What is Parkinson’s Disease? Why it is important for LGBTQIQAP2+ people to care about it?
by Kelly Hutton, Registered AMFT
Kelly Hutton, Registered AMFT
Parkinson’s Disease (PD), a progressive brain disorder that attacks the nervous system, affects 10 million people worldwide, 1 million in the US, and 90,000 people ages 21-60+ are newly diagnosed every year (source: Parkinson’s Foundation, 2022). The average age of diagnosis is 60 years old, and each person experiences PD symptoms differently. LGBTQIPA2+ are among the people who live with PD. However, in addition to the many challenges to accessing consistent, affordable, knowledgeable, and affirming queer and trans health care, PD is not commonly discussed in our queer and trans communities. Yet the mental and physical health of both our elders diagnosed with Late Onset PD, and our younger folks under age 60, who are diagnosed with Early Onset PD starting at age 21, are at stake.
So…this is a call to action!
It is time we increase the visibility of PD, squash the stigma of getting screened, and start talking about PD as an intergenerational behavioral health issue that queer and trans individuals and chosen families should prioritize. It’s up to us in LGBTQIPA2+ communities and our allies to empower and educate ourselves and others, and continue to look out for each other so that LGBTQIPA2+ communities thrive. Psychotherapists, myself included, are here to help and are among the most responsible for advocating for Parkinson’s Disease awareness, clients’ overall health, and for adapting inclusive and creative therapy tools to engage clients with PD and/or long-term medical diagnoses (Iwasaki, M., et al., 2018; Jürgens, T., et al., 2017; Menkin, E.S., 2007; Wallace, C.L., 2020). It also means that lots of people in this world, perhaps you, dear reader, or your loved ones, have PD and are adapting to progressing symptoms. But you don’t have to be silent! You don’t have to do it alone!
PD invisibility - Why?
There are many reasons for the invisibility of PD in LGBTQIPA2+ communities. Historically the focus on LGBTQIAP2+ medical and behavioral health interventions have been for the most part on suicidality, drugs, addiction, bullying, and autoimmune diseases such as HIV and AIDS. These interventions have been and continue to be extremely life saving important work and research for which I have unwavering respect and gratitude. While the Parkinson's Foundation is slowly trying to help change this narrative, there haven't been a lot of examples in the media of LGBTQIPA2+ people with different disabilities or long-term illnesses at any age. In fact, the only celebrity I can think of who has PD is Michael J. Fox. But he is from Generation X, cisgender heterosexual, and not part of LGBTQIPA2+ communities. We also live in a judgemental anti-aging culture that is very much prevalent in queer and trans communities. From personal experience and among many of us, it's not uncommon for queer and trans people to have a hard time imagining themselves living past age 35, even if we have chosen families who take care of each other (Jackson Levin, N., et al., 2020). And for those who can imagine living a long life, it's hard to grasp in young adulthood that you have to adjust to life after a major lifelong diagnosis and life may not turn out the way you envisioned.
Moreover, there still exists fear of coming out as gay, lesbian, bisexual, queer, intersex, polyamorous or ethically non-monogamous, pansexual, asexual, two spirit, non-binary (NB), or transgender to health providers. It is common for patients and their partners to either experience first-hand or they fear that they would be separated from each other in medical facilities, not be treated with dignity, or they are afraid to come out as married (Candrian, C., & Cloyes, K.G., 2020; Stein, G.L., et al., 2020). Many trans, non-binary, and gender non-conforming (GNC) patients may worry that having PD will prevent them from receiving medical interventions for gender affirming care such as cross-sex hormones and/or gender affirming surgeries (Henry, et al., 2020). All of these fears are valid and very, very real! It makes a lot of sense people would feel that way because of the historical discrimination, transphobia, and subsequent trauma patients face in the medical health care system. And imagine me exclaiming on mountain tops for all the universe to hear,
“Having a Parkinson’s Disease diagnosis does not preclude you from receiving the gender-affirming care for medical transition you want and deserve!”
We are happy to support you in getting gender-affirming care! Click here to contact us at Waves, A Psych Corp for support or by clicking the button.
Whether you have Early-Onset PD or Late Onset PD, symptoms such as dementia and slowing of speech can increase stress and lead to mood disorders such as depression and anxiety. It can be overwhelming to think about even if there are many options for living a meaningful life and receiving medical treatment for PD. Anticipatory grief can also be a real doozy. The mental health challenges can be a very isolating experience. Therefore, it is imperative that we LGBTQIPA2+ folks learn more about PD. Maybe you’ll recognize the following symptoms for yourself or in someone you care about, which could help that person get the medical and behavioral health treatment they may need.
