(3-2-24) I was staring at the wall clock in the INOVA Fair Oaks (Va.) Hospital when the emergency room doctor spoke but I cannot tell you now what time it was. I only know that it was at that single moment when my entire life changed.

Just before Christmas, I’d fallen while hiking in the Shenandoah, breaking three ribs. Seven weeks later, I began gulping for breath whenever I walked upstairs. An x-ray revealed fluid in my right lung, which caused my wife, Patti and me to drive to the ER.

The fluid needed to be drained, the first ER doctor explained, while ordering a CT scan. Patti was nervous. “What’s taking so long?” she asked. The doctor finally returned. “We have a problem. There are three masses in your right lung.” Masses? My first reaction: “They must be from my hiking accident.” He replied: “They are highly suspicious.”

A second ER doctor arrived to schedule the draining of fluid and admit me into the hospital. “Do you understand what you are dealing with?” he asked. I blamed my fall. He said, “Cancer. Lung Cancer.” Patti and I stared at each other. Stunned! The doctor continued typing into a computer without making eye contact. Not a hint of empathy or emotion. “Lung Cancer that’s metastasized is Stage Four,” he said in a voice no different from when someone orders a pizza.

Patti urged me: “Don’t check the Internet.” I did. In less than an hour, I’d gone from being a hiking fall victim to having a fatal lung disease. “This can’t be happening,” I said out loud. Not to me.

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(12-15-23) Pat Milam was desperate. He knew his adult son, Matthew, was planning on killing himself. But doctors at the Ochsner Hospital/Clinic where his hospitalized son was being treated for bipolar disorder and paranoid sczhophrenia weren’t listening.

The more Pat tried to sound alarms, the more doctors at the large medical center on the outskirts of New Orleans, La., balked. One said he didn’t want to “upset” Matthew by sharing his father’s worries. But mostly, Pat and his wife, Debbie, were told the federal Health Insurance Portability and Accountability Act (HIPAA) prevented the hospital from discussing Matthew’s case.

“I told them, you don’t need to tell me a damn thing about my son,” Pat recalled in a telephone call. “I know my son. You need to let me tell you about what is happening on the other side” – at home.

“I took photos of Matthew standing in a thunderstorm begging God to strike him down by lightening,” Pat explained, hoping to substantiate his fears. “I got a notarized affidavit from a co-worker who described how Matthew had showed him a noose and said he was going to use it to kill himself. I documented how Matthew had dug his own grave in our backyard and had slashed his throat.” Pat went so far as to get a letter a psychiatrist not affiliated with Ochsner stating that Pat was not an “alarmist” but had reasons to be worried.

Pat hand-delivered all of those documents to Ochsner. Despite this, he was told that Matthew would be discharged. Doctors said he was stable. Pat contacted the CEO of Ochsner and begged him to intervene – as one parent to another. No one listened.

Eight days after being sent home, Matthew was dead at age 24.

Grieving, heartbroken and angry, Pat sued Ochsner Medical Institutions, one of the largest providers in the South.  It was a David vs Goliath challenge – Ochsner is a four billion dollar operation with 30,000 employees.

Now, twelve years after Matthew’s suicide and despite repeated attempts by Ochsner lawyers to drag out the couple’s civil suit, depose them with embarrassing questions about their personal lives, and drive up attorney bills, Pat and Debbie reached a settlement.

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(11-7-23) Gabe Howard is no stranger to readers of this blog. He’s a popular speaker, host of Inside Mental Health: A Healthline Media Podcast, and author of Mental Illness is an Asshole.

For the first time since Gabe’s bipolar disorder surfaced, his mother, Susan Howard, talked openly about her son’s mental health on the Inside Bipolar Podcast on PsychCentral.

Gabe wasn’t present when his mother was interviewed by Dr. Nicole Washington, Gabe’s co-host on the podcast,

Many of you are parents of adult children with mental illnesses. I’ll be curious if you relate to what Ms. Howard says about her son.

Thanks Ms. Howard and Gabe for putting a human face on bipolar disorder.

(11-2-23) We’ve lost a wonderful housing and mental health care advocate.

I served with Dorothy Edwards on the board of the Corporation for Supportive Housing (CHS). She died last month from rapid, advanced cancer at age 65.

For eight years, she and her dog, Gunter, lived under a freeway overpass in Greater Los Angles. She was heavily addicted to drugs and couldn’t find a way to get off the streets. She later told Bill Pitkin, of  the Conrad N. Hilton Foundation: “I craved a place of my own. I watched people who, day after day, helped me out and handed me money. I thought, I know they’re leaving and they’re going home. I was hurting and needed a home too.” Read article here.

