Substantial Matters: Life & Science of Parkinson’s

La alimentación es fundamental para las personas con Parkinson. Para asegurarnos de la fibra, vitaminas, minerales completos y necesarios para nuestros cuerpos, debemos consumir una variedad de alimentos de todos los grupos, como el grupo de los granos, de los colores (los vegetales y las frutas), de la leche (los productos lácteos), y de las proteínas. Con el Parkinson, también vemos que los medicamentos pueden causar efectos secundarios en nuestra nutrición o dieta diaria. En este...

When a person shows up in a doctor’s office with symptoms that may be related to Parkinson’s disease (PD), the diagnosis may not be obvious since symptoms often differ from person to person or could be indicative of other conditions. It’s not uncommon for people go from doctor to doctor over months or even years before they get a correct diagnosis. A visit to a movement disorders neurologist may result in a faster PD diagnosis, but unless PD is suspected, that may not be the first medical...

Movement issues are central to Parkinson’s disease (PD), even in the early stages before complications may become obvious. From the time of diagnosis and throughout the course of the disease, movement and staying physically active are essential. Both regular exercise and physical therapy can help people with PD keep moving well and for as long as possible. The Parkinson’s Outcomes Project, the largest clinical study of PD, conducted across the Parkinson’s Foundation’s Centers of Excellence...

Clinical studies, studies that involve people, first use healthy people to test a drug’s safety and then use people with a disease or condition to prove that the drug works as intended. They are essential for bringing any new therapy to the public. Getting U.S. Food and Drug Administration approval for devices require rigorous studies, as well. Recruiting enough people to participate is often a long process, and for trials that may go on for a year or more, retaining people in the studies is...

When people take a prescribed drug, they rarely if ever consider how it came to be. They assume it is the right drug and will work safely as it is supposed to. But leading up to that drug being available is a long process of discovery or invention of the molecule based on knowledge of the biology it is supposed to affect, then testing in the laboratory and in animals, and several phases of testing in people to make sure that it is safe and effective. Each of these steps takes time and lots...

Parkinson’s disease (PD) is a multi-factorial condition, with the potential to affect all aspects of people’s lives. Besides the well-known motor and non-motor symptoms, it also can lead to dementia, characterized by impairment of such mental functions as cognition, memory, and judgment, leading to forgetfulness, limited social skills, and difficulties in daily functioning. The decline in mental abilities can range from mild cognitive impairment that does not affect work or daily functioning...

A través del alcance comunitario para la comunidad del Parkinson de habla hispana, vemos que hay una gran necesidad de servicios no solo en español, sino que respondan a la cultura. También existe un gran interés en desarrollar servicios para la población con acceso limitado a estos recursos. Por esta razón, Claudia Martinez, coordinadora de alcance hispano del Muhammad Ali Parkinson Center, parte del grupo de Centros de Excelencia de la Parkinson’s Foundation, realizó un entrenamiento para...

Personalized medicine has garnered a lot of attention over the past decade. Usually it means determining the factors for each person that affect their health, their diseases, and potentially their treatments. Some examples are biomarkers that are found in their blood, their genetic make-up, diet and nutrition, behaviors, and environment. One example is the Parkinson’s Foundation’s PD GENEration initiative that offers free genetic testing and counseling for people with Parkinson’s disease...

Since swallowing involves a complex and coordinated sequence of muscular movements, it is not surprising that difficulties swallowing food or liquids are common in a movement disorder such as Parkinson’s disease (PD). They can cause problems from the inconvenient to troubling, dangerous, or life threatening. Drooling is uncomfortable and can result in social isolation. Not taking in enough food to get adequate calories and nutrients may cause hunger, malnutrition, weight loss, and frailty....

La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los...

The Parkinson’s Outcomes Project (POP) is the largest-ever clinical study of people with Parkinson’s disease (PD). Since the beginning of this groundbreaking initiative in 2009, Parkinson’s Foundation Centers of Excellence have been tracking and monitoring the care of more than 13,000 people in five countries with all stages of PD. The goal is to find the most effective therapies, study their benefits, and determine the best candidates for each treatment. One of the findings of POP is...

Disease rating scales give clinicians a snapshot in time of the severity of a disease, how it may be affecting a patient, and areas where therapies may be applied. Put together over time, rating scale results can indicate the progression of a disease and possibly help with long term planning. In the case of Parkinson’s disease (PD), the Hoehn and Yahr scale, published in 1967, describes the progression of PD according to five stages from earliest to most advanced, based on severity of...

Parkinson’s disease (PD) is much more than a movement disorder. It can have wide ranging effects throughout the body. In terms of the brain, people with PD may experience changes in cognition, mood, emotion, perception, attention, sleep, memory, motivation, and the senses, as well as drug-induced behavioral changes. One of the key professionals on a comprehensive PD treatment team is the neuropsychologist, a person with training and expertise in asking questions and administering screening...

La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los...

Mindfulness is a therapeutic approach to help with stress reduction and its practice can promote good physical and mental health. It is based on deliberately focusing one’s awareness on the present moment with calmness in a non-judgmental way. In those moments, experiences may be external or internal. Examples of external experiences are what the body senses in the surroundings, such as feeling a breeze, hearing a distant train whistle, or smelling a cooking aroma. Internal experiences may...

Mindfulness is a mental state in which one focuses his or her awareness on the present moment, whether that focus is on the mind, body, or surroundings. In this therapeutic technique, one works towards calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way with the goal of achieving a state of alertness through a focused relaxation. The practice of mindfulness can be learned in a relatively short time through in-person sessions or even online. It can lead to...

Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas. En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre la significancia de las pruebas genéticas y de las iniciativas PDGENEration y el...

Clinical studies fall into two main categories – observational and interventional. An observational study is non-experimental. Researchers observe the effects of a risk factor, such as an inherited gene, or air quality, or a treatment that has already been applied. Researchers have no control over the variables. Such a study can show a correlation between the variable and the observed outcome but cannot prove that one caused the other. In an interventional study, such as a clinical trial,...

Self-awareness is an ability to focus on one’s own thoughts, actions, and emotions and evaluate and manage them according to what standards and values you set for yourself. Being self-aware from moment to moment can lead to better self-understanding and an ability to manage thoughts, emotions, strengths, weaknesses, beliefs, and motivations, with a goal of a more peaceful existence. Fortunately, self-awareness can be learned and cultivated using some simple techniques. Dr. Carsten Eggers,...

Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas. En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic. Este episodio es el primero en una serie de cuatro episodios con el doctor Mata, en las...