People with Parkinson’s disease (PD) seeking to ease symptoms sometimes explore complementary therapies to support traditional treatments. Whether employing mindfulness to help manage pain or incorporating food as medicine, broad-ranging supplemental wellness strategies can boost well-being. Learn what to consider when exploring these therapies and how to work with your care provider for peak outcomes.

This article is based on Conversations About Complementary Therapies and PD, a Parkinson’s Foundation Expert Briefings webinar exploring treatments sometimes used together with medicine, presented by Natalie Diaz, MD, Neurology, Pacific Movement Disorders Center, Pacific Neuroscience Institute.

Advances in Integrative Medicine

Up to 40% of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.

There are more than 20 available prescription medications available today to treat Parkinson's symptoms. Complementary therapies are supplemental wellness products or strategies sometimes used alongside conventional medicine to alleviate the non-motor symptoms of Parkinson's, such as stress, nausea or constipation, or to improve sleep or well-being. Research shows up to 40 percent of people with Parkinson's in the U.S. incorporate complementary therapies into their self-care.

Integrative medicine — where medical providers combine traditional medicines and complementary therapies in a person's care — is also thriving. Doctors and healthcare experts can now receive board-certified integrative medicine fellowship training. A 2020 study found more than 50 percent of primary care physicians have recommended complementary therapies.

Data shows geographic differences in the use of complementary therapies. Americans tend to incorporate vitamins, dietary supplements and herbs and botanicals. Europeans and Scandinavians rely more on body-based practices, such as yoga and massage. Traditional medical systems in Asian and African countries incorporate a combination of all these practices.

There is also a socioeconomic gap in complementary therapy adoption – with people of greater incomes tending to use them. Many such treatments can be costly and are rarely covered by insurance.

Benefits of Mind-body Wellness Practices

Types of Complementary Therapies

• Exercises, like Tai Chi and yoga
• Vitamins and Supplements
• Acupuncture
• Meditation
• Healthy Foods
• Medical Cannabis
• And more!

Studies show mindfulness practice has physical and mental benefits. People with PD use mindfulness meditation to ease pain, minimize stress, increase focus and boost mood.

Other mind-body wellness practices proven to reduce stress and ease many symptoms of Parkinson's include exercises such as yoga and Tai Chi. These can lessen stiffness, increase flexibility and awareness of movement, and improve alignment, posture and core strength.

Acupuncture, where thin needles are placed at specific body points, is also sometimes used to alleviate PD pain. It's important to work with a qualified, skilled practitioner. Practitioners of reflexology, another mind-body technique, manipulate areas of a person's body to ease stress and aid digestion. As with exercise, effectiveness of these complementary therapies requires regular practice.

Making Sense of Supplements: Proceed with Caution

Despite the eagerness to incorporate supplemental strategies to live well, research shows more than half of Americans using complementary therapies don't consult their doctors before or during use. Open discussion with your care provider can uncover potentially serious side effects, prevent prescription medication interactions and ensure optimal outcomes.

Prescription medications go through rigorous U.S. Food and Drug Administration (FDA) approval processes to monitor and log potential adverse effects. However, alternative therapies such as nutritional supplements are instead regulated by the FDA as food, rather than medication. Although some companies use third-party verification to vet the supplements they sell, ingredients and dosages in over-the-counter vitamin, herb and dietary supplements can vary greatly. Be sure to seek a quality source.

Much of the science around nutritional supplements, herbs and botanicals is limited and inconclusive. Though some substances hold promise, more studies are needed.

Vitamins and supplements studied for complementary therapy by people with PD include:

