Heartache And Hard-Won Progress

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Miriam Katowitz and Arthur Radin
Miriam Katowitz and Arthur Radin

Love, support and good education: not enough to preclude mental illness in this family, but enough to help them cultivate recovery

From The Quarterly, Summer 2013

Miriam Katowitz and Arthur Radin were able to provide their children with a good home and excellent education, as well as their own personal examples of achievement. Arthur is a partner of longstanding in a well-respected Manhattan accounting firm, and Miriam, also a Certified Public Accountant (CPA), has worked in both the private and nonprofit spheres, and is currently acting controller of the 24-campus City University of New York (CUNY) system.

Their parental care has been rewarded. Their daughter is a construction project manager and their younger son, a recent Ph.D. graduate from the Massachusetts Institute of Technology (MIT), is a postdoctoral fellow in political science at the University of Southern California.

What Miriam and Arthur discovered they could not provide was a bulwark against mental illness. Their older son, David, has schizophrenia. He had barely begun his first semester at college when he had his first psychotic episode. “He couldn’t get to classes, couldn’t keep up,” Miriam recalls, “and within a week or two, he was hospitalized.”

David is now 44, and over the ensuing years, he and his family have experienced both heartache and hard-won progress. David is luckier than some. After a harrowing beginning in which he was treated with haloperidol (Haldol®), which worsened his condition and left him with traces of tardive dyskinesia, a side effect that causes involuntary, tic-like movements, he was stabilized on risperidone (Risperdal®), one of the atypical antipsychotics. The development of this class of medications was sparked by the work of Brain & Behavior Research Foundation Scientific Council Member Herbert Meltzer, M.D. with the support of a 1988 NARSAD Grant. He tested clozapine with patients with treatment-resistant schizophrenia and received FDA approval in 1989. Although not effective for all patients, this class of anti-psychotics has been life-saving for the millions of patients who respond positively to them.

When these medications were first introduced, many psychiatrists were unaware of them. David was lucky in that his psychiatrist was aware of the newly available medications, and they helped alleviate his symptoms. The downside is the side effect experienced by many: significant weight gain leading to diabetes, what doctors call metabolic syndrome, which David lives with.
    
Nonetheless, compliance with his medication, along with psychotherapy and the unwavering support of his family, has made it possible for David to live an independent life. After two years at a residential mental health facility in Baltimore, and shorter stays in halfway houses, he is now in his own apartment in Baltimore. Remaining in Baltimore provides continuity with the health professionals who have been treating him over the years. He does volunteer work in a hospital, filing records for medical practices.

David lives independently, but not without limitations. Schizophrenia can be socially isolating. The child who grew up in Brooklyn Heights, hanging out with friends and playing soccer and basketball, as an adult with schizophrenia has had difficulty relating to people. While in the hospital, and later, in a supportive housing program, he had people around him. His current situation, although positive in terms of his ability to take care of himself, is isolating, a situation his family and therapists are trying to improve.

For a long time David had difficulty even being with those he loves. In that regard, Miriam reports, there has recently been significant improvement. “He’s able to spend more time with us and to converse a little more. We don’t have to drag him out of his room when he comes to visit.”

Schizophrenia effects cognitive function, the ability to think clearly, to make decisions and act upon them. Another recent improvement: David has begun reading the newspaper again, mostly the sports section, and his old interest in basketball has revived. Remembering the boy who shortly before becoming ill had graduated from an elite, highly competitive high school, Miriam remarks, wistfully, that of the three children David “might have been the brightest.”

The onset of David’s illness coincided with the founding, in 1987, of NARSAD, now the Brain & Behavior Research Foundation. Miriam and Arthur learned of its existence through “an ad in the paper,” Miriam recalls. “We gave a little money, and then we thought, ‘what else can we do?’”

It turns out, quite a lot. Their involvement grew as the organization grew, as generous contributors in time and money. Arthur has served on the Foundation’s Board of Directors for five years, the last three years as its Treasurer. And, since 1997, as participants in the Research Partners program, which pairs donors with scientists working in a field of interest to the donors, the couple has supported 11 NARSAD Young Investigator Grantees working on various aspects of schizophrenia, including the use of new technologies, such as brain imaging, to explore brain function abnormalities.

Miriam enjoys getting to know the scientists she sponsors. “I like being able to hear them speak and to talk to them,” she says, “although I admit I don’t always understand what they say.” What Miriam and Arthur clearly do understand is that scientific research offers the best hope for families like theirs.  

Miriam and Arthur have seen at firsthand how important NARSAD Grants are for getting scientists with good ideas to enter the field and for ultimately making important advances in understanding and treating mental illness. Knowing full well that not every idea pans out, Miriam acknowledges: “It’s a gamble, but if you don’t try, you won’t ever succeed.

Article comments

VERY GOOD ARTICLE - HOW CAN SOMEONE IN CANADA GET INVOLVED WITH YOU?

My sister has suffered with this disease since high school (that was the onset) she is now 59 and stills suffers terribly, she has had good times, but now the risperidone isn't working as well, it was like a miracle at first and has worked for at least 10 years, so now we are trying something else, it begins with a z and she will add it to her risperidone and clozapine, so we'll see, she also has MS and that doesn't help either and she had to have her bladder removed due to cancer and she has a bag, it's really a struggle for her

Is the medication Zyprexa?

