On August 11, 2014 actor and comedic genius Robin Williams passed away. Williams not only amplified awareness of the life-changing, prevalent disease known as Lewy Body Dementia, but his passing brought much-needed attention to the importance of mental health and the non-movement symptoms of depression and anxiety that often accompany a neurodegenerative disease.

A decade after his passing, what do we know about Lewy Body Dementia? How can we help people with a neurological disease experiencing suicidal thoughts?  

What is Lewy Body Dementia? 

Lewy Body Dementia (LBD), also known as Dementia with Lewy Bodies, is a progressive brain disorder that is diagnosed when cognitive decline is an early symptom. It can also be diagnosed when cognitive decline and motor symptoms begin and develop together. 

“Lewy Body Dementia is a common type of dementia — it is the second most common neurodegenerative dementia behind Alzheimer’s,” said Jennifer G. Goldman, MD, MS, section chief of Parkinson’s Disease and Movement Disorders at Shirley Ryan AbilityLab and a Professor in Physical Medicine and Rehabilitation and Neurology at Northwestern University Feinberg School of Medicine, a Parkinson’s Foundation Center of Excellence. “It is thought to affect 1.4 million people in the U.S. but is not widely recognized. With greater education and awareness, with Lewy Body Dementia including both Dementia with Lewy Body and Parkinson’s disease (PD) dementia, we can start to change that landscape.”

What is the difference between Lewy Body Dementia and Parkinson’s disease dementia?

Lewy Body Dementia is a term used for both Parkinson’s disease dementia and Lewy Body Dementia. They have some things in common, but their progression and treatment are different. 

While many people with Parkinson’s can experience cognitive changes, it is important to know that not everyone with Parkinson’s will develop dementia. “When we see more severe cognitive changes, particularly when they affect someone’s function or ability to act independently for activities of daily living, their work or hobbies, we think of that as being a form of dementia,” said Dr. Goldman.

“With Parkinson’s dementia, the motor symptoms precede the dementia. In dementia with Lewy Body the initial core symptom is dementia — cognitive changes are early, and motor features, if present, occur either after the onset of dementia or concurrently,” said Dr. Goldman. 

Fight For a Diagnosis

Before Robin Williams was diagnosed with Lewy Body Dementia, it was reported that he had been experiencing paranoia, confusion, insomnia, constipation and lacking the ability to smell. For many, the wide range of early symptoms — not all related to brain function — makes Lewy Body Dementia difficult to diagnose. 

Dr. Goldman urges patients to fight to find their diagnosis. “Continue to seek the answers and seek out a specialist to help identify the cause of the cognitive issues or type of dementia,” said Dr. Goldman. “The right doctor can change one’s management, prognosis, and eligibility for participating in research studies. It’s important to have the best understanding of the disease for the chance to have the best outcomes.”

Depression and Suicide

People with neurological conditions, like Parkinson’s, are at higher risk for suicide, according to a study published in in the Journal of the American Medical Association in February 2020. Depression can be a common symptom for both PD and LBD. 

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach that includes a mental health professional. With a team in place, should depression or suicidal thoughts occur, you have an established relationship with a professional you trust. However, it is never too late to add a mental health professional to your care team. 

If you or your loved one is having thoughts of suicide:

• Find the resource that works for you: 24-hour suicide prevention hotlines can help, such as the National Suicide Prevention Lifeline at 1-800-273-8255.
• Seek professional help: Find a psychologist, therapist, counselor, or social worker you can trust and lean on. 
• Stay engaged: It can be easy for people with Parkinson’s to distance themselves. Try to connect with family and friends, schedule regular phone calls and seek out a support group or wellness class. 
• Build your support crew: call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) for help finding a local or online support group. 

If you are a care partner or family member, learn about suicide warning signs and how you can help here.  

Ongoing Hope

There are treatment options for Lewy Body Dementia and Parkinson’s disease dementia. Healthcare teams are finding that the most effective approach is a combination of medication, physical and mental exercises, and incorporating a mental health professional as part of a care team. 

“There is quite a bit of research going on in Lewy Body Dementia,” said Dr. Goldman. “Researchers are trying to understand why it occurs, and whether there are differences between Parkinson’s disease dementia and Lewy Body despite the fact that they share many clinical symptoms and pathology. Ongoing research ranges from trying to predict or detect early changes in people who might go on to develop Lewy Body Dementia all the way to studying different treatments — from medications to newer trials starting to look at the roles of mental and physical exercises.”

