their health care providers to reach a good blood pressure balance.
Released: January 24, 2023
Jeni Bednarek, RN, BSN, ACRP-CP is the Parkinson Center of Oregon team coordinator and associate director of education. She is the clinical RN for the Next Step and PSP clinics. She joined the PCO and Movement Disorders Program in 2021. She started her nursing career in the ER, has experience coordinating clinical trials in both neurosurgery and chronic pain, and has done case management in maternal/child health, public health, and chronic illness.
