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.
¡EN ESPAÑOL! Acerca del Consejo para personas con Parkinson, o el ‘People with Parkinson’s Council’, de la Parkinson’s Foundation
El Consejo para personas con Parkinson, o el ‘People with Parkinson’s Council’ por sus siglas en inglés, de la Parkinson’s Foundation, es un grupo de personas que viven con la enfermedad de Parkinson, incluyendo cuidadores, que asumen el rol de asesores para la Fundación. Esto asegura que la perspectiva de las personas que viven con Parkinson se integre en el desarrollo de los proyectos, de las investigaciones y del material educativo de la Fundación.
El consejo deja que la voz de las personas con Parkinson sea escuchada y representada. Cuando hay algún proyecto o investigación, la Fundación siempre cuenta con la opinión y con las prioridades de las personas que viven con la enfermedad, quienes saben cómo es vivir con el Parkinson día tras día.
En este episodio, hablamos con Alejandra Borunda, miembro del Consejo para personas con Parkinson de la Fundación. Alejandra nos habla de su experiencia con el consejo y con la Fundación, de sus metas en el grupo, siendo hispanoparlante, y lo que desea lograr para la comunidad hispana del Parkinson.
PD Medications and Side Effects
Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.
In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.
The Healing Power of Social Work
A team approach to Parkinson’s disease (PD) often results in better outcomes and quality of life for people with PD and their care partners. Members of the team have specific expertise in evaluating and fulfilling the needs of the person and family. One of those members is the social worker, and ideally, one who specializes in chronic or progressive diseases. He or she can assess how the person is functioning in their environment, their emotional state, and their needs. Once the assessment is done, the social worker can help meet those needs by directing people to the most appropriate resources, or in the case of Licensed Clinical Social Workers (LCSW’s), (or the equivalent in some states, Licensed Independent Social Workers), by directly providing therapy in the areas of mental and emotional health. Social workers also can function as a “point person” or starting point for people with PD and care partners who may know what they need but not where to find it or how to access it.
In this podcast episode, Elizabeth Delaney, LCSW, social worker in Columbia University’s movement disorders division and the center coordinator of the Parkinson’s Foundation Center of Excellence at Columbia, describes the role of social workers as part of a Parkinson’s health care team, and she offers suggestions on how people with PD can find a social worker experienced in working with people with progressive diseases.
Understanding Neurogenic Orthostatic Hypotension
Among the many non-motor symptoms of Parkinson’s disease (PD) are blood pressure changes. One manifestation is neurogenic orthostatic hypotension, a condition in which blood pressure drops sharply when one moves from a reclining to a more upright position, such as standing up when getting out of bed or rising from a chair. The person may feel lightheaded, dizzy, lose balance, or, rarely, even lose consciousness. Besides being uncomfortable, the condition can be dangerous if it leads to a fall and subsequent injury. Orthostatic hypotension is common in mid- and late-stage PD, but it may also be an early sign of the disease.
Fortunately, there are strategies and other measures people can do for themselves to lessen the problem, and a variety of medications may help. Other conditions and medications can also lead to the condition, and they should be investigated in addition to a connection with PD. In this podcast, neurologist Dr. Katie Longardner of the University of California San Diego discusses the problem, how it is diagnosed, what people can do to alleviate it, and some of the research she and others are conducting.
Benefits of Practicing Tai Chi Chuan Exercises
Many people find that Eastern mind-body practices complement Western medicine well and produce additional benefits. One Eastern system of mind-body integration is tai chi and its martial art practice of tai chi chuan. Using continuous, flowing movements, this moving meditation addresses flexibility through stretching and involves aerobic activity and relaxation as well. Through the practice of tai chi, people can develop better awareness of movement and actions, develop better body alignment, posture, core strength, and breath support and control. Studies have shown physical benefits on balance and slowing the decline in motor control as well as mental health benefits in terms of stress management, possibly cognition, and quality of life for people with Parkinson’s and their care partners. In this episode, Dr. Pei-Fang Tang, professor of physical therapy in the School of Physical Therapy at National Taiwan University, says tai chi is based on ancient Chinese philosophy, part of which is a dynamic balance between yin and yang, which are invoked by the movements in its practice and which bring balance to one’s life.
Veterans Day Bonus Episode
In honor of Veteran’s day, we want to share Lou Eisenbrandt’s My PD Story about her experience as a Vietnam Veteran whose Parkinson’s disease is a result of exposure to the herbicide Agent Orange during the war. Lou is a steadfast PD advocate and has been involved with the Parkinson’s Foundation Heartland, and recently joined the Parkinson’s Foundation People with Parkinson’s Council.
Customer ReviewsSee All
Grouchy PD husband
Thank you for your very informative podcast. My husband was diagnosed 5 years ago. His mother also had Parkinsons but it was a very mild case. My question is this: Are mood changes common with this disease? My sweet, loving husband has turned into a grouchy complainer. I can’t seem to do anything right in his opinion. I look forward to your answer.
A wonderful way to get a diverse perspective and info on the many different facets of living with PD. or loving someone with PD.
Great job keeping us informed!