When many first hear the term palliative care, they can misinterpret it as end of life care. However, palliative care is an option for anyone with Parkinson's disease (PD) to receive additional support, even at the point of diagnosis. It can help at any PD stage, specifically with treating pain management; encompassing spiritual care and helping people with Parkinson’s and their family navigate emotional challenges. It can also compassionately create a safe space for one to explore, and ultimately share, their end-of-life directives.

What if that level of holistic care wasn’t reserved for the final weeks of life, but rather was incorporated into standard care in the PD population? How might that impact the quality of life and symptom burden for people with Parkinson’s and their caregiver?

Recently published in the journal, JAMA Neurology, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial” (Kluger et al., 2020), a one-year comparative study investigated palliative care and its effects on patient and caregiver.

Study participants included 210 patients (135 men, 75 women), predominantly white, married, college-educated, with an average age of mid-60s. The caregiver participants were composed of 175 people (47 men, 128 women) — 143 of whom were the patients’ spouse. The study was conducted at three academic medical centers: University of Alberta (Alberta, Canada), the University of Colorado (Aurora, CO), and the University of California (San Francisco, CA).

Participants were randomly assigned to receive one of two courses of treatment:

• The standard of care option: provided by a neurologist and a primary care physician.
• The integrated palliative care option: included the standard of care, plus a chaplain, a social worker and a nurse using a palliative care checklist — who could also access additional guidance from a palliative medicine specialist. Palliative care visits were performed either in person or by telemedicine every three months.

The study primarily measured a change in quality of life of patient and caregiver burden. Also measured were: symptom burden; patient and caregiver mood (anxiety and depression); patient and caregiver grief and spiritual well-being; patient and caregiver patterns of health care use; motor symptoms; and, cognitive functioning.

Results

Comparing participants receiving palliative care with those who received standard care alone, after six months:

• Patients receiving palliative care had better quality of life
• Patients receiving palliative care had better symptom burden
• Patients receiving palliative care experienced less grief
• Patients receiving palliative care had better rates of completing their Advanced Directive Completion (end-of-life preferences)
• Patients receiving palliative care had statistically and clinically significant benefit in motor symptoms

Comparing palliative care and standard of care caregivers:

• Palliative care caregivers experienced less anxiety
• No other significant differences were found in caregiver burden

What Does It Mean?

This study found that introducing palliative care significantly improves quality of life for people with Parkinson’s — not just emotionally, but also physically. The study authors share that while these motor improvements were unexpected, they may reflect, “an unanticipated benefit of our palliative care team’s general goal of encouraging activities that promoted joy, meaning and connection.” Additionally, the caregivers in the palliative care group also experienced less anxiety themselves — with no increase in caregiver burden. Interestingly, not a single outcome measure favored receiving standard care alone.

Of note, the study’s main limitation was its lack of diversity among study participants; more than 70% of the participants were white. Incorporating a far more diverse population needs to be included as this important research moves forward.

At its core, palliative care is a caring, holistic approach that optimizes quality of life for as long as possible. Loved ones and caregivers benefit as well, often transforming an otherwise frightening, overwhelming and painful journey into a sacred passage. Introducing this level of care and connection could make all the difference in quality of life.

Learn More

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

• Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One
• Special Challenges of Caring for Someone with Parkinson’s
• Podcast Episode 41: Palliative Care as Supportive Care in PD
• Parkinson’s Foundation Launches Palliative Care Program Across U.S. Centers of Excellence
• Caring for Someone with Advanced Parkinson’s
• Get Palliative Care: Directory

During the time of COVID-19 are people with Parkinson’s disease (PD) frequently experiencing anxiety? Are they using telehealth services to see their medical team? Are they exercising less or more often than before the pandemic? A Parkinson’s Foundation survey sought to answer these questions and more.

As the COVID-19 pandemic continues, little is known about its impact on the health and day-to-day activities of people with Parkinson’s. The Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey to people with Parkinson’s to provide guidance to clinicians, policy makers and the PD community on how COVID-19 has transformed the lives of people with Parkinson’s and their access to care.