• Vitamin C – antioxidants that may protect brain cells.
• Coenzyme Q10 – dosages of up to 2,400 mg daily are shown to be safe and well-tolerated, but there's currently no evidence of clinical benefits. This supplement interacts with blood thinners and aspirin. It can promote blood clotting and lower blood pressure.
• Creatine – while studies currently show no effect on PD progression or symptoms, this supplement might possibly boost mood.
• Vitamin E – one study shows this vitamin failed to stop Parkinson's progress. It can increase bleeding risk and interact with blood thinners and aspirin.
• Glutathione – studied in oral, injected and intranasal formulations to show no PD benefit.
• Omega-3 fatty acids – 1,000 mg of flaxseed oil and 400 IU vitamin E may decrease inflammatory markers and improve motor function. However, it can cause gastrointestinal and neurological side effects.
• CDP-choline (cytidine diphosphate) studies show taking 400 mg three times daily may lower levodopa dose.
• Phosphatidylcholine studies show using 100 mg three times daily can improve mood and motor function but can interact with other medications.
• Resveratrol can interact with aspirin, blood thinners and anticoagulants. It can also cause mild estrogenic activity.
• Beta carotene can cause skin pigmentation.
• Vitamin A might create nausea, dizziness and headaches.
• Vitamin B3/Niacin can bring on facial flushing and tingling.
• Vitamin D3 can lower the effect of statins and elevate blood calcium level when taken with certain diuretics.

Herbs and botanicals investigated for effectiveness in PD are:

• Gallic acid
• Ginseng
• Gingko biloba – shown to cause headache, stomach upset, palpitations and constipation, and can interact with many medications, including blood thinners.
• Curcumin, which might cause nausea or diarrhea.
• Green, black and oolong teas (camellia sinensis) can cause weight loss, nausea, rash, jitteriness or liver toxicity.
• Epigallocatechine-3-gallate (EGCG), can create dizziness and low blood sugar.
• Lion’s mane (Hericium erinaceus) can increase bleeding and interact with blood thinners.
• Milk thistle can cause abdominal bloating, diarrhea and loss of appetite. It also may lower blood sugar in people with diabetes.
• Quercetin can cause headache and nausea.
• Vincamine can cause low blood pressure, sedation and irregular heartbeat.
• Red clover can cause headache, nausea or muscle aches or estrogen-like effects including bloating, weight gain or tender breasts.

Nutritional supplements potentially useful for Parkinson's include:

• Melatonin, which may ease sleep-onset insomnia and dream enactment.
• Chamomile or passionflower – to promote sleep and ease anxiety.
• Valerian root might also promote sleep, but some people can experience headache, stomach upset and mental fog.
• Ginger may help with indigestion, but can cause heartburn and diarrhea.
• Peppermint oil might also help with indigestion.
• Flaxseed or flaxseed oil might ease constipation.
• Cranberry extract – may reduce the risk of recurrent urinary tract infections.

Mucuna Pruriens (velvet bean)

Seeds of mucuna pruriens, a legume found in tropical and subtropical areas, contain levodopa — the most powerful treatment for PD. Mucuna has been used in traditional medicine for millennia for a number of medical conditions. It's thought to have anti-inflammatory properties and may benefit diabetes.

It also might work as an antidepressant and has been documented in ancient texts to help what sounds like Parkinson's. A few studies compare this legume to traditional levodopa, however, more research is needed to explore its safety and long-term side-effects.

Cannabinoids

Cannabinoids are one group of hundreds of substances found in the cannabis sativa plant, known when dried as marijuana. There are more than 100 known cannabinoids.

Tetrahydrocannabinol (THC) is known for its psychoactive euphoric effects. Cannabidiol (CBD), another psychoactive, is associated with calming effects.

Medical marijuana is now legalized in more than 30 states, while recreational marijuana is legal in 15 states. Small studies have shown cannabis might have potential to ease some PD symptoms — such as anxiety, sleep disturbances, pain or gastrointestinal issues — but more research is needed to determine if there is any medical benefit.

Safety issues from use include potential medication interactions, delayed absorption and effects from edibles, and dangers of lung injuries from vaping. Side effects can also include low blood pressure, fatigue, dizziness, mood or cognitive changes, changes in balance, hallucinations and changes in weight.

The lack of quality control across products also has its dangers. No governing body regulates cannabinoid quality or labelling accuracy. Products can be contaminated with microorganisms, pesticides or other substances. Like nutritional supplements, studies show cannabinoid content differs between manufacturers and deviates from the label.

The Takeaway

Complementary therapies often focus on treating the whole person, rather than symptoms alone. They can inspire a sense of wellness or empowerment. Some therapies have even shown promise in Parkinson's studies, but research is still in the initial stages.

Discuss the pros and cons of any complementary therapy with your care team before beginning. When incorporating complementary therapies, only change one thing at a time. Monitor your progress. Noticeable changes can take time — give it anywhere from a few weeks to a month.