More Resources

The Parkinson’s Foundation believes in empowering the Parkinson’s disease community through education. Learn more: 

• Podcast Episode 87: What is Lewy Body Dementia and How Does it Relate to Parkinson’s?
• Lewy Body Dementia Association
• Dementia with Lewy Bodies
• Caregiver Corner: Lewy What? Explaining Lewy Body Dementia
• Suicide and Parkinson’s

Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) for more information about any of these topics and Parkinson’s. 

Through its national study, PD GENEration: Mapping the Future of Parkinson’s Disease, the Parkinson’s Foundation is giving people with Parkinson’s disease (PD) insights into their PD and opportunities to take action, while accelerating PD treatments. Genetic counseling, offered in English and Spanish, is a critical and unique part of this study.

Licensed, board-certified genetic counselors Jeanine Schulze, MS, CGC, and Jennifer Verbrugge, MS, CGC, are with the Department of Medical and Molecular Genetics at the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence. Both have taken part in several PD genetic testing research initiatives, including PD GENEration.

Their collaboration answers the following questions that highlight the importance of screening for biological Parkinson’s factors in those who live with PD and how genetic counseling is critical to navigating genetic test results.

Q: Why is genetic testing important for people with Parkinson’s?

A: People with Parkinson’s may seek genetic testing for several reasons. Some people want a better understanding of why they developed Parkinson’s, or to learn more about their individual disease. Others are concerned about the risk to their family.

Genetic testing can identify if a change in a gene, or what we call a variant, contributed to Parkinson’s disease. If a genetic variant is identified it can give us information about inheritance in the family, if other family members might be at risk of Parkinson’s and what that level of risk may be. In some cases, genetic test results might give us information about potential symptoms, treatment or future progression.

Identifying a genetic variant in a person with Parkinson’s can also open the door to research studies such as clinical trials. People with Parkinson’s who carry genetic variants can play a critical role in helping researchers learn more about what causes Parkinson’s, and how we might be able to treat it. There are different types of research studies looking for people with specific genetic variants; some are evaluating new treatments while others are following people over time to learn more about how genetic variants impact Parkinson’s symptoms and progression.

Q: What does a genetic counselor do?

A: Genetic counselors empower people with Parkinson’s and their families with information, guidance and emotional support. Counselors help them understand biological history, evaluate genetic testing options and make informed choices based on test results.

Q: How is PD GENEration setting the bar for Parkinson’s-specific genetic reporting and counseling?

A: The study puts participants at its center, helping them understand their genetic test results and encourage them to partner in future PD research. PD GENEration provides genetic counseling to every participant. The high-level, comprehensive genetic test is designed to cover all seven of the major PD gene variants, including those important for clinical trials and other research participation.

Q: How is genetic counseling through PD GENEration unique?

A: This study enables access to genetic testing and counseling to people with PD across the U.S. at no cost. The new virtual option gives access to people who previously might have been too far from a study site or unable to travel. Participants can have their questions answered by genetic counselors who are highly specialized in Parkinson’s disease and PD genetics. Counseling is offered in Spanish and English.

Q: What should people know about at-home genetic tests?

A: There are many kinds of at-home genetic tests available. Some of these, called direct-to-consumer genetic tests, are performed without the involvement of a physician or a health care provider. These tests do not fall under the same guidelines as those ordered through a clinician, and often provide limited or incomplete information.

The PD GENEration at-home genetic testing is ordered through a PD GENEration healthcare provider. Staff mail a collection kit, and coordinators help explain how to collect the genetic sample during the video visit. The sample is mailed to the clinically-certified laboratory running the PD GENEration genetic testing panel. This test was carefully designed and results are carefully analyzed. Each participant’s genetic information is protected by the research study and the lab doing testing. Results are reported to participants by a genetic counselor or clinician who can answer questions and discuss any complexities.

Q: What should a person with PD expect when meeting with a genetic counselor?

A: A genetic counseling appointment may consist of a face-to-face, telephone or video discussion with a genetic counselor. Sessions may last anywhere from 20 to 60 minutes, but the length of the time depends on the type of visit, number of questions and complexity of testing or testing results.

During a genetic counseling session, a counselor may discuss how genetics plays a role in Parkinson’s disease, gather family history and explain how genetic factors and/or test results may impact family members.

To learn more about in-person or at-home PD GENEration participation, visit Parkinson.org/PDGENEration or call the Parkinson's Foundation Helpline 1-800-4PD-INFO.