“People with Parkinson’s encounter numerous difficulties during normal times, especially when it comes to receiving proper PD medications when admitted to hospitals,” said Phil Gee, Parkinson's Foundation People with Parkinson’s Advisory Council Member. “I am grateful that the Parkinson’s Foundation initiated this COVID-19 survey to capture how people with Parkinson’s disease are coping during this pandemic.”

What did the survey measure?

This survey was administered between May 2020 and June 2020, receiving 1,342 completed responses from people with PD.

The survey asked people with PD about their:

• COVID-19 health status
• Emotional health
• Attitudes and practices related to changes in their routine since the pandemic began
• Telehealth use and satisfaction

Results

Almost all survey respondents came from within the U.S. Respondents live across states that experienced all levels of COVID-19 infection. The average age for respondents was 71, and the average time they have lived with Parkinson’s was seven years.

Diagnosed with COVID-19 and Parkinson’s

Only 17 (1.3%) survey respondents with PD reported a COVID-19 diagnosis by a health provider, five of which had a test to confirm the diagnosis. Within this small group, the most reported COVID-19 symptoms included: fatigue (71%), muscle pain (59%), body aches (59%), cough (63%), headache (47%) and shortness of breath (47%). COVID-19 symptoms lasted an average of 13.5 days.

Mood

More than half of respondents experienced nervousness or anxiety (67%), feeling down or depressed (51%), reduced interest or pleasure in doing things (54%) or sleep disturbances (66%) in the six weeks prior to the survey. Women were more likely to experience these symptoms than men, with the exception of experiencing a reduced interest or pleasure in doing things.

Respondents who reported experiencing frequent mood disruptions (anxiety, worry, depression, reduced interest, sleep disturbances or isolation) during the pandemic where asked to explain why.

• Anxiety was most often attributed to the fear of respondents getting infected (22%) and not knowing when COVID-19 would be resolved (13%).
• Depression was most often attributed to the inability to see or have physical contact with family and friends (16%) and having a history a depression unrelated to COVID-19 (12%).
• Loss of interest was most often attributed to not leaving the house (14%), having lost interest and apathy prior to COVID-19 (14%) and hopelessness or negative feelings about the future (13%).
• Sleep problems were attributed to problems not related to COVID-19 (36%) or worry related to COVID-19 (34%).

Physical and Social Activities

Most people with PD (85%) felt that their personal life had changed during the COVID-19 pandemic. Nearly half of people with Parkinson’s noticed some negative change in their Parkinson’s symptoms during the pandemic, but most people with PD said they had no negative change in their relationship with members of their household (65%) or the frequency of their communication with others (75%).

Almost half of People with Parkinson’s (45%) reported reduced hours of exercise, and 73% reported a reduction in activities outside of their home.  However, most respondents reported that activities were available online (82%), among whom 92% participated. The most common virtual sessions attended included exercise/wellness class (58%), support groups (32%), recreational classes (13%, religious services (46%), educational events (36%) and other (22%).

As a response to COVID-19, to help ease the challenges of physical distancing, the Parkinson’s Foundation launched PD Health @ Home ― an interactive series of virtual events designed for the Parkinson’s community. To date, more than 230,800 participants have participated in the virtual programming. Currently, PD Health hosts innovative weekly expert-led educational webinars, guided mindfulness sessions and tailored fitness videos. See all upcoming PD Health @ Home events.

Telehealth

This survey measured the use of telehealth services for people with PD during COVID-19. Telehealth use increased from 10% prior to the pandemic to 64% during the pandemic. Those with higher income and higher education were associated with telehealth use.

People used telehealth most often for a doctor’s appointment compared to other health therapies (mental health, physical therapy, occupational therapy and speech and language pathology). Among those who had utilized services, almost half (46%) preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. However, having received support or instruction for telehealth and having a care partner, friend, or family member help with the telehealth visit increased the likelihood of using telehealth after the pandemic ended.

Key Takeaways

While better understanding the COVID-19 experiences of people with PD, looking at the bigger picture, survey results suggest several urgent unmet community needs.

