With Parkinson’s disease (PD), it’s essential to know where to find a movement disorder neurologist, a physical or occupational therapist, social services to help with daily activities, and agencies that can advise on elder issues. When you don’t know that certain services even exist, looking for them is impossible. This is where the Parkinson’s Foundation Helpline can be an essential resource. Helpline staff have broad knowledge about what services may be appropriate to address certain problems, and they can direct callers to these services.

One social worker has described himself like the Yellow Pages. He cannot do everything for his clients, but he acts like a directory of resources that can help them. So, too, is the Parkinson’s Foundation Helpline a valuable compendium of services for many of the needs of people with PD. In this episode, Social Worker Amanda Janicke, LCSW, an information specialist on the Parkinson’s Foundation Helpline, gives insight into what the Helpline can provide, and she provides examples of some agencies that can help people with PD.

An early Parkinson’s diagnosis is the first step to getting Parkinson’s symptoms under control and living well with Parkinson’s. Getting a PD diagnosis is also one of the first obstacles many people in the Black PD community experience.

Research has shown racial disparities in the diagnosis and treatment of Parkinson’s – finding that Black people with PD are diagnosed at a later disease stage than white people and are less likely to be diagnosed compared to other racial and ethnic groups. These differences may be due to Black patients being historically excluded from research and to a range of health disparities, which cause them to systemically experience decreased access to resources and care due to social, economic and environmental disadvantages.

Working with specialists who understand and treat Parkinson’s can help you better manage your symptoms and reduce complications. Since people in the Black community are often less likely to see a PD specialist, awareness of PD in Black communities is essential.

In this episode for Black History Month, we speak with a woman who has been very involved in raising awareness of PD among the Black community. Since her diagnosis, Denise Coley has become engaged in PD organizations. She served on the Parkinson’s Foundation’s People with Parkinson’s Advisory Council, and she is currently the Chair of the Mission and Outreach Committee of the California Parkinson’s Foundation Advisory Council.

Parkinson’s disease (PD) depression may be a biological part of the disease itself, resulting from PD-related changes in brain chemistry. Untreated depression and other mood disorders can have a greater impact on well-being than even common motor symptoms.

Depression affects at least 50 percent of people with PD sometime in the course of their disease, but it is often under-recognized and, therefore, under-treated, even though effective treatments exist, both pharmacologic and nonpharmacologic. Treating depression can be a significant way to improve quality of life.

Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary in Alberta, Canada, a Parkinson’s Foundation Center of Excellence, discusses depression, the problem of under-diagnosis, and the benefits of recognition and treatment.

Parkinson’s disease (PD) affects several automatically regulated bodily functions, such as digestion, bowel activity, sweating, and blood pressure control, together known as autonomic functions. Low blood pressure, or hypotension, is common in PD, and high blood pressure (hypertension) can also occur. They may be a result of the disease itself or be caused by some of the medications to treat it. Hypotension, in particular, can be dangerous, leading to dizziness, fainting, falls, and fractures.

Up to 60% of people with PD may experience orthostatic hypotension at some point, which is a drop in blood pressure within three minutes of changing to a more upright position, that is, from sitting to standing or from a lying position to sitting or standing.

In this episode, Jeni Bednarek, RN, BSN, ACRP-CP, nurse team coordinator and associate director of education of the Parkinson Center of Oregon in the Parkinson’s Center and Movement Disorders Program of the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses several ways for individuals with PD to cope with blood pressure problems, including pharmacologic and non-pharmacologic methods, as well as working with their health care providers to reach a good blood pressure balance.

Researchers are accumulating evidence about how the environment affects our health and our diseases – both our internal and external environments. A significant part of our internal environment is the gut microbiome, that is, the bacteria, fungi, and viruses that naturally inhabit our intestinal tracts. The external environment is everything around us that we eat, inhale, or come into contact with, including industrial chemicals and pesticides.

