Gay, with Parkinson’s.  An Update.

After the World Parkinson Congress last September in Portland, I posted a blog titled “Gay, with Parkinson’s.  What are the Issues?”  It basically elaborated on a list of issues that two gay couples attending the Congress and I came up with one night at dinner.

Here’s an update on things I think LGBTQ Parkies must think about.  Times have changed, and not always for the better.

The list below is in random order, and is based mostly on information I’ve read recently.

1. Even though Parkinson’s is not a gay disease, it’s still a good idea to let your doctor know you are gay (lesbian, bi, transgender, etc.). The New York Times recently had an article about this (click!). Here’s an excerpt:

Do doctors need to know their patients’ sexual orientation and gender identity?

A growing number of federal agencies has been pushing health care providers to ask. Federally funded community health centers, which treat millions of patients, have begun to collect the data. Electronic health software must be able to store it. And blueprints for national health goals recommend collecting the information from all patients.

By knowing whether a patient is lesbian, gay, bisexual, transgender or straight, say public health experts, clinicians can be more alert to a person’s medical needs and more thoughtful in interactions. If hospitals report statistics on all patients, health care disparities among L.G.B.T. patients can be identified and redressed more effectively.

If you click on the “blueprints” link above, you’ll read a lot of reasons why the medical profession needs to recognize, acknowledge and understand better its LGBTQ patients.  For example:

Research suggests that LGBT individuals face health disparities linked to societal stigma, discrimination, and denial of their civil and human rights. Discrimination against LGBT persons has been associated with high rates of psychiatric disorders, substance abuse, and suicide.  Experiences of violence and victimization are frequent for LGBT individuals, and have long-lasting effects on the individual and the community.  Personal, family, and social acceptance of sexual orientation and gender identity affects the mental health and personal safety of LGBT individuals.

And:

Elderly LGBT individuals face additional barriers to health because of isolation and a lack of social services and culturally competent providers,

So, according to the NY Times, by all means, let your doctors know, even if it’s the movement disorder specialist you’re seeing for PD.  The anxiety and stress you’ve experienced as someone who’s LGBTQ may exacerbate the anxiety and depression that often come with Parkinson’s disease.

Caveat:  This, of course, assumes you live in a country where it isn’t illegal to be gay.  As ILGA  (the International Lesbian, Gay, Bisexual, Trans and Intersex Association) reported last month, 72 countries still criminalize same-sex relationships, and in some places, the penalties are severe:

There are currently 8 UN member States (or parts thereof) where death penalty occurs as a punishment for same-sex consensual sexual acts, and a further 5 States where although the death penalty is technically possible, it is never implemented. In 14 other countries the maximum penalty can vary from 14 years to a life sentence in jail.

However, I also recognize that even “enlightened” countries may have deep pockets of drawbacks.  This explains, for example, why gay African-American men, especially in the southern United States, have higher HIV rates than you’d find in any AIDS-ravaged country in the developing world.  According to another article in the NY Times,

Last year, the Centers for Disease Control and Prevention, using the first comprehensive national estimates of lifetime risk of H.I.V. for several key populations, predicted that if current rates continue, one in two African-American gay and bisexual men will be infected with the virus. That compares with a lifetime risk of one in 99 for all Americans and one in 11 for white gay and bisexual men. To offer more perspective: Swaziland, a tiny African nation, has the world’s highest rate of H.I.V., at 28.8 percent of the population. If gay and bisexual African-American men made up a country, its rate would surpass that of this impoverished African nation — and all other nations.

And in the current “make America great again” climate, many states in America are starting to implement laws that make it more difficult for gay people to live openly in society and receive public services.  Again, from the NY Times:

The bias that black gay and bisexual men still face poisons the H.I.V. picture in Mississippi and throughout the South. In 2016, Gov. Phil Bryant of Mississippi signed HB 1523, the Protecting Freedom of Conscience From Government Discrimination Act, one of the country’s most sweeping and repressive anti-L.G.B.T. laws. Though currently blocked by federal court and under appeal, the legislation, if allowed to proceed, would allow churches, religious charities and private businesses to deny services in a broad variety of contexts to L.G.B.T. people.

