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.

Check out all of our books available on Kindle now:

 These books in Spanish are also available on Kindle:

Download our Books on Kindle Now!

More Ways to Access Our Free Resources

Visit Parkinson.org/Library

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.

Call Our Helpline

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.

We are only able to provide Parkinson’s resources like these because of our generous supporters. Consider donating to the Parkinson’s Foundation today.

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

The Parkinson's Foundation, in collaboration with the American College of Sports Medicine, created new Parkinson’s disease (PD) exercise recommendations to ensure that people with Parkinson’s are receiving safe and effective exercise programs and instruction. The guidelines are the result of a convening including 34 exercise professionals and thought leaders who met in March 2020 to help develop the framework for these guidelines.

The new exercise guidelines include recommended frequency, intensity, time, type, volume and progression of exercises that are safe and effective for people with Parkinson’s across four domains: aerobic activity, strength training, balance, agility and multitasking and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD.

It is recommended that people with PD see a physical therapist specializing in Parkinson’s for full functional evaluation and recommends exercise during ‘on’ periods, when taking medication. The guidelines also recommend 150 minutes of moderate to vigorous exercise per week for people with Parkinson’s. Other key recommendations include:

• Aerobic activity: 3 days a week for at least 30 minute per session of continuous or intermittent movement at moderate or vigorous intensity
• Strength training: 2-3 non-consecutive days per week of at least 30 minutes per session for 10-15 repos for major muscle groups; resistance, speed, or power focus
• Balance, agility and multitasking: 2-3 days per week with daily integration if possible
• Stretching: 2-3 days per week with daily stretching being most effective
   

Research from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s, suggests that people with PD do at least 2.5 hours of exercise a week for a better quality of life. The new Parkinson’s exercise guidelines aim to support the Parkinson’s community in staying active. The guidelines also provide an important framework for exercise professionals, who play a vital role in developing safe and effective programs to improve quality of life for the PD community. 

Learn more:

• Read the Parkinson’s Foundation exercise recommendations
• Read see the full Exercise Convening Summary Report
• Exercise professionals can review the professional version of these guidelines

Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.

Question: My father and his father both had Parkinson’s. I’m wondering if this is a disease that I and my children should be concerned about possibly inheriting? If so, is there a way or place we can get tested? None of us currently show any signs or symptoms.

Currently scientists find that genetics alone cause only 10% to 15% of all people's Parkinson’s. If through genetic testing a person is positive for a certain gene mutation associated with Parkinson’s (such as LRRK2, GBA and SNCA genes) then their risk may increase, but they may never develop Parkinson’s. Genetic testing for these and other genes can be done, but it will not be able to predict the probability for you or your kids to develop the disease.

Testing may be able to calculate your risk. A complicated interplay between environmental and genetic factors are thought to be the main reasons why the vast majority develop Parkinson’s.

I can understand your wish to know more about genetics and Parkinson’s because of your family history, it might be helpful to first talk with a genetic counselor about why you want the test and what impact the results will have on you and your family. If you want to read more about this, we have additional information on Parkinson.org/Genetics.

You can also learn more about the Parkinson’s Foundation PD GENEration study that offers genetic testing for Parkinson's-related genes and genetic counseling at no cost for people with Parkinson’s disease.

Do you have a question for the PD community? Join the PD Conversation in our discussion groups: Newly Diagnosed, Symptoms, Caregiving, Tips for Daily Living, Young-Onset and more.

Imagine being diagnosed with an incurable neurological disease, but afraid to reveal your identity because you might be denied care or enrollment in a clinical trial. Unfortunately, for many within the LGBTQ+ population living with Parkinson’s disease (PD), this is a common reality. Chi-Ying Roy Lin, MD, MPH, is an incoming neurologist at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, who is advocating for the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) Parkinson’s community through research.

In his previous role as a Parkinson's Foundation Movement Disorders Fellow at New York-Presbyterian Hospital/Columbia University Medical Center, Dr. Lin noticed some life-altering issues his patients were grappling with. “Movement disorders is one of the least researched areas in the LGBTQ+ neuroscience field,” Dr. Lin said. The LGBTQ+ Parkinson’s community is so under-researched, there are currently no population estimates.  

