Namiadvocate spring2015

Spring 2015

1 day ago

•••

I hate being tired, but not able to fall asleep. -Feeling annoyed, drained, tired

# 1 Hashnote

1 day ago

•••

I need a hug.

-Feeling alone,

overwhelmed

# 1 Hashnote

1 day ago

•••

Pain is real.

But so is hope and

recovery.

# 1 Hashnote

Seeking Support and Community in a Digital Age Inside: Getting Support Without Giving Your Name • Taking Another Look at Clozapine

What does it mean to be...

YOU CAN REPLACE STIGMA WITH HOPE AND UNDERSTANDING.

?

Learn about mental health—educate yourself and others See the person not the illness—strive to listen, understand, tell your own story Take action—spread the word, raise awareness, make a difference

Take the pledge

www.nami.org/stigmafree

Contents Spring 2015 • Vol. 13, No. 1

The NAMI Advocate is published by NAMI, the National Alliance on Mental Illness.

3803 N. Fairfax Drive, Suite 100 Arlington, VA 22203-1701 Ph: 703-524-7600 • www.nami.org/advocate Executive Director Mary Giliberti Medical Director Ken Duckworth, M.D. National Communications Director Katrina Gay Communications Manager Brendan McLean Graphic Designer Susie McKinley Additional Copyediting Blackline Editorial NAMI HelpLine 800-950-6264 Submissions www.nami.org/advocate/submissions @NAMICommunicate www.facebook.com/NAMIofficial NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

7 Taking Another Look at Clozapine A Too-Often-Forgotten Treatment for Schizophrenia

9 Getting the BIG Picture Risks and Responses to the Weight-Change Side Effects of Psychotropic Medications

10 Getting Support Without Giving Your Name Why the Ability to Stay Anonymous Is Necessary

12 Mental Health Parity Still a Long Way to Go

14 Selecting Treatment Shouldn’t Be Like Flipping a Coin 16 What Does It Mean to Have a Mental Illness?

19 Putting a Band-Aid on a Bullet Wound Doesn’t Make Sense Neither Does Speaking to Veterans in Ways to Which They Can’t Relate

We get it. We’ve been there.

NAMI embraces people living with mental illness and their families who are often isolated. We offer understanding and support unique to those who are affected by these conditions.

Jayson Floyd and Tyler Grey from the film That Which I Love Destroys Me.

NAMI means more than hope. We educate families and individuals and we advocate in every corner of the country to ensure better lives for everyone.

© 2015 by National Alliance on Mental Illness.

All rights reserved.

Departments

Editorial Note: Information provided in this publication is for informational purposes only and is not intended as medical advice. NAMI does not endorse any advertisements or advertising companies in this publication. Individuals and their family members should always consult with their own treatment providers about decisions concerning treatment and medications.

Some stock photos in this publication are being used for illustrative purposes only, and any person depicted in stock images is a model.

2 3 4 6 21 23

From the Executive Director

NAMI President’s Letter NAMI News Affiliate Spotlight: NAMI Juneau

Book Film Art Election 2015

Spring 2015 | NAMI ADVOCATE | 1

FROM THE EXECUTIVE DIRECTOR

Stories: Hope, Help and Healing

A

t its core, NAMI is an organization about life experiences: how we have been touched by mental illness, and how that has shaped who we are and our journey through life.

Shared stories of anguish and frustration drove a small group of family members in 1979 to gather around a kitchen table, united in Mary Giliberti their desire for better access to mental health services for individuals with serious mental illness. That group ultimately became NAMI. Today, we continue to unite family members and individuals affected by mental illness around our common experiences of unresponsive systems, crisis-driven care and lack of housing.

We also share hopeful stories of recovery, employment and community leadership.

In 1979, we had limited ways in which to tell our stories.

In person or by letter were often the only options. Today, the possibilities are nearly endless. In this issue, we highlight some of the newer methods, such as websites like NAMI’s You Are Not Alone (notalone.nami.org) and OK2Talk.org, a storysharing platform for teens and young adults and Facebook.

Interestingly, no matter what the medium, the common theme in these stories is a desire to help others. Here are a few of those inspiring messages: Let me tell you something: You’re not alone.

There is a purpose for each and every one of you on this earth. Let’s bring more awareness to mental illness and help each other out. We can get through this.

I want to know if I can maybe help someone now who is in crisis so they won’t become another victim of their own selves. I’m not sure how to help, but I know I can listen.

As this issue goes to press, we are launching a tool for sharing your experiences: the first-ever mobile support app from NAMI. Due to a generous gift from AstraZeneca, NAMI is able to offer NAMI AIR, a free app that is anonymous, inspirational and relatable—hence the name. Through the app, which is currently available on iPhone and Android devices, you can share your feelings and experience, and others can “Hug,” “Like” or “Me Too” to indicate support. There is a community for people with mental illness and for supporters. I encourage you to download AIR to share your own words or to encourage someone who has shared theirs.

2 | NAMI ADVOCATE | Spring 2015

As we develop new ways to tell your story, we are very grateful for the programs that have continued to demonstrate success in promoting healing through shared experiences.

Every NAMI Family-to-Family, NAMI Basics and NAMI Peerto-Peer class includes a specific time for sharing your story.

In our presentation programs, such as NAMI In Our Own Voice and NAMI Ending the Silence, storytelling is a critical component—not only for educating about discrimination and changing perceptions about mental illness, but also for receiving comfort and assistance from others. We also tell our stories to providers, police officers and teachers so that they can provide more compassionate and effective services and responses.

But the benefits of these programs are not limited to just those taking a class or attending a presentation. I will never forget one of my earliest conversations with an affiliate leader who taught NAMI Peer-to-Peer and led a NAMI Connection group. She said that she was not doing well until she started teaching and leading others. This led her to turn her focus away from her own concerns and to start appreciating her ability to help others. NAMI programs jumpstarted her recovery.

We have even developed the NAMI Smarts for Advocacy program to help people tell their stories in a few minutes specifically for the purpose of influencing public policy.

Many of our stories are complicated and have many parts, and legislators have little time and less patience, but they do want to be moved and informed by our experiences.

Many years ago, I taught that course and helped a person take her extensive and ultimately triumphant story and compress it into a few minutes. It wasn’t easy, but what a feeling of accomplishment when we were done! This feeling of achievement is reaffirmed at every NAMI state conference I attend and at other events when people pull me aside to say how much our courses have meant to them because they realized they were not alone.

I feel so fortunate because every day, I meet people, and their life stories become part of mine through our work together. I know many of you feel the same way. If you would like to share your thoughts about how your life has been enriched by the stories of those who are affected by mental illness, share your story online through You Are Not Alone or OK2Talk, or feel free to contact me at executivedirector@ nami.org.

Mary Giliberti, J.D. NAMI Executive Director

NAMI

PRESIDENT’S

LETTER

President’s Letter

A

s we know, one of NAMI’s greatest strengths is its passion to help make lives better for individuals affected by mental illness. To help them find treatment, learn coping skills and experience a supportive network. And to help raise the voices of those who wish to speak up against stigma and discrimination, and for Jim Payne public awareness, proper services and research.

One of my favorite roles with the NAMI National Board of Directors has been helping the board and staff develop strategic drivers and goals for 2015 to 2017. They developed five muscular drivers/goals, each carrying specific measurable outcomes to which NAMI is holding itself accountable.

The five strategic drivers and goals are: • B uild a Movement. NAMI will broaden public awareness and inclusion in every part of the alliance.

I believe our alliance is having a direct role in helping bring our country to a new era of compassionate awareness about serious mental illness. Individuals are speaking up and educating the public. NAMI is about building a movement. Let’s keep it up!

• L everage Technology. NAMI will expand use of technology to build capacity and connection.

NAMI connects with many individuals through the new webpage and social media. Younger generations are joining organizations in fewer numbers than previous generations did. We use IT to help members and non-members alike be part of the NAMI movement—obtaining information and personal validation, participating in a NAMI Walk or other community event, helping others, and speaking up and advocating.

• D rive Advocacy. NAMI will lead advocacy efforts that drive increased access and quality.

Advocacy is one of NAMI’s pillars, along with support, education and research. NAMI will continue to use advocacy to bring hope to persons affected by severe mental illness. For me, it was energizing to help form a NAMI strategic partnership in 2008 that obtained passage of a congressional resolution declaring the month of May as Borderline Personality Disorder Awareness Month.

• F ocus on Youth. NAMI will develop and implement strategies that engage youth, young adults and their families.

Many of my favorite NAMI experiences involve seeing young adults support each other with caring openness.

NAMI is forming the Young Adult Advisory Group to help guide NAMI programs for young adults.

• S trengthen the Organization. NAMI will grow and develop financing infrastructure and capacity that supports a vibrant and bold organization.

The re-chartering of NAMI State Organizations has been a success, thanks to NAMI leaders across the country.

NAMI and NAMI State Organizations now are re-affiliating NAMI Affiliates. The process includes ensuring that Affiliates operate as nonprofit corporations to promote better protection of the personal finances of Affiliate board members and volunteers. An Affiliate can be its own nonprofit corporation, or it can be part of a willing State Organization or nearby incorporated Affiliate.

NAMI is also building and expanding its strategic partnerships, such as with Alpha Kappa Alpha, the oldest sorority founded by African American women.

As I end my six years of service on the board, I have strong confidence in our alliance, including its commitment to the strategic drivers for 2015 to 2017.

Jim Payne, J.D. President, NAMI Board of Directors

Spring 2015 | NAMI ADVOCATE | 3

N A M I

N E W S

Helping Get Teens Talking About Mental Health

NAMI Partners with Oldest African-American Sorority in the Country Alpha Kappa Alpha Sorority, Inc. (AKA) and NAMI have partnered together to increase mental health awareness in the African American community.

AKA, often hailed as “America’s premier Greek-letter organization for African American women,” is the oldest African American sorority in the country and is comprised of more than 283,000 members in 987 graduate and undergraduate chapters.

AKA chapters will work with NAMI State Organizations and NAMI Affiliates to provide information about mental health, treatment and recovery to the African American community. Together, we can help communities access much-needed services and support.

If your NAMI State Organization or Affiliate is interested in working with an AKA chapter, visit www.nami.org/akaresources.

NAMIWalks Keeps Marching Never underestimate your ability to make someone’s life better.

This spring, there will be 44 NAMIWalks across the country and another 42 this fall. Join a walk to change minds, make a difference and end stigma. Visit www.namiwalks.org to register for the NAMIWalk nearest to you.

4 | NAMI ADVOCATE | Spring 2015

Although 1 in 5 teens lives with a mental health condition, more than half of them are not getting the help that they need. Raising awareness by sharing information and starting conversations about mental health is key in reducing misconceptions of mental health and increasing the likelihood that teens will seek help when they need it. To get those conversations started, NAMI has created Say it Out Loud.

Say it Out Loud gives adults the tools they need to hold conversations about mental health with teens in faithbased or community youth groups. The toolkit includes: • A short film showing the 10 common warning signs and three youth sharing their experiences.

• A discussion guide on how to hold a successful group discussion.

• A narrated presentation for the group facilitator to learn more about mental health conditions in youth.

• F act sheets and information about how to connect with NAMI in their communities.

Visit www.nami.org/sayitoutloud for more information.

N A M I

N E W S

If You’re Reading This, We Want to Hear from You! Do you have 10 minutes to help NAMI? We want your thoughts, suggestions and ideas to help make the Advocate the most informative and engaging mental health publication possible. Do you want to see more stories on the latest research? More interviews with authors, musicians and others who are raising awareness about mental health? Or maybe more content on tips to help live well with a mental illness?

Let us know what you would like to see in upcoming issues by completing the survey at www.surveymonkey.com/s/advocate2015.

Treatment, Not Jail NAMI is very excited to announce a new national initiative, Stepping Up, which aims to reduce the number of people with mental illness in jails.

Stepping Up is led by the National Association of Counties, the Council of State Governments Justice Center and the American Psychiatric Foundation, and its goal is to bring together local and state officials across the country to work together on reforms.

Individuals and county leaders can sign up to support the initiative online. NAMI members and leaders should reach out to their county leaders and ask them to join in and commit to change. To learn more, go to www.nami.org/steppingup.

The NAMI Effect This May, NAMI released a new TV PSA showing how one small moment can make a difference in someone's life. Every time you offer your hand to pick someone up. Every time you share your strength and ability to persevere.

