(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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The mental health system that failed my son is fixable

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(7-24-23) I’ve heard stories about individuals with serious mental illnesses being trapped and mistreated in our criminal justice system. The case of Christopher Sharikas is among the most egregious, by far.

Sharikas, who has been diagnosed with paranoid schizophrenia, has been imprisoned in Virginia for 26 years after being convicted of felonies that carried a state recommended maximum sentence of eleven years.  Based on state guidelines, that’s more than twice as long as someone without a mental illness would serve.

But there is more to this injustice – information that I only recently learned that is simply outrageous.

When Sharikas appeared before the Virginia Parole Board in December 2020, he was denied release after the Virginia Department of Corrections said Sharikas had assaulted prison guards nine years earlier. What the parole board was NOT told is that a video of that alleged incident exonerated Sharikas. It proved that he had not attacked officers.

When challenged about this irrefutable evidence, a Department of Corrections official told Sharikas and his family that video evidence didn’t matter. Guards at the prison had sworn that he’d attacked them. That was sufficient for the department. Put simply, it backed its officers regardless of contrary evidence.

I first wrote about Sharikas on this blog in 2017. I followed up with editorials in The Washington Post and USA Today. The Post published a prominent story about Sharikas. Yet, no state agency, elected official or mental health advocate has stepped forward to help Sharikas. The only mental health organization that has offered assistance is the Treatment Advocacy Center.

This is shameful.

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(7-5-23)  Lisa Taliaferro and her husband, Chris, felt cursed.

Three of their five children were diagnosed as  young adults with varying degrees of schizophrenia. They began to believe that they hit the trifecta!

“We began questioning God,” Lisa recalled in a recent interview. “What did we do wrong? Why Us?”

Over time, the deeply religious couple found solace.

“Each of us is put on earth to do something,” Lisa said, “and when you are able to find your purpose, that’s when God begins to speak to you and He shows you what He wants you to do. It may not be just for you or your family, but for other multitudes of people that need to be touched and helped by your story.”

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