Guest Post: Health Disparities within the LGBT Parkinson’s Population

A Healthcare Professional’s Perspective on Health Disparities within the LGBT Parkinson’s Population

– Anissa Mitchell, LCSW 

I am a licensed clinical social worker who has spent the last eight years working with people with Parkinson’s, their care partners and families. In those eight years, I have heard stories about, read about and even personally witnessed a variety of healthcare disparities within the PD population that greatly concern me. Some of these concerns are shared by the greater Parkinson’s community:  a lack of movement disorder specialists; a general lack of knowledge about PD that then impacts diagnosis, treatment, and care in hospital and other institutional settings. However, I have noticed another layer of disparity that few seem to be discussing, and that is the care and consideration of those in certain minority groups, including African American patients and those in the LGBT community.

At a recent social work conference, I presented the various healthcare challenges patients with Parkinson’s face and disparities within Parkinson’s disease diagnosis and treatment. I easily found information pertaining to the general lack of available neurologists and movement disorder specialists (e.g., according to Michael J Fox and ABBVIE’s Partners in Parkinson’s survey, only 28 percent of the patients they surveyed regularly see a movement disorder specialist). It was also easy to find literature that discussed the increased rate of and complications from hospitalization of Parkinson’s patients, and that documented the general paucity of knowledge in how to care and manage a person with Parkinson’s who has symptoms most people don’t even realize are part of the disease. And while I feel it is underserved in the literature and in our current healthcare initiatives, I could find some limited information regarding the healthcare disparities among the African American Parkinson’s patients.   These include greater symptom severity, later diagnosis, reduced inclusion in research, and fewer patients on anti-Parkinson medications.

However, I found no literature about Parkinson’s in the LGBT community! Not one article!

I can honestly say I have had little exposure to, or involvement with, the LGBT community aside from some LGBT family members. But, from a professional perspective within the healthcare system, I have seen almost nothing. In the eight years that I have worked with Parkinson’s patients, only two LGBT couples came to our support programs and then not regularly.

I began to wonder how we may be contributing to the exiting disparities. I started digging around, and this was when I realized that there are no medical journal articles addressing the care considerations of the LGBT Parkinson’s patient. I couldn’t find anything on the web or social media other than this blog post on Parking Suns and one PD community social media site that had a single posting over a year ago by a MTF transgender person with Parkinson’s looking for another transgender person who could relate to the challenges of living with body transformation while dealing with PD.

Surely, more LGBT people out there are facing the challenges of Parkinson’s. I know how difficult it is for people to live and cope with the disease and how isolating it can be in the straight community, but those who may already feel isolated and judged are at even greater risk.  Nobody, it seems, is even talking about this!  This is why I feel this topic needs to gain more attention.

Approximately three million people over the age of 50 (expected to grow to seven million by 2030) in the US are LGBT (1). Parkinson’s affects approximately 1 out of every 100 people in this age range, so, it is safe to estimate that approximately 30,000 LGBT Americans have Parkinson’s disease. In the general population we see delays in diagnosis and lack of education about the disease. The median time from onset of noticeable Parkinson’s symptoms to presentation to a physician is 11 months (2). However, in several articles I found that LGBT people are commonly less likely to seek medical care, and they have higher rates of general poor health and mental distress (1).

Some specific issues:

Mental health: People with Parkinson’s have high rates of depression and anxiety, with statistics ranging from 50-70% of all patients. Gay, lesbian, and bisexual individuals experience more depression and anxiety than their heterosexual counterparts and are more likely to attempt suicide (3), which means that Parkinson’s adds an additional burden to an already at-risk population.

Body image/weight: Eating disorders and body image are thought to be higher among gay and bisexual men than heterosexual men (3). However, body image and weight are significant problems in the general PD population. Initial weight gain from medications, followed by significant weight loss in the later stages of the disease is quite common. Symptoms such as tremors, gait disturbances, drooling and speech problems often contribute to self-conscious feelings.  Those who are already sensitive about their body image may have increased stress due to the changes caused by Parkinson’s.

Isolation: Parkinson’s is an isolating disease for people with PD as well as their care partners. Physical symptoms, depression, anxiety and lack of support contribute to the problem; however, these experiences are compounded in the LGBT population. The LGBT community is at greater peril because of issues such as discrimination and social stigma; a possible lack of larger LGBT community nearby; an increased likelihood the individual is single, living alone and childless, and more likely to face poverty and homelessness.

While I’m only scratching the surface regarding the issues the LGBT Parkinson’s patient faces, this conversation needs to be continued and amplified. I tried reaching out to the local LGBT community center to see if their older group would be interested in some basic PD education, but I was quickly shot down, much to my surprise and disappointment. How can I as one solitary person help this conversation grow in the greater PD and LGBT community if I cannot even reach my local one? I feel like the woman in the story of the starfish, where there are thousands of starfish washed up on the shore and she tries to throw as many back out to sea as possible, which seems like a pointless and impossible task.  However, a difference is made for those starfish that make it back out to sea. I just need to make a difference to one.  And then another.  And then more.

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(1) “The Facts on LGBT Aging.” Retrieved from https://www.sageusa.org/wp-content/uploads/2018/05/sageusa-the-facts-on-lgbt-aging.pdf

(2) Breen, David P., Evans, Jonathan R, Farrell, Krista, Brayne, Carol, and Barker, Roger A. (2013) “Determinants of delayed diagnosis in Parkinson’s disease.” J Neurology DOI 10.1007.s00415-013-6905-3

(3) “Understanding the Health Needs of LGBT People.” March, 2016. Retrieved from http://www.lgbthealtheducation.org/wpcontent/uploads/LGBTHealthDisparitiesMar2016.pdf

P.S. from Bruce at Parking Suns:  On the same day that I received Anissa’s article, a different Parking Suns reader named Kevin left the following comment on one of my other gay-related posts:

I am gay and was diagnosed with Parkinson’s last fall (2017), which was not a great day for me. But, having faced other challenges and weathered them, I knew I would carry on as best I could. I have fond memories, if that isn’t perverse, of being in HIV/AIDS support groups in the ’80’s, which somehow brought together some wonderful souls who made me laugh more than i ever have. Now, I’m thinking of Parkinson support groups, and wanting it to be as supportive as that previous experience, but doubting very much if being gay will be accepted. Still, it is good to find your presence on the web, and proves to me that all kinds of folks are facing Parkinson’s, which I already knew!