Every time you offer support and understanding to a family who is caring for a loved one. You can help change lives. Hope starts with you. The PSA is being distributed to more than 1,000 broadcast and TV networks. NAMI Affilites or NAMI State Organizations, can request the PSA for distribution to their local stations at no cost. To learn more, visit www.nami.org/psa.

Breathe Easy with AIR NAMI AIR (Anonymous. Inspiring. Relatable.) is the new NAMI app designed to provide another way for individuals living with mental health conditions and their family members/caregivers to find and give support by connecting with others through their smartphones and computer tablets.

AIR allows people to anonymously share their stories and receive feedback in the form of social interactions, such as “like,” “hug” and “me too.” It also allows users to

access information on how to get help, learn more about NAMI and connect with the NAMI HelpLine.

AIR facilitates personal connections with others who may be going through, or have been through, similar situations. Users are anonymous, but are not alone.

Search for “NAMI AIR” and download for free from the Apple App Store or Google Play Store today!

Spring 2015 | NAMI ADVOCATE | 5

A F F I L I A T E

S P O T L I G H T

NAMI Juneau

By Joni Agronin, NAMI Communications Coordinator

N

o roads connect Juneau with the outside world. The city is surrounded by ice packs and the only way to get there is by plane or boat.

These geographic—as well as weather-related— barriers mean that it’s not always possible for everyone living in Alaska to get the support they need in person. Thankfully, NAMI Juneau has risen to the challenge.

NAMI Juneau, has been in existence since the early days of NAMI and, much like other Affiliates, was started by parents who had children living with mental illness. But unlike most other Affiliates, it faced immense challenges due to lack of funding, lack of support, and of course, geographical obstacles.

In addition to NAMI Juneau, there are three other Affiliates in Alaska. NAMI Juneau and NAMI Anchorage are funded by the Alaska Mental Health Trust Authority. NAMI Fairbanks, which has no full-time staff, and NAMI Barrow, which is in the northernmost city in all of the United States.

The flight distance between Barrow and Juneau is 1,094 miles. That’s about the same distance as between Denver and Birmingham, Ala.!

“We’ve made some great strides, but my goodness we have a long way to go,” says Shirley Holloway, president of NAMI Alaska. “We’re a huge a state, and we don’t have enough people or enough money, but we’re working on it.”

“And Alaska is also not that heavily populated. There’s only about 850,000 people in the state,” says Dov Gartenberg, former executive director of NAMI Juneau. “People are spread out on islands, native communities and villages, and all throughout the inside passage. To organize a state NAMI here, including legislative efforts, the travel is very expensive, so we do a lot of remote conferencing.”

Crystal Bourland is NAMI Juneau’s new executive director and is following in the footsteps of Gartenberg’s tremendous leadership and dedication. Most of its limited budget is provided by the Trust, but that’s quickly changing. “In the last couple of years, we’ve really amped up our local fundraising, so we have much more local support and grants that have enabled us to expand our activities,” says Gartenberg.

Finding money was a learning experience for the allvolunteer staff at NAMI Juneau. Gartenberg met with people all over the state in different towns and organizations. One by one, he eventually found resources. “We focused on fundraising that would really raise our visibility in the community,” he says.

One of NAMI Juneau’s success stories was an event called Comedy for a Cause.

The first event was last May and drew a full

6 | NAMI ADVOCATE | Spring 2015

house of more than 200 people. This year, the organization is presenting Stand Up for Mental Health, for which David Granier, a comedian from Vancouver, is coming to perform.

(Granier performed at the 2013 NAMI National Convention in Seattle.)

Because NAMI Juneau is not large enough to hold a NAMIWalk, it puts on the Extra Tough Run/Walk where participants wear Xtra-Tuf boots, which are a common site throughout Alaska. “You have to be extra tough to face mental illness,” explains Gartenberg.

One of the main goals of the Affiliates and the State Organization is to provide support to families and individuals remotely. There are so many gaps in the types of mental health support available in Alaska, though, and people often have to travel to different cities or even to Vancouver to get the professional help they need. “Elsewhere, it might be finding the right doctor,” says Bourland. “Here, it’s just about finding a doctor.”

“One of the native populations received a grant that includes having a video conference system to be able to use NAMI Family-to-Family around southeast Alaska (where NAMI Juneau is located),” adds Gartenberg. This is something that NAMI Alaska has wanted to implement for a couple of years, and the organization is excited to take on this new collaborative opportunity over the coming months.

Because of the unique challenges faced by NAMI Alaska, it’s imperative that they meet individuals where they are— both physically and culturally. “We really try to utilize the local expertise and bring providers, family members and those with mental illness together to learn and share resources,” says Gartenberg. “Every NAMI [Affiliate] really has to understand their locale.”

This past March, NAMI Alaska brought in a psychiatrist and a therapist from the Alaska Native community and discussed integrating native therapeutic practices, such as drumming and potlatches, with traditional Western forms of treatment. “Every NAMI [Affiliate] has its own distinct challenges, but I think where our success has been is in getting to know our community,” says Gartenberg.

Taking Another Look at Clozapine

A Too-Often-Forgotten Treatment for Schizophrenia

By Ken Duckworth, M.D., NAMI Medical Director

A

patient of mine once told me that clozapine was “chemotherapy” for her brain: both the best and hardest treatment.

She was back in college in no small part as a result of the reduction of her symptoms on clozapine. But while she felt that it gave her her brain back, she searched aggressively for the lowest dose that would work for her. I had had cancer as a resident and found this to be an apt metaphor, although my chemotherapy lasted for a much shorter duration.

At the NAMI National Convention each year, someone invariably comes

up to me and says, “We took a look at clozapine like you said at last year’s convention, and it has made such a difference for my son/daughter.” I cannot give specific medical advice in my role as medical director, especially while standing in line for coffee, but when I am told about severe symptoms of psychosis for a person living with schizophrenia and that two antipsychotics have been unsuccessful, clozapine is my go-to recommendation.

This past year, I mentioned the annual “hug trend” following my Research Update on Schizophrenia session, and I told the attendees that I had gotten many hugs over the years

for this simple suggestion: Take another look at clozapine. After this past year’s session, three more people came up to me and simply gave me a hug and a smile.

So what is clozapine, and why is it different? Well, it’s unique for two primary—and significant—reasons: One, it is the only FDA-approved medicine for people with schizophrenia who have not responded to two antipsychotics, and two, it is the only medication shown by the FDA to reduce the risk of suicide in people with schizophrenia and schizoaffective disorder.

We don’t endorse specific treatments at NAMI, but reminding people that

Spring 2015 | NAMI ADVOCATE | 7

this treatment has two special FDA indications is good to remember. The consensus in the medical community is that this is an underutilized treatment. I have personally seen many individuals thrive on this medication when no other treatments worked. It has been a part of some of my happiest moments as a doctor.

I am big on shared decisionmaking—and understanding clozapine’s unique qualities is important, both in its potential and in its risks. Clozapine does have important medical risks and is not an easy treatment to take. For example, clozapine requires mandatory, regular bloodwork to reduce the risk of one of its possible side effects, agranulocytosis, which is the potentially fatal loss of white blood cells. This begins as a weekly requirement and becomes less frequent over time, but it never stops.

Side effects of clozapine can also include weight gain, constipation that can become severe, the potential to develop diabetes, sedation and drooling.

There are other less common side effects as well, like myocarditis (an inflammation of the heart) and seizures.

A person should consider both the potential for better symptom control and how to plan for and deal with the medical risks.

Some people are able to cope with the side effects better than others. One of my patients once asked me, “What is with you guys? I can only have a mind or a body?” Despite responding well to clozapine, she could not use the medicine over the long term because of its side effects. Careful attention to diet and exercise for motivated people on atypical antipsychotics can reduce these risks, though (see the accompanying article by Jackie Feldman, M.D., on side effects.

In spite of these challenges, many of my patients have done quite well on clozapine. It has been a building block of recovery for many in my own experience, and this is borne out in the research literature. In the past decade, two large multisite studies, the NIMH-funded Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) in the U.S. and the Cost Utility of the Latest Antipsychotic Drugs in Schizophrenia Study (CUtLASS 2) in the U.K., compared multiple antipsychotics

8 | NAMI ADVOCATE | Spring 2015

for people with schizophrenia, and both found clozapine to be the most effective medication. In the U.K. study, the focus was on quality-of-life measures, and those taking clozapine reported the highest scores.

Clozapine is also unusual in that blood levels are available, which can help to correlate a response to dosage. In addition, there is research that suggests that clozapine is a good mood stabilizer, may reduce substance cravings and may reduce aggression. These are not FDA-approved uses, but the literature can also inform discussions about when it could be considered. It is important to review all of the possible impacts of a treatment as part of shared decisionmaking between me and my patients.

I recently spoke with Dan Laitman, a senior at the State Univerity of New York-Purchase, who began hearing many voices at the age of 15 at a sleepaway camp. He hid his symptoms for a while, but they eventually became too strong to ignore. He didn’t do well on many other antipsychotic medicines, but then he tried clozapine. He reports that clozapine has made his voices softer and less intense. There are still “many people living inside my head,” he told me, but clozapine has made it much more tolerable for him.

To help ward off the weight gain, he runs to keep in shape. He is a writer and is currently working on a sitcom about college. He also dreams of being a standup comic and made me laugh several times during our interview.

Little of this would have been possible without the combination of a loving family, cognitive behavioral therapy and clozapine, he says.

I spoke with Dan’s dad, Rob Laitman, an internist and marathon runner who passionately advocates for clozapine, in part based on his son’s successes. To help avoid some of the side effects, he gets his patients to join in his running. (I asked Dan if he ran with his dad, and Dan joked, “No, that would be sadistic.”).

Dr. Laitman agrees that integrated care to monitor and prevent side effects is essential. He shared an observation with me that I have also found in my years of working with people who have schizophrenia: While it can be a challenge on a person’s body, the

improved thinking that comes with a reduction—or even an absence—of symptoms can help to foster a positive approach to the problem of weight-gain prevention.

The New York State Office of Mental Health has made a concerted and systematic effort to have doctors and patients who have failed two antipsychotics take another look at clozapine as well. Drs. Jay Carruthers and Lloyd Sederer are leading an educational and quality-improvement project to raise awareness of this unique treatment. They have pursued a statewide approach to educate patients about clozapine’s profile as a treatment, and to work with psychiatrists in state hospitals and community settings to reconsider this as a more active treatment option. This could become a model for other states to emulate, given the potential boost it can give to recovery for some individuals. Their initial findings show an increase in use, and they will be presenting the results of their important initiative at NAMI’s 2016 National Convention in Denver.

Clozapine is a treatment option that requires thoughtful assessment. While I have seen many people do very well, a handful of my patients haven’t been able to get over the side effects, and a few have had serious medical complications.

We still cannot predict in advance who will thrive on this treatment and who will have difficult or serious side effects.

Yet it is a unique treatment that deserves a second look if you or a loved one has symptoms that do not respond to other antipsychotics.

Hopefully, we will get a return on the neuroscience and genetic fronts in terms of new treatments for the hard-totreat symptoms of schizophrenia and schizoaffective disorder. These new treatments will need to be less difficult to tolerate and have fewer risks. In the meantime, if you aren’t getting the symptom control you want, I encourage you to take another look at clozapine with your doctor. While I cherish my annual convention clozapine hugs, I look forward to the day when we can give them all to the researchers who develop better treatments.

Getting the BIG Picture Risks and Responses to the Weight-Change Side Effects of Psychotropic Medications

By Jacqueline M. Feldman, M.D., NAMI Associate Medical Director

R

ight up front, I have to tell you: I have diabetes, hypertension and elevated triglycerides.

And I am overweight. So I understand the eye-roll you are probably giving me when you read the title of this article.

I’ve given the same eye-roll to my own doctor when she starts to give me the “you need to watch what you eat and get more exercise” talk, which typically comes after my “How much clothing/ shoes/jewelry can I take off before I step on the scale?” maneuver.

For people with illnesses that contribute to anergia (lack of energy), amotivation (lack of motivation) and anhedonia (inability to experience pleasure)—in other words, your get-upand-go has got up and went—or who are on medicine that contributes to weight gain, reality is even harder to face.

The long-term consequences to your health are significant. As detailed in a seminal paper by the National Association of State Mental Health Program Directors (NASMHPD), on average people with a serious mental illness die 25 years earlier than the general population. Dr. Thomas Insel, director of the National Institute of Mental Health (NIMH), notes three major potential contributors: • C linical risk factors, which include those who smoke—44% of all tobacco is smoked by people with mental illness—and those with co-occurring medical illnesses like obesity, diabetes and cardiovascular disease.