We are 100+ years since the publication of James Parkinson’s essay the Shaking Palsy describing his eponymous disease. Yet, aside from a small number of individuals who have clear genetic causes to their disease, we still do not know the reason why the majority of people develop Parkinson’s disease (PD).

Based upon current research, scientists believe that Parkinson’s is most likely caused by a combination of genetic and environmental factors. The interactions between genes and the environment can be quite complex. Some environmental exposures may lower the risk of PD, while others may increase it. Learn more in our article, Pesticides and Parkinson’s: Time to Strengthen Epidemiology.

Specifically, as researchers, we need to better understand the predisposition to develop Parkinson’s based on a person’s genetics and environmental factors. One thing science has shown is that the exposure of certain chemicals in pesticides can lead to people having an increased risk developing Parkinson’s. However, it is important to note, that even when a pesticide is linked to Parkinson’s, not every person exposed to certain chemicals in pesticides will go on to develop this life-changing disease.

We understand there is a strong link to between Parkinson’s disease and pesticide and herbicide exposure and it is our responsibility as a leader in the Parkinson’s space to better understand what causes PD and to work to prevent it and help eliminate the risk of developing the disease.  Limiting exposure to chemicals known to cause PD is one way to reduce one’s overall risk of developing the disease.

What should people with Parkinson’s know about Paraquat?

Paraquat is an herbicide that has been linked to Parkinson’s. It is a widely used commercial herbicide in the U.S. that is banned in 32 countries, including the European Union and China. In fact, paraquat along with another pesticide, rotenone, is routinely used in research as one of the ways to induce and study parkinsonism in animal models of PD.

The Parkinson’s Foundation, along with the Unified Parkinson’s Advocacy Council, signed two letters to the U.S. Environmental Protection Agency (EPA) encouraging them to cancel the registration of paraquat based on strong scientific research linking the herbicide to Parkinson’s disease.

In October 2020, the EPA re-approved paraquat for use in the U.S. Without additional action, paraquat will remain legal for sale and use in the U.S. for the next 15 years.

What should I know about Paraquat legal cases?

Currently, there are more than 300 lawsuits filed against Paraquat across the U.S. Due to the multitude of cases, a multidistrict litigation (commonly known as MDL) was passed to help accelerate the legal proceedings.

Talk to a lawyer — specifically a product liability attorney — if you are considering filing a lawsuit. For help locating an attorney contact your local Area Agency on Aging. The Parkinson’s Foundation is not directly involved with Paraquat lawsuits.

What’s Next?

We still need to understand the cause of PD for the majority of people living with Parkinson’s today.  The Parkinson’s Foundation is committed to fund the basic science research needed to reveal what might be the cause of PD, how does it progress, and how we can ultimately stop it.

The interactions between genes and the environment are intricate. The Parkinson’s Foundation is actively working to better understand the genetics underlying PD as well as prepare the community for the next generation of therapies through our PD GENEration: Mapping the Future of Parkinson’s study.

The three main goals of PD GENEration are to accelerate clinical trials for Parkinson’s, improve PD care and research, and empower people with Parkinson’s and their care team. By undergoing genetic testing and contributing their genetic data, people can better understand their disease and help scientists in their journey to advance understanding of it.

As part of our research strategy, we work to connect and understand the biology behind Parkinson’s — including genetics — neuroscience and all Parkinson’s symptoms. Evolving our understanding in these three areas will lead us to better Parkinson’s treatments and hopefully, a cure.

More Parkinson’s Foundation Resources:

• Environmental Factors
• Genetics and Parkinson’s

James Beck, PhD is the Senior Vice President and Chief Scientific Officer of the Parkinson's Foundation. Jim guides the Foundation’s research strategy and critical grants that support research centers, scientists and fellows.

The human body naturally produces antioxidants. These antioxidants have been shown to destroy excess free radicals (oxidative stress) which, in turn, helps protect brain cells (neurons) from their toxic effects, such as inflammation, DNA damage and cell tissue damage. Studies have also shown that long-term oxidative stress contributes to the development of many diseases such as diabetes, cancer and Parkinson’s disease (PD).

In the brains of people with PD, there’s a build-up of a protein called PARIS (Parkin Interacting Substrate), that inhibits the production of another protein called PGC-1α. One of the many important functions of PGC-1α in dopamine-producing cells is to fight off damaging oxidative stress – so that there’s plenty of healthy dopamine remaining to do its job. 

This begged the question: might there be an antioxidant that could block the PARIS accumulation – that leads to the PGC-1α not being able to protect the dopamine-producing cells?