Before I dive into PD symptoms, I must be patently clear — I am not a medical doctor! Therefore, I cannot and will not provide medical advice here because it’s out of my scope of practice. I encourage you, dear reader, to ask a doctor more about symptoms and treatments for PD if you have questions about it. However, I offer information and I can speak to my scope as a marriage/couples and family therapist with experience working with patients, primary caregivers, couples, and families (including chosen family) who are living with long-term illnesses or terminal illnesses or interfacing with them.
So, first step, Parkinson’s Disease 101? What are the symptoms? What can you do about it?
Parkinson’s Disease (PD) is a long-term degenerative brain disorder that adversely affects both movement, causing tremors or loss of balance and slowing of gait, and non-movement functionality such as mental health and cognitive challenges (Parkinsons Foundation, 2021a; Parkinson's Foundation, 2021b). PD is caused by dead or damaged nerve cells in the part of the brain that controls movement, the basal ganglia (NIH https://www.nia.nih.gov/health/parkinsons-disease). Dopamine decreases in the brain when the nerve cells are harmed or die, which causes symptoms. The average age of someone diagnosed with PD is 60 years old, but early onset PD, which is when PD is diagnosed earlier in life, has been diagnosed to people ages 21-50 years old.
Non-movement symptoms are both cognitive and physical changes that present differently as the disease progresses. Cognitive symptoms include dementia, hallucinations, apathy, depression, and anxiety. Physical symptoms present as, but are not limited to, loss of smell, pain, small handwriting, sleep disorders, speech and swallowing problems, very soft/quiet speech, urinary incontinence, and dizziness (Parkinson’s Foundation, 2021b).
One can have any of those “Parkinsonian” symptoms, but two of four main physical symptoms must be present over time for a formal diagnosis:
“Shaking or tremor
Slowness of movement, called bradykinesia
Stiffness or rigidity of the arms, legs or trunk
Trouble with balance and possible falls, also called postural instability (Parkinson’s Foundation, no author listed, 2021).
PD over time affects patients’ overall quality of life such as capacities to access, process, verbalize thoughts and emotions over prolonged care (Huse, et al., 2020). PD severity affects social functioning and can be correlated with anxiety, depression, and cognitive impairment (Perepezko, et al., 2018). These patients over time acquire challenges in speech such as stuttering or a softer voice, which can affect communication with others. Therefore, patients, caregivers, given and chosen family, partners, and spouses of patients can learn to adapt and remain connected through integrating adjustments in verbal expression, play music new and old with patients, and stay active physically as recommended by the patient’s medical team. Try dancing with your PD patient/partner/loved one, attend support groups together, and leave space in conversation for vulnerability about and patience for how PD symptoms are affecting the patient (Goberman, et al., 2010).
Other tips: Continue to educate yourself. Get interdisciplinary care coordination that would involve support groups, financial guidance, and spiritual/religious care/resources (Prizer, et al., 2020). Special attention to education and care coordination is especially important given social distancing during the Covid-19 pandemic, which has had adverse implications on the social functioning of PD patients (Feeney, et al., 2021; Rosa, et al., 2020).
For LGBTQIPA2+ folks, chosen family and community have been lifelines for many. Therefore, it's even more important to stay connected to affirming and knowledgeable communities when you have PD however you are able, in person or virtually (Feeney, et al., 2021). If and when mobility becomes challenging as the disease progresses, you might want to seek out in-home therapists who do house visits for family therapy or seek out resources for in-home visitations.
Limitations to research, an intersectional & anti-racist lens:
I must be transparent again – there are limitations in the information I’ve provided on PD. In 2021, I researched PD and couples for an assignment in my Marriage and Family Therapy program as well as to learn how to best support my hospice patients, couples/partners, and caregiver clients as a hospice grief and bereavement counselor. At that time there was little to no academic behavioral health research in the literature of LGBTQIPA2+ health on dementia, and none on Parkinson’s Disease for sexual and gender minorities (Valenti, K.G., et al., 2020). Moreover, what little was explored in research did not include people of color as subjects in their studies; therefore, findings could not be generalized for the entire United States population. When I came across this, I was mad, frustrated, and sad, and I thought, “Welp, we LGBTQIPA2+ folks and the intersections of race, ethnicity, gender, sexuality, (dis)ability, and socioeconomic status are excluded and made invisible once again!” I wasn’t surprised, but it still gets me every time.
And, still, there is always, always hope. Like Harvey Milk used to say, “You gotta give ‘em hope!” So, how can Kelly Hutton, a grief counselor, help you? I would be honored to support and walk alongside you and/or your loved ones shoulder-to-shoulder on your paths to communicate in new, uncharted ways. I am a Registered Associate Marriage and Family Therapist (R-AMFT) dedicated to working with patients who have PD and other long-term illnesses, as well as partners, spouses, given and chosen family members, friends, including caregiver-patient relationships – all of whom may not know where to start in mental wellness. This is 100% understandable because it may be overwhelming to learn to adjust physically, emotionally, cognitively, and all while experiencing anticipatory or hidden grief. As a former hospice grief and bereavement counselor, I love providing safe spaces to talk about end of life transitions, death, dying, all factors of grieving, and exploration of identity, and especially among LGBTQIPA2+ teens, adults, and all who love them. In all, I believe you are the expert of you. So, we’ll begin as a team with wherever you are in experiencing your unique relationship with PD and your symptoms. I use a person-centered, trauma informed, and culturally aware approach with talk therapy (CBT, EFT, Gottman, Solution Focused, Narrative) or Eye Movement Desensitization (EMDR) treatment. You can expect laughter among the tough moments, and likely creative arts integrated into sessions as appropriate.