• S ocioeconomic risk factors, which include considerations like poverty, increased stress and inadequate nutrition.

• H ealth care systems that lack integrated care like ignoring obesity in someone with schizophrenia.

Weight gain is a potential side effect of antipsychotic medication. Some medications are more liable to cause weight gain than others, but all have the potential. One theory for this is that second-generation antipsychotic medications dull the feeling of fullness when we eat. (To prevent this, talk with a nutritionist or with your doctor about ways to use other cues or portioncontrol strategies to limit your intake while on medication.)

These medications may also contribute to the development of metabolic syndrome, which can mean increased weight, hypertension, waist size and risk of diabetes. So what’s a person to do, especially if the medicine is helping and they don’t want to change?

Like my skinny doctor says, eat less, exercise more. Or like I gently and persistently say to every patient I see, stop smoking, stop drinking and avoid substance use. Mental health providers should advise patients of the possible consequences of taking antipsychotic medicines and conduct follow ups, but it cannot stop there.

But all is not hopeless, not by a long shot. A recent study in Psychiatric Services demonstrated that participating in a fitness health mentor program, which included a fitness club membership and education by a dietician, led to sustained exercise program attendance, notable increases in energy and improvement in nutritional eating. Almost 50% of these people achieved significantly improved clinical fitness, which could translate to a significant decrease in cardiovascular risk.

Unfortunately many of us cannot afford a personal trainer, or even a fitness club (though I can’t help but think how wonderful it would be if every insurance company could do the math and see

that the small amount of upfront money to provide such services would more than adequately balance the financial consequences of paying for a stroke or a heart later).

However, we can find an exercise buddy, that person who will pull us out of the chair and tug the remote control/game control/phone/food out of our hands. We can find that person to share healthy recipes, as well as grocery shopping trips, with in order to avert buying that box of donuts.

If lifestyle interventions aren’t helping, you may want to ask your doctor about metformin, which is used for treating type 2 diabetes. There are no magic bullets for weight loss, but metformin has been studied in this area and may be worth discussing. However, it is not FDA-approved for weight loss.

Small successes breed more successes. Tie fitness and healthy food choices to definite short- and long-term goals that don’t always focus on strict calorie counting or absolute pounds lost—goals like, “I want to look better at Easter services,” “I want to walk up two flights of stairs without breathing hard,” or “I want to be here for my daughter’s wedding, for my nephew’s graduation.”

The risks of weight gain and co-occurrence of medical problems aren’t new. Neither are the risks of weight gain with the medications used to treat mental illness. Let’s use that knowledge to take better care of ourselves, and our loved ones, by developing new ways of increasing and sustaining our fitness and healthy eating, so that we can be around for the long-run.

For more information on taking care of your physical health, visit www.nami.org/ find-support/taking-care-of-your-body Spring 2015 | NAMI ADVOCATE | 9

Getting Support Without Giving Your Name Why the Ability to Stay Anonymous Is Necessary

By Joni Agronin, NAMI Communications Coordinator

S

peaking out about mental illness is no easy task, especially when it involves disclosing your own mental health condition. While it can be an empowering experience for some, there is no doubt that it can also be petrifying for others.

Because mental health conditions can often be incredibly isolating, the ability to rely on a solid support system is often a key part of the recovery process.

But building that foundation of support should not mean you have to be totally open to everyone about your condition. So is it possible for someone to still receive the benefits of peer support even if he or she doesn’t feel comfortable “coming out” about their diagnosis?

The decision of whether or not to disclose a mental health diagnosis is an incredibly complicated and personal one, and it should be a choice that every individual gets to make on their own without worrying about how it will affect the success of their treatment. “It’s an intensely personal decision,” says Dr. Ken Duckworth, NAMI’s medical director. “You have to really be prepared for the consequences of telling people.”

“Even today, there is a tremendous amount of stigma associated with living with a mental health condition,” says Sarah O’Brien, program manager for NAMI’s Peer-to-Peer education program. “Anonymous support gives people a safe way to explore, learn and grow without having to worry about the misperceptions or judgments of others.”

For those who want to refrain from sharing their personal experiences with mental illness, however, there are many valid reasons for feeling that way.

10 | NAMI ADVOCATE | Spring 2015

“It is hard enough to hear voices, have intense moods, or experience fears and anxieties that compromise day-to-day living,” says O’Brien. “Dealing with the added stress caused by societal stigma can be challenging. People have legitimate fears of losing jobs, losing relationships or being judged by the communities that they are a part of. In reality, they are doing their best to thrive and achieve personal goals just like anyone else. Anonymity gives people the privacy they desire and the support they need. Experiencing safety in an environment where frank sharing is possible can be essential to personal success and well-being.”

The topic of anonymity is one that is relevant to many other health conditions. For example, an article from Recovery.org, an organization that focuses on providing resources to help individuals recover from substance abuse and behavioral disorders, talked about why people find the privacy of Alcoholics Anonymous (AA) so appealing. “For the recovering addict, anonymity allows for a safe space to open up to others and address issues they wouldn’t feel as comfortable discussing in a more public setting.”

There are anonymous support groups available for all kinds of challenges that people may or may not want to publicly disclose, both for health conditions and otherwise.

For example, individuals can find support for sex addictions, gambling addictions, eating disorders, sexual trauma, nicotine use and narcotic addictions, among others.

In addition to anonymous in-person support programs like AA, emerging technology has been integral in the growth of the array of support options available to individuals. With one quick search on my iPhone, you can find 503 different apps to help people manage their mental health, including NAMI’s new smartphone app, NAMI AIR. NAMI AIR, which stands for Anonymous, Inspiring and Relatable, enables individuals to seek and provide support from their peers in an anonymous fashion with a few taps of their fingertips. Users are able to share posts about how they are feeling currently, or troubles they are having with a loved one, and then provide support to others through comments, virtual hugs and empathetic “Me Too” tags.

Not only does this technology help people receive support and information, it provides a forum for them to provide it as well. “One of the great secrets of this technology is that people

actually love to give,” says Dr. Duckworth. “People aren’t there to just receive services. You can get a lot simply by giving back.”

The things that make peer support so special and so important—a sense of community and an ability to ask for and provide assistance during challenging times—can easily be achieved even in an anonymous way. Knowing that a person is there and has been through what you are experiencing can make a huge difference, even if you don’t know who that person is.

This idea is reaffirmed in the work that O’Brien does every day. “A peer understands your struggles at a core level.

They can empathize with you and help you tap into personal strengths and resiliencies in a way that others can’t. When someone receives education and support from a peer, they get the benefit of the peer’s lived experience, while also gaining hope and assurance that they are not alone. The assistance of a professional treatment team is often a vital part of recovery, but to have the support of a peer on the journey is a powerful, transformative tool.”

Ultimately, Dr. Duckworth believes anonymous support is here to stay. “We all need to be heard and understood in life— that is a core human desire. In an ideal world, no one would be closeted about any aspect of their identity. But we aren’t there yet.”

O’Brien echoes Dr. Duckworth’s belief. “There is nothing to be ashamed of in deciding to seek anonymous help. Getting support is the most important thing.”

We asked some of our Facebook followers why they feel that anonymous support is important:

Anonymous support allows a person struggling with mental health the chance to reach out to another caring human without the fear of being rejected or dismissed due to the challenges they are facing. — Emma

NAMI Anonymous Support Options You Are Not Alone: An online story-sharing hub for individuals to post their experiences with mental illness.

Whether the person has been diagnosed with a mental health condition or is simply a friend or family member, he or she can find and share information and support.

Visit notalone.nami.org to follow.

OK2Talk: An online story-sharing hub for young people to vent, ask for help and share success stories on the topic of mental health. Visit www.OK2Talk.org to follow.

NAMI AIR: A new free smartphone support app through which both individuals living with mental illness and their family members or loved ones can share their thoughts and feelings while connecting with and supporting their peers. Visit www.nami.org/Find-Support/Air-App for more information or go to the App store to download.

Discussion Groups: NAMI.org contains discussion groups on various topics where people can ask questions, share thoughts and connect with others. Visit www.nami.org/ Find-Support/Discussion-Groups to get involved.

Far too often, it is easier to talk to a stranger than to talk to someone who has an emotional connection to us.

This makes us feel like we can open up without hurting the other person or feeling like we are disappointing someone because of our thoughts, feelings or actions.

— Lisa

For people who are at the beginning stages of asking for help and also revealing to themselves that something isn’t right, it’s an easier way to seek help from someone you don’t know/anonymously because there’s a lack of stigma and judgment. If you go to family and friends, there’s the fear that they’ll view you differently.

— Jessica

Some things aren’t easy to talk to others about, but when you don’t have to worry about others finding out, it can be easier to get things off your chest. — Rebecca

I don’t think people need to be physically around you to help you deal with mental health issues. Sometimes, a site like this can help people realize that MANY people are struggling with similar issues. Unfortunately, not everyone has a strong support system. — Terry

Spring 2015 | NAMI ADVOCATE | 11

Mental Health Parity Still a Long Way to Go

By Dania Douglas, NAMI State Advocacy Manager

I

magine this: You are in your late 20s and have just been diagnosed with bipolar disorder. Your doctor has recommended that you meet with a therapist on a weekly basis and that you see a psychiatrist to monitor your medications. You spend the next two weeks calling every mental health provider in your health plan’s directory before you find a single psychiatrist who will see you—in two months.

In the meantime, you sit down with a calculator to add up the price of your medications and weekly doctor visits.

The costs are scary. How are you going to balance this new diagnosis, the treatment, the bills and that new job you just started?

For many Americans living with a mental health condition, this is reality.

Despite recent laws that improve access to care, many still struggle to find appropriate treatment they can afford.

For many years, insurance companies provided limited coverage for mental health services, and some excluded mental health benefits entirely. Those plans that did provide benefits often set limits on the number of visits a person could make to a mental health professional, refused to cover certain types of treatment, or limited the amount of money that the health plan would spend on mental health services.

Many people seeking mental health treatment found that they were paying for services entirely out of their own pockets— and very few could afford it.

Seeking a solution to these problems, Congress passed the Paul Wellstone and Pete Domenici Mental Health Parity and Equity Addictions Act in 2008. Originally, this law applied only to health insurance plans offered by “large employers,” employers with 50 or more people on their staff. While the law did not require insurance plans to offer mental health coverage, if mental health treatment was covered, benefits were required to be on par with other medical or surgical benefits.

In 2010, Congress enacted the Patient Protection and Affordable Care Act (ACA).

The ACA gave millions of uninsured Americans access to more affordable health coverage and health care. The ACA also established mental health and substance use as one of 10 categories of essential health benefits required in most new individual 12 | NAMI ADVOCATE | Spring 2015

and small group plans sold both inside and outside the ACA marketplaces.

In addition, the ACA also extended the Mental Health Parity and Equity Addictions Act to small group and individual plans.

While these laws have been a huge step toward ensuring mental health parity and ending insurance discrimination, we are a long way from guaranteeing that all Americans have access to the mental health care that they need.

In April, NAMI released A Long Road Ahead: Achieving True Parity in Mental Health and Substance Use Care, a report highlighting the results of a survey given to over 2,700 people about their experiences with health insurance coverage. In particular, the report found:

• P eople had serious problems finding mental health providers or psychiatrists in their insurance plan network.

• P rovide tools to our state leaders to help them advocate for better access to mental health services.

• M any had a hard time getting the type of prescription medication they needed.

• R espond to and track enforcement of federal rules and regulations governing the implementation of the federal parity law.

• O ut-of-pocket costs were high for both prescription medications and mental health treatment. These costs were a roadblock to care for many people.

• H ealth insurance companies often denied claims for mental health care.

• W hen shopping for health insurance, consumers did not have the information they needed to choose the most effective plan.

So, where do we go from here?

How can we make sure that individuals have the information necessary to make decisions about health insurance? What can be done to help people gain access to the supports and services they need?

Here is what NAMI recommends:

There is much work to be done to make sure that everyone with a mental health condition has access to the services and supports they need, but we will not stop until a wide range of effective treatments, services and supports is available to all who need them.

For more information and to download the report, visit www.nami. org/parityreport.

• I nsurers should be required to post up-to-date, accurate directories showing which treatment providers are accepting new patients.