Explore the nonprofit U.S. Pharmacopeia (USP) scientific organization to discover supplement manufacturers who participate in USP's dietary supplement verification program. ConsumerLab.com also independently tests vitamins and nutritional supplements for quality and labelling accuracy.

Looking to amplify your wellness from home? The Parkinson's Foundation has everything you need to live better today. Join us weekly for PD Health @ Home.

For Debbie Polisky, bilingual nutritionist and wellness consultant, the recipe for successful Parkinson’s disease (PD) management is food, fun and fitness with a healthy dash of mindfulness.

Together with Barrow Neurological Institute, a Parkinson’s Foundation Center of Excellence, Debbie was awarded a 2021 Parkinson’s Foundation community grant to bring nutrition, mindfulness and lessons in Argentine Tango to Spanish-speaking people with PD in Phoenix, AZ in a safe, virtual environment.

The program, ¡Únete a la fiesta de TU autocuidado!, is a 12 month virtual Spanish-language series that provides Hispanic people with PD and their care partners with a safe community to express themselves weekly in ways that feel culturally familiar and reassuring. In 2022, two live events have been added (with COVID protocol) at two parks, in February and April, where participants dress up (as if going to a party), socialize and share several activities related to the program, including games related to mindfulness, nutrition (food bingo and food label reading) and Argentine Tango.

The use of Argentine Tango is a relatively new tool for engaging the PD community. Research has proven that it facilitates improvement of gait, tremors, flexibility, socialization, musicality and self-confidence for people with PD. Decreases in stress and anxiety and even better sleep outcomes have been reported.

“I started to learn Argentine Tango in 2019, in Argentina, when I visited my parents. My intensive Argentina Tango studies led me to professors who were experts in tango therapy and the use of social tango (vs. ballroom choreography) for health,” said Debbie.

The program starts with a “Positive Mindset Message” breath and movement practice and an Argentine Tango lesson, followed by a demonstration in preparing a simple, healthy recipe and a ‘cheers’ with a healthy drink.

Participants are encouraged to dress as if they were going to a party to contribute to the festive virtual atmosphere. “Hispanic people are used to socializing and place high importance on hugs, love, music, dance and food,” said Debbie. “When PD participants can share and realize they are not alone, both mind and body improve. Further, Argentine Tango creates a sense of feeling safe and loved in a tango embrace.”

There is a strong social media component as well, which is ongoing and connects participants daily. “We have created a close-knit virtual community, with 24/7 resources available to the PD participant and their care partner throughout the whole year,” said Debbie. “Participants inspire each other, share their daily stories, meals, exercises, thoughts and emotions, family photos, happy and sad moments, etc. That has made a real difference in their lives.”

Fostering strong social connections to combat the isolation and depression experienced by many people in response to the COVID-19 pandemic is central to the program’s goals. “The events of the last two years have increased levels of isolation, anxiety, depression, stress, and created reduced access to medical care and loss of self in the PD community,” said Debbie. “So much fear and negativity have been feeding our world. I wanted to use positivity and socialization to combat these issues, and to reach diverse PD communities.”

Debbie further drew inspiration from her late grandfather’s long journey with PD (he lived until 92) and her multicultural upbringing. “As a bilingual healthcare professional raised in Argentine-American culture, I was able to pull together both of my parent’s influences,” said Debbie. “My American Mom instilled in me a love of cooking, music and dance. My Argentine Dad was a cardiologist and a strong believer in stress management. Combining both science and creativity in this engaging program, and educating through entertainment, helps the PD participants make long-term lifestyle changes.”

“I feel this program has allowed us to live longer,” a program participant said. Another said, “Daily advice allows us to reflect and be conscious of our lifestyle actions. It allows us to express ourselves freely.”

Debbie is thankful for the Foundation’s community grant support. “The Parkinson’s Foundation has allowed for a very positive impact on participants; they join in even when they are feeling sad or worried,” said Debbie. “I want to thank the Foundation’s supporters for giving us a chance to share this program.”

Learn more about health and wellness programs virtually and in your area through your Parkinson’s Foundation chapter. For more Spanish-language resources, visit Parkinson.org/Espanol.

