An Agonizing Journey and a “Blessing”

An Agonizing Journey and a “Blessing”

Posted: November 22, 2014

Janet and Donald Boardman, Sr., remember with chilling clarity the last time their son Donald, Jr., had to be hospitalized against his will.

“When the sheriffs came,” Janet says, “he was in our backyard, very ill, very angry, and when he started walking away, pushing his way through the sheriffs, one of them hit him with a billy stick. Then they pushed him down, put handcuffs on him and pepper-sprayed him.” As the spray drifted into the house, Mrs. Boardman, and her younger daughter, Kate, watched him being taken away—again.

For years the Boardmans, like many families in similar circumstances, lived with the anguish and frustration of trying to protect a loved one with schizophrenia, often from himself. Their son refused or abandoned treatment, due to side effects and ineffectiveness, and denying that there was anything wrong with him. What medications he did take rarely worked, or not for long. Before lasting help finally came in the form of the antipsychotic medication clozapine (Clozaril®), Donald, Jr., had gone through periods of homelessness, suicidal thoughts, 15 hospitalizations, eight of them involuntary, and an arrest for assault, which put him in the justice system where a sympathetic judge helped to focus him on compliance with his treatment plan.

His illness was exacerbated by factors common in mental illness. The lack of insight into their illness, medically termed anosognosia, occurs in about half of people with schizophrenia. Another factor is marijuana, that Don began to smoke, his parents believe, as an attempt at self-medication. Research has been showing that for young people with a genetic vulnerability to developing schizophrenia, it can be a trigger. In 1986, at age 17, two years after the depression that had first led his parents to seek psychiatric help for him, Donald, Jr., started smoking marijuana and, not long after, exhibited “suicidal ideation and behavior” and was hospitalized.

By 21, he was severely psychotic. The agonizing journey had begun in earnest. “It takes a while to get your mind around the fact that this is going to be ongoing and life is never going to return to normal,” Janet says.

Donald Boardman, Sr., who had had a successful 30-year career as a real estate financial officer and CPA, retired early, in part, he says, to help with his son’s care. “I went into nonprofit work in the area of special needs housing and homeless services, and both Jan and I became active in NAMI.”

NAMI, the National Alliance on Mental Illness, runs programs to help families and those with mental illness learn about and cope with mental illness. Donald, Sr., served on the NAMI Maryland state board for six years, as did Janet on the local board in Montgomery County, Maryland, where they live. She and a colleague, both educated in nursing, initiated the NAMI Family-to-Family Education Program for the county.

Their son’s last encounter with the sheriffs led Janet to become an instructor in Crisis Intervention Team Training, a national program that helps teach law enforcement personnel about dealing with people who have a mental illness. As part of the training, Janet explains, they spend an hour being bombarded with “virtual voices” to “get a sense of what it’s like to have schizophrenia.”

The Boardmans have supported the Brain & Behavior Research Foundation for the past 15 years. In 2013, Donald, Sr., joined the Foundation’s Board of Directors and recently served on the organizing committee for the Discovery to Recovery Conference, held in Washington, D.C., in September. At the conference, he found “notable” the emphasis by several speakers on early detection and treatment for mental illness. “I couldn’t help wondering,” he says, “whether we’d have had a less traumatic progression if there had been such an emphasis when we were in the early stages of Don’s illness.”

The Boardmans’ faith in research is understandable. Their son’s recovery was due in large measure to the work of Foundation Scientific Council Member Herbert Y. Meltzer, M.D., the principal investigator on the trials that led to the approval of the use of clozapine for treatment-resistant schizophrenia. With clozapine and supplemental antidepressant and antianxiety medication, the voices in Donald, Jr.’s head, while not completely gone, became controllable.

Today, at 45, Donald, Jr., lives on his own in Baltimore, near his doctors at the Sheppard Pratt Health System. He has a job, which he has held for 12 years, driving for a pharmacy. He lives about an hour away from his parents, who are in touch daily, visit frequently and continue to provide emotional and financial support. Sisters Anne and Kate are also in regular touch.

Says Donald, Sr., “Seeing positive treatments that have come from research is a blessing.”