• I nsurers should be required to publish the standards they use to approve or deny mental health claims. This information should be clear and easy to access.

• T he U.S. Department of Health and Human Services (HHS) should require all health plans to provide clear, understandable, easy-to-access information about health benefits and should help people make decisions about the health plans that best meet their needs.

• C ongress and the federal government must work together to reduce outof-pocket costs for people with lower incomes.

• M ental health parity laws must be strictly enforced.

These recommendations are just a starting point. To make sure these recommendations are implemented, NAMI will: • W ork with the Parity Implementation Coalition and other partners in the field to ensure that the law is properly enforced.

• P rovide informational materials, including an infographic and Web page to help people understand their rights and how to take action if those rights are violated.

• C ontinue to track people’s experiences of insurance coverage through surveys and other tools.

Spring 2015 | NAMI ADVOCATE | 13

Selecting Treatment Shouldn’t Be Like Flipping a Coin

By Brendan McLean, NAMI Communications Manager

M

ost people don’t expect their doctor to reach into his or her pocket and pull out a coin to decide which treatment to suggest. But for many people living with depression, or any mental illness for that matter, this is how it often plays out.

OK, the doctor doesn’t literally reach into his or her pocket and grab a coin when picking treatment options, but when deciding between therapy and drugs, doctors often rely on prior experiences and research conducted on others to determine the best course of treatment.

This can lead to an arduous trial and error process for you.

But what if we can reduce the number of attempts—and exasperation—it sometimes takes before a treatment that works is selected? Thanks to the work being conducted by Dr. Helen Mayberg, this may be a possibility in the future.

A professor of psychiatry and neurology at Emory University in Atlanta, Mayberg has devoted the last 20 years to creating a map of depression to expedite providing effective treatment. Brain imaging is her compass.

Brain imaging methods, such as positron emission tomography (PET) scans or functional magnetic resonance imaging (fMRI), are used to examine portions of the brain that are thought to be directly affected by depression.

In a recent study published in JAMA Psychiatry, Mayberg conducted a test on individuals with depression by providing them with either 12 weeks of treatment with an antidepressant or cognitive behavioral therapy (CBT), an evidence-based practice that teaches people to become aware of and correct

14 | NAMI ADVOCATE | Spring 2015

negative thinking. She found that people who before treatment had low activity in the region of the brain called the anterior insula responded quite well to CBT, but poorly to the antidepressant. Conversely, those with high activity in this region had an excellent response to the antidepressant, but did poorly with CBT. In other words, Mayberg was able to predict the response to a treatment based on the activity in the right anterior insula.

An Idea More Than 30 Years in the Making The use of imaging to study depression in the brain can be traced back to the mid-1980s, when Robert Robinson and his colleagues used computerized tomography (CT) scans to look at the location of strokes in people who went on to develop depression. They discovered that damage in specific locations was associated with depression following the stroke.

Mayberg’s first work was published in the late 1990s and looked at patterns of depression in neurological disorders, such as stroke, Parkinson’s and Huntington’s. She discovered that everybody had the same pattern regardless of the underlying illness.

“We saw that although people all met the same criteria, they didn’t all look the same, even though they were clinically identical,” she says.

Depression is defined by a constellation of signs and symptoms designated by the DSM-5. But even though symptoms may look the same, the cause—and location— of the illness may differ.

“We began to think about what might be different about your brain to start, and that’s how we started to think about a biomarker that might be predictive of how you were going to do.”

So Mayberg and others asked, What happens when you treat people with treatments proven to work? How does the brain react and change? They looked at patterns in the brain on antidepressants and saw that the people who got better had changes in the brain that people who didn’t get better didn’t have.

The next step was to look at how cognitive therapy might affect the brain. What they found, she says, is that “[c]ognitive therapy does not look like placebo, and it does not look like drug. It acts on the brain differently.”

Finding the Right Treatment A doctor can’t simply say, “You have pneumonia. I hear it and see it on the chest x-ray. Here is some penicillin.”

While penicillin may work great for pneumonia, if you have tuberculosis it’s not going to help you at all.

The same symptoms may not have the same cause, and this makes the choice of treatment pivotal. It may very well end up being an unexpected treatment that works best. In a recent NPR article, a woman diagnosed with a brain tumor who wasn’t responding to traditional treatment was given a drug used for skin cancer. Sure enough, it worked. While the cancer was in her brain, the biomarker was associated with a type of cancer normally found elsewhere.

Knowing that treatments can be localized to specific biomarkers is important because when looking at brain imaging, one can see that symptoms of depression, such as anhedonia and cognitive dysfunction, aren’t found in the same parts of the brain, and different treatments don’t all work on the same parts of the brain, either.

Intuitively, this makes sense; these treatments are often used in a complementary manner. If they were redundant, you wouldn’t need to use both.

Using One Treatment to Help Another “When people don’t get well, one of the first knee-jerk reactions is that you didn’t give enough of the drug; it metabolized,” Mayberg says. “With therapy, it’s you didn’t have a good therapist, which could be very true, or you didn’t do the exercise. But maybe your brain wasn’t in the configuration that could do the exercise.”

In CBT, one of the things you can practice is mindfulness.

In mindfulness, you attempt to become aware of your thoughts, feelings and even your breathing.

“If the insula is in a state where you can’t monitor your own breath, you give up on mindfulness, so maybe you actually need a drug to allow you to be mindful,” she says.

She illustrates this point by using tennis, something that she knows well herself.

The analogy is this: You’ve been playing tennis for years, and all of sudden you find that every time you hit a backhand shot, it goes into the net. The more you keep trying to adjust, the worse it gets. Perhaps what’s happened is that you’ve adopted a habit that you can’t even see that you’re doing. So you go to a trainer to help you unlearn the bad habit.

However, if you have a bad tendon in your wrist, that trainer can be perfect, but no matter what, it won’t work.

Once your wrist gets fixed, you might still have to go to the trainer because you might still have a whole bunch of bad habits that you had been doing with your bad wrist.

Which Therapy? Which Drug?

People might point out that Mayberg only tested one therapy and only a few antidepressants, but she explains that it’s not about knowing this drug versus another drug; it’s about knowing who shouldn’t receive a drug in the first place.

“Within drugs there is going to be variance, so once you eliminate the people who need therapy, maybe there’s a genetic marker for choosing the one that’s better,” she says.

She believes the same could be true for therapy.

In the case of depression, everyone who takes drugs would probably benefit from some form of cognitive therapy. But the inverse isn’t necessarily true: Not everyone who responds to therapy needs drugs.

“If what your brain needs is a good trainer, and not surgery (or likely medication in the case of depression), then that’s what you should do.”

The Possibility of Preventative Scanning There are many things we do now that are preventative measures. We have colonoscopies, we have mammograms, we have prostate exams and we have blood tests. So perhaps scans can not only help identify what treatment might work best after a person has developed depression, but perhaps help to implement strategies before symptoms even manifest.

Mayberg believes that this could be a possibility, in the same way that researchers have looked at biomarkers in the prodromal stage of schizophrenia, but experiments need to be conducted first.

“Until we identify some markers, we won’t know what to go looking for. Scans are not dangerous, but they take time and money, and they have to be reliable,” she says. So the goal is to do as little as possible, but still get the maximum amount of information. “It’s not like putting fluoride in the drinking water,” she adds. “Not everyone should have a scan.”

However, once depression is apparent, she believes that scans shouldn’t be considered dangerous or superfluous. They should be considered a viable component of treatment.

Changing the Way Treatment Is Done The hesitation to use scans or any other form of potential mechanism available to identify mental illness is problematic, to say the least. Beyond being able to identify the best treatment, scans can also change public perceptions of what it means to have a mental illness.

“That is as stigmatizing as anything else,” says Mayberg.

“Why should psychiatry be different? When you have chest pains—and it’s actually just because you ate a bad burrito— you show up at the emergency room, you get tons of workups.

There are estimates that you get 85 biomarkers run, your blood tested, an EKG, you get a scan.”

But the wide variety, and costs, of tests shouldn’t matter.

“You need what you need, period,” she declares. “Treatment isn’t driven by market forces, it’s driven by biology.”

Spring 2015 | NAMI ADVOCATE | 15

What Does It Mean to Have a Mental Illness?

By Brendan McLean, NAMI Communications Manager

T

he Diagnostic and Statistical Manual of Mental Disorders (DSM 5) defines a “mental disorder” as “a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning.”

The DSM 5 is the guidebook that is followed by clinicians, psychiatrists, therapists and other mental health

It means feeling like you are forever swimming against the tide.

Sometimes you find a gentle current where you can enjoy your very existence, only to be overtaken by a horrific undercurrent that makes you fight the water for your very life. Then there are times you’re just too tired to swim and you begin drown, hoping someone will actually save you, and maybe someone does, but they can’t get you out of the water. And eventually you care enough about them to let them go or they become too weary holding onto you and let go.

—Johnnie

16 | NAMI ADVOCATE | Spring 2015

providers to help them decide how to evaluate and diagnose when they come into their office, hospital or other treatment setting. But like the walls of a hospital, the guidebook may seem a little clinical and sterile. It doesn’t provide much insight into what those illnesses really translate into for real people. It doesn’t explain what it’s like to live dayto-day with a mental illness.

No two days are the same, nor is each person’s experience. Beyond the clinical classification of a mental illness what it means to have a mental illness, there

is the personal experience that shapes the life of someone who is affected by these conditions. But rather than trying to come up with one succinct definition of a mental disorder, mental illness, mental health condition or whichever name you would like to call it, and to try to capture everyone’s sentiment in one brief paragraph—because that would be impossible—we asked people in our Facebook community who live it and those who experience it through a family member or loved one. This is what some of those people said:

That even in the midst of a great day, a black hole can appear and threaten to swallow me.

—Susan

It means working twice as hard to function half as well as others.

—Nicholas

For me, it means that I need to be extra mindful and not act on every impulse as they happen.

It’s a deliberate and conscious decision to choose my behavior. It also means swallowing my pride to say, “I’m sorry,” when I mess up. —Becca

It means having a unique way of processing information. It means having to prioritize differently than others.

—Stephanie

It means having difficulty finding answers to your problems when you don’t even know the questions.

—Angela

It means I have challenges many others will never, ever experience. It means I am so much stronger and resilient than those others as well. It means I need to continue to learn how to manage symptoms. It means there is darkness and light. It means acceptance of the uniqueness of who I am. —Bev

Living with stigma/shame. The word “disorder” kind of makes me angry. It is illness only. It has symptoms. I think language does matter when it comes to stigma. Bipolar is an illness. Depression is an illness. If everyone would think of it as being an illness instead of being wrong or disordered, maybe some viewpoints would change. —Amy

It means you are a human being and should be treated as a human being; you are not a DSM diagnosis.

—Tania

It means fighting just to survive. It means not being able to trust yourself at times because your mood affects how you perceive things, and your mood changes so often that your outlook and perception on life and situations also is always changing. It means defending yourself when other people misunderstand you. It means being alone and scared a lot. It means trying to describe feelings and symptoms that no one really understands. It means having difficulty at work and dealing with uninformed and unaware individuals re: your rights surrounding working with a disability. It means tirelessly fighting for yourself. It means dealing with a broken mental health care system. It means accepting that others will use your illness to not take responsibility for their own issues and problems. Sure, it doesn’t define us, but I do often find myself questioning who would I be today without bipolar disorder; it has limited me and it does affect my thinking. —Amy

It means I always wonder if my mind is lying to me or not (usually it is). —Jessica

It means I have certain strengths and certain weaknesses; it means I have to teach the mainstream how to accommodate my needs; it means I will have to learn to overcome stigma and discrimination at an incredible rate; it means I might have to take medication; it means I have to really know myself; it means I will live, love and give just like anyone else; it means I will have to be extra patient with those who do not understand and I will have to be a teacher to those who stereotype. —Joseph

It means struggling to understand yourself while also being mindful that others are, at the same time, struggling to understand you and the world you live in, which is very different from theirs. —Cassandra

I would explain, but I’m so exhausted from it. It has stolen my motivation from me. Come back Friday. —Judith

Spring 2015 | NAMI ADVOCATE | 17

I call it life.

—Joanna

It means the same challenge every day.

