Substantial Matters: Life

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...

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...

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...

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...

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...

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,...

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...

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...

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...

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...

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...

Before therapies make it into clinical trials, they undergo a series of laboratory testing. These preclinical models of the disease may include animals, cell lines, or single cell organisms to help validate the success of a potential treatment. Additionally, preclinical models of Parkinson’s disease may help us to understand the mechanisms and the molecular or genetic pathways that control or interfere with normal and abnormal functions. Understanding the underlying disease processes is...

Developing medical treatments today for the most part depends on identifying a problem, whether it is physical, metabolic, behavioral or psychological and then targeting a treatment for that problem. Knowing what process causes a disease or symptom helps direct discovery of its potential treatments. In the case of Parkinson’s disease, modern techniques such as brain imaging, biochemical tests, and laboratory studies can reveal likely targets for designing new treatments. In this podcast,...

The prevalence of Parkinson’s disease and parkinsonism has been on the rise since the 1970’s, but a true estimate of how many people are affected had been difficult to ascertain because of how we collected the early data. It is important to know the prevalence of the disease in order to allocate health care resources, including health care professional training as well as money for research into the conditions of PD. The Parkinson’s Foundation has taken a leading role in determining the...

The mission of the Parkinson’s Foundation is to improve the lives of people with Parkinson’s disease (PD). Since each person’s experience with PD is unique, a wide range of factors must be evaluated to learn what the most effective treatments are, who can best benefit from each treatment or intervention, and how to help caregivers. Thus, the groundbreaking Parkinson’s Outcomes Project was begun in 2009. Through this study, the Parkinson’s Foundation’s Centers of Excellence track and monitor...

The Parkinson's Foundation is committed to working with health care professionals to improve the way care is delivered to families affected by Parkinson's disease. One way is through the Foundation’s signature program, Allied Team Training for Parkinson’s (ATTP), developed to increase knowledge of PD and build capacity for comprehensive interprofessional care in the treatment of Parkinson’s disease. Physicians, physician assistants, nurses, nurse practitioners, social workers, speech...

Parkinson’s disease is a complex condition, involving more than just movement. And to ensure the best outcomes and quality of life, people with PD should have a coordinated team of health professionals to help with their physical, social, and emotional needs. Since PD is a progressive disease, this array of health professionals can keep a constant eye on the changing condition and provide appropriate therapies as needs arise. Today, Lisa Mann, the nurse and education director for the Oregon...

Medical professionals have a lot to offer people in the early and middle stages of Parkinson’s disease. People with PD can visit their teams of doctors, nurses, social workers, and other health professionals on a regular basis in an office or clinic setting. A problem can arise, however, when determining how to best help people in the more advanced stages of the disease, when they develop more symptoms of greater severity and have limited mobility. Dr. Jori Fleisher of the Rush University...

As people with Parkinson’s disease experience a variety of symptoms and challenges beyond movement problems, a comprehensive, team approach can benefit them with matters such as blood pressure drops, urinary symptoms, sleep disturbances, sexual and intimacy matters, and other quality of life issues affecting them and their caregivers. However, due to the associated stigma or potential feelings of embarrassment, people with PD may not bring these matters up with their clinicians. In this...

Among the non-motor symptoms of Parkinson’s disease, cognitive and behavioral challenges also can be troubling and disabling. Medication, surgery, and other therapies can help alleviate motor symptoms, but the treatment of mental changes lags behind. Addressing cognitive, behavioral, emotional, and other neuropsychiatric issues may be daunting both for physicians and for the people with Parkinson’s whom they treat. Through a Parkinson’s Foundation grant, Dr. Jennifer Goldman has set up an...