Substantial Matters: Life & Science Of Parkinsons

The cause of most cases of Parkinson’s disease (PD) is unknown. Researchers have found genes or genetic variants that are associated with risk for the development of PD, but genetic causes are thought to play a role in only a minority of cases. However, accumulating evidence from epidemiologic studies, laboratory basic research, and animal models indicates that exposure to environmental toxins can increase risk of the disease. These substances include pesticides, solvents, metals, and other environmental pollutants. In this episode, Samuel Goldman, MD, MPH, Professor of Occupational and Environmental Medicine and Neurology at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, reviews what has been learned so far and explains some of the complexities of doing research on environmental causes of PD.

Entender si existe una correlación entre cultura, idioma y opciones de tratamiento en el Parkinson nos ayuda a saber cómo se comunica la información de la enfermedad entre los hispanohablantes (desde las opciones quirúrgicas hasta la información general de la enfermedad).   En este episodio, hablamos acerca de la neuropsicología, la familia y la cultura en la medicina con el doctor Xavier E. Cagigas, director asociado del Centro de Excelencia Neuropsiquiátrico para Hispanos de UCLA y profesor clínico asistente de ciencias de la salud en el departamento de Psiquiatría y Ciencias Bioconductuales en la University of California, Los Ángeles, UCLA.   El doctor Cagigas comparte su experiencia con los programas culturales de neuropsicología y la correlación entre cultura, idioma y opciones de tratamiento en el Parkinson.  

Restorative sleep is vital for optimal physical, mental, and emotional health. Sleep problems affect a large proportion of the general population and take many forms, so the consequences of poor sleep are widespread. In particular, sleep disturbances affect more than 75 percent of people with Parkinson’s disease (PD). And according to our expert guest, Dr. Aleksandr Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, these problems are under reported by patients and under diagnosed by health professionals. The causes of sleep problems include recurrent symptoms of PD, disordered breathing, REM sleep behavior disorder, restless leg syndrome, and periodic limb movement disorder, among other factors and may be multifactorial. In this episode, Dr. Videnovic addresses some of the most frequent sleep problems – insomnia, REM sleep behavior disorder, and daytime sleepiness.

It is a long road to become an anesthesiologist – four years of medical school and another four years of postgraduate training and residency. To subspecialize in cardiac anesthesiology requires at least one more year. And Dr. Jonathan Lessin, our guest today, did all of that before he was diagnosed with Parkinson’s disease in his late 30’s, forcing him to adjust his career path.   Anesthesiology is a very “hands on” practice, requiring dexterity to insert and manipulate breathing tubes, intravascular catheters, and imaging, ventilatory, and other mechanical devices. It also requires stamina for long operations. Jonathan was able to continue working for some time after implantation of a deep brain stimulator (DBS). But, taking into account the safety of his patients, he eventually knew it was time to give up the profession he loved. In this episode, he relates his history, how he came to receive a Parkinson’s diagnosis from a friend, how he persevered as long as was practical, and what his DBS allows him to do

In this podcast episode, we ‘Meet the Researcher’, featuring a prominent investigator who has received support from the Parkinson's Foundation. We illustrate how a research career develops, what motivates people to study what they do, and to give some insight into what support from the Parkinson’s Foundation can accomplish in understanding the disease better and finding solutions.   In this episode, Dr. William Dauer, Director of the Brain Institute at the University of Texas Southwestern Medical Center in Dallas, describes his career path and how he came to be interested in movement disorders and in dystonia in particular, a condition in which muscles contract involuntarily, causing repetitive or twisting movements. He has long been involved in basic science research as well as in clinical practice, and what he has found in each area he has been able to apply to the other.

People with Parkinson’s disease (PD) may experience mental health problems, such as depression, apathy, and anxiety more frequently than the general population. Psychosis, such as delusions or hallucinations, may occur as part of the disease or from medications used to treat it. Fortunately, these conditions are treatable if recognized. Unfortunately, clinicians may not screen for them, and therefore, the problems may be missed. In addition, people with PD may come to their clinic visits with a list of physical problems, so they may not make mental health a priority.   In this episode, geriatric psychiatrist Dr. Mary Hart Bryan of the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, explains some of the mental health conditions that people with PD may experience, and she emphasizes the importance of recognizing these conditions and seeing the proper health care professional for treating them, using psychotherapy, cognitive behavioral therapy, medication, or co

Neuropathy is a broad category of non-motor symptoms of Parkinson’s disease (PD), basically resulting from damage or dysfunction of one or more nerves. It typically may result in numbness, tingling (“pins and needles”), pain, or weakness in the area served by the specific nerve or nerves. Some pain sensations may be sharp, burning, or throbbing. According to the Cleveland Clinic, about 25% to 30% of Americans will be affected by some degree of neuropathy over their lives, especially as they age. Common risk factors are diabetes, metabolic syndrome, heavy alcohol use, as well as tasks requiring repetitive motions. Neuropathies frequently start in the hands or feet but may occur in other body sites as well.   Neuropathy occurs more frequently among people with PD compared to those without PD, and the reasons are not entirely clear. PD itself may be a factor in neuropathy, and levodopa may contribute to lower vitamin B12 levels, leading to neuropathy. However, not all neuropathies experienced by people with PD a