A just-published study in the journal, Science Translational Medicine, titled “PARIS farnesylation prevents neurodegeneration in models of Parkinson's disease,” (Jo et al., 2021) screened over 230,000 compounds, and identified farnesol as a possible candidate. Farnesol is a natural compound found in berries (as well as other fruits and herbs) that has demonstrated impressive antioxidant capabilities. 

To accomplish this complex study, scientists created mice models with different genetic make-ups. For example, some of the mice models did not have the parkin protein, while others had an overproduction of PARIS, among others. The mice were then randomly selected to be fed either a farnesol-supplemented diet for one week, or a regular mouse diet. 

The following week, the mice were injected with alpha-synuclein, (a key protein involved in PD). Behavioral and chemical tests were conducted, in addition to robust statistical analyses. Next, multiple experiments were carried out on the mice brain tissue, such as measuring the concentration of farnesol in the mouse brain. The scientists also measured the levels of dopamine, PARIS and PGC-1α proteins in the mice brain tissue.

Results

• PD mice models fed the farnesol-supplemented diet demonstrated improvements in strength and coordination tests designed to measure the progression of PD symptoms. 
• PD mice models fed the farnesol-supplemented diet had twice as many healthy dopamine neurons than mice not fed the farnesol-enriched diet.
• PD mice models fed the farnesol-supplemented diet had approximately 55% more of the protective protein PGC-1alpha in their brains than the untreated mice.

What does this mean?

This study demonstrated that in mice models of Parkinson’s, eating farnesol not only prevented the loss of dopamine-producing neurons, it reversed behavioral deficits in mice, showing an improvement in strength and coordination. Thus, the process of the farnesol binding to the PARIS protein worked: PARIS was successfully deactivated and could no longer interfere with PGC-1α doing its job to protect dopamine-producing neurons. 

Of note, since this study was conducted in mice, it is not known if farnesol will act the same way in people. It is far too soon in this investigative process to know, but these findings are encouraging and warrant further study. 

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and antioxidants by vising the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.

• Nutrition and PD
• Diet and Nutrition 
• Parkinson’s: Causes

For more than a decade, the Parkinson’s Outcomes Project has captured the experiences of people with Parkinson’s disease (PD) and care partners on topics such as medications, treatment, exercise and lifestyle. How has this essential data helped make life better for people with Parkinson’s?

When researchers analyze the experiences of more than 13,000 people living with PD who seek treatment within the Parkinson’s Foundation global Centers of Excellence network, they can identify new and better ways to provide care and manage Parkinson’s. The goal of this study is to improve health outcomes and quality of life for people with Parkinson’s and care partners.

Parkinson’s Outcomes Project research has led to several findings that have already improved care within the PD community. Four primary landmark findings include:  

Exercise and Physical Therapy

Increasing physical activity to at least 2.5 hours a week can slow the decline in quality of life and help people with Parkinson’s live fuller lives. At the same time, referrals to physical therapy during the early stage of disease can help prevent hospitalization and falls. These findings led to the establishment of the Exercise Initiative, partnering with physical therapists and exercise professionals nationally.

Mental Health 

Depression and anxiety are the top factors impacting the overall health of people with Parkinson’s. This understanding has led to greater supports across Parkinson’s Foundation Centers of Excellence as well as a dedicated sub-study looking at mental health.

Hospital Care

People with Parkinson’s are hospitalized 1.5 times more often than their peers without Parkinson’s, and these visits bring with them a host of complications. These findings resulted in the Foundation’s Hospitalization Initiative to drive culture and policy change at the hospital administration level. Learn more about the Parkinson’s Foundation hospitalization kit now.

Caregiving

The cost of caregiving increases 180% from early to advanced stages of Parkinson’s, with female care partners predominantly (72%) carrying the weight of care. Acknowledging these factors and how to best provide day-to-day care will help improve the quality of life for those with Parkinson’s and their care partners.

The Next Generation of Parkinson’s Research

The impact of the Parkinson’s Outcomes Project continues to direct the work of the Parkinson’s Foundation. Next, the study will next focus on recruiting more participants who are part of traditionally underrepresented populations in clinical research. The study will work to better understand the PD experiences of people with Young-Onset Parkinson’s, newly diagnosed, early and late-stage disease progression and broader ethnic and racial diversity.  