Discussions about Parkinson’s disease (PD) often mention a spouse or care partner who helps care for their loved one. However, it is also important to acknowledge that many people with Parkinson’s live alone. Read on to learn about the benefits and challenges of living alone with PD, and where you can find support.

Emotional Challenges of Living Alone

Social Isolation

Living alone with PD offers a sense of independence, but it may also feel isolating. Everyone experiences feelings of isolation and loneliness at times, but it is important to be able to identify when these feelings are negatively impacting your health.

If you experience feelings of apathy or fatigue for more than five days over a two-week period, you may have depression. Reach out to a medical professional to discuss a diagnosis and treatment options.

Accepting Your Situation

As a person living alone with Parkinson’s, your day-to-day experience is different from someone who lives with a spouse or care partner. It can be challenging to find resources that are tailored toward people who live alone. You may also struggle with feelings of inadequacy when comparing your life to those around you.

Remember that just as Parkinson’s disease affects everyone differently, each person with PD lives with and manages the disease in their own way. You and your experience are valid. There is a strong community of people living well alone with PD.

Staying Connected While Living Alone

Living alone does not mean you are alone — there are plenty of people who can help support you. Your network of support may include:

• Family
• Friends
• Neighbors
• Coworkers
• Therapist/counselor
• Medical team
• Support group
• Faith community

Pets can also provide support. Pets can also be registered as an emotional support animal, which can help ease anxiety and provide therapeutic support in public places.

There are many ways to stay connected to your existing support network or to make new connections. Try these options from home:

Tip: On days when you are struggling emotionally, try to talk to one person or accomplish one task. Making a connection or participating in an activity can help boost your motivation and decrease feelings of loneliness.

• Join a support group. Support groups allow you to share your experiences and engage with the PD community. Many support groups now offer virtual meeting options. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) to find a support group near you. Looking for an online network of support? Join PD Conversations.
• Volunteer or tutor. Giving back always feels good. Search VolunteerMatch to find opportunities to share your skills with others.
• Attend a Parkinson’s Foundation webinar. Register for a Wellness Wednesday event to gain strategies for living well with PD, or attend an Expert Briefing to get the latest updates on Parkinson’s research and care.
• Get involved in your local community. Attend a town meeting or an event at your local library.
• Participate in an online exercise class. Exercise is a great way to stay active while managing your PD symptoms. Our Fitness Friday series provides free, at-home workouts designed for people with Parkinson’s.
• Reach out to a chat service. Chat services like Well Connected allow you to engage in friendly conversation and build social connections.

Tips for Living Alone with PD

Living alone with Parkinson’s involves adapting to your circumstances. Here are a few tips for making everyday tasks easier to manage:

• Tailor your living space to your needs. One benefit of living alone is the ability to organize your own space. Place essential items where you can easily see and access them, so you can find what you need when you need it.
• Keep a pair of pliers handy. This multi-purpose tool can help assist you with opening jars or bags.
• Adjust your phone settings. There are various options that can simplify using a smartphone. Consider turning on these features to better control your phone and stay connected:
  • Touch Accommodations: This feature changes how the screen on your device responds to taps, swipes and other gestures.
  • Voice Commands: Voice assistants like Siri or Google Assistant reduce the need to use your hands for phone access. These tools can be used to launch applications, make phone calls and dictate text messages.
• Create a scheduling strategy. Schedule commitments around the times of day when you typically feel your best. Identify how many tasks you can usually accomplish on a “good” day or a “bad” day to avoid overscheduling. Set timers for your medications so you remember to take them on schedule.
• Reach out to your network of support. Ask for help with challenging tasks. Even if you are able to take care of yourself, shifting some responsibility can help you save energy for things you enjoy, like hobbies or social interaction.

Use our Home Safety Considerations checklist for more tips on how to stay safe while living alone with PD.

Planning for the Future

Living alone adds the responsibility of keeping yourself safe, both now and in the future. Starting the planning process early will ensure that you have control over important life decisions later on, such as choosing an assisted living facility or nursing home.

You may also consider signing a health care proxy form. This document names someone you trust as your proxy and allows them to make health care decisions for you if you are unable to speak for yourself.

It may be difficult to admit you need assistance after living independently for many years, but safety should always be the priority. If you have trouble moving around your space or accomplishing daily tasks, reach out to someone you trust to adjust your living situation.

