Happy Pride Month! PCLA is committed to serving all members of the Parkinson’s community, especially those who are marginalized or face discrimination in the healthcare system.

Members of the LGBTQ+ community experience unique barriers in healthcare, often leading to delays in diagnosis and improper treatment of symptoms.

As of 2022, it’s estimated there are nearly 100,000 LGBTQ+ people living with Parkinson’s. With an aging population, it’s anticipated the number of LGBTQ+ individuals with PD will only increase in the near future, making research that much more critical.

Here’s how PD impacts the LGBTQ+ community and tips on managing Parkinson’s as an LGBTQ+ individual.

LGBTQ+ in Healthcare

LGBTQ+ individuals have experienced a history of discrimination in medicine. Even as gay and transgender rights are more openly celebrated, the stigma for medical treatment remains, leading many to avoid important and sometimes critical healthcare.

Transgender people, in particular, are frequently overlooked in the medical community, with 50% reporting prior mistreatment when receiving medical care.

Additionally, certain symptoms of PD, such as stopped posture or a softened voice, may contribute to an increased incidence of gender dysphoria—a feeling of distress occurring when someone’s gender identity doesn’t match the sex they were assigned at birth.

This, combined with an increased risk of anxiety and depression for LGBTQ+ individuals and a lack of widespread knowledge of gender-affirming care, can contribute to complicated medical journeys for these individuals.

Anxiety & Depression in LGBTQ+ Individuals

The LGBTQ+ population is 2.5 times more likely to experience anxiety, depression, and substance misuse compared to their straight counterparts. Additionally, over 50% of people with PD will experience anxiety and depression.

Because of the heightened risk of mental health issues, it’s critical for these individuals to engage with medical professionals who make them feel welcomed and respected and to maintain a network of trusted individuals.

Gaps in LGBTQ+ Research

As is the case across all medical fields, LGBTQ+ individuals are severely underrepresented in PD research. There have been few clinical, epidemiological, and translational studies supporting optimized treatment.

Research into the interplay of hormones and Parkinson’s is of particular importance. While testosterone has not been found to influence PD, there’s conflicting information about the impact of estrogen on Parkinson’s symptoms, with some studies suggesting it may even improve certain symptoms.

Because many transgender people are dependent on hormone therapy, studying the relationship between hormones and PD is especially significant and could ultimately help inform more effective treatment.

For the future of Parkinson’s, there is a critical need to expand research populations and more directly study the impact of Parkinson’s on these individuals.

Tips for Managing PD as an LGBTQ+ Individual

Facing a PD diagnosis is difficult for anyone, let alone someone experiencing discrimination in medical settings. Here are our top suggestions on how to advocate for yourself to get the best treatment as a member of the LGBTQ+ community.

Remember: treating PD symptoms early is critical to living an enriching life, and you deserve the best care.

1. Find a Doctor You Trust

Finding a healthcare provider you trust is paramount. This involves more than just medical expertise; it requires a doctor who respects and understands your identity.

For LGBTQ+ individuals, this means seeking out providers who are knowledgeable about the unique health concerns and social stresses faced by the LGBTQ+ community.

Check out the LGBTQ+ Healthcare Directory here for a free, searchable database of medical professionals sensitive to the needs of LGBTQ+ people in the US and Canada.

2. Engage in Research

Engaging in research can empower you with the latest information and advancements in Parkinson’s disease treatment.

Being proactive about your health involves staying updated on new therapies, medications, and clinical trials that may benefit you. Participating in research studies can also provide access to cutting-edge treatments not yet widely available.

Additionally, research involvement helps to advocate for the LGBTQ+ community in medical studies, ensuring that treatments are effective and inclusive for everyone.

Reach out to PCLA to find out how you can participate in research and stay informed about new developments.

3. Prioritize Mental Health

The stress of living with a progressive disease, combined with potential discrimination or social isolation, can significantly impact mental health. Prioritizing mental health involves seeking regular support from mental health professionals who are sensitive to LGBTQ+ issues.

Therapy, support groups, and stress management techniques such as mindfulness and exercise can help maintain mental health. It’s essential to find a therapist who is LGBTQ+ affirming and experienced in dealing with chronic illnesses.

See our Guide to Better Mental Heath here for more info!

4. Build a Support Network

Having a solid support network can make a significant difference in managing Parkinson’s disease. This network can include family, friends, healthcare providers, and support groups.

For LGBTQ+ individuals, finding a supportive community that understands your unique challenges is crucial.

Check out PCLA’s full calendar of support groups here.

5. Stay Physically Active

Physical activity is essential for managing Parkinson’s symptoms and improving quality of life. Exercise can help maintain mobility, balance, and strength, and has been shown to positively affect mood and overall well-being.

Find a list of indoor exercises and outdoor exercises here to get started!

Always consult your healthcare provider before starting a new exercise regimen to ensure it’s safe and appropriate for your condition.

We’re Here to Help!

PCLA is dedicated to providing resources and support to all members of the Parkinson’s community.

Check out our monthly support group offerings here, keep an eye on our YouTube channel for the latest research in our Let’s Talk Parkinson’s series, and don’t hesitate to reach out to us for further support!