En honor al Mes Nacional de los Cuidadores Familiares, en este episodio, hablamos con Ruby Rendon, Coordinadora de Alcance Hispano en el Muhammad Ali Parkinson Center y cuidadora principal de su mamá, Corina Villalobos, que hace ya 15 años fue diagnosticada con la enfermedad de Parkinson.   Poco después del diagnóstico de su mamá, se interesó en aprender más sobre la enfermedad y fue así como encontró el programa para hispanos del Muhammad Ali Parkinson Center.   Ruby comparte su experiencia como cuidadora de su madre, los recursos que le han ayudado a navegar su recorrido emocional como cuidadora, donde encuentra el apoyo emocional en su vida y lo que le ha ayudado a superar los desafíos que ha enfrentado.

For many years, Western medicine focused on disease and on keeping people healthy. Then it evolved to view the “whole person,” including the physical, mental, emotional, social, and environmental aspects of one’s functioning. Today’s medicine goes even beyond that model and encompasses the family, especially care partners, who take on so much when caring for a loved one with a chronic disease.   A leading voice in this area is Jori Fleisher, MD, MSCE of Rush University Medical Center in Chicago, who has been developing a peer mentoring program in Parkinson’s and related diseases. In a study she conducted using regularly scheduled home visits for people with advanced neurodegenerative diseases, the researchers found that caregivers’ strain increased from mild to moderate or even to severe over the course of one year. So now she is addressing caregiver needs through a peer mentoring program built into a home visit program, with a research component to it. After a period of training, peer mentors were matched wi

Until the ultimate goal of finding a cure for Parkinson’s disease (PD) is achieved, researchers are taking various approaches to developing a treatment that significantly slows its progression. Here, clinical science and basic science come together to understand the underlying biological mechanisms of PD and then using that knowledge to test medications that target those mechanisms. Having discovered such molecular and cellular malfunctions, scientists may tailor the development of medications to target the underlying causes of the disease.   Another approach has also relied on knowing the mechanisms of the disease but then searching through the vast array of current drugs to treat all sorts of conditions and rationally choosing ones that may work to slow progression of PD – so-called drug repurposing. Dr. Patrik Brundin, Director of the Parkinson’s Disease Center at Van Andel Institute in Grand Rapids, Michigan, explains that this is the approach that the International Linked Clinical Trials (iLCT) program f

Gene-based therapies for Parkinson’s disease, while still in the developmental stage, are under active investigation. For this potential therapy, genes are engineered in a laboratory and then injected into specific parts of the brain. The genes may function either to induce cells in the brain to produce dopamine, or to code for the production of enzymes that then lead to the production of dopamine.   This episode is the second part of our conversation with Dr. Roger Barker, Professor of Clinical Neuroscience at the University of Cambridge in the United Kingdom. In our previous podcast with him, he discussed cell therapy for Parkinson’s. Here, he explains what gene-based therapy is, plans for the execution of the treatments, what symptoms they are aimed at, where the field currently stands, and how it compares to developments in cell-based therapies. As the field is still in the experimental stages, he again offers advice to people with Parkinson’s who are considering entering a clinical trial of gene-based or

Researchers have been investigating cell-based therapies for treating Parkinson’s disease (PD) for some time now, using a variety of materials and methods. Two approaches have been to implant dopamine-producing cells or to induce cells already in the brain to become dopamine-producers. We asked Dr. Roger Barker, Professor of Clinical Neuroscience at the University of Cambridge in the United Kingdom, to summarize what has been learned so far and based on that, to give his perspective on where the field may be headed. The field is still in the experimental stages, and he cautions about what people with PD should ask when considering entering a clinical trial of cell-based therapy and what they may expect in terms of symptom management and disease progression.

Not all medical interventions for Parkinson’s disease (PD) involve drugs. Two other main treatments are deep brain stimulation (DBS) and focused ultrasound (FUS). DBS uses a surgically implanted electrical pulse generator connected to electrodes placed in the brain to stimulate areas involved in PD. FUS does not require surgery but aims ultrasound –  high frequency sound waves – at a specific area of the brain to relieve Parkinson’s symptoms.   Each technology has its uses, advantages, and disadvantages. In this podcast episode, Kyle Mitchell, MD of Duke University in North Carolina discusses the two treatments, how each works, which patients may do best with either of them, and some caveats. He also looks ahead at what is in development. 