Just because you live alone does not mean you are alone. The Parkinson’s Foundation is here to help you live better with Parkinson’s disease. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) for help finding resources near you.

Researchers are lasered in on slowing and someday stopping Parkinson's disease (PD) in its tracks. Explore what they've discovered, see what the future might hold and learn how some of the strongest weapons in the fight against Parkinson's progression are practices you can put in place today.

This article is based on Can We Put the Brakes on PD Progression, a Parkinson’s Foundation Expert Briefing webinar presented by Joash Lazarus, MD, Multiple Sclerosis Center of Atlanta.

PD symptoms stem from a protein, called alpha-synuclein, that clumps and accumulates in certain areas of the brain. This process depletes dopamine, which is critical to many body processes, including smooth, coordinated movements. Though dopamine declines for everyone who lives with Parkinson's, each person experiences disease symptoms differently.

Parkinson's symptoms can impact your life in numerous ways. Using a range of therapies and supports as needed can make all the difference. Personalized medicines, social support groups, mental health care and participation in clinical trials have all shown benefit to people with Parkinson's.

But is there a way to slow Parkinson's progression? While scientists are evaluating everything from medications to mindfulness practice for clues, they've discovered some of the biggest benefits start at home.

Healthy Eating and Regular Exercise: A Powerful Combo

Making nutritious food the mainstay of your meals and enjoying regular exercise has countless proven benefits. Studies show targeted nutrition may slow Parkinson's advancement. Eating a whole-food, plant-based, Mediterranean-style diet — including fresh vegetables, fruit and berries, nuts, seeds, fish, olive and coconut oils and more — may be linked to slower PD progression.

When you live with PD, exercise is also critical to optimal health. In fact, the Parkinson’s Outcomes Project shows at least 2.5 hours a week of physical activity can slow PD symptom progression. Research reveals regular exercise also shows neuroprotective effects in animal models with Parkinson's.

Exercise benefits people of all ages. As people get older, their risk for falls increase. For people with PD, the chance of falls is two to three times higher. Up to half of these falls can result in major injury. Exercise is the only thing to notably minimize a person’s risk of falling. Regular physical activity can also boost balance, improve heart and lung function, increase memory, thinking and problem solving, minimize depression and more.

Here's how to make exercise work for you:

• Maximize benefits by exercising moderately to vigorously 150 minutes a week.
• Plan a weekly routine that includes aerobic activity, strength training, balance and stretching exercises.
• Visit a physical therapist with Parkinson’s expertise for a functional evaluation and exercise recommendations.
• Reference this Parkinson’s Exercise Recommendations PDF in English or Spanish to help guide your physical activity plan.

Specialized Parkinson's movement and speech therapies, such as the Lee Silverman Voice Treatment (LSVT) BIG and LOUD programs, have also shown potential to lessen symptoms and slow PD progression.

Exploring Therapy Advances

People with Parkinson's take a variety of medications to manage symptoms. PD researchers have spent decades working to discover therapies powerful enough to slow or stop Parkinson's. Some of these include:

Rasagiline

The 2009 ADAGIO study looked at whether rasagiline — a monoamine oxidase-B (MAO-B) inhibitor (these can minimize the enzyme MAO-B's breakdown of dopamine and ease movement symptoms) — could put the brakes on disease progression for people in early-stage Parkinson's. The results suggested the possibility that a 1 mg daily dose of rasagiline might hold disease-modifying potential, but a 2mg daily dose did not.

Despite the study's uncertainties, it still showed ample evidence that rasagiline better controlled symptoms for people with PD, which is why it's used in concert with levodopa, currently the most powerful medication for Parkinson's and a treatment mainstay since its discovery in the 1960s.

Levodopa

Levodopa is a proven effective therapy throughout the Parkinson's journey. In the past, people often delayed starting levodopa therapy based on the myth that it would stop working after a few years. A 2019 study looked at whether starting levodopa earlier or later could change the course of Parkinson's. While research showed levodopa didn't slow PD, it proved starting the medication early on in Parkinson's is safe.

Deep Brain Stimulation

When people who live with PD begin to experience severe motor fluctuations, tremors and dyskinesia, involuntary muscle movements that can't be controlled by optimal medication doses, a surgically implanted deep brain stimulation (DBS) device can deliver electrical pulses to the brain, easing symptoms and boosting quality of life.

