People with Parkinson’s disease (PD) need their medications on time, every time. Getting them too soon or too late can cause problems. So when a person with PD enters the hospital, which happens 50 percent more often than their peers, the staff often needs to be educated on the importance of delivering medications at the right dose and at the right times - times that may differ from the usual times that medications are dispensed. When medication timing is off or doses are missed, there can be serious complications that are sometimes then treated with medications that make the situation even more dangerous. So the Parkinson’s Foundation has developed a kit, called Aware in Care, that patients can take with them to the hospital to specify the critical nature of getting medications on time, and the medications that should always be avoided. Annie Wallis, Associate Director of Education at the Foundation, and Leslie Peters, Vice Chair of the People with Parkinson’s Advisory Council for the Foundation, Aware in Care Ambassador, and a care partner for her husband with PD, talk about problems that can arise in the hospital, how to prepare for a hospitalization using the Aware in Care kit, and how the Aware in Care Ambassador program is dedicated to educating hospital staffs around the country to help make the kit most effective.

Standard practice in neurology uses imaging, such as magnetic resonance imaging, or MRI, of brain structures to make a diagnosis. But in Parkinson’s disease (PD), additional imaging technologies are needed since MRI is not particularly helpful to make the diagnosis. Recent studies have turned to brain imaging using new technological tools, looking for ways to better assess the disease, predict its progression, and evaluate potential drugs to treat it or slow its progression. Biomarkers  that can be seen in this type of brain imaging can be physical structures or biochemical signals, and researchers believe some correlate with the motor abilities of people with PD. Dr. Jon Stoessl of the University of British Columbia in Canada uses positron emission tomography, or PET scans, to research chemical biomarkers in the brain, such as dopamine, for these purposes.

More than ten million people around the world live with Parkinson’s disease (PD). The World Parkinson Coalition (WPC) is a nonprofit organization that provides an international forum on the disease and every three years holds the World Parkinson Congress. The 2019 congress will be in Kyoto, Japan in early June, bringing together people with PD, care givers, physicians, scientists, nurses, and rehabilitation therapists for a worldwide dialogue to improve and expedite advances in treatment practices. Through large forums and smaller sessions, attendees will share knowledge and ideas. Eli Pollard, VP of Education at the Parkinson’s Foundation and Executive Director of the WPC, says its goal is to bring these diverse constituencies together to engage in high level discussions of a wide range of aspects of Parkinson’s, including treatment, scientific advances, and care options. 

Parkinson’s disease affects people around the world, so societies in different countries manage it according to their own circumstances. Singapore, a modern, prosperous southeast Asian country, has a rapidly aging population, and thus, an increasing need to provide services to people with Parkinson’s, which occurs mainly in older individuals. Workers at the National Neuroscience Institute in Singapore, a Parkinson’s Foundation Center of Excellence, recognized that hospitals and nursing homes cannot handle the impending health care burden themselves and have therefore designed and implemented three community outreach programs to serve people with PD and to educate health care workers how best to serve this population. Dr. Louis Tan of the Department of Neurology describes these programs, how people respond to them, and alliances they have made with other organizations.

How medical education is structured affects doctors in training, and thus, how they practice later on. Their level of experience with different diseases and conditions determines how they will be able to diagnose and treat the people who come to them for help. Given the relatively limited time for medical school and advanced training in light of the vast variety of diseases, medical educators have to be selective about what they require trainees to experience.

A core curriculum gives medical students exposure to various medical specialties in their “rotations,” in which they spend several weeks at a time in one specialty area. Trainees have some leeway in what electives they wish to pursue beyond the core curriculum. As important as neurology is, often trainees are not required to take it, and some elect not to. Dr. Sagari Bette of the University of Miami Miller School of Medicine Parkinson’s Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, says it is important for medical students to get a good foundation in neurology and movement disorders early in order for them to best care for people with Parkinson’s disease and other movement disorders once they are in practice. She explains how medical education is done now and proposes how it could be improved in the future, including the use of educational videos.