Studies have shown that people with Parkinson’s disease (PD) harbor distinct gut microbiomes. Environmental exposures and genetic factors can affect the composition of the microbiome. Exposure to pesticides is a leading environmental risk for many neurological diseases, including PD. Tim Sampson, PhD, a cell biologist at Emory University in Atlanta, Georgia, a Parkinson’s Foundation Center of Excellence, received one of the Foundation’s Stanley Fahn Junior Faculty Awards to study how genetics and Parkinson’s-linked pesticides affect the gut microbiome. The aim is to see how these interactions may trigger Parkinson’s symptoms within the gut as well as those originating in the brain, with a goal of gaining insight at the earliest stages of the disease to better prevent PD and develop new therapeutic targets.

Adult children of a parent with Parkinson’s disease (PD) often want to help their parent but do not know how to begin. If they get involved early, they can detect changes that need to be addressed later on. A good first step is learning about the disease, its symptoms, treatment, and course. From there, they may want to become an active part of the support team that each person with PD should have from the time of diagnosis. Adult children can help schedule doctor’s appointments; attend them with their parent, navigate insurance and other financial concerns, and keep their parent moving and socially involved by engaging in sports and activities with them. This all depends on the parent’s willingness to have their children help out with some aspects of their lives.

In this episode, Social Worker Kelly Arney, MSSW, outreach coordinator for the Parkinson’s Foundation Center of Excellence at Vanderbilt University Medical Center in Nashville, has several good pieces of advice for different situations, including communicating with the parent about how much help they will accept without giving up their autonomy.

The news of a Parkinson’s diagnosis can be overwhelming. So many questions arise, including how it will change the person’s life, what lies ahead, and what to do first. Social workers can be a vital resource in helping a newly diagnosed person, care partner, and family navigate the road ahead, as well as provide ongoing support through the course of the disease. They are the health professionals who know and can coordinate many of the most helpful resources. Or as social worker Lance Wilson, LSW, C-SWHC, ASW-G, the education outreach coordinator for the Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorder Center in Philadelphia, a Parkinson’s Foundation Center of Excellence, puts it, social workers are the Yellow Pages for health care, tying people into the resources they need. He says social workers can help put people’s minds at ease by assessing their needs and lining up professionals who can provide medical, mental health, spiritual services, and more.

Medical problems often do not follow a schedule, and it can be frustrating to get them addressed when the next doctor appointment is weeks or months away. It’s important to have a plan about what to do for support between clinic appointments. A good first step is to discuss the issue with your health care team and to arrange to have a designated person or point of contact should such a situation arise. Heather Russell, RN, Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada, is that person for her clinic. In this episode, she describes how she helps her patients when they have a medical problem related to their Parkinson’s disease and their next scheduled clinic visit is some time away.

Ser trabajadora social en una clínica significa ser parte del equipo médico y brindar atención a las personas que viven con Parkinson y a sus familias.

En este episodio, hablamos con Adriana González, trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego. Como trabajadora social, Adriana ayuda a las familias y a los cuidadores a identificar recursos comunitarios y los apoya cuando enfrentan situaciones difíciles.

La meta de Adriana es conocer a las familias desde el inicio de la enfermedad para hablar acerca de los diferentes periodos y crear un plan antes de llegar a un momento de crisis.

Para Adriana, lo más importante es concientizar a la comunidad de habla hispana acerca de la enfermedad de Parkinson para mejorar el manejo médico de esta enfermedad y apoyar a más familias y cuidadores que están tratando de ayudar a su ser querido con Parkinson.

Como noviembre es el Mes Nacional de Cuidadores Familiares, hablamos con Adriana acerca de la importancia del autocuidado: un plan que garantiza que los cuidadores o aliados de cuidado estén atentos a su propio bienestar.

Caregiving can be an intensive endeavor, not to mention the physical, mental, emotional, and even financial aspects of it. Just as people with Parkinson’s disease need support services, so, too, do their care partners. In this episode, Social Worker Cara Iyengar, MSW, LISW, the coordinator of the Parkinson’s Foundation Center of Excellence at the University of Iowa in Iowa City, discusses some of the Foundation’s resources that she shares with care partners, her three-pronged approach to supporting them, some of the challenges she faces in bringing support services to people in a rural state like Iowa, and the kind of feedback that she has received from care partners.