The Lybbaverse / interviews  

Former Mark Morris principal dances for Parkinson’s

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Lybba spent time talking with one of Global Alliance for Arts & Health's inspiring board members David Leventhal of Mark Morris Dance Group (MMDG) about his role as founding teacher and Program Manager of Dance for Parkinson’s (Dance for PD®). The collaborative program between MMDG and the Brooklyn Parkinson Group offers dance classes for people with Parkinson’s disease at Mark Morris Dance Center and The Juilliard School. 

Dance for PD has also been used as a model for classes in more than 75 communities around the world. Master classes are offered through MMDG’s touring outreach program and teacher training to nurture relationships in outside organizations and make classes available to more local communities. 

Lybba: Your work with Dance for PD has had a profoundly positive effect within the Parkinson’s disease community. Could you tell us more about what you do and how you got involved with the Global Alliance for Arts & Health?

David Leventhal: I initially became involved with the Global Alliance for Arts & Health through my work with Dance for Parkinson’s. [In 2010 Dance for PD was awarded the annual Johnson & Johnson/Society for the Arts in Healthcare Partnership to Promote the Arts in Healing. The grant is awarded to organizations developing innovative initiatives that promote healing and preventive health through the use of art. These initiatives work to serve patients, their families and caregivers.] Dance for people with Parkinson’s is not just about how the body moves in a dance, it is also to help those with PD engage with community. 

At first, we didn’t really see what we did as something that would be part of arts in healthcare. First and foremost, we saw the participants of Dance for PD as dance students, not patients. They just happened to be dancers with a common illness. 

Dance for PD did not want to train in and occupy the same environment as traditional healthcare operations. We would stress to trainees that we preferred programs stay out of healthcare facilities. 

The Society for Arts in Healthcare grants validated the community work Dance for PD was doing. In the past 10 years there has been an incredible transformation because of greater awareness of Arts in Healthcare. We didn’t have the kind of neurologists’ referrals as we do now. Ten years ago we were asked, “Where is the evidence?” “Where are the predicted outcomes?”

Our challenge questions from doctors now: What makes dancers qualified to do this work?

Before the SAH grant and another grant from the Andrew W. Mellon Foundation, there were only classes in 15 to 18 communities; now there are classes in 100 communities. And training classes have gone from two a year to 14 a year countrywide. A new section of our website has been built out to provide more resources to address the needs of community members, including a video archive of exercises.  We're in the process of releasing a new At Home DVD with program material for those groups outside communities with Dance for PD programs. These videos serve a much larger community. This multimedia outlet reaches rural and international communities, it provides for the patients who have transportation issues or those without access to classes. The video is two-fold: a substitute and an initiator.

Lybba: Are these classes common? Do you collaborate with other companies?

David Leventhal: First question: Are there other companies in town? If not, we will ask local studios to work with us. Programs based on our model have popped up at other established dance companies like the Houston Ballet and North Carolina Dance Theatre. The English National Ballet (ENB) in London has a very successful program as well, with ENB replicating its program in four other communities. Wherever classes based on our model happen, we want to have a say in how the training is done and how the teacher approaches the work, but we want teachers to make the program their “own thing”. For example, ENB uses the same model but tailors it to fit their ballet repertoire.

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Lybba: Where do you see the most potential now in the field of arts and health?

David Leventhal: Outside of traditional health settings and into community centers, museum galleries, assisted living facilities, etc. It’s about engaging communities in art, not just healthcare with four walls in a clinical setting. This is not a clinical application, and it is not in clinical environment.

Arts organizations are eager to be more engaged in their communities, but don’t always know how (especially outside of younger audiences). More and more we see this engagement happening in the field of public health or special populations, not just because of where healthcare is going, but also because of where the arts are going.

Questioning why art is valuable to society is an American symptom. We do not always see the value in the arts. We want to broaden the audience. Is the audience in the theater? Or is it in these community centers, museums, etc.?

Lybba: The idea of the arts should be justified for art's sake? 

David Leventhal: We all need to think about how to make this case to a larger audience.

People ask, "What is arts in healthcare?" It’s Gabrielle Gifford using music therapy to help her recover from her attack. These “wow stories” make the case for why arts and health is so important. It is these stories that need to be shared.