This story gives me a little sense of a "positive" outcome for young people with schizophrenia. My son, 26, developed schizophrenia while starting college and it has been one long struggle ever since.

Your story could be our family's story. I'm sure you have heard that many times. Thank you for all that you are doing by unselfishly giving your time to BBRF. I truly believe that someday there will be a cure for this debilitating disorder, and it will be a NARSAD grant that precipitates that discovery.

Im glad that David has support. Im equally sorry that the brain research place advocates for even the new atypical meds as they have long term side effects also very dangerous and devastating side effects. mind you the newer drugs are far better than prolixin or Haldol which should not even be allowed ont he market. I was illegally forced medications and suffered great damage and loss from the experiences. I believe medication if any is only to be used in an extreme last resort. Especially with anti physcotics which are like liquid lombotomies.. And if one talks to patients besides being sedative and sedatited one still has delusions or hears voices or sees things or is paranoid. most of these issues are highly spiritual and or in the other 50% of the cases if not more brought on by trama and treatable..Some people and most mental health patients are extremely sensitive to their conscious environments and usually some type of clairvoyant. Some times masked by the amount and type of information coming in.One needs to disern from whats possible and real..This can be done and is accomplished off of meds never or usually not while being medicated.Some people its a matter of life experiences and time to learn how to deal with the extra information coming in...Medication cause brain damage and physical bodily damage of extremely important functioning processes in the body and mind...Which causes extreme health problems down the road which are preventable and unecissary and only caused by the medication use.All anti phycotics cause damage which is unreasonable and like a lombotomy not a solution are a path one should take when dealing with meantal heath issues.

David is a very lucky young man. I have known people with schizophrenia whose families completely abandon them and they are left without knowing where to find help. I also know a man who was completely changed when he started to use clozapine. It can be very effective.

Janet Larsen, I completely agree with you. Clozapine, though often thought of as a drug of last resort and must be carefully monitored, can be a godsend when other drugs just aren't working.

Thank you for sharing this very touching story. Arthur is a good example of how a supportive family and health care system can make a huge difference in patient's outcomes. As a past NARSAD grantee I would like to suggest that in addition to sharpening our medication targets we also need to expand our research agenda to understand the biological substrate mediating the effects the social system at large and the family system in particular. Epigenetics and now inter-generational genetics data indicate that there is much to gain by using a continuum (as opposed to categorical) approach to the socio-biological spectrum of the mind-brain interface.

It is good to hear that Miriam and Arthur's son is doing better than he was.
What plans have they made for David when they die? Will he have money to spend?
Is he aware about any arrangements that they have made?
I am impressed that they have told their story.
Thank you for this story of recovery.

I can relate to almost everything in this article. This disease is horribly isolating and there doesn't seem to be any hope at present time of that changing. Our son is quite aware of his disorder and wants to know WHY. Everyone around him has a "normal" life except him. He suffers more than anyone can imagine. The voices that rule his life keep him from the things he wishes to have-friends, a girlfriend, a life . He is our hero! Through his hell, he finds time to help others-a paralyzed neighbor, a friend with disabilities, and anyone who needs a helping hand. We love him so much and pray for relief for him from this horrific disorder. We pray for change -to cease calling brain disorders "mental illness"!!!!!! It's 2013!!!! Lets STOP adding fuel to the fire by upholding the tragic stigma associated with this disorder.

I am a caregiver for my 88 yer old mother with paranoid schizophrenia. I also have two bothers with paranoid schizophrenia as well. My mother suffered for 12 yrs in state hospitals. My brothers,both extremely ill refused help. It is difficult dealing with the delusions that are so real to them. My mothers still believes that I am an imposter and not her daughter. After 13 yrs of caring for her I am still a stranger to her. Thanks for the opportunity to share a little of my story.

The only thing that bothers me about this story is the remark of David's mother of him possibly being the brightest of her three children. I wonder what feelings her remark will engender with David's siblings?

My mother said the same thing to me that she thought it odd my brother had all these problems and " even had higher IQ" than me and yet I was successful and he was not. At first, I took this as an insult which was not that uncommon. However, now I think it was more complicated than that one sentence might convey: ie....my mother trying to make sense of the, as yet, unexplainable disease; to make sense of why; And her surprise that a brain with "higher intelligence" or potential capability academically wasn't somehow inherently stronger or protected from such a mental/brain based disorder; not to mention grieving the person that could have been if not for the disease.

There is no better place than B'More Clubhouse for those with a mental illness diagnosis in need of a restorative environment within a community of caring people. Members of the clubhouse become friends, have enjoyable social times together and do meaningful work at the clubhouse and beyond. The clubhouse meets the international standards set up by the now worldwide clubhouse movement. The first clubhouse was started in NYC (Fountain House) in 1944 and B'More Clubhouse was started in 2008 in Baltimore. B'More house is located at 5 East Read Street, Baltimore MD 21202 and their phone is 410-727-2030.
http://bmoreclubhouse.org/

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