The Foundation is underway with the next phase of the study, genetic testing offered through PD GENEration: Mapping the Future of Parkinson’s Disease. Genetic testing is a powerful tool that can help people learn more about their own disease, uncover biological pathways that cause Parkinson’s and can accelerate the development of improved treatments and care for all people with Parkinson’s. 

“Together, the Parkinson’s Outcomes Project and PD GENEration will help researchers understand why and how Parkinson’s develops,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer. “These initiatives may also answer questions that researchers may never have asked, providing hope and a vision towards a cure for PD.”

For the full update from the field, read Parkinson’s Outcome Project: Improving the lives of people living with Parkinson’s through research. In this publication, we highlight landmark findings, how this research guides Foundation priorities, what’s next for the study and more. Read it now. 

Download the PDF

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Outcomes.

Every ethnic group across the globe is impacted by Parkinson’s disease (PD). However, most of the PD genetic information that is studied by scientists has primarily been collected from people of European and East Asian ancestry. In fact, as of 2018, only 1.3% of study participants in the genome-wide association study (GWAS) Catalog data are Latino. With Parkinson’s on the rise on a global scale, the importance of increasing the genetic diversity of research participants is of utmost importance.

A recently published study in the Annals of Neurology, titled “Characterizing the Genetic Architecture of Parkinson's Disease in Latinos” (Loesch et al., 2021) sought to address this lack of diversity in PD genetic research.

The senior author of this study, Ignacio Mata, PhD, is from the Cleveland Clinic Lerner College of Medicine, a Parkinson’s Foundation Center of Excellence. Dr. Mata serves as an advisor to the Parkinson’s Foundation’s Hispanic and Latino efforts and is a Stanley Fahn Junior Faculty Award recipient.

Dr. Mata and colleagues performed the first-ever genome-wide association study (GWAS) of Latinos with PD in South America. GWAS is an approach used to identify associations between genetic variants and risk for particular diseases.

“There are many reasons this study gives me hope for Parkinson’s research. We want to make sure the progress we are achieving in understanding the role of genetics in PD is applicable to all individuals, and right now that is not possible because of our Euro-centric research, however, this research is making a little dent on that front for the Latino community.”

- Dr. Mata

Dr. Mata’s team utilized the data from the Latin American Research Consortium on the Genetics of Parkinson’s Disease (LARGE-PD) — the world’s largest PD case-control group of Latinos. They then scanned for 8.7 million DNA variants using a genotyping array (a test that checks for changes in specific areas of a person’s chromosomes). After a careful quality control process, the genetics of 1,497 people (807 participants with and 690 without PD) from Uruguay, Brazil, Colombia, Peru, and Chile were included.

The participants with PD consisted of 53% men, with an average age of 61.7 years, and an average age of PD onset of 54.1 years. The group without PD consisted of 33% men with an average age of 56.5 years. Participant numbers are reflective of the fact that Parkinson’s affects more men than women.

Additionally, as the gold standard of GWAS studies requires independent evidence that genetic study findings are reliable, a group of 1,234 Latinos with self-reported PD and 439,522 people without PD were tested for genetic variants by the consumer genetics and ancestry company, 23andMe. Researchers also utilized genetic admixture (when people from genetically distinguishable groups have children together) analyses, which uses DNA to help determine ancestry. In this case, Latino populations tend to have a three-way DNA admixture of African, European, and Native American ancestry.

Results

• The role of the SNCA gene (a common Parkinson’s gene mutation) in the development of PD in the Latino population is substantial. In both the LARGE-PD group and the replication group of 23andMe, only the Synuclein Alpha (SNCA gene) was found to have genome-wide significance in the GWAS.
  • Of note, the SNCA gene, which produces the protein alpha-synuclein, is associated with familial PD, and has been previously linked to PD in people of European and East Asian descent.
• Variants near the NRROS gene approached genome-wide significance but were not replicated in 23andMe.
  • NRROS findings were prominent in Peruvians of primarily Amerindian ancestry.
  • NRROS is biologically possible as a potential PD risk gene, as NRROS knockout mice display neurological abnormalities including defects in motor functions.
• In the admixture analyses, there was evidence that having African ancestry was protective against PD risk, which appeared to be associated with the RPS6KA2 gene.

What Does It Mean?

Genetics cause between 10% to 15% of all Parkinson’s disease. In some families, genetic changes (or mutations) are inherited or are passed down from generation to generation. Scientists have identified certain groups of genes that are known to be associated with family-linked Parkinson’s, including the genes SNCA, PRKN and DJ-1. Genetic research has made great strides to help scientists better understand the biology of Parkinson's and guide the development of treatments for all people with PD.