Social isolation may affect many people as they age, and COVID has exacerbated the problem for everyone. Isolation can have negative effects on physical as well as mental health. People with Parkinson’s disease (PD) are especially at risk for social isolation because of progressive physical changes, mood disturbances, a shrinking social circle, and secluding oneself due to fear of how people may perceive them. Apathy is also a common non-motor symptom, affecting people with Parkinson’s and making it difficult for them to get involved in activities. Other non-motor symptoms such as anxiety and depression can further limit social engagement.   In this podcast episode, Aaron Daley, Coordinator for the Parkinson’s Disease Clinic and Research Center at the University of California, San Francisco, discusses social isolation and ways to overcome it, whether you live in an urban or rural area. He recommends seeking out support at the first sign of the problem, exercising regularly, or just establishing a routine of a

Social isolation can have harmful effects on health and often increases with age because of loss of friends, acquaintances, or a spouse, hearing or vision deficits, or loss of mobility. In addition to being a risk factor for poor health, social isolation has been associated with an increased risk of death. Loneliness may lead to poor sleep and depression, two problems that already affect a proportion of people with Parkinson’s disease (PD). On top of all this, for more than a year social distancing to limit the spread of COVID-19 has added to problems of mental and physical health for many people.   In the face of a lack of research on social isolation in PD, Dr. Indu Subramanian, Director of the Parkinson’s Disease Research, Education and Clinical Center at the West Los Angeles Veterans Affairs Medical Center, conducted a survey of people with Parkinson’s to see if social isolation is associated with the severity of their symptoms and with their quality of life.   The survey was done before the pandemic. It

Two important issues regarding Parkinson’s medications are when to initiate them in the early phases of the disease and how to ensure that people use their medications on time, every time. Myths and misconceptions have surrounded the controversial question of when to start taking medication. Fortunately, research has provided some answers, indicating that early initiation of levodopa or other medications does not diminish their usefulness later on. In this episode, Dr. Indu Subramanian, Director of the Parkinson’s Disease Research, Education and Clinical Center at the West Los Angeles Veterans Affairs Medical Center, discusses what has been learned about the timing of the initiation of therapy.   She also provides strategies for getting the most benefit from medications, from taking them at the right time every time, to establishing other regular schedules, to working with your doctor at every visit to optimize benefits and minimize side effects. And as a neurologist who is also board certified in integrative

Cuando existe una barrera del lenguaje entre una persona con Parkinson o, realmente, con cualquier tipo de enfermedad, y su equipo médico, la calidad de atención médica que recibe esa persona puede sufrir.   En este episodio, conversamos con la doctora María Luisa Moro, neuróloga del Centro de Trastornos del Movimiento Chase Family, Hartford Healthcare y directora de la Clínica Hispana del mismo Centro, localizada en Hartford, CT. Ella nos habla acerca de su trabajo para mejorar la atención de los pacientes hispanohablantes con Parkinson, con la creación de una clínica totalmente dirigida a esta comunidad; la primera de este tipo en Connecticut.   La doctora Moro comparte cómo identificó la necesidad de desarrollar un centro especializado para la comunidad hispanohablante con Parkinson, al notar que la falta de servicios para hispanos y la barrera cultural y del lenguaje puede prevenir que las personas con la enfermedad de Parkinson reciban un tratamiento integral, personalizado y multidisciplinario, con los

Most people with Parkinson’s disease (PD) first seek medical care when they recognize or are troubled by symptoms – often stiffness, slowness of movement, or tremor. They may go on drug therapy at the time of diagnosis or, typically, within six to twelve months to relieve those symptoms.   In order for researchers and drug developers to test and ultimately find drugs that can slow the progression of the disease, they need to test those drugs in people who are not already on medications to alleviate symptoms and compare them to similar people taking a placebo. Currently there is no blood test or other biomarker to measure progression, so the most common and straightforward way for drug trials to judge progression is to observe signs and symptoms in people not receiving symptomatic medications such as levodopa, dopamine agonists, or other drugs that make symptoms less apparent.   Dr. Robert Hauser, Director of the Parkinson’s Disease and Movement Disorders Center at the University of South Florida in Tampa, urg

As most people with Parkinson’s disease (PD) and their care partners know, medication management is crucial for controlling PD symptoms. Given that many people need to take medication multiple times a day, “on time every time” becomes a way of life, regardless of where one is – at home, at work, visiting with friends, shopping, or traveling. Ironically, one of the most difficult places to get medications on your individual schedule is in the hospital. Hospitals have set times to dispense medications, so a hospitalized person with Parkinson’s or their care partner needs to impress upon the staff that Parkinson’s medicines have to be given on the patient’s schedule, not the hospital’s. Rose Lang’s husband, John, fell and broke his hip, resulting in his transport to a local hospital and several hours in the emergency department. Fortunately, he brought some of his pills with him and took them while waiting to be admitted to a room in the hospital. But even then, Rose, a retired pharmacist, had to educate the med

When people think of Parkinson’s disease (PD), they often think of tremor, possibly because that is how the multi-talented English surgeon James Parkinson first described the disease in the early eighteenth century. In reality, tremor does not have to be present to receive a PD diagnosis. About 70% of people with PD experience this symptom sometime during the course of their disease, mainly affecting their hands and usually when the hands are at rest. Other sites of tremor are the lower lip, jaw, and leg. Obviously, tremors can interfere with daily activities, especially ones requiring fine motor control, such as shaving, dressing, writing, and various hobbies.   Several drugs can control tremor, with levodopa being one of the most effective. If levodopa alone is insufficient, it can be combined with other anti-Parkinson’s medications. Beyond drugs, various other treatments are available, including deep brain stimulation and focused ultrasound. But not to be forgotten, exercise is as important as medication,