Gay, With Parkinson’s.  What are the Issues?

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Actually, I hope this is just the start of a conversation about what it’s like being LGBTQ and having Parkinson’s disease.  Full disclosure:  I’m gay, and I was diagnosed with PD about four and a half years ago.

Background on the list below:  When I went to the World Parkinson Congress (WPC) this September, in the months preceding the event I signed up for the WPC Buddies Program.  I filled out a questionnaire and submitted it to the program; they matched me up with another person with Parkinson’s who would be at the Congress and who shared some of my characteristics and interests.  It was a great matchup.  My buddy was Geoffrey Webb, and he attended the Congress with his husband, Donald Beck.  We spoke on the phone a few times before the Congress, then hung out a lot once we arrived in Portland.  (See photo above, taken at the opening ceremony.  And click here to learn more about my buddy Geoffrey and his husband Donald.)

We went out for dinner one night with another gay couple, Kevin Mason and Dan Carlentine.  During dinner, we talked about the special issues gay people might face if they also have PD.  I took notes, and present the list of issues here.  Below the list, you’ll see that I’ve fleshed some points out with subsequent research and a personal recollection.

If you’d like to add to this list, or have any other comments or questions, please type your thoughts at the bottom of the screen.

Note:  I’m not saying these things will happen to every Parkie in the LGBTQ community.  Nor am I saying non-LGBTQ people won’t face the same issues.

Anyway, here we go!

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Issues for LGBTQ Parkies

• Many LGBTQ people live alone, are alone. Although they may have close friends, they have no partner (married or otherwise), and no children.  They may be estranged from the rest of their family, too (parents, siblings, cousins).  This means they may have to face Parkinson’s on their own, especially as they grow old with PD.

• If an LGBTQ person does have a partner, and the partner dies first, the surviving Parkie may have to face the rest of life alone. In addition, in many parts of the world, including the USA, the financial rug may be pulled out from under the now-single Parkie if, say, the government doesn’t recognize the relationship (and thus doesn’t grant the surviving spouse Social Security benefits that the survivor in a heterosexual marriage would receive*); and/or the deceased partner’s family intervenes and seizes control of the deceased partner’s estate.

• Many LGBTQ people are isolated (we don’t all live in urban gay meccas with a vibrant LGBTQ community) and not hooked into social programs or community resources that are already set up. Or they may live in a part of the world where such resources either do not exist or do not welcome gay people.

• If you’re LGBTQ and have HIV/AIDS, getting a diagnosis of Parkinson’s means you have two major medical calamities to contend with.

• Doctors who have no experience or training in LGBTQ issues may not understand certain things about your life. And/or you may feel uncomfortable being open with them.

• Some gay men (as well as other members of the LGBTQ community) who have always been hypersensitive about their body image may experience added despair as their bodies start to deteriorate because of Parkinson’s.

• LGBTQ people who are diagnosed with PD may not be accepted by others, either by other institutions that they have to deal with, or by other people they have to deal with or live near.

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Discussion / Elaboration

Growing old when you’re LGBTQ and infirm:  The New York Times recently published an article about a woman in the USA who is facing discrimination at the senior citizen residence she lives in, all because she is lesbian.  She doesn’t have Parkinson’s disease, but she’s been disabled (from arthritis and gastro-intestinal problems) since the 1980s, and her situation illustrates some of the points I listed above.

The woman, Marsha Wetzel, is 69 years old.  She raised a son with her life partner, Judy Kahn.  When Judy died, her (Judy’s) family seized control of Judy’s estate, and evicted Marsha from her home because the home was in Judy’s name.  Marsha was left homeless.  Her only income is what she receives from Social Security.

Marsha moved into a Catholic-run senior care residence near Chicago.  When some of the other residents learned she was lesbian, they began to physically and verbally abuse her, including one male resident who threatened to push her down the elevator shaft.  He also called her a “dyke” and “a slimy homo.”  She’s gotten bruises and a black eye.  The residence management has done nothing to stop the abuse, and now she has taken them to court.