Dr. Lin’s published study titled, “Expanding Sexual and Gender Minority Research In Movement Disorders: More Than Awareness and Acceptance” identifies the most urgent LGBTQ+-related Parkinson’s issues. 

Estrogen and Testosterone in Parkinson’s Research 

Estrogen and testosterone can be given as medically necessary gender-affirming hormones to match transgender people’s gender identity. How does this relate to Parkinson’s? At this point, testosterone was not found to affect Parkinson’s symptoms. On the other hand, the influence of estrogen on Parkinson’s symptoms remains inconclusive. Some research has shown that estrogen can play a role in providing protective benefits, such as lessening certain symptoms. Researchers also found that women with PD could have more motor fluctuations than men, challenging the idea of estrogen’s “protective effect” In PD.

What does this mean for trans women with PD who take estrogen therapy? “It is possible that trans women with Parkinson’s who take estrogen may see better or worse motor symptoms, which requires future research to tell us,” Dr. Lin said. “This is particularly important, as counseling about the stopping or altering of gender-affirming hormone for a transgender person, if necessary, is drastically different from that for postmenopausal or contraception purpose, considering the medical necessity of gender-affirming hormone to maintain mental health and life quality.”

Worse Parkinson’s Care Access and Experience

“There is a disparity in care among those in the sexual and gender minorities,” Dr. Lin said. “I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.”

“We need to create a safe environment in healthcare institutions to disclose sexual orientation and gender identity to better impact care and access to resources,” Dr. Lin wrote in his study. Sex is a biological identifier generally determined at birth (male or female), while gender is a person’s identity (man, woman, transgender, non-binary). 

Unfortunately, there is no LGBTQ+ patient guidance for multidisciplinary teams or care facilities. This coupled with ongoing discrimination and stigma against LGBTQ+ patients in healthcare, many people do not feel comfortable telling their doctor they are in a same-sex marriage or they identify as transgender. Seniors within the LGBTQ+ are particularly vulnerable. “It is not uncommon to see higher rates of violence or verbal abuse in nursing homes aimed at LGBTQ+ residents,” Dr. Lin said.

Identity Issues

Research, education, and advocacy can help address all these issues. The biggest obstacle right now for the LGBTQ+ Parkinson’s community is data. On a national level, most medical records list sex (female or male), but not gender (how a person identifies). “This continues to limit our research,” Dr. Lin said. 

Knowing if a patient with Parkinson’s identifies as LGBTQ+ may help doctors provide customized treatments for movement and mood disorders. For instance, LGBTQ+ members typically experience higher rates of social isolation, so do people with Parkinson’s. If someone is LGBTQ+ and has Parkinson’s, they would be extremely prone to experience graver isolation issues that can lead to the worsening of non-movement PD symptoms, like depression or anxiety. To provide better evidence-based care, Dr. Lin would like to answer, “How does identity affect access to research and care?”

Helping the LGBTQ+ Parkinson’s Community

Policy-making and advocacy would change the course of treatment and care for the LGBTQ+ Parkinson’s community. “There are currently no guidelines at national or state level to help provide better care for the LGBTQ+ community,” Dr. Lin said. “There is a critical need for literature and best practices.” 

Once created, guidelines would begin to address the disparity of care experienced by the LGBTQ+ community along with providing more tailored treatment options and help healthcare professionals follow best practices when treating LGBTQ+, Parkinson’s patients. For example, a nation-wide LGBTQ+ Parkinson’s guidelines can include affirming terminology for healthcare workers, an LGBTQ+-friendly and culturally competent provider list and proven ways to help the LGBTQ+ population feel more comfortable speaking to their care team. 

“Do not be afraid to reveal your identity and community, said Dr. Lin when asked for his advice to the underrepresented LGBTQ+ Parkinson’s community. “I feel people in the medical community are relatively open-minded. If you are uncomfortable with your current specialist, reach out to other providers who may be able to give LGBTQ+ customized care. Telemedicine allows most people to find the right provider now. Also, try to be active in participating in clinical research and trials. Don’t be afraid to reveal who you are.” 

Learn more about the Foundation’s commitment to diversity, equity and inclusion at Parkinson.org/DEI.