Dr. E. Fuller Torrey Describes Living With Parkinson’s Disease, Calls For More Govt. Research

Dr. E. Fuller Torrey calls for more funding for Parkinson’s Disease

(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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Keeping Virginia Inmate With Paranoid Schizophrenia Locked Up “An Injustice” NAMI Virginia Declares

Christopher Sharikas with his parents, Sana and James, who are seeking his release to a mental hospital

(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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We Can & Must Fix Our Mental Health System – Here’s How – Mother Writes

The mental health system that failed my son is fixable

Many warranted worries kept me up at night while my son, Calvin, was still living. Would he kill himself today? Would he land back in jail — or disappear? Would I need to prove to someone that he was dangerous, so he might get another short stay in a locked facility?

Typical parent anxiety about schoolwork, careers and relationships was overcome by daily threats to my child’s survival. When he died from suicide at 23, he was disabled and dependent on government money for subsistence in a rundown basement apartment on Capitol Hill.

Our sad story is normalized by a system structured for poor outcomes.

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He’s Being Held Twice As Long In Prison As Someone Without A Mental Illness. Now Virginia Correctional Officials Are Ignoring A Prison Video Showing He Didn’t Attack Guards

Sana and James are seeking help for their son, Christopher, who has paranoid sczhophrenia. He’s served twice as long in a Virginia prison as the state recommends for someone convicted of identical crimes.

(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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Determined Mother Put Words Into Action To Help Son With Schizophrenia


Chris, Charles, and Lisa. (Photo courtesy of Lisa Taliaferro.)

(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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Searching For Light: A Son’s Death, Mental Illness, Suicide, & Drug Addiction

(6-16-23) It is important for families and individuals to share their stories. Doing so puts a human face on mental illnesses and addictions and, by personalizing these painful memories, helps educate the public.

A while back, I posted a blog about Renate LeDue’s moving book: For The Love Of Jeremy – A Memoir of a Family Affliction: Mental Illness and Addiction, which will be published June 20th. It is unique because she brings multiple perspectives to her story – those of a mother, daughter and sister – each aimed at reducing the stigma of mental illness, substance use disorder and suicide.

I was pleased to learn that her book recently received two nice endorsements.

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