—Lisa

It means reminding my 13-year-old son that bipolar disorder is not a curse, nothing to be ashamed of, and that he can do great things in life, like Lincoln, Einstein and Van Gogh did before him. Most of all, it means that I love him and will do anything to help him achieve everything he desires in life, because he deserves it and is worth it. —Amanda

It means protecting my son from a world that doesn’t understand him, defending him from people who ridicule him, fighting to help him be comfortable in a scary world, trying to keep him calm, helping him to feel needed, giving up so much, but most of all seeing his beauty and loving him. —Tina

As a mother of a beautiful, misunderstood daughter with borderline personality and perhaps bipolar disorder, I’ll say it’s something new every day. It’s a roller coaster, for sure; terrifying at times, a thrill at others, but always worth standing in line. —Dawn

It means putting all the sharp objects up on the top shelf and holding my child’s hand every single step of the way to school and seating him away from the car door and working hard to get help and keeping secrets and people not asking how he is anymore ’cause they don’t want to hear it. However, good things will come from this long-term, and though this affects every moment of our day-to-day, yes, my child is more than this, so much more.

—Erin

Loving someone with a mental illness who doesn’t acknowledge it and who won’t get help is heartbreaking. You wait for the day when something good might happen, and pray that something bad won’t. —Cindy

For me, it means staying away from people, and things that are unhealthy for me. I am surrounding myself with people who are supportive, loving and caring! —Douglas

My mental illness does not define me. I am a person, with a name, in recovery, who happens to have a diagnosis (label) of Schizoaffective Disorder.

I prefer the term “thought disorder” because it is less clinical. I am not my label. I am not my mental illness. My mental illness does not limit me. My mental illness does not make me any lesser of a human being. Mental illness is not my fault. I cannot use my mental illness to justify my actions. I cannot use my mental illness as an excuse. Mental illness is not a cop-out. Mental illness is not a competition. Mental illness does not make me any different than anybody else. Mental illness is what it is: a lifelong challenge. And life does change with age and experience. —Susan

18 | NAMI ADVOCATE | Spring 2015

It means accepting with as much grace as possible that my brain doesn’t always work the way I want it to, and that some days, living is extrahard work.

—Melissa

It means that something is off in my biology and it affects my functioning at times. It does not define me. —Allsun

Putting a Band-Aid on a Bullet Wound Doesn’t Make Sense

Neither Does Speaking to Veterans in Ways to Which They Can’t Relate

By Joni Agronin, NAMI Communications Coordinator

Jayson Floyd and Tyler Grey from the film That Which I Love Destroys Me. Courtesy of Participant Media.

A

soldier is on his way home from a tour in Iraq, and a civilian in the seat next to him on the plane asks him, “How is it over there?”

Months later, into the camera of a documentary film, That Which I Love Destroys Me, he answers that question: “What do you mean, how is it? It’s a war. I don’t even understand that question.”

To me, that question exemplifies the way those of us who have not served

or aren’t familiar with the U.S. military think about war and about veterans.

We worry about what they go through and what they are doing while they are in combat, even though we can’t even begin to understand it, but we rarely think about how difficult coming home can be. But the coming home part is the only part that we can actually impact.

That Which I Love Destroys Me follows the lives and recovery journeys of two Special Operations soldiers, Tyler Grey and Jayson Floyd, who came home from

combat with both visible and invisible wounds. This film is a part of Participant Media’s social action campaign called Return the Service, which aims to “shine a spotlight on the many issues facing young service men and women returning to civilian life.”

I’m not a complete stranger to the military world, nor am I by any means an expert, but this film provides a level of transparency into the lives of two veterans that is hard to find elsewhere.

After watching the film, I knew I had to find a way to talk to Tyler and Jayson.

I wanted to know what their goals were for the film. The biggest thing they wanted to accomplish was to help people understand what veterans really go through when they come home from a war.

Jayson and Tyler said that what NAMI can do to help support homecoming veterans facing challenges is to normalize their experiences.

“We need to understand that these aren’t crazy people,” says Tyler. “[Posttraumatic stress disorder, or PTSD] is a natural reaction to this set of circumstances that would happen to any normal person.”

Jayson adds, “The biggest challenges happen, and the biggest growth happens, when [veterans] come back— those moments that a soldier may not be armed with the mechanisms of

Spring 2015 | NAMI ADVOCATE | 19

coping and opening up or expressing emotion. He has only learned how to bury it down or not share it or suck it up, and to normalize that process is the basis of understanding and the basis of acceptance.”

In the film, Jayson and Tyler describe their experience with PTSD as really being more like “LTSD”—lack of traumatic stress disorder. They explain that for them, it isn’t about the trauma they experienced during war, but about finding ways to adjust both emotionally and physiologically to the fact that once you are home, you are no longer experiencing any trauma.

Jayson says it is their way of helping to reframe the way civilians think about the illness from a veteran’s perspective.

“When you come home, you are actually more comfortable in a chaotic environment than you are in a very stable environment,” he says. “When [veterans] don’t find trauma in their own lives, or they are in a calm environment, they create chaos in their life to help calm them down.”

“The reason that [veterans] turn away from that term, PTSD, is because they don’t have a problem with traumatic stress,” says Tyler. “I don’t have a problem with thinking about war.

That’s not the issue. What scares them is taking their kid to soccer practice. It’s the re-wiring. LTSD and PTSD are the same thing; I am just explaining them differently.” According to Jayson, “When we say LTSD to a veteran, they know exactly what we are talking about the way no other civilian can.”

For Tyler and Jayson, speaking up about their experiences not only played a role in their own recoveries, but it is also something that they are extremely passionate about. They wanted everything they shared to be authentic.

Tyler created a video blog of his recovery process that he never intended to share publicly, but ultimately he decided to have it included in the documentary.

“The reason I did it was, if you are going to do something, anything worth you doing is worth doing well,” says Tyler. “If we are going to help people, we are going to go full-out and do it right. If I’m going to talk about myself and expose somewhat of a personal side

20 | NAMI ADVOCATE | Spring 2015

of myself, then why wouldn’t I expose everything? Because that’s how you really help people, by truly, truly putting yourself out there.”

Executive Producer Patricia Driscoll adds, “This was for family members to understand what is going on when they close the door. It’s such a rare window into these guys’ lives that you would never see otherwise.”

“There is not a single thing that you say to anyone that isn’t in some way filtered,” says Tyler. “I wanted to see me without my mask for myself—let’s see me at my weakest as a part of my personal therapy. It’s an insight into people when they aren’t putting that mask up for everyone else.”

If I was to truly understand their experiences, though, I wanted to hear from Jayson and Tyler as to what made their recoveries possible. What advice would they give to someone who is struggling right now?

“It begins with humility. You have to admit that you have a problem before you can fix it,” says Jayson. “The moment you can actually be completely humble with yourself and say ‘I have a problem. This is what the problem is and I am willing to open up and talk about it.’ That’s when my recovery started making progress.”

His advice to others is “to understand that what you are going through is completely normal. And that’s what we are trying to do with this documentary: completely rip the scab off and show you the most vulnerable parts of our lives to let you know that if you are experiencing anything even remotely close to what we are going through, it’s okay, and you can deal with it and you can face it head-on, and that’s the only way that you are going to get better.”

Tyler says that the two most important things to remember are to not give up and to ask for help. “If you combine asking for help and not giving up, there is no way you can fail, because no matter what happens, you just keep moving forward,” he says. “If something doesn’t work, you try something else.

You keep going until everything is okay and everything is better. It may take a day, it may take a year, it may take 10 years, but as long as you are continuing to move forward and not giving up,

there is not a person that doesn’t have someone they can reach out to for help.”

Jayson and Tyler recognize from their own experiences that recovery can be a long process. Tyler shared a story about the time they spoke to veterans at a Warrior Transition Unit event. The unit’s motto at the time was, “It’s OK to be OK,” which encouraged veterans to seek help and not feel guilty for getting better. When Jayson and Tyler spoke to their peers, they told them, “It’s OK to be OK—yeah, no kidding—but it’s also OK to be f’ed up. It’s just not OK to stay that way.” For these veterans, they said, it goes beyond just having a hard time or being “messed up,” so connecting with a military audience means speaking their language.

If a soldier’s job is to go out and defend our country, then our job is to do everything we can to understand them and return the service when they get home. It’s the least we can do.

Want to see the film? It's showing at the NAMI National Convention on Wed., July 8.

If you can't make it, purchase it on iTunes (http://apple.co/1HYPBw8).

“What do you mean, 'how is it?'

It’s a war. I don’t even understand that question.”

B O O K

F I L M

A R T

The Chocolate Debacle Karen Winters Schwartz Goodman Beck Publishing (2014)

L

iving with mental illness every day—combined with societal stigma and the frustration of a broken mental health care system—can feel insurmountable. As the president of NAMI Syracuse and a public speaker and advocate, Karen Winters Schwartz is very much aware of the price of ignorance and judgment, and she does a terrific job of channeling these experiences together into a mystery novel that is as saddening as it is compelling.

The Chocolate Debacle introduces us to Trey Barkley, a professional dog walker with schizophrenia. When he finds himself accused of the murder of his client and friend Flo Loughton, the subsequent events threaten to destroy his livelihood, his freedom and his sanity, which he has successfully maintained for the last several years.

The book’s viewpoint shifts back and forth between several main characters, as well as the timeline between Flo’s last few weeks alive and the investigation itself. Page by page, the story starts to tie itself together, weaving clues toward the

real perpetrator, with Trey’s life story and the prejudice he faces from the police and the town interwoven throughout.

Schwartz portrays a very real picture of small-town life and an unlikely friendship between two “misfits” who bond over Flo’s dog, Hector. She unveils the stigma that affects people with mental illness and their families, as well as the inherent fallibility of our criminal justice system when dealing with it. As the story comes to its climax, we find ourselves scrambling to put the last clues together, both of Flo’s death and Trey’s journey through the legal system. Will Trey be cleared? What really happened to Flo? And where is Hector?

While the ending is certainly completely unexpected, it is Trey’s plight that leaves us haunted, wondering what part we would play. Would we contribute to the neighborhood’s mob mentality, or would we turn a blind eye? Would we speak out? And what if we were in Trey’s place? How would we claim innocence, knowing that our community bases its suspicions on something we cannot control? Who would listen? And would we have the inner strength to persevere?

These are the questions Schwartz forces us to consider, and we may find the answers troubling.

—Simone McKitterick, NAMI Intern

Depression Research Study Is Your Depression Treatment-Resistant?

Enrolling Eligible Participants for an Inpatient Study

1-877-MIND-NIH (1-877-646-3644) TTY: 1-866-411-1010

This study will assess the effectiveness of the oral medication diazoxide versus placebo to rapidly improve hard-to-treat depressive symptoms. We are enrolling eligible participants ages 18-65, who are diagnosed with Major Depressive Disorder (MDD) and who are free of other serious medical conditions. This inpatient study can last up to 12 weeks and is conducted at the NIH Clinical Center in Bethesda, Maryland.

Email: moodresearch@mail.nih.gov www.nimh.nih.gov/JoinAStudy Atendemos pacientes de habla hispana.

National Institute of Mental Health, National Institutes of Health, Department of Health & Human Services There is no cost to participate. We enroll eligible participants locally and from around the country. Travel arrangements are provided and costs are covered by NIMH (arrangements vary by distance). After completing the study, participants receive short-term follow-up care at the NIH while transitioning back to a provider.

www.clinicaltrials.gov Protocol # 14-M-0041

Spring 2015 | NAMI ADVOCATE | 21

B O O K

F I L M

A R T

What’s New on the NAMI Bookshelf?

E

ach week, NAMI receives books from all over the world on various mental health topics. Every person that sends us a book hopes that their story or their professional experience can be helpful or meaningful to our community.

We believe that everyone’s story can have a positive impact on someone else, so we wanted to share with you some highlights from the many books we have received over the past few months.

The Four Gifts of Anxiety

By Sherianna Boyle, MEd, CAGS Adams Media (2015)

Sherianna Boyle’s book focuses on what she deems the four gifts of anxiety: resiliency, hope, empathy and purpose. She provides her readers with information about how to reframe anxiety so that it can be used in a positive way and not disturb the lives of those living with it. The goal is for readers to take control of their futures and live healthier, more fulfilling lives with their anxiety.

The 10 Best Anxiety Busters

By Margaret Wehrenberg, PsyD. W. W. Norton and Company (2015)

Dr. Wehrenberg uses this small book to make a huge difference for those affected by anxiety. She provides quick and simple tips to manage anxiety in the things people face every day. Her focus is on reducing the physical and emotional symptoms those suffering from anxiety may experience, and for them to use this book as a reference during those triggering or stressful days.