The Times article mentions that this scenario is happening elsewhere, and will probably intensify as more and more Baby Boomers age.  While some advocates for the LGBTQ community are working to ensure that elderly gay persons receive equal treatment and respect in housing and community services, there are certainly plenty of anti-gay people and organizations that will fight this.  Many gay Parkies will have to deal with this added stress as they age.

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Mainstream doctors not understanding or accepting you if you’re LGBTQ:  Many of my gay friends and I have had negative experiences with straight doctors during our lives; that’s why until I was diagnosed with PD I mostly sought out doctors who were gay themselves or were straight but served a lot of gay people.

The clearest (albeit a bit graphic – forewarned is forewarned!) example that comes to my mind of a doctor not “getting” gay issues happened when I was working overseas (in South Korea) in the early 1980s.  I was living with a bunch of gay guys, and newspapers in the USA were just starting to report about HIV/AIDS.  One night at dinner, one of my roommates said we should all probably get tested for STDs and maybe start using condoms for sex.

So I went to the outpatient clinic of one of Seoul’s top-ranked university hospitals and said I wanted to be tested for STDs.

Fine.

A doctor took me into his office and drew some blood.  Fine.  Then he asked me to drop my pants, after which he inserted a cotton swab up my urethra.  Ouch, but fine.  He dropped the swab in a test tube and said to come back in ten days for the results.

I said, “Wait – that’s not the only area you should test.”

He looked at me, then, surprised, said, “Oh – oral sex!”  I opened my mouth and he inserted another swab and scraped it along the back of my throat.  Gag, but fine.

He thought he was done.  I said, “That’s not all,” and pointed to my butt.  “I’m gay; you need to test me back here, too,” I said.

This perplexed him.  He didn’t know what to do.

And instead of inserting a third cotton swab up my butt, which he should have done, he put on rubber gloves, inserted his finger, and pounded the heck out of my prostate.  Then he turned me around, yanked on my penis like he was milking a goat, and stuck the third cotton swab up my urethra again.

Ouch!  Wait a minute!  Wrong!

This example of mine is probably extreme, but I’m sure other LGBTQ readers can supply their own stories.  Doctors for LGBTQ people need to be current on, and comfortable with, LGBTQ issues.

Even today in the USA, the government’s Center for Disease Control acknowledges the following on its website page regarding health issues for gay men:

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“Other factors that can negatively impact your health and ability to receive appropriate care:

• Homophobia;
• Stigma (negative and usually unfair beliefs);
• Discrimination (unfairly treating a person or group of people differently);
• Lack of access to culturally- and orientation-appropriate medical and support services;
• Heightened concerns about confidentiality;
• Fear of losing your job;
• Fear of talking about your sexual practices or orientation.”

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We still have doctors today who are in the dark about homosexuality.  Case in point:  Dr. Ben Carson, the neurosurgeon who ran for president during the Republican primaries and may in fact serve in Donald Trump’s upcoming administration, (in)famously said that becoming gay is a choice, and that prisons prove this.  (For example:  “Because a lot of people who go into prison go into prison straight — and when they come out, they’re gay,” Carson said. “So, did something happen while they were in there? Ask yourself that question.”)

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I don’t know how to end this post, other than to make two final points:

• I’m fortunate, at least at the moment.  I have a husband who loves me and promises to take care of me, and I work for an organization that accepts me as a Parkie and as a gay married man.

• I said nothing about the closet.  If someone is LGBTQ and stays in the closet about it, and then he/she receives a diagnosis of Parkinson’s and stays in the closet about that, the psychological stress must be enormous.

Thoughts?  Comments?

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*Update Nov. 28, 2016:  Most legally married gay couples in the USA can expect that when one of the spouses dies, the surviving spouse will be eligible for the same Social Security survivor benefits that straight couples can count on.  But not all.  Click here for exact information.  And click here for information on other spousal retirement benefits.

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Update July 15, 2018:  A reader named Kevin just 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!

Also, click here for a guest post on the lack of attention to LGBT issues within the Parkinson’s community.