The most notable shift within the PD community is the widespread use of telehealth. Telehealth use significantly increased 54% during the COVID-19 pandemic. However, results made it clear that the PD community urgently needs the expansion of telehealth services to include additional physical, occupational psychological and speech therapies, along with more support for how to use telehealth services and better reaching underserved (low income) populations.  

New strategies must be developed to make telemedicine more available to all prospective users. The COVID-19 pandemic has differentially impacted people from lower socioeconomic status and extending telemedicine services to economically disadvantaged populations may help reduce disparities.

Depression and anxiety symptoms were prevalent in people with PD during the pandemic. Household income and employment status were found to be important factors in predicting mood disturbances. Our data strongly suggest disparities across socioeconomic status in people with PD during the COVID-19 pandemic, with those of lower income far more affected by financial and employment uncertainties. Interestingly, factors such as location and local COVID-19 rates were not associated with mood symptoms. This suggests that communities deemed at lower risk of spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life.

We must further explore the relationship between PD and COVID-19. Given the uncertainty of how long the hardship of COVID-19 and social distancing requirements may persist, we must identify ways to help the PD community throughout this period. Gathering accurate data on COVID-19 risk among people with PD and improving telemedicine by providing a wider range of services and making it more accessible is essential.

Learn More

• Parkinson.org/COVID19
• COVID-19 FAQs
• PD Hospitalization and Coronavirus Preparedness Fact Sheet
• Centers for Disease Control: Coronavirus 

Learn more about Parkinson’s and COVID-19 at Parkinson.org/COVID19 or by calling our Helpline at 1-800-4PD-INFO.

Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.

In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.

“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.

Medical Cannabis and Parkinson’s

Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.

Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.

Survey Results

The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.

Experiences with Cannabis and Managing PD

Of the respondents who consumed cannabis:

• 25% used cannabis within the previous six months.
• 57% learned about cannabis use from the internet, friends or other people with PD.
• 64% had not received a cannabis recommendation from a licensed doctor or provider.
• 56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
• Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.

Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.

Experiences with Cannabis and Managing PD Symptoms

Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.

Negative Side Effects

Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.

Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.

PD Medication and Cannabis Consumption

Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.

Clinical Trials

Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.

Key Takeaways

While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:

• A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
• Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
• One in five survey respondents are current cannabis consumers.
• Cannabis use did not have an impact on PD prescription medications.
• Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.

Learn More

Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

• Parkinson.org/Marijuana
• Medical Cannabis Convening Findings: Top Takeaways and Guidance
• Ask the Experts: The Challenges of Using Marijuana as a Parkinson’s Treatment, Part 1 and Part 2 
• Marijuana and Parkinson’s: What Do We Really Know?

Learn more about Parkinson’s and marijuana at Parkinson.org/Marijuana or by calling our Helpline at 1-800-4PD-INFO.

Life as we knew it changed on January 30, 2020. That was that day when the World Health Organization (WHO) officially declared the COVID-19 outbreak to be a Public Health Emergency of International Concern. Caused by Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), COVID-19 can result in serious, life-threatening complications, regardless of one’s age, race, health status, geographical location, or socio-economic income and including people with Parkinson’s disease. In this article, we’ll examine a new study from a Parkinson’s Foundation Center of Excellence, Nijmegen Parkinson’s Center in the Netherlands, which recommends the COVID-19 vaccination for people with Parkinson’s, unless there is a specific contraindication.

Overall, we know that people with PD who contract COVID-19 are more likely to experience severe respiratory issues and have more difficulty recovering from COVID-19 – particularly among those with advanced PD, compared to people who do not have PD. Another additional concern for those with PD is that COVID-19 may trigger a worsening of both motor and non-motor symptoms and also may increase the risks of mental health challenges. These mental health challenges are known to be higher for people with PD living under social isolation, higher stress levels and without adequate exercise.