“A Lifelong Challenge” in Chicken Soup for the Soul: Find Your Inner Strength

By Jill Davis Chicken Soup for the Soul Publishing (2014)

This edition of Chicken Soup for the Soul would help anyone get through a rough day, but Jill Davis’s story focuses on her experience with bipolar disorder and how she overcame the many challenges that she faced. Her story showcases how faith and a solid support system can make a world of difference in an individual’s recovery.

22 | NAMI ADVOCATE | Spring 2015

Left of the Dial

By Christina Bruni Self-published (2015) Christina Bruni was a college radio disc jockey, playing alternative rock “to the left of the dial” and aspiring to a career as a writer. She did become one, but not without first struggling through the mental health care system. But even in her most difficult moments, Christina’s individuality and her family’s love never quit. Her optimism, humor, ambition and down-toearth perspective are an inspiration.

The Insanity Plea

By Larry D. Thompson Story Merchant Books (2014) An innocent man living with schizophrenia is wrongfully accused of murder and has to rely on the help of a few key supporters to prove his innocence. This fictional thriller takes the reader on a journey through the criminal justice system that defies stereotypes. It will keep you on the edge of your seat from start to finish and will definitely take you on an emotional rollercoaster.

Your Life After Trauma

By Michele Rosenthal W. W. Norton and Company (2015) Michele Rosenthal is a professional coach who specializes in helping trauma victims.

In her book, she draws on her personal experience with posttraumatic stress disorder (PTSD) and her own professional expertise to provide tips and guidance on overcoming trauma and successfully regaining a positive sense of self.

The Body Keeps the Score

By Bessel van der Kolk, M.D. Penguin (2014)

Dr. van der Kolk has spent over three decades working with trauma survivors. In his book, he talks about the profound ways in which trauma affects our brains: our ability to think, trust, engage with others and experience pleasure. This book provides information about innovative treatment options for those who have experienced trauma, and helps readers find ways to reclaim their lives.

N A M I

E L E C T I O N

2 0 1 5

ELECTION 2015 Voting in NAMI Elections

A Message from the NAMI Board of Directors

D

ear NAMI Members and Leaders: The NAMI Board of Directors is an all-inclusive board and seeks highly qualified leaders to serve on the national board of directors to steward NAMI’s mission and commitment to building better lives for the millions affected by mental illness. The NAMI Board of Directors will guide the organization through an important period of change and growth in the coming years. Ten individuals with a desire to bring local experience to contribute to that national effort have come forward in this year’s elections.

Service on the board of directors demands experience, knowledge, commitment and time to help others. Board members must be passionate about NAMI’s goals, values and beliefs. Service on the board of a large nonprofit organization, and an understanding of the complex and varied legal and fiduciary decisions a board struggles with on a routine basis, are also critical to good service. Candidates are encouraged to evaluate professional and other volunteer obligations to ensure that they can focus their attention on this important work.

Some prior experiences that lend themselves to successful board service are: 1. Service on the board of a NAMI State Organization or NAMI Affiliate.

2. Participation in NAMI Board Advisory Councils.

3. Participation in subject-specific national workgroups for NAMI. 4. Professional or volunteer experience involving legal, financial and/or fundraising expertise.

This year, five (5) candidates will be elected to serve for three-year terms. Five current board members’ regular terms will expire, and their seats come up for general election: Two cannot seek re-election, and three have served a single term and will seek re-election.

What Expertise and Experience Are Needed Beyond their critical passion for the NAMI mission, board members should have some high-level decisionmaking experience and knowledge in one or more of the following areas: • N onprofit and change management to steward NAMI through a rapidly changing environment.

• F undraising and donor cultivation to ensure NAMI’s future and ongoing viability.

• N ew media and technologies experience, especially in service of education and peer support.

• M arketing, outreach and communications to grow the organization and increase visibility.

• F inancial management and investments to ensure sound fiscal health.

• P ublic policy and grassroots advocacy to shape critical systems that affect those whose lives are affected by mental illness.

• M embership development and volunteerism to cultivate and honor the backbone of the NAMI movement.

Spring 2015 | NAMI ADVOCATE | 23

N A M I

E L E C T I O N

2 0 1 5

NAMI Board of Directors Service Commitment NAMI Board service is an honor and a privilege.

For those who earn the opportunity, board service is and must be their top volunteer priority. NAMI board members must: • Serve a three-year term, with the opportunity to serve two consecutive terms if re-elected.

• Attend quarterly meetings of two to three days’ duration in Arlington, Va. • Dedicate between 6 to 10 hours/week to NAMI Board service, including: –Service on three or four standing committees.

–Frequent conference calls.

–Other work groups as may be needed.

–Travel for board and other meetings.

• Represent the organization before the general public, NAMI members, professional service providers and public officials.

• Understand and protect the fiduciary health of the organization.

• Understand and adhere to the legal and fiduciary responsibilities of a nonprofit board.

• Understand and support NAMI’s programs and public policies.

• Make what the individual believes to be a significant financial contribution to NAMI, on an annual basis.

• Make NAMI national board service their primary volunteer commitment.

• Be NAMI members of record and be nominated by a NAMI State Organization or NAMI Affiliate in good standing.

The NAMI bylaws require that a minimum of 75% of the board be comprised of persons who have or have had mental illness, or parents or their relatives, including civil and domestic partners. In order to ensure compliance with this requirement, all board candidates are asked to identify whether they have had a lived experience of serious mental illness. (Candidates’ statements to this effect have been included in this special election mailing, along with their campaign statements.) We currently have no board members who do not self-identify under this definition.

A

This issue of the Advocate includes this election section to help you make those decisions. Please read, and then join the election debate within your NAMI Affiliate.

You can help shape NAMI’s future. Your vote counts!

s a grassroots organization, NAMI draws its strength from its members and leaders. That strength comes in the form of a skilled and active board of directors, bylaws that support the organization’s mission and vision, and resolutions that promote and advance that mission and vision.

NAMI’s board and bylaws can only be changed by vote of the membership—NAMI Affiliates and NAMI State Organizations—that is, by you! NAMI’s future lies in your hands.

24 | NAMI ADVOCATE | Spring 2015

When Considering Voting If you have questions about the election process, contact voting@nami.org or visit www.nami.org/voting.

Service on the NAMI Board of Directors is a fulfilling experience. We are honored and humbled to represent the members who elected us, and we want only to do the best job possible for NAMI and its vital mission. We are pleased that so many of your peers are seeking this role with NAMI—and we thank the thousands of NAMI members who inspire and focus us in our work.

Thank you for all that you do, every day, to support NAMI! Sincerely, Your NAMI Board of Directors

Jim Payne President, NAMI Board of Directors

Janet Edelman NAMI Board of Directors, 2015 Election Chair

N A M I

N

AMI elections include selection of board members, possible amendment of bylaws and consideration of resolutions posed by the membership.

NAMI Affiliates in good standing (those embracing the NAMI mission, having at least five members and fully paid dues) and NAMI State Organizations may vote, either by absentee ballot or at the NAMI National Convention.

NAMI State Organizations each get one vote in the NAMI elections. NAMI Affiliates have “weighted votes” based on the number of members in the group as of 70 days prior to the election. The more members a NAMI Affiliate has, the more votes it gets, ranging from one vote for groups of 5 to 50 to 10 votes for groups of 800 or more.

Individuals do not vote in NAMI’s national elections, but all NAMI members have an opportunity to participate in the election process by helping to decide how their NAMI Affiliate or NAMI State Organization will cast its vote. Contact NAMI Affiliate and NAMI State Organization leaders for more information about how and when they will be deciding how to cast a vote. Each NAMI Affiliate and NAMI State Organization chooses someone to serve as their credentialed delegate or proxy. That person will cast the ballot on behalf of the group.

Voting Packet In late May, a packet of voting information, including the ballot, credentialing forms, a copy of this election issue of the Advocate, and instructions for voting will be mailed to each NAMI Affiliate and NAMI State Organization in good standing. To be sure that your voting packet gets to you, please work with Member Services to update your current mailing address in NAMI 360. If you do not receive your voting packet by June 1, 2015, please send an email to voting@nami.org so we can sort out the issue and make sure a packet is delivered to you.

Members can begin convening now to consider who will serve as delegate or proxy for their NAMI State Organization and NAMI Affiliate. Credentialing forms must be received by the NAMI office

by June 30, 2015.

E L E C T I O N

2 0 1 5

Absentee Voting NAMI Affiliates and NAMI State Organizations that wish to vote absentee may do so via official ballots that will be mailed in May. Absentee ballots are due to NAMI by June 30, 2015.

Credentialing Before the Convention Ballots cast at the NAMI National Convention are completed by individuals who have been designated as proxies by the leadership of their NAMI Affiliates and NAMI State Organizations. Precredentialing allows Affiliates and State Organizations to tell NAMI in advance who the person casting the vote for their group will be.

This saves valuable time at the Convention for the voters, as they are moved through the check-in line to receive ballots very quickly.

If someone arrives to vote that has not been pre-credentialed, NAMI will have to confirm on Election day from leadership at the Affiliate or State Organization that the person who has arrived to cast the vote is authorized to do so. Onsite credentialing often takes time away from the potential voter that could be spent in other ways at the Convention. Credentialing forms are due to NAMI by June 30, 2015.

Voting at the Convention Voting will take place on Wednesday, July 8, 2015, in San Francisco. The NAMI National Convention program will include a map with the voting area clearly marked. Only credentialed delegates or proxies may cast ballots (see previous section). Voting will be open between 9 a.m. and 6 p.m. All ballots must be returned to the ballot box by 6 p.m.

NAMI Affiliates and NAMI State Organizations that do not return voting credentials to NAMI by June 30, 2015, will be subject to onsite review and qualification.

Election Results Election results will be reported at the NAMI business meeting on Thursday, July 9. Results will also be posted on www.nami.org/voting.

Meet the Candidates

C

andidates are listed in the order in which their nominations were received at the NAMI office. All candidate statements are unedited, presented as submitted.

Candidates provided a personal statement identifying their lived experience with mental illness. The NAMI bylaws require that a minimum of 75% of the board be comprised of persons who have or have had mental illness, or parents or their relatives, including civil partners.

Candidates were also asked to respond to these two topics, in a total of 300 words:

Driver 3: Drive Advocacy—NAMI will lead advocacy efforts that drive increased access and quality.

Explain what brought you to NAMI and what roles you have played in your NAMI Affiliate and NAMI State Organization.

Candidate Speeches and State Caucuses Candidates will deliver their speeches at the Convention on Monday, July 6. Candidates will each have five minutes to address convention attendees. A meet-and-greet with sitting board members and candidates will immediately follow the speeches.

State caucuses will be held on Tuesday, July 7, and if invited, candidates may visit state delegations. A full list of state caucus times and locations will be included in the Convention program.

Summarize how you will use your position on the Board of Directors to drive NAMI forward as laid out in the 2015-2017 Strategic Plan.

Those responses are included in this issue of the Advocate.

Extended responses about each candidate’s plans for how they will help drive the 2015-2017 Strategic Plan forward in their tenure on the board can be found on the NAMI website at www. nami.org/voting and address the following specific areas: Driver 1: Build a Movement—NAMI will broaden public awareness and inclusion in every part of the alliance.

Driver 2: Leverage Technology—NAMI will expand use of technology to build capacity and connection.

Driver 4: Focus on Youth—NAMI will develop and implement strategies that engage youth, young adults and their families, expanding our reach across the lifespan.

Driver 5: Strengthen the Organization—NAMI will grow and develop financing, infrastructure and capacity that support a vibrant and bold organization.

Hear More from the Candidates!

Visit www.nami.org/voting for expanded resources on each candidate, including letters of nomination, five-minute “stump speeches” from each candidate, and the expanded responses to the queries above.

Spring 2015 | NAMI ADVOCATE | 25

N A M I

E L E C T I O N

2 0 1 5

Bob Spada

Carol Caruso

Nominated by NAMI Ohio

Nominated by NAMI PA Montgomery County (Pa.) Labor Day weekend in 2004, I received the dreaded call that my 23 year old son was taken to the psychiatric hospital in Plano, Texas. When I flew to Texas, I felt I was entering a jail and recognized that my life and that of my family was changed forever.

