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 for Parkinson’s has taken. Since its inception in 2010, the iLCT has become one of the most comprehensive drug repurposing programs focused on a single disease. Under this program, seven clinical trials have been completed, and 15 are ongoing, testing 16 potential candidate drugs to slow the progression of PD. The advantage is that the drugs under consideration have already been tested for safety and how they act in the body, speeding up the process of applying them to Parkinson’s.

Substantial Matters: Life & Science of Parkinson’s

Repurposing Medications to Slow Progression of PD

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 cell-based therapy and what they may expect in terms of symptom management and disease progression.

Gene-Based Therapies for Parkinson’s Disease

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.

Cell-Based Therapies for Parkinson’s Disease

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. 

Non-pharmaceutical Treatments for PD: DBS and Focused Ultrasound

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 activity with a companion.

Alone in a Crowd: Overcoming Isolation

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 showed that people reporting loneliness had 55% higher symptom severity, but individuals with a lot of friends had 21% fewer symptoms as compared with people reporting having few or no friends. (These are associations, and one should not assume a cause-and-effect relationship.) These results support the need for people with Parkinson’s to be socially engaged to prevent loneliness. In this podcast, Dr. Subramanian discusses loneliness and social isolation and offers suggestions for keeping them at bay.

Social Isolation and Loneliness

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 medicine, Dr. Subramanian advocates for incorporating mind-body, movement, and breathing techniques, as well as connecting with nature when using medication and other traditional Western medical practices.

Medication Timing

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 últimos avances de la ciencia. También nos explica no solamente la importancia de la atención médica en un mismo idioma, sino de contar con un equipo de profesionales de la salud que entienden su cultura y necesidades.

¡EN ESPAÑOL! Deshaciendo la barrera del idioma con una clínica hispana

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, urges people early in the course of their disease to enter a clinical trial as soon as they receive a PD diagnosis and before they go on medication. The longer that they can be observed before taking a potential disease-modifying medication, the greater the ability of researchers to detect changes, or in the case of a drug in development, if successful, not to see changes. However, patients who can go up to a year without medication are in short supply, in part because patients often wait to seek medical help until they want medication. As Dr. Hauser wrote in a medical publication a few years ago, “… why see a doctor when you don’t need treatment?”   But the answer is because people very early in the course of their disease are vital to finding drugs that can slow progression. Dr. Hauser terms the critical period of about one year between the time of first motor symptoms appearing to initiating symptomatic therapy the “Golden Year” for participation in disease modifying clinical trials. So, he wrote, “It is critical that care providers and patients don’t unknowingly waste this golden year.” In this episode he lays out the problem, has messages for patients and providers, and tells how such a system of referral to entry into clinical trials can work.

The Golden Year for Testing Disease Modifying Drugs

As most people with Parkinson’s disease (PD) and their care partners know, medication management is crucial to controlling motor 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 on the hospital’s.   Rose Lang’s husband, John, fell and broke his hip, resulting in his transport to a local hospital and a several-hour period in the emergency department. Fortunately, he brought some of his pills with him and took them while waiting to be admitted to a room on a floor in the hospital. But even then, Rose, a retired pharmacist, had to educate the medical and nursing staff about the need for John’s “pills on time, every time.” She is also an Aware in Care Ambassador for the Parkinson’s Foundation, so John arrived at the hospital with his Aware in Care kit, and Rose made ample use of the resources within the kit to inform and educate the hospital staff caring for her husband.

Advocating for a Safe Hospitalization

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, and stress management can be beneficial. In this podcast episode, movement disorders neurologist Dr. Muhammad Nashatizadeh of the University of Kansas Medical Center, a Parkinson’s Foundation Center of Excellence, discusses several ways to control tremor. Looking beyond today’s therapies, one of his research objectives is to identify new treatment options for debilitating movement disorders.

Tremors: Coping & Treatment Options

Palliative care is a specialized model of care incorporating medical, psychological, social, and spiritual aspects, all with a goal of relieving the burdens of a serious illness. The palliative care model can well be applied to most diseases to improve the quality of life for both patients and families. A “transdisciplinary” team of a doctor, nurse, social worker, and chaplain assess patients based on their needs, not on their prognosis. Although hospice incorporates this form of care near the end of life, palliative care is appropriate at any stage of a serious illness, including right from the point of diagnosis. While it addresses physical symptoms, it also aims to minimize emotional trauma and suffering from stress and to enhance spiritual wellness throughout the course of a disease, as an additional layer of support for the patient and family.   In this second podcast of our two-part series on palliative care and hospice, Adriana Gonzalez, LCSW of the University of California, San Diego, a Parkinson’s Foundation Center of Excellence, talks about the benefits of palliative care, the ongoing relationship of the care team with the patient and family, and how this form of care can specifically address the needs of people with Parkinson’s disease, including their non-motor symptoms.

How Movement Disorders Fit into the Palliative Care Model

Una gran parte de mejorar la vida de las personas con Parkinson es cuidar a las personas que los cuidan.   En este episodio, hablamos con Alma Aragon, cuidadora de su esposo Carlos Aragon, diagnosticado con la enfermedad de Parkinson hace cuatro años. Alma nos comparte su experiencia como cuidadora y cómo ha manejado los altibajos del viaje con su esposo, con quien lleva 25 años de casada. Si bien su viaje por el Parkinson ha tenido sus retos, Alma y Carlos han aprendido, creciendo juntos, que lo que mantiene su unión, por sobre todas las cosas, es el amor.  

¡EN ESPAÑOL! Cuidando del cuidador

As Parkinson’s disease (PD) progresses into its advanced stages, symptoms can become increasingly difficult to manage. At some point, the person with PD and care partners may consider hospice services, which can optimize the quality of life for the person and the family. Whether the person resides at home, in an assisted living facility, or in a nursing home, hospice can come to them. Hospice is really part of palliative care, which aims to relieve the burden of a disease not only near the end of life but all along its course. Both the terms “palliative care” and “hospice” are often misunderstood, and certain myths surround them.   This podcast is the first of a two-part series on hospice and palliative care. In this first episode, Jessica Shurer, MSW, LCSW, Clinical Social Worker and Center Coordinator of the Movement Disorders Center at the University of North Carolina at Chapel Hill, a Parkinson’s Foundation Center of Excellence, helps to dispel some of the misunderstanding about hospice. She describes what hospice is, how it operates, and when and how to consider it. Moreover, she highlights the medical, psychological, and logistical benefits it can bring to the person with PD and to care partners.

Hospice Care and the Myths Surrounding It

When to consider an assisted living facility or a skilled nursing facility for someone with Parkinson’s disease (PD) is a monumental decision, raising a list of questions, including quality of the facility, location, physical layout, services, staff training and experience in caring for people with PD, financial aspects, and more. A care partner is integral in helping to research facilities and evaluate their appropriateness based on their partner’s needs and preferences. But the role of the care partner does not end there. Once a person is in such a facility, the partner can help implement best care practices, letting staff know about particular symptoms, needs, habits, and preferences of the resident, as well as advocate for them when necessary.   In this podcast episode, Joan Gardner, BSN, nurse clinician, and Rose Wichmann, PT, director of the Struthers Parkinson’s Center in the Minneapolis area, a Parkinson’s Foundation Center of Excellence, explore many of the issues that are central to choosing an assisted living or skilled nursing facility as well as ensuring the best experience once someone resides there.

Best Practices & Guidance: Navigating Assisted Living and Skilled Nursing Facilities

How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow.

hubhopper

Substantial Matters: Life & Science of Parkinson’s

hubhopper