The good news is, there is hope on the horizon. Pharmaceutical companies Pfizer/BioNTech  and Moderna each received Emergency Use Authorization from the U.S. Food & Drug Administration (FDA) for their respective messenger RNA (mRNA) two-dose vaccines. In terms of safety, of the over 42 million people in the United States who have received at least one of these vaccines, severe, life-threatening allergic reactions have been rare, i.e., Pfizer less than 11.1 cases per one million doses, and Moderna 2.5 cases per million doses administered.

Expert commentary recently published in the Journal of Parkinson’s Disease, titled, “COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel?” (Bloem et al., 2021), tackles the question of getting the COVID-19 vaccine for people with Parkinson’s using a scientific, evidence-based approach. Bas Bloem, MD, PhD, works at the Radboud University Nijmegen Medical Centre, a Parkinson’s Foundation Center of Excellence. The Nijmegen Parkinson Center is one 14 international Centers of Excellence and 33 others in the United States.

These experts closely studied the development and approval processes – including the thorough analyses of completed Phase III data as provided by vaccine developers in a transparent process with peer-reviewed publication of the full data sets. In other words, Bloem et al. (2021) were privy to all of the actual data, not just cherry-picked data. Additional COVID-19 vaccination information was provided by the Scientific Issues Committee (IPMDS-SIC) of the International Parkinson and Movement Disorder Society.

Results

• Compared to the general population, the risk of SARS-CoV-2 infection causing serious, life-threatening disease seems higher for people living with PD, at least among those with more advanced disease.
• The approved mRNA-based vaccines are not known or expected to interact with the PD neurodegenerative process.
• COVID-19 vaccination is not known to interfere with the current PD therapies.
• The types or incidence of side effects of these vaccines in persons with PD were observed to be no different than in the general population – pain and irritation at the injection site, fatigue, muscle pain, headache, low fever/chills.
• The vaccines were observed to be safe for older adults, however caution is needed for the specific subgroup of very frail and terminally ill elderly persons with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses.
• Taken together, (Bloem et al., 2021) recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.
• Vaccinated persons with PD must continue to comply with the public health guidelines to reduce exposure and to possibly reduce transmission of COVID-19.
• Insights may change, conscious monitoring of newly emerging data from both trials and real-life vaccination programs is critical.
• The authors did not examine the recently US FDA approved vaccine produced by Johnson & Johnson so persons with Parkinson’s and family members should not extrapolate the data from this recent study to apply to the new single dose vaccine.  Hopefully more information on this approach will be available soon.

What Does It Mean?

Both the Pfizer/BioNTech and Moderna mRNA vaccines met the high standards required for use authorization after rigorous data scrutiny and validation – as required in the normal US FDA vaccine approval process. This process is essential in determining not only safety and efficacy, but also that the vaccine benefits outweigh its risks. Today, in the United States, the death toll from COVID-19 topped 500,000 people; worldwide, it has been associated with more than 2,462,000 deaths. 

Based upon the available data, the incidence of side effects in persons with PD have not been different than in the general population. The approved mRNA-based vaccines, Pfizer/BioNTech and Moderna:

1. do not interact with the neurodegenerative process in PD
2. have been shown to be highly effective in preventing the severe and even the mild forms of the disease
3. help the body more rapidly clear the infection. High efficacy (>90%) has been demonstrated regardless of race, gender, age, and medical conditions. How big of deal is greater than 90 percent efficacy? During the 2019-20 flu season in the United States, the overall effectiveness of the seasonal flu vaccine in children and adults was about 45 percent.

In their MDS COVID-19 Vaccine Statement for Patients, the International Parkinson and Movement Disorder Society and its Scientific Issues Committee included the following, “All considered, we have encouraged our community of health specialists to recommend COVID-19 vaccination to their patients with PD (or their responsible caregivers) unless there is a specific reason that precludes administration. We also recommend that patients come forward to seek the vaccine as quickly as it is available.”