Accountant & Business owner, Retired NAMI Ohio, Past President, Current Board Member NAMI Greater Cleveland Family to Family instructor and other volunteer activities Century Federal Credit Union, Board Member, Today thru March 2018 Nottingham Woods Home Owners Assoc, Treasurer When my family’s journey began in 2004, we had no idea of the twists and turns that our lives would take. Eleven years later and with my son in recovery, as difficult of an experience as this has been, it has enriched our lives. I now want to turn our experience into helping others.

When my son became ill, I did know enough to call NAMI Ohio. They helped me through the maze of the mental health system to get my son the help he needed.

I have served on the NAMI Ohio Board for five years and served as President for two terms. The greatest satisfaction I have found to date through the NAMI movement has been me and my wife teaching numerous Family to Family courses. Recently, we expanded Family to Family to the Cleveland Veterans Hospital and are starting the Home Front Program.

Serving in leadership in the State Senate allowed me to realize my greatest accomplishment by sponsoring and passing Ohio’s Mental Health Parity Bill. This bill that had languished in the legislature for over 24 years became a reality on December 29, 2006.

I want to advocate for the end of discrimination of those living with the illness. I want to assist the criminal justice system by intervening before they are given responsibility of our loved ones. We must ensure all levels of housing are available. I want to scream on behalf of my fellow Veterans so that mental health care is available as needed. I also want to strengthen the NAMI affiliate network.

I believe my accounting background would also assist in strengthening NAMI’s fiscal status.

I pledge that every decision I make would be guided by the journey I have taken with my son and his illness.

26 | NAMI ADVOCATE | Spring 2015

A family situation with mental illness brought me to NAMI- although I have had several family members with varying degrees of distress, it was a situation with a very challenged foster son that brought me to the NAMI fold.

NAMI PA Montgomery County, Executive Director NAMI PA Montgomery County, Family to Family teacher, Support Group facilitator, P&TaA and ETS Presenter NAMI Pennsylvania, Trainer NAMI Board of Directors, Member Leadership must guide us to our goal. We must develop stronger and more effective leadership at all levels of NAMI; keep our message strong and consistent.

We must no longer tolerate injustices in our mental health system of care. I hope to continue to be a part of this effort.

My family situation brought me to NAMI many years ago. I have seen what can be done and have helped to grow the organization as a mental health leader. As a volunteer and teacher trainer of many of our programs, and now as an affiliate leader, I know the challenges we face every day in bringing NAMI to as diverse a community as possible.

My passion has been diversifying our funding sources and helping our youth, especially transition age youth. I hope to continue to impact these as well as to promote Forensic Coalitions to help decrease the numbers of individuals with mental illness who are incarcerated. I have started one of these in my community and hope to develop a model to replicate in communities across the country. We must end the unnecessary incarceration of persons with mental illness, develop jail diversion programs and provide care not punishment for those afflicted.

With your support I want to continue to build NAMI, and to make sure that NAMI is there for all in need when needed and for as long as is needed, just as it was there for me and my family. Providing the support, resources and services to build better lives for families and individuals affected by mental illness is my vision.

N A M I

Gloria Walker

Nominated by NAMI Urban Greater Cincinnati Network on

Mental Illness (Ohio) It is pertinent that I explain that I am a family member of a loved one who was diagnosed with serious mental illness over 20 years ago and I have been advocating for proper treatment and services since.

Volunteer Executive Director/President, NAMI Urban Greater Cincinnati Network on Mental Illness, Retired NAMI Urban Greater Cincinnati Network on Mental Illness, Executive Director/Board President NAMI Ohio, Board Member NAMI, Member, Board of Directors Greater Cincinnati Behavioral Health, Member PAIMI Council, Member I came to NAMI out of desperation. There was nothing and no one out there that I turned to that would help me understand and support me as I embarked on this what ended up being, lifelong journey.

Since finding NAMI, I have been trained and trained others in the evidenced based Family to Family 12 week program. I have served on the local NAMI affiliate board, the NAMI Ohio board and at the National level.

I will continue to use my position on the Board of Directors to drive NAMI forward as laid out in the 20152017 NAMI Strategic Plan.

E L E C T I O N

2 0 1 5

John Freeburg

Nominated by NAMI Washington Prior to being eligible for Social Security disability payments as of 1988, I started taking medication for a few years in 1978 while living in New York City and then near Chicago.

Usually, since 1988, I have been taking medications in Florida and mainly Washington.

Retired NAMI Greater Seattle, member NAMI Kitsap, member NAMI Eastside, member NAMI Washington, Member, Board of Directors Peninsula Regional Support Network Advisory Board, Chair person, 3 years Over 20 years ago a Seattle psychiatrist suggested I join NAMI. Since that time I have been a board member and then president of a local affiliate, and am now exclusively a member of the board of directors in Washington State.

As a former member and president of the NAMI Kitsap board I have written columns in the newsletter, including the NAMI Greater Seattle newsletter for about a year, invited speakers to our monthly meetings, chaired public and board meetings and actively sought justice for a family. Their son was fatally shot by the police. The victim, Douglas Ostling, bled to death. Winners of a federal court case, his parents are lobbying for statewide CIT legislation.

As a member of the NAMI Washington board of directors I have actively attended board meetings and most recently was the principal author of the “2015 Legislative Agenda” which can be accessed at namiwa.org. I have attended numerous national annual conventions. You can find a shortened fundraising article I wrote on the nami.org website by entering “The John Effect.”

If elected to the national Board of Directors I will continue to educate and advocate on behalf of consumers, our friends and family members. I have written numerous letters to the editor on behalf of our goals in Bremerton and Seattle. I will continue to expand our visibility and engagement. Our 2015-2017 NAMI Strategic Plan is excellent.

Although I have three degrees, I have been homeless in Washington, California, Mexico, Texas, Florida, New York and New Haven so I have supported housing the homeless at the highest level of our state. Although I am not a veteran, I live in a Navy city so I am quite aware of the difficulty our most impoverished veterans sometimes experience accessing services and empathy.

Spring 2015 | NAMI ADVOCATE | 27

N A M I

E L E C T I O N

2 0 1 5

Victoria (Vickey) Gonzalez Nominated by NAMI New Hampshire

I presently serve on the Nami National Board of Directors. I have Bipolar disorder Nami saved me. Staff and peers at Nami Metro Suburban in Oak Park Il and Nami New Hampshire helped me. I became a National Peer-toPeer trainer, Connections Trainer, National conexcion trainer and IOOV Presenter.

Real Estate Broker, Retired NAMI New Hampshire, Connections facilitator NAMI New Hampshire, Board member, 3 years NAMI New Hampshire, Consumer Council Representative NAMI National, Board member I have Bi-Polar disorder and after a couple of years of isolation and depression, my Dr. convinced me to visit Nami Metro Suburban in Oak Park IL. John Huemann Program Director and Kimberly Knake Executive Director and my peers saved my life. Nami became my new home.

You must understand that this illness was devastating, I lost my home,my car and my husband divorced me. I lost hope. As time went on I got stronger and wiser with the help of my affiliate and Nami Signature programs. Hope was something I would never lose again. I became a Connections Facilitator in English and in Spanish. I went on to become a National Trainer for Conexciones and Trainer for Connections. I later became a Peer to Peer National Trainer. I also served on the Board for Nami Metro Suburban and then I was nominated to run for the Nami National Board of Directors and was elected. I now call home New Hampshire and there I was welcomed there by the Executive Director Ken Norton and Annette Carbenau manager of volunteers and grant operations. I became involved right away. Serving on the Board for New Hampshire, I trained Connections facilitators, I also became a IOOV presenter and last but not least I am the consumer council Representative for New Hampshire.

I have been of the Nami Board of Directors for 3 years and I have added input to our strategic plan and helped hire our Executive Director who is doing a excellent Job. I also have helped with dispute resolution, and affiliation and re-affilliation. I am traveling all over the country spreading the word to our youth and my age alike how to get involved with nami. I have started connections groups with Veterans and Peer groups.

28 | NAMI ADVOCATE | Spring 2015

Evelyne Tropper, Ph.D. Nominated by NAMI Champlain Valley (New York)

I have lived and cared for one of my children suffering from schizo-affective disorder for approximately 18 years.

I personally suffer from depression.

Retired Professor State University of NY at Plattsburgh NAMI New York State, Board director, chaired several committees, served on several others NAMI Champlain Valley, co-founded the affiliate and served on the board of directors i.) The reason that I got involved with NAMI is because one of my children suffers from schizoaffective disorder. I am a co-founder of my local NAMI affiliate and served on its board for three years. In this capacity, I helped to spread knowledge about brain disorders to schools, the judicial and law enforcement systems, politicians and the local State University of New York campus. I subsequently served on the NAMI-NYS board for 1 1/2 years. While on this board I advocated at the state capitol for more supervised housing, nutrition programs and family-to-family distance courses for remote regions of the state. ii.) • Because of my background as a professor, I would like to work on opening more NAMI chapters on campus; advocate to include brain disorders in the school health curriculum and organize information sessions for parents of primary and secondary school children.

• Because I live in a rural area and I am a computer scientist, I would like to work on building online family-to-family and support groups for rural areas. I would also like to help build a website of successful practices (such as Health Homes) from different affiliates with automatic emails to all affiliates when a new successful practice is added.

• Care for people with brain disorders is more costly than the combined care for people with cancer, diabetes and AIDS. I would like to develop statistics on how increased research funding would save money on long-term care when new medications and therapies are developed.

• I have experienced the dysfunctional public sector of mental health care and have recently had the experience of the private sector at comparable cost.

I would like to work on transferring the superior practices of the private sector to the public sector.

N A M I

Steve Pitman

Nominated by NAMI Orange County (Calif.)

My brother lived with schizoaffective disorder for 48 years. I was the family member closest to him for the last half of his life. He died two years.

I also have a granddaughter living with bipolar disorder that has lived in my home for the last 22 years.

Semi-Retired Self-employed insurance broker NAMI Orange County, President, Board of Driectors NAMI Orange County, Teacher for Family to Family NAMI Orange County, Teacher for Basics NAMI Orange County, State Trainer for Family to Family Proxy Parents, Board Member, February 1, 2015 February 1 2016 My older brother lived with schizoaffective disorder for the last 48 years of his life. For the last half of his life I was the closest family member to him, literally and figuratively.

He died largely alone, two years ago, after a six week hospitalization. He lived a life, without complaint, that no one would wish for. I spoke with my brother every day and met him for lunch weekly. I miss him terribly.

I also have a granddaughter who lives with bipolar disorder. She has lived with me for 22 years. With her courage and hard work, she lives a very productive engaged life. The difference in her life course and my brother’s is due largely to the education, emotional support and advocacy provided by NAMI. I teach the Signature Programs of Family-to-Family, NAMI Provider Education and NAMI Basics classes. I am a State Trainer for Family-to-Family and I have also led a support group. I have taught the Family-to-Family class 17 times.

In order for NAMI’s Strategic Plan to be relevant, it must be alive. It needs to direct every action of the Board, the Executive Director and the staff. The Strategic Plan guides where we are going; it does not tell us where we are along the way and it does not tell us how we will know when we have arrived. There must be outcome measures that track results. The results must have a quantitative and a qualitative component. Reporting the status to the Board on a predetermined basis is the only way that progress can be assessed.

E L E C T I O N

2 0 1 5

Marc Jacques

Nominated by NAMI North Carolina I am both a family member and a person with lived experience.

I watched both my parents’ struggles – Dad – Korean War (PTSD), mom – alcoholism - I am in recovery from a mental illness and my wife also in recovery (anxiety/depression). I understand the perspectives of both families and consumers.

Co-Director Mental Health Advocacy Inc. NAMI of Wake County, Member - NAMI connections facilitator - Past/Board Member NAMI of Wake County, CIT volunteer & Past/Director of Consume Affairs NAMI North Carolina, Board Member NAMI North Carolina, Consumer Council Chair NAMI National Consumer Council, current member Past/Advocacy Committee Chair - Past/secretary 36 years ago, women from Vernon Connecticut came to talk to my mom about schizophrenia. This was before Connecticut-AMI incorporated 1984. Mom and her friends were helpful as I floated between hospitalization and homelessness. KUDOS to Sarah Palmer and Robert Davidson for reaching me – invitations to “medicationnight” where people like me gathered. We could tell that the CAMI/NAMI volunteers genuinely cared about us. That caring inspired me to attend regularly learning things about my condition. I became a trained advocate. I later moved to North Carolina where, as a consumer, I served on the NAMI-Wake County Board – here I became Director of Consumer Affairs – I became both Connections and Peer to Peer facilitator and was elected as State Consumer Council Chair to serve the NAMI-NC Board. I served on the National Consumer Council executive team and was the CC Advocacy Committee Chair - 2012 I was awarded the NAMI Ken Steele Award for advocacy.

