Please join us on Wednesday March 13, 2019 at 1pm for a free interactive video program on Major Depressive Disorder (MDD): learn how to play an active role in your care team and evaluate between treatment options, ask experts your questions in real time, and come away empowered to help yourself or someone in your life. If you registered for last year’s video education on MDD, you’ll receive an invitation to the new program via email—if you haven’t yet registered, sign up to attend live or receive a recording via email afterwards.
Note from Michael Pollock, DBSA CEO
Over the past few months, I invited you to share factors that you believe will influence mental health in our country in the future. My colleagues and I are grateful to those of you who responded. Some of you shared your personal stories—both struggles and triumphs—of living with depression or bipolar disorder. Others shared stories of loved ones and a desire to see them thrive. Collectively, you reinforced that while we’ve made progress addressing stigma in our society, there’s more we can and must do. Your suggestions ranged from advocating for better education and training in our schools and communities to leveraging public figures to speak out to being more deliberate with our choices of language when communicating what it is like to live with a mental health condition—or as some of you suggested—a brain or physiological disorder.
Others wrote to encourage DBSA to find ways to help peers better connect with one another and to increase our support services to more people, including Spanish-speaking families, youth, and individuals exiting the criminal justice system (just to name a few). You reaffirmed the positive impact that peer support had and continues to have in your individual lives, while expressing the urgent need for better overall mental health services in our country.
Some of you expressed angst over navigating complicated health and insurance systems or the affordability of your treatment. At the same time, I read about some of your appreciation for new treatments and services you are receiving or steps you are taking for self-care.
Collectively, your comments reinforced the four pillars of DBSA’s work: empower individual wellness, cultivate connections, inspire understanding, and transform our systems.
As DBSA establishes our future strategies, you have given us a great deal to consider. My thanks for your sincere, thoughtful replies. I look forward to updating you on our decisions and progress in the months ahead.
All the best,
Chief Executive Officer
Life Unlimited: Krista Samimi
I was first diagnosed with bipolar disorder when I was 24 years old. At that time, I was working as a pharmaceutical sales representative, was engaged and planning my dream wedding, and remodeling a fixer home. I lost sleep; waking up at 3 a.m. to call relatives. My mind raced and I had an exorbitant amount of energy. Along with grandiosity came a large purchase—a timeshare, which was later returned with the help of a lawyer. I experienced delusions that the FBI and CIA were after me. It was then that my parents took me to a psychiatrist. While the delusions went away, feelings of shame/stigma stayed, and my engagement fell apart. I went back to work feeling very awkward and out of place. I felt alone and different.
One year later, I questioned my diagnosis. I did little to educate myself on bipolar and began to tinker with my medications. Soon, the anxiety, paranoia, and delusions returned, with much greater intensity. That is when I got a glimpse inside the walls of a psychiatric facility. (No balloons and flowers here.) This stay only lasted 7 days, but recovery lasted months.
Upon discharge, a nurse recommended the DBSA Berkeley, CA support group. This group impacted me greatly—listening to others tell their stories, their struggles, I began to hear my own. Racing thoughts, spending sprees, direct contact with God…their experiences were mine too. I was in disbelief, but relieved. This was real. I wasn’t making it up. I was very healthy and stable for many years.
In 2009, stress from work affected my sleep and I didn’t have a plan to manage my symptoms. I was doing my best to stay above water, but over the course of two months, the symptoms were too intense, and I found myself in in-patient treatment again—this time for 72 days. By the grace of God, I recovered enough over the subsequent 15 months to return to a new, less stressful career. Since then I’ve also gotten married and started a family. I feel grateful that I could work closely with my ob/gyn and psychiatrist to have a safe pregnancy with medications.
I continue to stay well with the love and support of my husband, a daily yoga practice, and a collaborative relationship with my psychiatrist. I’m also helping to start a DBSA support group in my area. Some days are better than others, but I am grateful for recovery.
Tardive Dyskinesia Educational Campaign Has Launched
In our September issue, we brought your attention to Tardive dyskinesia (TD). TD is a rare condition that occurs as a result of long-term use of certain types of medications, such as antipsychotics. Early signs of TD often are jerky, irregular movements in the face, lips, tongue, arms, legs, hands, feet, and trunk.
To continue to raise awareness about the condition, DBSA—in collaboration with the CME Institute of Physicians Postgraduate Press, Inc., and other partners—has launched a new educational campaign targeted towards individuals who may be living with TD, their loved ones, and mental health and primary health care providers.
The campaign includes a series of 6 videos featuring a nationally recognized psychiatrist, Joseph P. McEvoy, MD from the Department of Psychiatry and Health Behavior at Medical College of Georgia at Augusta University, his patients who have lived with TD, and their family members. The videos cover a range of topics, such as “What is TD and What Causes It?” to “Approved Treatments” to actual people who have lived with TD and their family members sharing their unique experiences. Individuals describe when they first noticed TD symptoms, what led to their diagnosis, the burden the condition placed on their lives, as well as how approved treatment for TD has helped lift that burden. Family members also share their experiences caring for their loved ones living with TD, which can be a rather isolating condition. The educational campaign also includes a printable brochure and online commentaries from other people who have lived with TD.