[One of these “wow stories” was recently sent to Leventhal by a family member of a patient. Through a simple YouTube video the story showed the patient in his nursing home coming alive, singing and dancing when exposed to music through an iPod. The family knew nothing of the arts in healthcare, they just found the experience amazing.]

Lybba: [Regarding work at Dance for PD] Is there potential for reconfiguring movement through constraint? 

David Leventhal: Structured choreography gives people a road map for how to move from point A to point B in a unified way--it's a strategy for knowing what comes next and initiating that movement. Here [at Dance for PD] we look for creative ways to use choreography to get around the boundaries or limits that people with Parkinson's often experience. And then sometimes, we encourage people to improvise, using their own unique movements to make a phrase of movement or a scene. We set up the context (or rules) and let the participants make up their own 'map'. 

Lybba: Can you share with us some of your successes, frustrations, inspiration?

David Leventhal: It’s a great group to work with, they push us to experiment more.

Inspiration: To see the patients overcome some of these challenges. We hear, “It’s the best part of our week!” Our job as teachers is to showcase how much they CAN do, and to keep reminding them of the things they CAN do.

The challenge is to make the class accessible. Some students who have been with us many years.  As the disease progresses, they have a hard time realizing that the class is now harder for them than it used to be. The frustrating aspect of our work is when these disappointments cause students to cut themselves out of the experience altogether. 

I’m inspired by the Global Alliance for Arts & Health conference and the connections made through the event. A benefit of connecting at the conference is hearing challenges and inspirations that other organizations experience. It’s also exciting to see overlaps and collaborative opportunities. 

I’m inspired by cross-disciplinary opportunities (like the potential for partnerships between arts organizations like MoMA and Mark Morris Dance Group that serve community partners like Brooklyn Parkinson Group) and seeing more regional networks created, more cross-pollination.

It’s about maintaining, sustaining, creatively facilitating people’s natural abilities. 

A note from Lybba: The impact of Leventhal’s work is well-articulated by Dance for PD participant, Michael Brookes on WNYC’s The Brian Lehrer Show,the sense of community and shared caring there has been a wonderful revelation.” “We don’t dance well but we dance with passion, and feeling and caring . . . and hope . . . that sometime, someone will find a way to help us get over this . . . cure this disease.” 

Are there programs like Dance For PD in your community? Share in the comments below, and we may feature them in a future post. 

How the border crosses psychiatric care

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Alejandra Postlethwaite, M.D. and UCSD assistant clinical professor, offers psychiatric care to Mexican American families in under-served communities in San Diego County and Calexico. A first- generation immigrant herself, she feels passionately about serving those that need her guidance - in her words, "to make change where it's viewed as impossible." She addresses the many challenges of the patients she serves, not to mention the constraint of the 15-minute limit she has to spend with them. 

Dr. Postlethwaite treats mostly children and families who are on Medi-Cal, at or below 133% of the Federal Poverty Level. At La Maestra, a Federally Designated Underserved Community Health Clinic, she works with children, adolescents, and adults who are either on Medi-Cal, indigent (meaning they have no health insurance), or on the government’s new Low Income Health Plan (LIHP). 

Approximately 90% of the patients she treats are minorities. Most of them are Latino children and adults - the children she treats are usually first- or second-generation Mexican Americans, and the adults are usually immigrants or first-generation Mexican Americans. Most either came to this county or grew up in this country in poverty.

How does the lack of resources cause or compound mental illness?

I believe the lack of resources could both be the cause of a mental illness or subsequently worsen an already existing mental illness.

If a person is genetically predisposed to developing a mental health disorder and is faced with the adversity and stresses of poverty, this can definitely trigger and be seen as the primary cause of a mental disorder. But it really depends on what type and severity of mental illness we are looking at. 

Do strong cultural and familial ties provide a supportive network for patients (or not)?

When it comes to Latino patients, most of them have important family ties to their homeland. However, they either migrated from their county or are the sons or daughters of immigrant parents who come to this county, where they find minimal to no family or supportive ties. They are faced with the unexpected expenses of the American way of life that most of the time cannot be met with one working parent.