Chance also favors the prepared Board of Directors.

I’m prepared. I carry with me necessary wisdom and experience to energize achievement of NAMI strategic goals. I’m prepared – I’m intimately familiar with these kinds of strategic goals. As executive director of three different consumer organizations – I’ve managed youth development grants, built movements, strengthened organizations, driven advocacy and leveraged technology.

I’d humbly use the opportunity of serving on the board to advocate for both families and consumers. In committee I’d influence my fellow board members to the greater good of NAMI as seen by its members. It is an old axiom that all that can be asked of any board member is to use one’s natural abilities, skills and talents and of course the occasional stretch outside of one’s comfort zone. I’m prepared! Significantly, NAMI must successfully raise funds – the organization I last worked I raised over $28,000.

Spring 2015 | NAMI ADVOCATE | 29

N A M I

E L E C T I O N

2 0 1 5

Dorothy Hendrickson Nominated by NAMI California

Anxiety-Panic Disorder and substance abuse runs in our family. Our son was diagnosed with bipolar and anxiety in his teens. For the past nine years, I have served on NAMI boards, advocating for people living with a mental illness and their families.

I am passionate about advancing NAMI’s mission.

Administrative Manager, County Health Care Agency, Executive Manager, to County Board of Supervisor, and City of Westminster Commissioner, Retired NAMI State President Council, Past Chair NAMI California, First Vice President/Past President NAMI Orange County, Member (Former Board Member) My desire to learn more about my son’s illness from experienced NAMI members and my desire to help others find help, sooner rather than later, brought me to NAMI. In 2006, I was introduced to NAMI Orange County (OC) and took my first NAMI Family to Family course. While my family and I suffered in silence, I was serving as an Administrator for my county’s Behavioral Health Services Department. I joined the NAMI OC Board to help them better understand county services, improve local advocacy, and identify additional funding sources. I served on the affiliate board from 2008-10, before being appointed to the NAMI California Board of Directors.

From 2008-present I’ve served on the NAMI California Board of Directors. I participated on every committee, was elected to the Executive Committee as Secretary, and the following year was elected President, serving in this position from 2010-14. I currently hold the position of First Vice President. I also served as Chair of the NAMI State President’s Council (SPC), attending quarterly board meetings and participating on both the policy and planning committees from 2012-14.

If elected, I will use my position on the Board to drive NAMI’s mission forward, by utilizing my expertise, knowledge, skills, and lived experience. While serving as the Chair of the NAMI SPC, I actively participated in the development of the NAMI 2015-2017 Strategic Plan.

My input and recommendations, along with other NAMI colleagues and members, are proudly reflected in this plan.

While serving as the NAMI CA President, we strengthened our organization and achieved noteworthy results by leveraging technology, driving advocacy, focusing on youth and the underserved communities. I believe the knowledge and experience I have gained by serving at the local, state, and national levels, would be an asset in moving NAMI’s mission forward.

30 | NAMI ADVOCATE | Spring 2015

Irene Turski

Nominated by NAMI Huntington (New York) My beloved older sister Chris was diagnosed with schizophrenia in 1999. Together we are making sure her quality of life is as it should be. I am proud to walk with her during this journey and grateful for NAMI which gives both of us strength to face any challenges encountered.

Retired NAMI New York State, President - Board of Directors NAMI Huntington, NY, member NAMI Rochester, NY, member My journey began in 1999 when my sister, Chris, was diagnosed with schizophrenia. I discovered NAMI and immediately began an education that taught how to help, respect and fight alongside my sister. The power we felt through this knowledge not only helped Chris but also my family to accept a fate bestowed upon her that she did nothing to deserve.

I am president of NAMI-NYS, previous treasurer and secretary. I have been on the executive committee 5 years and am chair of the housing committee and co-chair of government affairs. I previously was chairperson of the Educational Conference for 3 years, chair of Nominations and Elections, chair of Strategic Plans and facilitator of the small affiliate grant for 4 years. I am trained in the NAMI Smarts advocacy program which is instrumental in trainings others how to effectively advocate for their loved ones. This program essentially empowers individuals to advocate on a local and national level with a strong voice to get the support and help we all deserve.

I bring 30 years of business experience as a worker, manager and owner. This experience has taught me to never give up and always respect my co-workers. I also have my deep faith which guides me. I am a strong advocate for housing with the services necessary for each individual to live as full a life as they can. We have fought this battle repeatedly for my sister who is 64 years old and resides in the community with SMI. I will work to bring more housing for our loved ones along with the services they require and deserve for quality of life. They not only need a residence but also, a home. We are their advocates, their hope and their future; together we can make a difference in their lives.

N A M I

E L E C T I O N

2 0 1 5

Proposed Bylaws Amendments Bylaws amendments may be proposed by NAMI Affiliates, NAMI State Organizations or by a NAMI Director (member of the NAMI Board of Directors). Bylaws changes require a twothirds majority of those voting to pass.

Text proposed for removal is struck through; text proposed to be added is bolded and underlined. For a complete copy of the current NAMI bylaws, visit: www.nami.org/bylaws.

Rationale: The following amendments were recommended by NAMI’s legal counsel to reflect alignment with the Missouri Nonprofit Corporation Law (the jurisdiction in which NAMI is incorporated) and reflect the best practices of nonprofit organizations in the United States.

Upon a review of these amendments at their meeting on March 15, 2015, the NAMI Board of Directors voted to support these amendments.

Proposal #1: Proposed by Janet Edelman, Ron Morton, Lacey Berumen, Carol Caruso, Vickey Gonzalez, Adrienne Kennedy, Gloria Walker, NAMI Directors ARTICLE V, Directors Meetings, Section 4 Quorum. A majority of the Board of Directors shall constitute a quorum at any meeting; and a majority of those present in either case shall have power to act in all matters, except as specifically provided to the contrary elsewhere in these Bylaws, provided, however, that no real estate of the corporation shall be sold, leased, mortgaged, or otherwise disposed of, except by resolution approved by not less than a majority of the Board of Directors. Directors can participate in a regular or special meeting by, or conduct the meeting through the use of, any means of communication by which all directors participating may simultaneously hear each other during the meeting. A director participating in a meeting by this means is deemed to be present in person at the meeting.

Section 6 Consent to Corporate Action. If the directors of the corporation, acting without a meeting, shall severally or collectively consent in writing, either on paper or by e-mail, to any action to be taken by the directors, such consents shall have the same force and effect as a unanimous vote of the directors at a meeting duly held. Any certificate in respect of action taken by the written consent of the directors shall state that such action was taken in accordance with this Bylaw and has the same force and effect as a unanimous vote of the directors at a meeting duly held.

Proposal #2: Proposed by Janet Edelman, Ron Morton, Lacey Berumen, Carol Caruso, Vickey Gonzalez, Adrienne Kennedy, Gloria Walker, NAMI Directors ARTICLE IX, Indemnification of Directors, Officers, Employees and Agents, Section 1 Each person who is or was a director, officer, employee or agent of the corporation, or is or was serving at the request of the corporation as a director, officer, employee, trustee or agent of another corporation, partnership, joint venture, trust or other enterprise shall be indemnified by the corporation in the manner and to the full extent that the corporation has power to indemnify such person under section 351.355 351.471 or 351.476 of the General and Business Corporation Law of Missouri as now in effect or hereafter amended; provided, however, that the corporation shall not so indemnify such person, or purchase or maintain indemnity insurance for the benefit of such person, in the event such indemnification or expenditure would either (i) then constitute an act of “selfdealing” or a “taxable expenditure,” as defined by Sections 4941 (d)(1) and 4945 (d), respectively, of the Internal Revenue Code of 1986, as amended (or the corresponding provision of any future United States Internal Revenue Code, as amended), or (ii) violate the provisions of any other section of the Revised Statutes of Missouri as then in effect.

Proposal #3: Proposed by Janet Edelman, Ron Morton, Lacey Berumen, Carol Caruso, Vickey Gonzalez, Adrienne Kennedy, Gloria Walker, NAMI Directors ARTICLE X, Notice of Time and Place of Meetings, Section 1 Notices. Written notice stating the place, day and hour of the meeting and, in the case of special meetings, the purpose or purposes for which the meeting is called, shall be delivered or given, either personally, or by mail or by e-mail, to each member or director of record at such address as appears on the books of the corporation, not less than two (2) weeks before the date of the meeting in the case of the annual meetings of the members or Board of Directors, and not less than one (1) week before the date of the meeting in the case of any other meetings of members or meetings of the Board of Directors. Notice given by mailing shall be deemed given at the time such notice is postmarked. Notice given by e-mailing shall be deemed given at the time such notice is sent. Whenever any notice is required to be given, a waiver thereof in writing signed by the person or persons entitled to such notice, whether before or after the time stated therein, shall be deemed equivalent thereto.

Spring 2015 | NAMI ADVOCATE | 31

NAMI Returns to The City by the Bay for its 2015 National Convention!

JULY 6-9, HILTON SAN FRANCISCO UNION SQUARE HOTEL Whether you’ve left your heart in San Francisco or you’ve never visited this beautiful city by the bay, join us for the 2015 NAMI National Convention.

You won’t want to miss these program offerings: Top-notch researchers and clinicians providing information and tools to advance and sustain recovery from mental illness.

- Dr. Jill Bolte Taylor - Dr. Steven Adelsheim - Dr. Sergio Aguilar-Gaxiola

- Dr. Robert Heinssen - Dr. Sophia Vinogradov - Dr. Thomas Neylan

- Dr. Marsha Linehan - Dr. Alan Fruzzetti - Dr. Rachel Loewy

- Chantel Garrett - Dr. Dave Pilon

Individuals and family members providing their own important perspectives on recovery.

- Hakeem Rahim

- Dr. Nancy Kehoe

- Theo Bennett

- Ezio Lucido

The country’s keenest minds and savviest policymakers offering strategies and tactics to advocate for changing the mental health system in our nation.

- Chief Michael Kehoe - Dr. Kim Norman

- Dr. Fred Osher - Dr. Scott Zeller

- William Jahmal Miller - Dr. Anand Pandya

Many more outstanding speakers!

Abundant networking opportunities, inspiration, innovation and an exhilarating four days in The City by the Bay.

Join Us in San Francisco and Register Today at NAMI.org/convention

REGISTER TODAY! CONVENTION REGISTRATION FEES Rates (includes closing night dinner ticket) Early Bird (until 5/31/15) Consumer Early Bird (until 5/31/15) Day rates are also available.

WHERE TO STAY Hilton San Francisco Union Square 333 O'Farrell St., San Francisco, CA 94102 Tel: 415-771-1400 $159/night Single $165/night Double (+ 14.5% Tax) Room rates will be available until May 15, 2015 or until NAMI’s room block is sold out.

Member $235 $160

Non-Member $310 $220

PRELIMINARY CONVENTION SCHEDULE (Please note: This is a preliminary schedule and is subject to change)

Monday, July 6 Change the FRAME Summit Advancing Recovery Sessions Council Business Meetings First-Timers Orientation Board Candidate Speeches Meet & Greet with NAMI Board Open Mic Performance Night

To reserve your room, you’ll need to complete your registration and get booking instructions in your confirmation e-mail.

Tuesday, July 7 Opening Plenary Major Topic Sessions Open Mic with NAMI Board Poster Sessions Workshops

TRAVEL INFORMATION Fly into San Francisco International Airport (SFO). Save up to 10% on your flight with United Airlines! Use discount code ZUCK706092 on the United website, or call 800-426-1122.

Wednesday, July 8 Research Updates Poster Sessions Workshops Special Interest Sessions Movie Night

QUESTIONS? For more, visit www.nami.org/convention, or call the NAMI Convention Department 703-524-7600.

Thursday, July 9 Research Plenary NAMI Annual Business Meeting Training and Policy Institutes Networking Meetings Closing Banquet

We look forward to seeing you at the 2015 NAMI National Convention!

3803 N. Fairfax Dr., Suite 100 Arlington, VA 22203-1701 703-524-7600 www.nami.org

A NEW APP SUPPORTED BY

www.nami.org/air