This study is groundbreaking: this is the most comprehensive examination of PD genetics throughout South America increasing the diversity in PD genome-wide association (GWAS) data in PD.

Of note in the study findings, the SNCA gene, which produces alpha-synuclein, was found to be clinically significant in the Latino population. This confirms that there is substantial overlap in the genetics of PD in Latinos as comparable to those of European-ancestry and warrants further study.

The NRROS gene, which is known for being associated with problems in motor functions and is critical for the development of microglia (immune cells of the brain responsible for maintenance of brain tissue) is another key finding, despite it not being replicated in 23andMe. The difference in findings may be because of the higher proportion of Native American ancestry present in the LARGE-PD group compared with the 23andMe group (47% vs. 19%), thus replication in another independent group with high Native American ancestry is needed.

Additionally, the authors found several other regions of potential significance that could not be confirmed with certainty because of the limited number of participants in this study. In short, this is an excellent first step towards proactively addressing the lack of diversity in Parkinson’s disease genetic research. Additional studies with even larger number of Latino participants are needed to reliably uncover additional genetic causes. Diversity in research studies is essential for optimizing our understanding of PD and potential future treatments.

“Our results show that there is some overlap in the genetic architecture of PD between populations, although the variants involved may be slightly different,” said Dr. Mata. “However, we need larger cohorts to really identify those population-specific components. We are working on more than doubling LARGE-PD in the next two years to help with this effort.”

The Parkinson’s Foundation believes in diversifying research, which is why its PD GENEration: Mapping the Future of Parkinson’s Disease is conducted in English and Spanish. Help further Parkinson’s research by enrolling today in English or Spanish.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about genetics and Parkinson’s by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

Spanish Resources: Genetics and Parkinson’s

• PD GENEration: Trazando el futuro de la enfermedad de Parkinson
• Episodio 6: La representación hispana en la comunidad del Parkinson
• Participando en la investigación

Every year, the top neurologists, researchers and experts around the world join together to discuss the latest research and treatments in the Parkinson’s disease (PD) field at the MDS Virtual Congress 2021 hosted by the International Parkinson and Movement Disorders Society. This year, the Parkinson’s Foundation presented six key findings in research, care and education at the international congress.

During the congress, which took place virtually from September 17 to 22, the Foundation’s PD GENEration: Mapping the Future of Parkinson’s study received the special honor of “Top Abstract” and was invited to attend a live panel discussion during the congress.

Below are the six research, care and education findings the Parkinson’s Foundation presented:

Providing Genetic Testing and Genetic Counseling to the Parkinson’s Disease Community: The PD GENEration Pilot Study Experience

Genetic testing for Parkinson’s is not routinely offered as part of standard care, however it can empower people with PD and their care team to improve care. Importantly, better understanding genetics can lead to PD breakthroughs and better treatments. Selected as a “Top Abstract,” this pilot study sought to determine if offering genetic testing and counseling through the PD GENEration study to people with PD is feasible in the U.S.

Click here to see poster

The study found that:

• Regardless of whether genetic counseling was provided by a clinician or a certified genetic counselor, study participants were highly satisfied with receiving genetic testing and counseling.
• Satisfaction rates were equally high among people with and without genetic markers of PD.
• There is strong interest within the PD community to receive genetic testing, supporting the expansion of PD GENEration to increase enrollment.

Authors: L. Cook, J. Verbrugge, J. Schulze, T. Schwantes, A. Chan, J.C. Beck, A. Naito, A. Hall, K. Marder, M. Nance, M. Schwarzschild, T. Simuni, M. Wills, R.N. Alcalay

Implementing Systematic Screening and a Treatment Algorithm for Depression in Parkinson’s Disease

Depression is a common symptom of PD that often goes untreated. This study aims to boost quality of life for those living with Parkinson’s and depression by finding a way to address the unmet need of updating clinical practices to improve care and screen for depression. Current practices among neurologists who treat people with PD do not typically involve treatment for depression. This two-year study aims to determine the feasibility of incorporating depression screening for neurologists at five Parkinson’s Foundation Centers of Excellence.

Click here to see poster

Authors: C. Marras, A. Naito, J. Beck, R. DeLeon; M. Neault, A. Allen, E. Nelson, S. Luo, S. Mantri, D. Weintraub

A New Phase of the Parkinson’s Outcomes Project Registry Study

The Parkinson’s Outcomes Project, a study tracking and monitoring the care of people with PD over time at select Parkinson’s Foundation Centers of Excellence across four countries, marked a new phase in 2021. The study sought to include participants who increase the diversity of both study population demographics and the diversity in the PD clinical stages.