This can then put pressure on the family unit, either pushing both parents into a harsh workforce with inadequate pay and childcare, or creating marital discord and/or anxiety that, if not adequately managed, is then transferred to the children, who can be remarkably resilient or experience emotional disturbances as a result (acting out behaviors, drug use, and/or academic failure).

Marital problems due to financial distress can also trigger divorce or parental separation. Single-parent households are prone to additional stressors of their own, worsening existing emotional problems in the family unit and individuals.

The more acculturated Latinos become to the American way of life, the worse their mental health becomes, as does their health in general, and the more prone they are to substance abuse and dependence. They are one of the only minority groups in the USA that exhibits this behavior. 

The reason is unknown, however one can speculate that in Latino countries, community and collectivism are important concepts and ways of life. In the United States, individualism, self-development and independence are encouraged and celebrated. It might be that the backbone of our Latino culture has "the familial" ingrained so strongly that even if a Latino is born in the U.S., acculturating to the U.S. might be perceived as acculturating “out” of their family unit, causing guilt and internal conflict, leading to internalizing disorder as depression and anxiety.

How does negotiating a dual cultural role add to this?

I can speak to the challenges that the dual cultural role brings to the Latino community in the U.S. It brings different types of challenges when looking at Latinos parenting first-generation Latino American children in the US. In many ways the U.S. is more liberal when compared to Latino countries.

Children in the U.S. are taught to be tolerant of differences in others from preschool on. Having a same-gender couples as classmates in high school or a friend whose parents are gay is not as uncommon as it is in most cities in Latin American. This is very likely due to the strong and most common religious preference in Latin America, Catholicism.

A immigrant Latino parent could experience culture shock and find it disturbing if their American child expresses behaviors that are viewed as age-appropriate in the U.S. but are unaccepted or not talked about in Mexico - for example, premarital sex or sexual experimentation. This could create significant turmoil in the family, and the child might feel misunderstood and/or lonely even if their family unit is considered strong or close-knit.

Mental illness continues to be somewhat of a taboo in Latin American cultures. It's not discussed openly, and if a child has a mental illness, it's viewed as a result of poor parenting rather than a medical condition. That said, many Latino children in the U.S. are not brought in for an assessment or treatment due to the stigma of mental illness in their communities.

Tell us about your work in Calexico and San Diego, and how they compare.

One of the major differences that I see when I compare Calexico to San Diego is that in Calexico I treat mostly first-generation Mexican American children - all were either citizens or permanent residents. This was due to working for a county system that serves Medi-Cal patients and county public health systems not accepting indigent patients. Since I've worked for La Maestra, I see all types of patients - some with Medi-Cal, but as stated above, many who are indigent or on Low Income Health plans.

A big difference, as well, is that the parents of the children or the adults in San Diego tend to be less dependent on welfare and other governmental programs. Most of the parents of the children I treat work or have recently been laid off and are looking for work. However, in Calexico most of the parents of the children I treat have governmental aid. I think this is because Calexico is significantly less expensive than San Diego, and families can live a comfortable life on welfare and food stamps when compared to San Diego.

How is the outreach conducted, and how are you able to spread the word about the services? Is finding funding difficult?

In one of the public mental health clinics where I work (Rady's Children’s Hospital), the outreach is conducted at the schools. The clinic has therapists who see children in schools, and if needed, refer me to them for an evaluation. All of this is done with prior parental consent. A therapist, even if they are based on school grounds, cannot meet with a student if his or her parent does not sign a consent form.

The outreach at La Maestra, the inner city clinic mentioned, is done by the other doctors and/or clinicians working here, or by the centralized Medi-Cal access hotline that has our information available for those searching for help.

Is most of your time spent managing medications? 

Most of my time is spent providing psychoeducation and medications. Unfortunately the way the public and managed health care system is set up now, psychiatrists are hired to provide only medication management to patients and have patient flows like most family practitioners, meaning 15-minute appointments.

It's hard to provide adequate psychotherapeutic intervention in 15 minutes. During that time, one needs to assess the response to medication, side effects, review laboratory results and active symptomatology, and lastly, document all of this, usually on non-user-friendly electronic health record systems.

Therapy is usually deferred to social workers, psychologists, or family therapists. However, if a patient has an urgent need for a psychotherapeutic intervention that does not involve medications I take the time needed to intervene. 