Everyone should practice good oral health care, but it is particularly critical for people with Parkinson’s disease (PD). Unfortunately, at the time of diagnosis, many people do not receive information about oral health problems that may arise later in the disease. Parkinson’s symptoms can complicate oral care at home and dental professionals need to be aware of their patient’s PD so that they can provide appropriate care at frequent intervals. In this podcast, Cameron Jeter of the dental school at the University of Texas Health Science Center in Houston describes what she calls the “Dreaded D’s” – dry mouth, drooling, dysphagia or swallowing difficulties, and deadly bacteria. Beyond discomfort and inconvenience, these problems can affect a person’s quality of life and can even present a risk to their life, for example, through choking or inhaling bacteria that can lead to pneumonia. Dr. Jeter offers some helpful suggestions to maintain oral care and avoid problems.

Given the differences women may encounter when dealing with their Parkinson’s Disease (PD), the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Women and PD Teams to Advance Learning and Knowledge project (Women and PD TALK, for short) aims to develop new patient-centered recommendations to improve the health of women living with PD. Over the two-year term of the project, a national network of ten sites is engaging experts in the patient, research, and health care communities to identify women’s needs, prioritize solutions, and create the recommendations. Using these insights, the Parkinson’s Foundation and leadership teams will develop action plans to improve Parkinson’s care for women. In this podcast, Megan Feeney, a Senior Manager in the Community Engagement Department of the Parkinson’s Foundation, and Jessica Shurer, Clinical Social Worker and Center Coordinator of the Parkinson’s Foundation Center of Excellence at the University of North Carolina in Chapel Hill, discuss the reasons for the project, the personnel involved in it, how it will run, and its goals. While the project is just starting, it is already producing actionable insights.

If a person develops symptoms of tremor, slow movements, and stiffness, it could be early signs of Parkinson’s disease (PD) but it may also be the beginnings of any of a group of conditions known by the general term “parkinsonism,” conditions that have some symptoms in common with PD but differ in important ways. Also called atypical Parkinson’s disease or Parkinson’s plus, they tend to progress faster, and they may or may not respond to levodopa, and possibly only show modest benefit. While Parkinson’s disease represents 85-90% of all cases of parkinsonism, a definitive diagnosis for atypical parkinsonism may never be made while the person is alive. Licensed Clinical Social Worker Paula Wiener, a Senior Parkinson’s Information Specialist with the Parkinson’s Foundation, describes the difference between Parkinson’s disease and parkinsonism and gives some examples of Parkinson’s plus. As with PD, exercise is highly recommended for these atypical parkinsonian syndromes.

For a person newly diagnosed with Parkinson’s disease (PD), a second opinion from a movement disorders specialist can be a valuable endeavor. It may help to confirm the diagnosis, discover a different condition leading to the symptoms the person is experiencing, or address any lingering unanswered questions from the person’s encounter with the first physician especially if there was any discomfort with the interaction. In this podcast, Dr. Carlos Singer, Director of the Division of Parkinson’s Disease and Movement Disorders and the Director of the Parkinson’s Foundation Center of Excellence at the University of Miami Miller School of Medicine in Florida, describes the importance of getting a second opinion and his approach during the visit, which can be a good guide for what people should expect or ask when they see the second physician. He also talks about how different people come to terms with and accept their new diagnosis.

Most people with Parkinson’s disease have trouble getting a good night’s sleep due to an inability to fall asleep, stay asleep, or get back to sleep if awoken at night. Causes of this sleep discomfort may be a combination of symptoms of the disease, medications to control those symptoms, a poor sleep environment or bedtime habits, and changes in the brain that can affect mood, thinking, and the sleep-wake cycle. Fortunately, there are things that people and their health care providers can do to help mitigate the problems. Anne-Louise LaFontaine, Director of the McGill University Movement Disorders Clinic in Montreal, Canada, a Parkinson’s Foundation Center of Excellence, discusses the problems and offers solutions.