The study will newly collect data from:

• Underserved and underrepresented racial groups
• People with Young-Onset Parkinson’s disease (YPOD)
• People diagnosed before the age of 50
• Early and late-stage PD
• People who have lived with PD for more than 10 years

The study also aims to provide genetic testing to all participants to better understand the causes of PD. Overall, these efforts will help address crucial gaps in PD research and will lead to improvements in care.

Click here to see poster

Authors: A. Naito, M. Neault, R. DeLeon, J. Beck, A. Ramirez-Zamora, N. Dahodwala, M. Rafferty, S. Luo, T. Davis, C. Marras

A Pandemic Care Partner Summit: Online Program Helps Parkinson's Care Partners Take Positive Actions

The Parkinson’s Foundation Care Partner Summit | Cumbre Para Cuidadores was held virtually in 2020 in the height of the COVID-19 pandemic. After the event, registrants completed a survey where they were asked what positive actions they took since watching the summit, and which of their loved one’s PD symptoms has been most challenging for them as a care partner.

Click here to see poster

The study found that:

• 94% reported at least one positive action, 79% reported at least two, and 53% reported at least three.
• 67% reported talking to the PD doctor about cognition or mental health
• 57% reported practicing more patience and compassion with their loved one
• 53% reported scheduling time for self-care
• When asked about the most challenging symptom for the care partner, 17% reported cognitive changes, while 16% reported speech and swallowing problems. At 14%, the third most challenging is mental health — a grouping of apathy, anxiety and depression.

Authors: Dianne Perret, Courtney Malburg, Annie Wallis

Pathway to Parkinson's Exercise Education Accreditation Competencies for Exercise Professionals and Exercise Education Programs

Despite the important role played by exercise professionals, there are no unified guidelines or procedures in place to ensure competence of exercise professionals working with people with Parkinson’s. This makes it difficult for people with Parkinson’s and healthcare providers to evaluate the safety and effectiveness of programs and instructors.

Click here to see poster

Key takeaways include:

• Our objective was to develop criteria for Parkinson’s exercise educational programs by adhering to new standards of Parkinson’s exercise education.
• The competencies are being used to develop a pilot accreditation program to help reduce unwanted variation in Parkinson’s exercise education.
• This pilot project aims to determine the feasibility of a Parkinson’s Foundation accreditation for Parkinson’s exercise education programs.
• Ultimately, the aim is to create a standard for exercise professionals to competently work with people with PD and ultimately improving the quality of life for those living with PD.

Authors: Miriam Rafferty, Lisa Hoffman, Terry Ellis, Todd Galati, Adrian Hutber, Francis Neuric, Megan Feeney

Care Partners in Parkinson’s: Who calls the Parkinson’s Foundation Helpline and Why?

In this poster, the Parkinson's Foundation Helpline highlights the top reasons care partners contact the Helpline. The study assesses gender differences in the reason for calling or emailing and the time since diagnosis, for a five year period between 2016 to 2021.

Click here to see poster

Key findings include:

• Of the 14,186 first-time Helpline callers and emailers, 48% were a spouse/partner and 33% were an adult child. This study focuses on spouses/partners.
• People call the Helpline for many different reasons, and there were no major differences in spouse/partner reasons for contacting the Helpline or for the type of referrals.
• Nearly 82% of spouse/partner Helpline inquiries were regarding men with Parkinson's, despite men accounting for 60% of Parkinson's cases.
• Spouses/partners of women with PD are mostly male, and they are contacting the Helpline less compared to female care partners.
• Because male spouses/partners are contacting the Helpline less often than female, this study suggests a need for increased outreach toward male spouses/partners to help male care partners gain information and resources to support their caregiving. This would have a positive impact on the well-being of women with PD.

Authors: Anna Hedges, Sharon Metz, Linda Pituch, Jill McClure, Dianett Ojeda, Colleen McKee, Amanda Janicke, Tracie Via, Megan Feeney, Adolfo Diaz

Stay up to date with the latest Parkinson’s Foundation programs, research and happenings in our Parkinson’s Today blog.

As a neuroscience professor, Kathy Steece-Collier, PhD, bridges the gap between basic research and treatment. For more than three-decades, her focus on Parkinson’s disease has brought a better understanding of the disease and increased hope for improved treatment. Yet before choosing a path in neuroscience, Dr. Steece-Collier considered a career in special education. It was only after a conversation with Professor Stephen Binkley —  a Nobel Prize winning scientist — that her educational path shifted, leading her to a groundbreaking career in research.

