Medical research is a long and complicated process. Discovering the underlying causes of Parkinson’s Disease (PD), finding new treatments, or searching for a cure involves laboratory work, animal testing, and clinical trials with control subjects and then people with Parkinson’s. One important way to facilitate that research is to involve people affected by PD. The Parkinson’s Advocates in Research program (PAIR) at the Parkinson’s Foundation trains people with PD and caregivers to become involved in the research process, advising researchers on the important topics and helping design successful clinical trials without being overly burdensome to people participating in the trials. In this podcast, Karlin Schroeder, Director of Community Engagement at the Parkinson’s Foundation, and Kevin Kwok, a Research Advocate in the PAIR program, describe the program, its aims, and how to get involved for anyone wishing to become an advocate.

Receiving a diagnosis of Parkinson’s disease, especially when it occurs at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. Soania Mathur, MD, CCFP, a family physician in Toronto, Canada, was diagnosed with young onset PD at age 27, just when she was starting her own medical career, as well as starting a family. She has developed some views on raising children when a parent or other family member has PD. In this second episode of our two-part Holiday Series: Families and Parkinson’s, she offers advice about how to talk to children about the disease, where to turn for resources, and even how having a parent, grandparent, or other relative with a chronic disease can have positive aspects for a child.

Parenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s disease, it can put added stresses on the family, both for the parents and the children. As parents’ abilities and roles change, children need to come to understand the disease, how it may change their routines, and the potential need to take on additional responsibilities. Today we kick off our first of two episodes in our Holiday Series: Families and Parkinson’s, as we interview Social worker Elaine Book of the Pacific Parkinson’s Research Center and the University of British Columbia Movement Disorders Clinic in Vancouver, BC, a Parkinson’s Foundation Center of Excellence. Elaine shares how she helps families cope with PD by discussing some of the new challenges and demands, what changes may occur in the family, and those things that remain the same. She says there may even be some benefits to the family members when they cope well that would not otherwise accrue under other circumstances.

The benefits of music therapy for Parkinson’s disease have been well established over the years. Rhythm and rhythmic cuing can help with initiation, coordination, and maintenance of movement. Benefits can extend to cognitive functions, communications abilities, and mood. As established professionals, some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s. Music therapist Dr. Concetta Tomaino, Executive Director and co-founder of the Institute for Music and Neurologic Function in Mount Vernon, New York, discusses who can benefit from music therapy, how it is done, what neuroscience research has found, and where to find information on music therapy. She expands on the multiple ways the therapy can alleviate some of the problems associated with Parkinson’s.

Palliative care is not often thought of in relation to Parkinson’s disease, but as people understand its relevance and benefits, more people with Parkinson’s are adding it to their usual care. Palliation means to ease the burden of the symptoms of a disease, whether that burden is physical, emotional, or spiritual, and that burden can extend beyond the person with the disease to caregivers. Benzi Kluger, MD, MS, director of the University of Colorado’s Neurology and Supportive Care clinics, says that palliative care should begin at the time of diagnosis. He describes the results of a new study on palliative care in Parkinson’s and how it benefited the study participants who received it and viewed it as ‘supportive care’, as well as how palliative care can be incorporated in the day to day routine of people with Parkinson’s.

Besides medication, people with Parkinson’s disease can benefit from many other forms of therapy, including physical, occupational, speech, music and art therapy. One form of therapy they may not be as aware of is dance/movement therapy (DMT). It is provided by certified dance/movement therapists and may be covered by insurance. DMT is based on the idea that changes in the body affect changes in the mind and vice versa. Evidence supports the assertion that the mind, body, and spirit function together and are inseparable. In this episode, Erica Hornthal, a dance therapist and president of Chicago Dance Therapy in Illinois, describes what DMT is, the training of DMT therapists, what goes on during a therapy session, and how people can find a therapist or program.

While Parkinson’s disease (PD) affects all races and ethnicities, not all communities recognize the disease equally. There is a perception in the African American community of PD as a disease attributed to older white men, and thus people may delay getting a diagnosis and help, leading to greater disability. These misperceptions may exist among healthcare professionals as well. Dr. Reversa Joseph, a movement disorders specialist and Adjunct Assistant Professor of Neurology at the Ohio State Wexner Medical Center, says one approach to this problem is outreach and education, particularly when it comes to recognizing early symptoms of the disease. She describes the perceptions in the community and her efforts to raise awareness of PD.

Parkinson’s disease (PD) is more than a movement disorder. While motor symptoms may be a prominent outward symptom of PD, mood and other emotional changes are also common- and not just for the person with PD. Their care partners may also experience such changes. Often, the best way to recognize these problems and figure out coping strategies may involve other health professionals in addition to a movement disorders physician, such as social workers or psychologists. Licensed Clinical Social Worker Jessica Shurer is the center coordinator of the Parkinson’s Foundation Center of Excellence at the University of North Carolina, Chapel Hill, where a team of health professionals is available to people with Parkinson’s. She discusses the emotional changes that may occur throughout the course of the disease along with suggestions for how people who are unable to travel to large medical centers may find help to address their emotional needs.

Mental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. They bring with them their whole being – their relationships, anxieties, social and personal experiences. Therefore distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account. In this podcast, Licensed Clinical Social Worker Kara Barton, a clinical instructor at the University of Southern California in Los Angeles, a Parkinson’s Foundation Center of Excellence, discusses how to recognize mental distress, ways to access care, the healthcare providers who can help, and possible ways of getting care when insurance does not cover it.

Depression is common in Parkinson’s disease (PD) and may manifest itself in different ways for each individual. While the core symptom is a negative mood, other symptoms may be variable and can include changes in sleep, appetite, energy, or pain. These symptoms may overlap with the PD itself, making it difficult for the person with PD or even healthcare providers to recognize the depression. In this podcast, movement disorders specialist, Irene Richard, a professor of neurology and psychiatry at the University of Rochester in New York, says the key to effective management is for people with PD, their loved ones, and their healthcare providers to recognize depression first and then treat it appropriately. Dr. Richard discusses how people with PD and their families should have an increased level of awareness of what depression may look like and feel confident about bringing it up with their healthcare team.