The hope is that by providing an outlet for people to openly share their experiences with TD, others who may be experiencing similar symptoms will be less fearful and more likely to contact their health care provider. The earlier TD is diagnosed, the better. Now that there are two FDA-approved medications available that may ease or stop symptoms of TD, people can live well with the condition. If you suspect that you or your loved one could have TD, watch the videos online and contact your health care provider to begin discussing a treatment plan.
Advocacy: Are your State Legislators Protecting your Insurance Benefits?
Two years ago, the federal debate around protecting access to health insurance benefits resulted in contentious town hall meetings and was a major issue in the November 2018 elections. But while the focus has been on the national stage, changes at the state level have been taking place under the radar of the general public.
Do you know what’s trending in your state to dismantle health insurance benefits? Have you heard about short term policies and essential health benefits but not sure what this all means to your ability to access mental health services?
If you’ve answered no, you are probably not alone. Most of us outside the advocacy world don’t have time to keep up with all the jargon and the policy speak. But, your DBSA advocacy department does. We’re here to both educate you about the issues and provide you with tangible things you can do that will produce results and make your voice heard.
It’s easy to get started. When you subscribe to the DBSA advocacy newsletter, you’ll receive short but informative articles that will educate you on these issues and give you the knowledge to speak about them with family and friends. You’ll also receive timely updates alerting you when it’s the most appropriate time to take action.
Ask the Doc
Labs are the Dashboard of your Body Chemistry
As a patient diagnosed with bipolar disorder at an early age, I have had a lot of labs done. My parents thought it would be a huge obstacle to have labs drawn because they thought I would be afraid and it would be traumatic, but it wasn’t a big deal. The labs don’t hurt and only take a minute or two. You come to realize that it’s just part of the plan to make you feel better.
What I’ve come to see over the years is how much information the doctors can get from the labs and how it helps them monitor how the medications are working in your system. If you’re having side effects, it helps your doctors figure out what might need to be tweaked. Labs also can confirm that your medications are working at optimal levels to help alleviate your bipolar symptoms and keep your stable.
Equally important, labs can alert your doctor to any side effects or new developments. If you get them done regularly, it may help your doctor diagnose or prevent complications associated with high cholesterol, thyroid dysfunction and diabetes and other conditions that can lead to obesity. Also, if you get your labs done regularly, your doctor can help manage your symptoms more efficiently and you wind up having fewer problems and more success with your medications.
As a patient with bipolar disorder, I realize there are times when you don’t feel like you have much control over your symptoms and how you’re feeling. By following your doctor’s guidance and getting labs regularly, you establish a history and can see improvements over time. Knowing your numbers helps you understand what’s happening in your body and gives you a sense of control. When you start to take responsibility in helping to manage your symptoms, you feel better about yourself physically and mentally and are more likely to follow your doctor’s advice to stay healthy.
To learn about a study for patients with bipolar spectrum disorders experiencing weight gain from second-generation antipsychotic medications, please visit www.mobilitystudy.org
This study is funded by Patient-Centered Outcomes Research Institute (PCORI) (PCS-1406-19276)
DBSA Introduces Kathy Bernstein as Development Vice President
Kathy Bernstein joins DBSA as the new Development Vice President this month. In collaboration with the board and senior leadership, Kathy will refine and implement a development plan that guides all aspects of the organization’s fundraising strategy, including annual, institutional, major, and planned giving programs, as well as communications in support of fundraising efforts.
Prior to DBSA, Kathy led the National Safety Council’s (NSC) Volunteers and Awards Programs where she worked to engage NSC members and partners to join the Council in working to end preventable injuries and fatalities in our lifetime. In Kathy’s tenure at NSC, she led the Council’s teen driving initiatives where she raised $5 million to support a public education campaign; developed grassroots coalitions; created digital resources for parents—the most influential teacher in a teen’s driving experience—and worked for state legislators to enact critical graduated driver’s licensing laws to keep teens safe. She was the 2015 recipient of the Professional Women in Advocacy “Excellence in Advocacy—State Issue Campaign.”
In the past, Kathy also served as Director of Resource Development for the United Way of Metropolitan Chicago, raising more than $14 million annually. Kathy also served as an AFL-CIO Community Services Representative with the Chicago Federation of Labor and United Way. In this role, she worked to address the non-contractual health and safety concerns impacting working families in Chicago. Kathy received her degree in Social Work from Xavier University. She is married and the mother of two teens and the wife to a long serving Chicago law enforcement officer.
The Good, Bad, and Ugly
Finding useful information and nurturing connections with friends, family, and people with common interests are good things. Depression, demoralization, and isolation aren’t.
Wellness Tips from Peers
Whether it’s a counselor, a friend, a neighbor, or maybe a support group, it’s helpful to have a number to call when life feels overwhelming.
I find meditating once or twice a day for a half hour really helps to unload all of my excess energy and feelings from the day.
Sing even if you “can’t”
Play music and sing along. If you’re happy or sad. Either way, it helps release extra emotional energy. I sing in my car , loud or soft depending on mood. Every day. I sing to my dogs and cats and chickens. I’m not a pro either 🙂 it makes me feel better.