If you belong to both the Parkinson’s and LGBTQ communities, you or someone you know might benefit from an opportunity to participate in the online support group, Parkinson’s Pride. If you’re interested in applying to be a participant, or would like more information, you can click here to register. You can also contact Mikayla Hyman at mhyman@bidmc.harvard.edu or call Mikayla Hyman at 202-495-3327. The early application deadline is September 30th, 2021.
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For over a decade, the Wellness Works team has created innovative programming for people with Parkinson’s. We have created specialized exercise programs, educational events, artist workshops, and more. On December 17th, 2020, four people with Parkinson’s who identified as LGBTQ+ shared in a focus group their unique experience. In response to the feedback, we heard we wrote a grant “Parkinson’s Pride” and were funded for this program by the Parkinson’s Foundation. Parkinson’s Pride: an innovative series of free virtual monthly meetings where LGBTQ+ people with Parkinson’s can connect with others, learn about valuable resources, and share experiences.
At this December focus group, one participant spoke about how “isolating” it was to be part of the Parkinson’s community as well as LGBTQ+. Each of these participants were part of two, very separate communities that are marginalized. Due to a history of stigma and discrimination, LGBTQ+ populations have faced more chronic health conditions while receiving inadequate care and attention from the medical sphere.
Little research has been done to understand the specific needs of those who are LGBTQ+ and have Parkinson’s. Some studies suggest that LGBTQ+ adults have rates of disability two times that of the general population. People who identify as LGBTQ+ are more likely to suffer from anxiety and depression, which could impact the care they require for Parkinson’s. While there isn’t much out there, Anissa Mitchell’s blogpost or this Davis Phinney webinar are a good place to start.
One participant in our December focus group said, “part of the ability to ameliorate the pain we experience is reaffirmation with communities that support us” and that is the goal of Parkinson’s Pride.
This virtual program at Beth Israel Deaconess Medical Center guides participants to resources, workshops, discussions, and a chance to make a difference by connecting with other group members. We are offering this new initiative beginning in October 2021 and running through June of 2022. The program is funded by a community grant awarded by the Parkinson’s Foundation. Parkinson’s Pride is a trail-blazing initiative where participants will lead the way for similar programs to spread across the country.
Parkinson’s Pride will include discussions of topics such as: long term planning, improving intimacy, and Parkinson’s specific nutrition. Participants can attend specially designed workshops focused on music and resilience, “Finding Your Voice Through Writing,” or a specialized exercise program. We will also have time for individuals to share their health care experiences as LGBTQ+ people living with Parkinson’s. This will allow us to develop practice recommendations for Parkinson’s health care providers who care for the community. As a group, we will also develop and participate in a national Parkinson’s Pride event in June 2022.
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Repeat: If you belong to both the Parkinson’s and LGBTQ communities, you or someone you know might benefit from an opportunity to participate in Parkinson’s Pride. If you’re interested in applying to be a participant, or would like more information, you can click here to register. You can also contact Mikayla Hyman at mhyman@bidmc.harvard.edu or call Mikayla Hyman at 202-495-3327. The early application deadline is September 30th, 2021.
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PS To see other gay-related posts on the Parking Suns website, click here.