Why are mental health services especially crucial for under-served communities?

One, because a large number of the population that lives in under-served communities is low-income or lives in poverty, and as explained above, poverty and/or financial stress is a risk factor for developing or worsening mental illness.

Second, under-served communities are usually “medically under-served” as well, meaning their patient-to-doctor ratio is extremely high because doctors avoid working in underserved communities for various reasons - mostly because  the patient population tends to have significant co-morbid medical and/or mental health conditions. Hence, they are difficult to treat, their prognosis is not great, the number of patients and workloads are higher than in non-under-served areas, and the ability to refer out for more specialized care or tests can be extremely difficult to impossible, so doctors are left to do a lot, for many patients, with minimal resources.

Nevertheless, I am passionate about working within under-served communities because even though it can be hard, the rewards are significantly higher when one makes change in a place where change is viewed as impossible by most.

Armed with a sewing machine, Sister Rosemary takes a stand

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A scholar, leader, and director of St. Monica’s School in Gulu, Uganda since 2002, Sister Rosemary Nyirumbe has offered a safe haven to hundreds of refugee women and children who have suffered the trauma of civil war or abduction by the Lord's Resistance Army (LRA). Residents not only gradually rebuild their lives through learning cooking and dressmaking but also reclaim their dignity



Sister Rosemary brings hope to the hopeless and heals the wounds of war, and for this, she was honored at this year’s Starkey Hearing Foundation “So the World May Hear” Awards Gala. She adds the award to many distinctions, including 2007 CNN Hero of the Year and a recent Nobel Peace Prize nomination by Dr. Madeleine Albright. She extends to all of us the same hands-on learning that she offers her students at the missionary school—see and understand what needs to be done firsthand.

When did you first connect with Starkey Hearing Foundation?



Three or four years ago we came together as a team. The partnership and collaboration started with Pros for Africa, sending doctors, lawyers, volunteers, sisters, and athletes to Africa. It was a great moment to see all the different organizations coming together to support the work. Before then, I had no idea how many had experienced hearing loss.



Tell us about St. Monica’s, where you devote so much of your time and heart, and the students there.

The mothers are quite young. During the war, they were abducted by rebels. A lot of the girls feel anger and direct it toward their children, and the children are very innocent. When we take them in, we give them support. We help them. We become like mothers to them because we know very well that these young girls themselves have lost their own childhood. We find that in helping them and their children together, they begin to love their children and begin to care for them, and they take responsibility. The future of hope is there for them.

Have things improved as the violence subsides?



It's true that now there is relative peace. You can say the sound of the gun is now silent, but in the hearts of the girls, the sound of the gun is still going on. And we need to go on a journey with them; we need to work with them to understand the pain, which is going on in their hearts.

You view the prison next to the school as "an opportunity"?



We are helping women who are disadvantaged at St. Monica’s, and behind our wall there are also women and children who are disadvantaged who are being detained for many reasons. We go there and see how we can help these women. Now when we find the children are detained with their mothers, the children are sent to St. Monica’s. Then, I thought about the men—that we could support them, too. So we started giving them the skills we were offering at St. Monica’s. I personally went and taught them how to make these purses. [She shares with us a pop-top clutch.]

What are you doing to teach hearing care?

We value sustainability in all that’s being done. In order to have this sustainability, to see it going forward, our own people must get trained to identify infections, to treat them—not letting it go to the level of hearing loss. Then we have this problem, financially, with transport, to reach out to these people. The bottleneck is that our area coverage is so big, all the way up to South Sudan—we’ve started outreach. We’re moving ahead with the Foundation and with the help of other organizations . . . If you are not healthy, you cannot be educated; if you are not educated, you will not value health.

How is training being set up?

In South Sudan and North Uganda, the sisters are able to find people with hearing loss, and it’s important to open a corner of the school to children with hearing loss—to get help and continue with their education, and train them in sign language.

On the cusp of opening a new school, what does the future hold?

We want to see that we are benefiting disadvantaged people in the right way. We hope all of these organizations will continue working with us to inspire other organizations like Pros for Africa and Starkey Hearing Foundation. Then you can accomplish what you want to do. We want people to come and see what needs to be done, to make a difference in their own mind. I can tell them, but they can’t see all the details until they come look.