To start receiving my support, sign up for a FREE 15-minute video consultation at https://doctorabi.clientsecure.me/request/clinician.Click on my name, Kelly Hutton, AMFT, enter your information, and request an appointment time that works for you.
Video communication can be challenging for people with PD, so I offer these useful tips for using video communication written by Marti Fischer: https://www.michaeljfox.org/news/communicating-over-video-three-tips-people-parkinsons
If video is not at all possible for you, I invite you to call or text our office at 619-403-5578. You may also e-mail Waves’ office at office@wavespsych.com. They will make sure your e-mail gets to me. I look forward to meeting you soon.
Resources
The Gay Lesbian Medical Association directory. “The Health Professionals Advancing LGBTQ Equality (previously known as the Gay & Lesbian Medical Association) is the world's largest and oldest association of lesbian, gay, bisexual, transgender and queer (LGBTQ) healthcare professionals.” https://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageId=939&grandparentID=534&parentID=938
Parkinson’s Foundation on finding care for LGBTQ+ individuals https://www.parkinson.org/living-with-parkinsons/finding-care/lgbtq
Parkinson’s Foundation current statistics on PD. https://www.parkinson.org/understanding-parkinsons/statistics
References
Candrian, C., & Cloyes, K.G., 2020. She’s dying and I can’t say we’re married: End of life care for LGBT
older adults. Gerontologist, 2020, Vol. XX, No. XX, 1–5 doi:10.1093/geront/gnaa186
Feeney, M. P., Xu, Y., Surface, M., Shah, H., Vanegas-Arroyave, N., Chan, A. K., Delaney, E.,
Przedborski, S., Beck, J. C., & Alcalay, R. N. (2021). The impact of COVID-19 and social distancing on people with Parkinson’s disease: a survey study. NPJ Parkinson’s Disease, 7(1), 10. https://doi.org/10.1038/s41531-020-00153-8
Goberman, A. M., Blomgren, M., & Metzger, E. (2010). Characteristics of speech disfluency in Parkinson’s disease. Journal of Neurolinguistics, 23(5), 470–478. https://doi.org/10.1016/j.jneuroling.2008.11.001
Henry, R. S., Perrin, P. B., Coston, B. M., & Witten, T. M. (2019). Transgender and gender non-
conforming adult preparedness for aging: Concerns for aging, and familiarity with and engagement in planning behaviors. International Journal of Transgenderism. https://doi.org/10.1080/15532739.2019.1690612
Menkin E. S. (2007). Go Wish: a tool for end-of-life care conversations. Journal of palliative
medicine, 10(2), 297–303. https://doi.org/10.1089/jpm.2006.9983
Iwasaki, M., Di Bianca, M. S., & Nicholas, D. R. (2018). A forbidden topic at the end of life:
“What about you after I’m gone?” Psycho-Oncology, 27(11), 2665–2667. https://doi.org/10.1002/pon.4772
Jackson Levin, N., Kattari, S. K., Piellusch, E. K., & Watson, E. (2020). “We Just Take Care of
Each Other”: Navigating ‘Chosen Family’ in the Context of Health, Illness, and the Mutual Provision of Care amongst Queer and Transgender Young Adults. International Journal of Environmental Research and Public Health, 17(19). https://doi.org/10.3390/ijerph17197346
Jürgens, T., Buhmann, C., Hidding, U., Gerloff, C., Dogac, S., & Vettorazzi, E. (2017). The
impact of Parkinson disease on patients’ sexuality and relationship. Journal of Neural Transmission, 124(8), 983–996. https://doi.org/10.1007/s00702-016-1649-8
The Parkinson's Foundation, 2021. Bradkinesia (slowness of movement).
https://www.parkinson.org/understanding-parkinsons/movement-symptoms/bradykinesia
Perepezko, K., Hinkle, J. T., Shepard, M. D., Fischer, N., Broen, M. P. G., Leentjens, A. F. G.,
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Prizer, L. P., Gay, J. L., Wilson, M. G., Emerson, K. G., Glass, A. P., Miyasaki, J. M., & Perkins,
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Rosa, W. E., Shook, A., & Acquaviva, K. D. (2020). LGBTQ+ inclusive palliative care in the
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