“I found my translational science niche and I became interested in pursuing continuing treatments for people with Parkinson's disease,” said Dr. Steece-Collier.     

Now, as a principal investigator and professor at Michigan State University’s College of Human Medicine, Steece-Collier focuses on the development of improved therapeutics for people with Parkinson’s disease (PD). Her research places particular emphasis on understanding how the brain reacts and remodels itself in response to neurodegeneration (loss of brain cells) and therapeutic interventions.

Half-a-century ago it was recognized that dopaminergic drugs, specifically levodopa, could alleviate many Parkinson’s symptoms. However, over time, complications arose with their continued use — including the development of unpredictable motor responses and involuntary movements known as levodopa-induced dyskinesia. Much research has been implemented over the years in a search to provide relief for this side-effect of PD therapy that involves involuntary and erratic movements, which can occur in the face, arms, legs and/or trunk.

The primary focus of Dr. Steece-Collier’s lab is aimed at understanding dyskinesia side-effects. One project is related to a still experimental therapy that involves using grafts, or transplants, of new dopamine cells placed into the striatum (area of the brain) of patients with PD. While such grafts have been shown to produce clear clinical benefits in some individuals, the results have been inconsistent and, in some, also induced dyskinetic movements — a phenomenon referred to as graft-induced dyskinesias.

Graft-induced dyskinesias are presumed to occur when the newly grafted neurons ‘hook up’ incorrectly within the brain of a person with Parkinson’s. “I became interested in what was causing graft-induced as well as medication-induced dyskinesias. I continue to study these basic biology mechanisms to try and understand what is going on in the brain of individuals with Parkinson’s to limit therapeutic benefits and cause unwanted side-effects,” said Dr. Steece-Collier.   

In 2014, an International Research Grant from the Parkinson’s Foundation allowed Dr. Steece-Collier to delve deeper into a second topic of study in her lab, medication-induced dyskinesias. Her research sought to determine if a specific calcium channel in the brain, which allows calcium to enter nerve cells, contributes to levodopa-induced dyskinesias and whether silencing, or blocking, this channel could alleviate them.

“The Parkinson's Foundation was the first funding organization that had faith in this project. They saw enough promise in it that they gave us the seed money to develop the necessary preliminary data to support the importance of a particular population of calcium channels in the expression of levodopa-induced dyskinesias.”

Dr. Steece-Collier and her research team determined that a ‘gene silencing’ technique to ‘quiet’ these calcium channels could protect against levodopa-induced dyskinesias. This process involves injecting genetic material into a particular region of the brain where calcium channels develop abnormal activity. This gene therapy approach that allows new genetic information to reduce the number of these channels has already shown remarkable progress in successfully alleviating levodopa-induced dyskinesias in an experimental model of PD.

“With the Parkinson’s Foundation funding, we were able to get enough preliminary data that we could then go to the National Institutes of Health to obtain funding for larger functional studies. Indeed, without the Parkinson’s Foundation it is likely that none of this would have been realized.” 

- Dr. Steece-Collier

The greater aim for this research is to provide rationale for the design of clinical trials of gene silencing to reduce the abnormal calcium channel signaling that occurs in the PD brain. Dr. Steece-Collier remains hopeful that the effective and life-changing application of this research will strengthen interest in the development of new therapies that target this specific calcium channel to not only ameliorate dyskinesia side-effects but potentially slow disease progression. “This project is near and dear to my heart, and I hope in the next decade we can take it to clinical trial — that'll be what I'll retire on,” said Dr. Steece-Collier.

Learn more about Parkinson’s Foundation research at Parkinson.org/Research.

Even after years of managing Parkinson’s disease (PD), symptoms may become more challenging to control. Parkinson's Foundation Chief Scientific Officer James Beck, PhD, walks us through how symptoms may change over time and when surgical therapies, such as deep brain stimulation (DBS), may become a better option for those living with Parkinson’s.

Watch the latest Parkinson’s disease videos on our YouTube channel.

Why should I participate in a genetics research study if I already know I have Parkinson’s disease (PD)? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, answers your top questions about the cutting-edge genetics research study, PD GENEration: Mapping the Future of Parkinson’s Disease. This national initiative offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s.

Watch the latest Parkinson’s disease videos on our YouTube channel.