Sister Rosemary was originally interviewed by the authors for Starkey Hearing Foundation's "So the World May Hear" magazine.

Connecting to cure

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Stacy Dylan is committed to connecting not just patients but entire patient communities around chronic care. The nonprofit she co-founded, Connecting to Cure Crohn’s and Colitis (CCCC), is a perfect testament to this vision, spreading the benefits among many organizations.

This week, we had the honor of interviewing her (after she completed a triathlon in San Diego) about her Crohn's Disease advocacy and how she came to it. Her objectives tie in so well with Lybba's commitment to C3N, a chronic care collaborative, networking patients, clinicians, and researchers to influence behavior and improve outcomes. We're fortunate to have her dedication and expertise at Lybba. 

Jesse Dylan often relates the story of how he started Lybba because of his son's illness. You have a similar story around your own advocacy for Crohn's and Colitis. Could you share it with us?

I've recently started to research many different IBD related foundations and research centers. My inspiration is my 12-year-old son who was diagnosed with Crohn’s Disease when he was two, and my goal, when it comes right down to it, is to find a way for him to have a future that does not include dealing with this chronic condition. I have met so many others with IBD, parents, and other people with Crohn’s or Colitis and they too have inspired me on this journey.  Talking about the disease and our experiences has led me to meet different doctors, researchers, educators, and people who work with IBD patients.

What are your affiliations and goals? How do you get people involved? You mentioned fundraisers and participation in or promotion of clinical trials.

I've been affiliated with the Team Challenge Program of the Crohn's and Colitis Foundation of America (CCFA) and the Pediatric IBD Center thus far, and I'm also looking to other organizations to support. I've organized two music-related fundraisers and am planning two more for 2013. Part of our proceeds have funded research in Pediatric IBD at Cedars-Sinai, and the rest went to CCFA.

What is most vitally needed, in your opinion, to best support the cause?

Actually, what I think is that a lot of these organizations need to come together and share their information, data, and research, so that they can collaborate and share resources. Also, I think innovative and more aggressive research into medications, nutrition, and alternative therapies is needed. I know this is complicated with FDA rules and oversight, but it would help further the goal of finding treatments and cures. 

In the meantime, Connecting to Cure Crohn’s and Colitis (CCCC) is going to work to spread awareness about Inflammatory Bowel Diseases. Most people do not understand how serious and life altering Crohn’s and Colitis are. It's not just an upset stomach that can be alleviated by changing your diet. They're autoimmune diseases that can have an enormous affect on one’s quality of life and require hospital stays, bowel rest (meaning getting nutrition through tube feeding), and not being able to participate in normal activities. For children, this can be especially difficult and also usually affects growth.

So we're letting people know about these diseases, and raising money.

Tell us more about the decision to start your own nonprofit. 

I wanted to have more flexibility to distribute money I fundraise for different Crohn’s and Colitis related charities. That was our initial goal and we're just getting started. We also want to spread awareness and build a community around our efforts.

What's next for CCCC? 

We are starting to plan our children’s piano fundraiser which will be in January 2013, and our "Rock the Night" event, which will feature music by Jakob Dylan and special guests, a silent auction, food, drink, and fun!

For more information, contact Stacy Dylan 310-991-8593; Stacyjd@me.com.

Precisely Watson: Paul Grundy introduces the doctor’s new assistant

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Watson, the supercomputer that famously beat out two Jeopardy! champions in 2011, has the potential to drastically improve how primary care physicians diagnose and treat their patients on an individual and global level.

Paul Grundy, IBM’s global director of healthcare transformation, explains how Watson’s ability to process the medical research and literature of the world will open up the minds of doctors who need to have a broad base of knowledge in order to help their patients.

With the ability to structure vast amounts of medical information into a differential diagnosis, Grundy hopes that Watson will become “the assistant of the doctor” – an assistant that will offer solutions that the doctor might have overlooked. Watson catalogues and projects its interactions with the doctor, and this information becomes a part of a global network available to all physicians who work with Watson.

Filmmaker and Lybba founder Jesse Dylan interviews Grundy about Watson’s potential to transform primary care.