What changed her life was “supportive housing” with “wrap around services.” Getting an apartment enabled her to focus on beating her addictions which she did, with help. It also gave her hope.  When Dorothy agreed to serve on the board of the CHS, I was tremendously proud of her and CHS. Mental health organizations routinely hire and appoint individuals with lived experiences to their boards, but not many large, New York City-based, multi-million non-profits recognize the value of having someone such as Dorothy as a board member. This is unfortunate.

“Dorothy’s insight, forged through her personal journey, has been invaluable in shaping the path of our workout CHS and the minds of many elected officials,” Deborah DeSantis, president and CEO of CHS, wrote in an email. “Dorothy reminded us that every individual is a reservoir of untapped potential, and with opportunity and support, they too, can overcome the most daunting obstacles. We remember …her unwavering belief in the power of recovery and second chances.”

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(10-31-23) For decades Dr. E. Fuller Torrey, the founder of the Treatment Advocacy Center and a tireless advocate for better health care, has argued that the federal government should better fund mental health research. Now, at age 86, he is calling for more federal research into the causes and potential cures for Parkinson Disease. In this article, first published by The Washington Monthly, he describes how the disease is affecting him and points out the disparity between funding for Alzheimer’s research and Parkinson.

Reprinted with author’s permission.

My Parkinson’s Crisis—And Ours

The still-mysterious disease is spreading wildly, and Washington isn’t doing enough. As a physician and a sufferer, I should know.

Parkinson’s disease is a puzzle. I know because I have had it for more than a decade. Some of its symptoms, such as tremors, are easy to understand, but others are weird. For example, turning my body is difficult, and it’s even more difficult if I try to turn it clockwise rather than counterclockwise. I have lost my ability to swim. And what happens when I suddenly freeze, as if my feet were glued to the floor? My brain has sent a message to my feet to step forward. Did the message not arrive, or did my feet simply ignore it? It’s impossible to know. (This article has a shared byline, but the “I” refers to Torrey.)

Parkinson’s disease is not just a puzzle; it’s an expensive one. A recent detailed study, based on 2017 data, reported that just over 1 million individuals in the United States were living with Parkinson’s. The disease costs our health care system $51.9 billion annually—and that price is expected to balloon to $79.1 billion by 2037, or roughly $1.36 billion a year. Since 90 percent are 65 or older, these patients place a particularly heavy burden on Medicare.

Even more alarming, the researchers estimated that by 2037 an additional 600,000 people will be diagnosed with Parkinson’s. Such projections are consistent with other studies showing that Parkinson’s is the fastest-growing neurological disease globally, increasing even faster than Alzheimer’s disease. Indeed, an editorial in The Lancet Neurology reported that “the prevalence, burden of disability, and number of deaths associated with Parkinson’s disease all more than doubled between 1990 and 2016.” Some observers call this a “Parkinson’s pandemic.”

Part of this increase is attributable to people living longer and to the large, aging Baby Boomer population. But that is only a partial explanation. Another part might be due to factors related to the causes of this disease. Studies have shown that you are more likely to get Parkinson’s if you have red hair or melanoma, or if you still have your appendix. Other studies have reported that having numerous dental amalgam fillings or living downwind from a golf course are risk factors. Perhaps strangest is data showing that drinking large amounts of milk or never having smoked tobacco increases your chances of getting Parkinson’s disease. Examining some of the leading theories of causation—genetics, infection and inflammation, toxic metals, and pesticides—can illuminate this puzzling potpourri of claims and determine whether research dollars are being effectively deployed in halting the rise of the disease.

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(8-25-23) The Virginia state chapter of the National Alliance on Mental Illness has joined the campaign to move Christopher Sharikas, an longly-held inmate with paranoid sczhophrenia, from prison into a mental facility.

NAMI Virginia Executive Director Kathy Harkey explained in a letter to Sharikas’ pro bono attorney Jonathan P. Sheldon:

NAMI Virginia believes that Christopher Sharikas should be receiving mental health services in a facility that is structured to provide them, and that his continued incarceration is an injustice to Sharikas, his family, and his community.

Lisa Dailey, executive director of the Treatment Advocacy Center, also has supported Sharikas’ parents, James and Sana Campbell, in seeing their son moved into a mental health center.

In a recent blog, I explained why Sharikas’ incarceration is especially egregious.

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