Finally, as stated by the experts, Bloem et al., (2021), even after being fully vaccinated, it is important that persons with PD continue complying with the public health guidelines to reduce exposure and transmission of COVID-19 as recommended by WHO and the CDC.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Covid-19 and PD by vising the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Parkinson’s & the COVID-19 Vaccine
• Covid-19 & Parkinson’s
• Kit Contents: Hospitalization During COVID-19 Doctor Letter
•  COVID-19 vaccines and rare severe allergic reactions

The newest signature initiative from the Parkinson’s Foundation is not only the first bilingual study to offer genetic testing and genetic counseling in English and Spanish at no cost for people with Parkinson’s disease (PD), but it is already making waves in the research world.

PD GENEration: Mapping the Future of Parkinson’s Disease is a national effort that will ultimately lead to improved treatments and care for all people with Parkinson’s. What many might not know is that through its design and launch, the study and results of its comprehensive genetics testing panel have already made major impacts for the PD research community:

1. Leading the way in Parkinson’s-specific genetic counseling.

PD GENEration is a unique study that focuses on delivering PD-specific genetics counseling to place results into context for those with PD. Many PD genetic tests do not offer genetic counseling. The Parkinson’s Foundation together with the Indiana University School of Medicine, a Parkinson’s Foundation Centers of Excellence, developed the gold standard for genetic test reports.  With feedback from the Parkinson’s community, these reports are tailored so that they can be easily and effectively used by people with Parkinson’s and their doctors.  

This gold standard report sets the bar for the type and clarity of information that should be included in a PD genetic test report. Working in conjunction with genetic counseling, PD GENEration participants will understand what their genetic test results mean to them, how these results may or may not affect their family, and how to share results with family members. Already this approach has created a major impact on clinical care by raising standards to ensure that clinicians and people with PD are receiving the highest quality of genetic counseling in the Parkinson’s field.

2. Launched the most comprehensive Parkinson’s-specific at-home test.

Created by the Parkinson’s Foundation, in partnership with Fulgent Genetics, the PD GENEration at-home and in-person tests use state-of-the art technology that comprehensively analyzes seven key Parkinson’s genes. This includes the two most common PD genes: LRRK2 and GBA.

Many genetic tests only scratch the surface, testing for a few known, primary genetic mutations. “It is important for genetic tests to have the capability to detect every possible mutation in a single gene not just one or two. Searching for only the known mutations limits scientific research to discover information that we already know.  The goal of PD GENEration’s comprehensive full gene testing is to discover new information to help accelerate research and our understanding of PD,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation.

3. Established first-ever international expert panel on Parkinson’s genetics.

Through PD GENEration, the Parkinson’s Foundation has already made a tremendous impact in the genetics field.  The Parkinson’s Foundation has been appointed by the National Institutes of Health (NIH) to lead an international team of experts to focus on Parkinson’s disease genetics. As a result, the Parkinson’s Foundation serves as the founding chair of what is known as a Parkinson's Disease Gene Curation Expert Panel.  

Under the Foundation’s leadership, the Parkinson's Disease Gene Curation Expert Panel has convened more than 40 of the world’s leading researchers in Parkinson’s genetics to analyze PD GENEration and other genetic data with the hope of accelerating breakthrough discoveries. The Parkinson’s Disease Gene Curation Expert Panel is important because the U.S Food and Drug Administration (FDA) relies on these expert panels across diseases to determine which genes are important for a particular disease which, in turn, helps guide drug approvals and inform drug companies to prioritize certain genetic targets.

4. Accelerating PD Clinical Trial Recruitment.

Today, knowledge of a genetic PD mutation can help determine if a person qualifies for the latest clinical trials. Many of the industry’s leading pharmaceutical companies are interested in pursuing gene-targeted trials. PD GENEration helps accelerate clinical trial timelines by identifying people with Parkinson’s who may be eligible to participate in these clinical trials.

Recruiting people into a clinical trial can take two years or longer, on average. By identifying trial-ready participants, PD GENEration has the potential to increase the flow of participants into clinical studies that urgently need them.  The ultimate result will be to speed promising medications into the hands of those with PD sooner. Reducing the time it takes to run clinical trials means reducing the overall cost of the trial. Lower costs means lower risk on the investment from companies to help develop new therapies for PD. The lower the risk to invest, the greater the interest for top pharmaceutical companies and researchers to prioritize Parkinson’s drug development.