Results of a 2020 study proved people with Parkinson's disease can also get long-term symptom relief with DBS. The research shows people who have DBS therapy early on — coupled with optimal medication — generally do better with dyskinesia control. Despite the profound benefits of DBS, it's not proven to delay disease progression.

As researchers work to solve the Parkinson's puzzle, empower yourself by prioritizing your well-being. Wholesome food paired with regular exercise habits and comprehensive team-based treatment are the building blocks of a better life with PD.

Additional Information

• The Parkinson’s Foundation Exercise Guidelines for People with Parkinson’s offers tips to stay in top shape.
• Learn more about PD therapies in Medications: A Treatment Guide to Parkinson’s Disease.
• Get moving with Fitness Fridays — Parkinson's Foundation PD-tailored at home workouts.
• Dig in to why what and how you eat matters with Mindfulness: Nutrition and Mindful Eating, part of our Mindfulness Mondays series.

Parkinson’s disease (PD) can greatly affect your mental health and well-being. An array of non-movement symptoms related to Parkinson’s can impact how you feel. It can be overwhelming to try to address these mental health concerns.

Care partners can also experience negative mental health effects. The stress and unpredictability of Parkinson’s may take a toll on your mental health.

When managing Parkinson’s, utilize this article as a mental health guide to help you advocate for mental health; for yourself and your loved one. Top mental health concerns related to Parkinson’s can include:

• Anxiety
• Apathy
• Depression
• Thinking and cognitive changes

Advocating for Your Mental Health

It can be scary to address your mental health. Sharing your experiences may feel vulnerable. There are many ways to share your story and find resources for your emotional well-being. Here are some signs that you may need help with your mental health:

• Feeling tired even when you get a good night’s sleep
• Being easily irritated
• Not enjoying things you have enjoyed in the past
• Lack of motivation
• Feeling hopeless

These are signs that you may need some extra support. The next step is to share your needs with a healthcare professional. You can talk to your practitioner or a mental health professional directly about what is the best option for you.

Advocating for Your Loved One’s Mental Health

Trying to advocate for a loved one’s mental health may feel uncomfortable and awkward. It is normal to feel worried about invading their privacy or doing the wrong thing. Many times, a person may just need to be shown support and love when they are struggling. Here are signs that your loved one might need help:

• They stop answering your phone calls or texts
• Their mood and behavior change
• They make comments about feeling hopeless
• They stop doing things they have enjoyed in the past
• They ask for your help directly

What does advocating for another person’s mental health look like? Encourage them to seek help. Support them in the process. Share resources and celebrate their courage to talk about mental health.

How to Help Your Loved Ones Advocate for Themselves

It is not your responsibility to carry your loved one’s struggles, but there are many ways to support and encourage them in the process of getting help. Offer to go with them to their appointments. Show how thankful you are for their help as a care partner. Many people just need to know they are not alone in their mental health struggles.

It can be difficult to start a conversation with a loved one about their mental health. Here are some questions to ask a loved one struggling with their mental health:

• Would you like to talk about your mental health?
• How are you feeling?
• What are some things you can do to improve your mental health?
• How can I support you?

Help Promote Mental Health Awareness

Many people are afraid of being judged if they bring up mental health, however it is critical to advocate for your mental health and for a loved one’s mental health. There is also a need to remove the stigma around addressing mental health, and advocate for mental health awareness — especially around a disease that affects cognition, mood and sleep.

Here are ways you can promote mental health:

• Share your story with others. Choosing to tell your story can be inspiring and encourage others who may be struggling. Submit your PD story.
• Attend mental health events, like our “Mindfulness Monday” PD Health @ Home weekly events.
• Discuss mental health with your support group or in PD Conversations.
• Read more about mental health in our books about Cognition, Mood and Sleep.
• Listen to our Substantial Matters Podcast episodes about mental health.

Mental Health Resources

• 6 Helpful Tips for Finding Your Ideal Mental Health Counselor
• Answering the Top Care Partner Questions About Mental Health
• Mental Health Tips for Cognition, Mood and Sleep
• Tips for Talking to a Parkinson's Doctor about Depression

Mental health can be a difficult topic to address, but it is worth advocating for your needs. There are many ways to advocate for your mental health, your loved one’s mental health, and mental health awareness in general.