According to the Associated Press, Mississippi actually got the go-ahead to implement the law:

A federal appeals court says Mississippi can start enforcing a law that will let merchants and government employees cite religious beliefs to deny services to same-sex couples….Republican Gov. Phil Bryant and other supporters say the law protects beliefs that marriage can be between only a man and a woman, and that a person’s gender is determined at birth and cannot be changed.

As an example of how devastating this could be for a gay Parkie, recall the situation I wrote about in my previous post:  Marsha Wetzel , a disabled and homeless lesbian who lives in a Catholic-run nursing home, received no support from the institution when other residents started physically and verbally abusing her for being gay.  She suffered bruises and a black eye, and one resident threatened to push her down the elevator shaft.  The Catholic-run organization did nothing to help her.

This backsliding on treating LGBTQ people with the same respect and services that straight folks receive is popping up again and again in the USA.  For example, Commerce Secretary Wilbur Ross, a Trump appointee, recently omitted sexual orientation and gender identity from the department’s non-discrimination employment clause.

And if you are gay, married and have Parkinson’s disease, don’t plan to have your funeral in Illinois if you’re Catholic.  The Bishop of Springfield, Ill, just issued a decree forbidding priests to perform funeral rites for gay couples.  From his decree:

Unless they have given some signs of repentance before their death, deceased persons who had lived openly in a same-sex marriage giving public scandal to the faithful are to be deprived of ecclesiastical funeral rites.

2. If you’re LGBTQ, you’ll probably have less mental stress if you come out. Similarly, if you have Parkinson’s disease, staying in the closet will probably add to your stress.

The fact that so many gay folks are out of the closet these days may make people think it’s an easy thing to out oneself.  But plenty of LGBTQ people still tremble in the closet, and the toll can be devastating.  Recently, NFL star Ryan O’Callaghan admitted that one reason he pushed himself to succeed at football was to camouflage the fact that he is gay.  He felt that pro football players are not only masculine but perceived by society as exclusively heterosexual.  The sad and shocking twist was that O’Callaghan planned to commit suicide when his football days ended and he no longer had this macho image protecting him.  The title of this article says it all:

“Former NFL Star Planned To Hide His Sexuality Until Retirement And Then Kill Himself”

As for outing yourself as a Parkie, there are plenty of resources to help you through this process.  E.g., click! and click!  I maintain that staying in the closet as a Parkie adds stress to your life, and I recall this quote from an earlier blog post I wrote, which discussed the fact that a third of British Parkies live in fear of revealing their diagnosis, even to family and friends:

One in three with the condition said they had delayed telling friends and family about their diagnosis with some of the main reasons including the fear of being stigmatised.

…

Younger people reported being hardest hit by the diagnosis to the extent that many said they felt “like their world had ended” and said “they didn’t know who to turn to”.

Steve Ford, chief executive at Parkinson’s UK, said not getting help for the degenerative neurological condition was having a devastating impact on people’s emotional health.

3. If you are LGBTQ and in a committed relationship, it makes sense to get legally married if your country allows it.  Among other things, this will entitle you (or your spouse) to survivor’s benefits, such as Social Security benefits that straight widows/widowers automatically receive in the USA.  It also provides you with inheritance rights to your spouse’s estate.  If you do not marry, you or your partner’s family may seize control of the deceased person’s property or financial holdings, which is what happened in the case of Marsha Wetzel.

Also:  if you are married in the United States and either you or your spouse is from another county and living in the US with a green card (permanent residency status), as soon as possible the green card holder should apply for US citizenship.  If the US citizen in the marriage dies and the survivor merely holds a green card, the government claims about a third of the deceased’s estate in taxes.  However, if both spouses are US citizens, the surviving spouse can keep everything the deceased person left behind.

I apologize for writing about many negative issues on a day of celebration in New York:  it’s Gay Pride Day (the last Sunday in June), and the massive Gay Pride Parade is marching down Fifth Avenue in beautiful weather.  Furthermore, the parade is being televised live on network TV (ABC), a first.

As always, I wish everyone the best, and wish Parkinson’s disease as well as homophobia didn’t exist.