Substantial Matters: Life

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...

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...

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...

More and more people are exploring medical marijuana, also called cannabis, as a treatment option for various chronic health conditions, including Parkinson’s disease. Several states have legalized medical cannabis, but because federal drug laws have prevented scientific investigations on cannabis and its components for many years, much is still unknown about its use for medical purposes. Patients have questions about it, and physicians are still feeling their way through the landscape of...

There is no single, definitive test for Parkinson’s disease (PD). The diagnosis is made by an expert clinician who asks questions about a person’s health and medical history and observes their movement. But an enterprising high school student is working on a system that analyzes movements of facial muscles to make an early diagnosis and track Parkinson’s progression. Erin Smith of Shawnee Mission West High School in the Kansas City, Kansas, area adapted a real-time facial expression...

Despite great advances in genetics and molecular biology, many aspects of research on diseases affecting the brain, including Parkinson’s, still depend on actual human brain tissue for study. How do researchers get these brains for study? They need you to become a brain donor! It is important for people with neurological diseases to donate their brains after death, but healthy brains are also needed for comparison. Brain retrieval must occur very quickly to be useful, so advance planning...

People with Parkinson’s disease may experience sensory misperceptions (hallucinations or illusions) or false beliefs (delusions). These tend to occur more in the later stages of the disease, and they can be mild and non-threatening or severe. Dr. Martha Nance, director of the Parkinson’s Foundation Center of Excellence at the Struthers Parkinson’s Center in Minneapolis, explains the causes of these symptoms, gives examples of how people with Parkinson’s might experience them and discusses...

Hallucinations might not be something you associate with Parkinson’s disease (PD), but they are a possibility in PD and can be a big problem, especially as the disease progresses. Visual hallucinations are the most common, but auditory and other sensory hallucinations also may occur. At first, it may be easy to distinguish the hallucinations from reality, but over time they can become more distressing for the person with Parkinson’s and their family, as well as a challenge for medication...

Parkinson’s is a complex disease with many symptoms that affect multiple parts of the body. These symptoms can lead to common complications, such as falls and food going down the windpipe into the lungs, causing pneumonia. At the same time, people with Parkinson’s disease (PD) are at risk for conditions that occur in the general population, especially as we age, including heart disease and cancer. Some conditions (i.e., diabetes) even seem to be associated with a higher risk of...

The Edmond J. Safra National Parkinson’s Wellness Initiative aims to build community hubs for people with Parkinson’s – outside the medical setting – to create more opportunities for exercise, connect people to support and educational resources and provide motivation to get out and be active. Founded ten years ago in New York and now expanded to Boston, Chicago, Tampa, FL, and Washington, DC, the initiative is a partnership between Parkinson’s Foundation Centers of Excellence and Jewish...

Exercise is an important part of healthy living for everyone, but for people with Parkinson’s disease it is more than healthy – exercise is medicine. Countless research studies have shown that exercise has benefits for both the body and the brain. But many people have questions about it – what to do, how to find the right programs, how to stay motivated, and even just what qualifies as a good form of exercise. These are some of the questions that come in to the Parkinson’s Foundation and...

People with Parkinson’s disease (PD) are two times as likely to fall as other people their age. And while healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them. Dr. Sotirios Parashos, Director of Research at the Struthers Parkinson's Center in Golden Valley, Minnesota, a Parkinson’s Foundation Center of Excellence, explains that preventing falls involves a team of professionals, including...

Stem cells – those cells that can give rise to so many cell types in the body – have been touted as the cure-all for a variety of diseases, including Parkinson’s. But to date, attempts at stem cell transplantation into the brain have fallen short. Parkinson’s is one of the most complex diseases, with a variety of motor and non-motor symptoms and an impact on many systems of the body. Just inducing a cell to make dopamine is not the whole answer. But stem cells are still useful for drug...

Alpha-synuclein is a protein in the human brain that is linked with the development of Parkinson’s disease. An important scientific paper came out in September 2017 describing how some common drugs, already approved by the Food and Drug Administration for other purposes, may lower the production of alpha-synuclein – and potentially protect against Parkinson’s. Dr. David K. Simon, Director of the Parkinson's Disease and Movement Disorders Center at Beth Israel Deaconess Medical Center in...

Clinical trials – research studies that involve people – are key to medical advances. But sometimes it is hard to recruit and enroll enough participants to make the results meaningful. It is important for people with Parkinson’s disease to participate in clinical trials to help researchers find better ways to treat, and hopefully slow down or even stop, Parkinson’s. Some trials are short, lasting only a few weeks, while some can take years, but all trials aim to produce results that will...

Therapies are available to treat Parkinson’s symptoms and improve quality of life for people living with the disease. But we don’t yet have a way to slow or stop Parkinson’s progression, and that is why research is critical. Dr. Tanya Simuni of the Parkinson’s Foundation Center of Excellence at Northwestern University Feinberg School of Medicine says this is an exciting time for the development of Parkinson’s therapeutics. She explains the clinical trials process and describes some ongoing...