5. Working to improve standard of Parkinson’s care.

PD GENEration’s goal is to improve the standard of Parkinson’s care. In the near future, the hope is that everyone diagnosed with Parkinson’s will receive genetic testing. For those who may have PD-related genetic mutation, doctors will be able to create a specific treatment plan that will respond best to their type of genetically connected Parkinson’s. 

“We are aiming to offer a new, more efficient standard of care that every doctor can use as a starting point when treating people with Parkinson’s,” said Anna Naito, PhD, Associate Vice President of Clinical Research. “While Parkinson’s Foundation Centers of Excellence will be leaders in the PD field to offer this new, improved standard of care, our  goal is to provide all doctors with access to provide improved care for their patients.”

6. Building a global PD-genetic database.

All PD GENEration genetic samples are anonymously stored for future research and studies. The Foundation has also partnered with the Global Parkinson’s Genetics Program (GP2) — a world-wide genetics study that hopes to analyze genetic data from 150,000 people with Parkinson’s from all races and backgrounds and is supported by Aligning Science Across Parkinson’s (ASAP).

“All our PD GENEration samples are not only being analyzed by Parkinson’s Foundation researchers, but they are also being analyzed by global scientists and leaders in the genetics and Parkinson’s research fields,” said Dr. Naito. PD GENEration will represent one of the largest contributors of global genetic PD data among North Americans. “We believe this study will get us closer to scientific breakthroughs and better treatments for PD. Sharing this new and constantly evolving data with world experts will allow us to move the research and treatment field forward on a global level,” she added.

For more information or to enroll in PD GENEration now, visit Parkinson.org/PDGENEration.

The Parkinson’s Foundation believes in providing resources that empower and educate the Parkinson’s disease (PD) community. To bring more resources to our Chinese-speaking community, we have translated multiple fact sheets:

帕金森病 vs. 帕金森综合征 (PD vs. Parkinsonism)

作业治疗 (Occupational Therapy)

关于帕金森病 (About PD)

帕金森氏病临终关怀意义 (Hospice)

帕金森病常见问题 (Frequently Asked Questions)

帕金森病的疼痛 (Pain)

帕金森病的睡眠障碍 (Sleep)

帕金森病的营养 (Nutrition)

开车与帕金森病 (Driving)

柏金遜症的10個早期警告徵兆 (10 Early Signs of PD)

泌尿功能障碍与帕金森病 (Urinary Dysfunction)

脑捐赠 (Brain Donation)

膳食补充剂和帕金森病 (Dietary)

运动与帕金森 (Exercise and PD)

Visit Parkinson.org/Library to view all our resources.

Parkinson’s Foundation volunteers play various roles, using their knowledge, skills and passions to help the Foundation further our mission to make life better for people with Parkinson’s. Thanks to Howe Liu, MD, PhD, and his team who volunteered to translate our most popular fact sheets, we now have new Mandarin Chinese translations that can be utilized by the Mandarin Chinese-speaking community worldwide.

Visit Parkinson.org/Volunteer to see how you can get involved!

The Parkinson’s Foundation would like to thank Dr. Howe and his team: Dr. Gong, Weijun (Beijing Rehabilitation Hospital); Dr. Qiao, Hongfei (Second Affiliated Hospital of Xi'an Jiaotong University); Dr. Zhao, Mingming (Guangxi Jiangbin Hospital); Dr. Li, Yinzhi (Second Affiliated Hospital of Yunnan University of Traditional Chinese Medicine); and Dr. Lu, Yujin (First People's Hospital of Shanghai).

As the Pfizer/BioNTech, Moderna and Johnson & Johnson COVID-19 vaccines become more widely available across the United States, and data shows vaccine safety and benefit in those with Parkinson’s disease (PD), people are looking to brighter days ahead. This Facebook Live was conducted prior to U.S. Centers for Disease Control Announcement (CDC) that they will be pausing Johnson & Johnson vaccines out of an abundance of caution while investigating reports of rare and potentially dangerous blood clots. Dr. Anthony Fauci from NIH has stated that people who have already received the Johnson & Johnson vaccine will still receive the COVID-19 benefits. Continued monitoring for potential blood clots should be performed with your local doctor.