Not sure where to start? Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for help finding mental health resources and wellness events taking place near you.

Social isolation is one of many significant challenges for people with Parkinson’s disease (PD) who are also part of the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) community.

“Parkinson’s Pride: Engaging the LGBTQIA Community,” is a first-of-its-kind program funded by a 2021 Parkinson’s Foundation community grant. The program aims to address the community’s unique needs while shaping a new narrative around the group’s shared identities.

“The Parkinson’s Foundation believes in health equity for all in the Parkinson’s community,” said Alyssa Boyle, administrative and community engagement coordinator at the Parkinson’s Foundation. “We are proud to provide funding through community grants like this one that strengthens support for LGBTQ+ people with Parkinson’s.”

Based at Parkinson’s Foundation Center of Excellence Beth Israel Deaconess Medical Center in Boston, MA , “Parkinson’s Pride” hopes to model effective care and support structures for LGBTQ+ people in PD healthcare settings.

“This grant supports a bold and ambitious project that we hope will lead to not only strong community for participants, but will also inform better care for LGBTQ+ people with Parkinson’s across all of the Foundation’s Centers of Excellence,” said Lissa Kapust, project lead and social worker in the Cognitive Neurology department of Beth Israel Deaconess Medical Center.

Of the limited LGBTQ+ Parkinson’s studies, little is currently known about PD experience, care and treatment needs. Researchers have found that discrimination and stigma may hinder knowledge, diagnosis and involvement with multidisciplinary approaches to treatment.

“Sparse literature on LGBTQ+ and PD points to worse health outcomes and unique risks,” said Lissa. “These often underserved individuals may suffer from inadequate care and attention from the medical sphere, with higher rates of depression, anxiety, isolation and body image issues compared to the general population. Understandably, PD can exacerbate these issues.”

Program activities aim to help combat these known challenges through monthly group discussions and workshops. The program helps “bring light in the darkness” for participants, helping them integrate various facets of their identities and build community. A variety of topics are covered, ranging from managing finances, planning for long-term housing, social support, intimacy issues and nutrition planning.

In addition to monthly meetings, participants have the option to engage in workshop to improve overall wellbeing, including writing, music therapy and exercise. Expert speakers provide specialized education and resources, including navigating disclosure, trust and factors that can challenge engagement with care providers.

Participants will shape a “Parkinson’s Pride” virtual celebration event, in conjunction with June Pride celebrations across the U.S. “It is intended to bring our community together, highlighting our accomplishments and promoting positive social media images of people with PD from the LGBTQ+ community,” said Lissa.

Hyam K is a “Parkinson’s Pride” participant who believes in the program’s goal. "As an out and proud gay man now in my 60s, I've long reflected on how our LGBTQ+ community has successfully ushered in a new period of acceptance and understanding through hard-fought decades of enlightened education and visibility,” said Hyam. “It's therefore natural, in that tradition, that I now regard “Parkinson's Pride” as extending our historic continuum even further, by expanding recognition, appreciation and opportunities for those of us with PD."

The hope is that “Parkinson’s Pride” can be replicated in other Parkinson’s Foundation Centers of Excellence. The grant will also fund a video that will highlight key components of the program and several participant interviews.

With the help of participant engagement, Beth Israel Deaconess will create a preliminary set of provider guidelines for LGBTQ+ cultural competency in Parkinson’s.

“Our view could be limited to our location. However, the Parkinson’s Foundation has expanded our perspective, allowing us to develop personal relationships that extend far beyond Boston,” said Lissa. “The effort to make lives better for people with Parkinson’s is energized by this larger reach.”

Lissa is thankful for the Foundation’s support. “The backing from the Parkinson’s Foundation is essential for the success of the program; the reputation of the Foundation has a positive influence at so many levels. The Foundation’s logo on all grant communications conveys the mission and values that are at the core of the work.”

“Parkinson’s Pride” is offered by Beth Israel Deaconess Medical Center and the LGBT Aging Project at Fenway Health, with support from the Parkinson's Foundation. For more information or to enroll, please contact Mikayla Hyman at mhyman@bidmc.harvard.edu or 202-495-3327.

Learn more about Parkinson's and the LGBTQ+ community.