Substantial Matters: Life & Science of Parkinson’s

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...

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...

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...

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...

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...

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...

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,...

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...

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...

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...

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,...

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...

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,...

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...

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 partners have an essential role in helping to make life better for people with Parkinson’s disease (PD), and the Parkinson’s Foundation recognizes that taking care of the care partner enables them to be at their best. The 2021 Care Partner Summit | Cumbre Para Cuidadores is recommended for anyone caring for someone living with PD. It will be held online on several days in May in English with Spanish translations available two weeks later. Beginning in June, a set of self-paced online...

La telemedicina es el uso de la tecnología para permitir conectar con los doctores de manera remota; es decir, poder usar la computadora como un medio para conectar con su doctor y tener una cita clínica. La telemedicina ha revolucionado el acceso y la calidad de las consultas en los tiempos del coronavirus. Por mucho tiempo, la tecnológica ha estado disponible, pero había muchas limitaciones en el acceso. Ahora, con la pandemia, se han abierto las puertas al uso de esta tecnología. En...

Parkinson’s is a multifaceted disease, and as such, there are many ways people with Parkinson’s disease (PD) can find help, including through medications, exercise, occupational and physical therapy, dance and music therapy, and meditation and mindfulness practices. Another important way is to join a support group to share experiences, learn from peers, and express problems and emotions. Such groups are not just for the person with PD, and care partners often attend and benefit. In this...

Nutrition is a vital component of maintaining and preserving good health. It may be an especially important consideration when one has a disease or other health condition that may impose certain dietary requirements or restrictions. At the same time, the standard recommendations for good health still stand – heart healthy eating, weight control, adequate fluid intake, limiting alcohol consumption, and more. With Parkinson’s disease, dietary choices and habits can help alleviate some...

El cuidado de largo plazo es un tipo de seguro que puede ayudar a cubrir el costo de un servicio por si uno llega a enfermar y no puede cuidar de sí mismo. La directiva avanzada le da a uno la oportunidad de escribir antes de que enferme todo lo que desea que le pase o cómo desea que le traten, por ejemplo, en un hospital. El punto clave acerca de estas pólizas es tomar la decisión de elegirlas antes de que uno enferme, especialmente si tiene un historial o algún familiar con una enfermedad...