In an April 8 Parkinson’s Foundation Facebook Live event, “Life with Parkinson’s After the Covid-19 Vaccine,” Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, answered questions from the PD community about what post-vaccine life might look like.

“We have seen a categorical worsening of Parkinson’s symptoms during the COVID-19 pandemic and that's because people have been stuck at home without the ability to seek care,” Dr. Okun said. “Vaccines are one of the things that are going to help.”

Learn More

The Parkinson’s Foundation is committed to keeping you up to date on the latest COVID-19 and PD developments at Parkinson.org/COVID.

Call our free Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

Every year, thousands of neurologists, researchers and health professionals gather at the American Academy of Neurology Annual Meeting to present the latest in research, treatments and best practices in the neurological field – including Parkinson’s disease. This year, the Parkinson’s Foundation participated in this virtual event which took place April 17 – 22. The Foundation presented a poster titled PD GENEration During COVID-19: Transitioning to Remote Recruitment For Genetic Counseling and Testing.

PD GENEration: Mapping the Future of Parkinson’s Disease is a national study launched by the Parkinson’s Foundation in 2019. We offer genetic testing for Parkinson’s-related genes and genetic counseling at no cost for participants with a confirmed Parkinson’s disease (PD) diagnosis. Participation can be either in-person at one of our participating Centers of Excellence and Parkinson Study Group sites, or from home through a telemedicine appointment and at-home sample collection kit.

The poster, presented by Anna Naito, PhD, Associate Vice President of Research Programs, addresses several questions about pivoting the study to conduct genetic testing and counseling remotely. Here we highlight some of those questions and answers.

How could we safely conduct the PD GENEration study while following the social distancing and safety requirements during COVID-19 pandemic?

For PD GENEration, remote recruitment for genetic testing and counseling for people with PD was found to be not only feasible, but also popular. This method also increased participants’ geographic spread. Further, the telemedicine recruitment rate exceeded that of the in-person recruitment (204 participants over 5 months).

Before the pandemic, the pilot stage of PD GENEration was designed for in-person recruitment and participation at several Parkinson’s Foundation Centers of Excellence across the country. The winning combination was peoples’ genuine desire to learn their genetic status, a genetic test kit that could be mailed to their home, and the concept of telemedicine shifting from a rare occurrence to the ‘new normal’.

For people with PD, genetic testing can let you know if you carry known gene changes linked to the disease. It’s estimated that about 10 percent of people with PD have a genetic form of the disease, so by better understanding how those with genetic forms of PD experience symptoms related to Parkinson’s and respond to treatment, scientists can begin to develop improved treatments and personalized medicines.

A deeper understanding of the genetics of PD may also lead to better treatments themselves by revealing novel therapeutic targets, spurring development of better drugs. Genetic testing can also help people with PD and their clinicians identify whether they may qualify for enrollment in certain clinical trials.  

Has the PD GENEration remote approach had any immediate positive or negative issues?

In terms of demographics, both in-person and remote approaches resulted in similar age and sex distribution. However, the telemedicine participants were more likely to have received a higher education. An important positive outcome was the increased geographic representation of PD GENEration participants spanning over 42 states in the US. This was only possible because the Foundation pivoted to offer remote participation. Importantly, despite the technological learning curve required with telemedicine, PD GENEration successfully demonstrated feasibility and adoption of telemedicine-based research participation among the Parkinson’s community.

What does this mean?

The goals of PD GENEration are to empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials. While virtually all clinical research studies came to an abrupt halt at the start of the COVID-19 pandemic, the Parkinson’s Foundation leads the field as one of the few Parkinson’s studies to continue enrollment during the pandemic by offering remote participation. We now know that telemedicine is a highly successful approach to conducting genetic testing and furthering these goals. By participating in this study and contributing their genetic data, people with PD can better manage the disease, help scientists in their journey to advance understanding of PD, improve PD care and research and accelerate enrollment in clinical trials.

To learn more about PD GENEration or to enroll in the study, visit Parkinson.org/PDGENEration.

Did you know our books are now available on Kindle? Read all 12 of our books using your Kindle or Kindle app on your tablet. Every book is written and designed to make life a little easier for people with Parkinson’s disease (PD), caregivers and family members.

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All our books and fact sheets are always available at Parkinson.org/Library, where you can download them or read them on our site. Visit our PD Library now.

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Not sure where to begin? Talk to a Helpline specialist for personalized book and resource suggestions. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

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It was first suggested in the 1960’s that people with type-2 diabetes are at increased risk for developing Parkinson's disease (PD) – and when they do develop PD, its progression is faster and often more severe. This may be due, in part, to an apparent relationship in the brain between dopamine, insulin resistance, and glucose control. Insulin is not only made in the pancreas, it’s also present in the brain – where it has been shown to impact dopamine levels.

Parkinson’s is generally believed by scientists to be caused by the loss of dopamine-producing neurons. Parkinson’s symptoms, such as slowness, rigidity, and tremor, typically develop after approximately 40-80% of these dopamine-producing neurons die.

Why does this matter? Currently, more than 30 million people in the United States have type-2 diabetes, and that number is growing. The lifetime risk of developing Parkinson's is also on the rise. In light of these trends, it would be valuable to know whether any specific type-2 diabetes medications might be associated with an increased or decreased risk for developing PD.

A 40-month cohort study of over 100,000 patients with diabetes (Brauer et al., 2020) published in the journal, Brain, titled “Diabetes medications and risk of Parkinson's disease” examined the association between type-2 diabetes medications and the risk of developing Parkinson’s. Using patient medical records, the study authors compared the risk of developing PD in patients diagnosed with type-2 diabetes who took the following oral diabetes medications in various combinations:

1) Thiazolidinediones (also called glitazones), like pioglitazone (Actos) or rosiglitazone (Avandia), which specifically target insulin resistance

2) Drugs, like albiglutide (Tanzeum) or dulaglutide (Trulicity), that mimick glucagon-like peptide-1 (GLP-1) a hormone that promotes insulin secretion, and

3) Dipeptidyl peptidase 4 (DPP4) inhibitors, which increase GLP-1 levels, and lead to insulin secretion and lowering of blood sugar levels

The control (comparison) group were those individuals prescribed any other oral combination therapy for diabetes, such as metformin and sulfonylureas.

A wide variety of sophisticated mathematical analyses were conducted ­– with age, gender, smoking status, body mass index (BMI), and other known diabetes risk factors taken into account.

Results

• The rate of Parkinson’s disease was 36–60% lower in the people who took DPP4 inhibitors and/or GLP-1 receptor agonists.
• There was no evidence of any association between the use of glitazones  and Parkinson’s disease.
• No other medication or combination of medications demonstrated any statistically significant effect.

What Does This Mean?

In this large population-based cohort study, taking the medications DPP4 inhibitors and/or GLP-1 receptor agonists was associated with a lower rate of Parkinson’s disease. Based upon these findings of the possible protective effect of these medications, further studies are warranted and are currently underway. However, it is also important to note that an association is not the same as a causation. There may be other factors associated with taking certain type-2 diabetes medications that influence Parkinson’s risk.

Additionally, as noted by the study authors, while the results of this study may be useful for clinicians to take into account when choosing oral medications for treating diabetes, these preliminary results, “[…]cannot inform on the usefulness of specific drug classes on the rate of progression of Parkinson’s disease after diagnosis, nor on their efficacy among patients with Parkinson’s disease in the absence of diabetes" (Brauer et al., 2020, p. 3075). In other words, it’s too soon to tell, but the next phase of their research is already underway, where hopefully more definitive answers will be found.

Learn More

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

• Parkinson’s Disease and Insulin Resistance
• What’s Hot Medication Edition: Exenatide and Gocovri