Reji Mathew, Ph.D. - Writer

Upcoming...

2012-01-06T16:38:00.000-05:00

Charity Navigator

2011-12-01T08:17:00.000-05:00

Throughout the year, I come across many dedicated non-profits doing important advocacy work for health and wellness. Among my favorites: The American Brain Tumor Association, Blissful Bedrooms, and Post Polio Health International. Donations to such organizations fund research to find cures, provide adaptive rehabilitative equipment to those who do have not the resources, or sponsor projects to improve quality of life for young persons with disablities.

In this season of giving, there are countless ways to contribute, make a difference, or support an issue you care about. Where to start? Charity Navigator, the nation's largest and most up-to-date evaluator of charities, is an innovative website that offers accessible information on the financial health of charities across the U.S. "Our resource is designed for all donors,"says Sandra Miniutti, Vice President of Marketing & CFO. On Charity Navigator, you can search for charities by name, topic of interest, location or type of activity. Each charity is awarded an overall rating from zero to four stars. The rating system evaluates how responsibly a charity functions day-to-day as well as how it maintains its programs over time.
What are the issues you care about? Do you want to support a health issue or a local non-profit serving a specific population? Are you interested in global relief efforts for events no longer covered in the media? Miniutti suggests, "Pick a charity that is consistent with your beliefs. Do a personal assessment of what you would like your donation to accomplish. In cases of global relief, are you interested in supporting immediate assistance or do you want to commit to the long haul towards re-building efforts?"

The ethos at Charity Navigator is to promote "intelligent giving" - that well managed charities and non profits lead to donations that will be more effective. In addition, surfing the Charity Navigator web site is a fasinating glimpse into the world of philanthrophy. For this aim, Charity Navigator provides several user friendly tools to assist you in deciding on how broadly or specifically you would like to give. There are tips for older donors, a guide to volunteering, a tip sheet for donating non-cash items, and a new option of purchasing a charity gift card. Better yet, if philanthropic giving becomes an area of personal interest, you can stay on top of news and trends year round by subscribing to the Charity Navigator E- Newsletter. "Be a pro-active donor; instead of a charity contacting you, sit down at the beginning of the year and come up with a plan. Charities like hearing from donors. Ask about what kind of success they have with the programs you are interested in," Miniutti explains. Charity Navigator, operated by a modest, commited staff, is a 501 (c)(3) non-profit organization. They are unique in that they do not accept funding from charities they evaulate, so that they can remain objective and they do not charge visitors to the web site a fee to use the services. "We rate 5,500 charities representing 65% of giving in the U.S. We would like to get up to 80%, but don't have the resources right now," says Miniutti.

In the spirit of giving - if you make use of this excellent resource - remember to give back. Charity Navigator welcomes all donations, even as small as $10.

Happy Holidays.

SNApps 4 Kids

2011-11-12T20:31:00.001-05:00

The outpouring of emotion for the recent passing of tech genius, Steve Jobs, is validation of how much the magic of digital devices has become a central part of our daily lives. Phones and tablets are lifestyle managers, offering apps that help with organization, planning for dinner or checking one's budget. Jobs will be remembered as a central inspiration for the digital age, but how people continue to make creative use of digital technologies is the post-Jobs story.

SNApps 4 Kids is a cutting edge web community of parents and professionals who seek to share information on ways to use educational/therapy apps on the latest technology devices—iPad, iPhone, iPod, Android and others—to support the developmental learning goals for children of all abilities.

Cristen Reat and Sami Rahman co-founded SNApps 4 Kids after meeting at a weekly parenting support group that explores the use of digital tools for children with special needs in Houston, Texas."SNApps started out of a need for an organizational structure. There are over 40,000 apps out in the market now. Just because an app says it’s designed for grades 2-3 does not provide much info on how it can be helpful," said Rahman.

SNApps 4 kids is parent-driven, offering detailed reviews on apps by skill, not diagnosis, such as color recognition, social interaction, and language arts. "We wanted to keep the focus on skills, as we know that each child is unique in his or her strengths and needed areas of support. Many of the apps can be downloaded on Apple and Android tablets. Devices will keep changing over time, but not the skills," said Reat.

Rahman and Reat are believers in the benefits of apps, because they both are parents of children with special needs and seen positive results. Reat experimented with adaptive mouse pads for her son, Vincent, age 6, who has Downs Syndrome, "Vincent could not hold a pencil due to this fine and gross motor issues. We tried the iWriteWords app on the iPad. He began to trace letters with his fingers; it had an immediate cause-and-effect response with musical rewards. After a few weeks, he became motivated to us his hands and transferred to using a pencil." Rahman had similar success with his son, Noah, age 2, who has Cerebral Palsy. "Noah made gains in his speech through one of his favorite apps, Monkey Preschool Lunchbox. He also responded to the interactive nature of the app, and in addition, it also helped with this finger isolation skills."

While Rahman and Reat are passionate about how apps can enhance learning, they have their caveats. "There are no magic bullets when your child has special needs", said Rahman,"Progress is accomplished by 1,000 little tasks; digital tools alone are not the solution. We view apps as one part of the therapeutic team approach on behalf of your child."

Reat cautioned, "We also don't encourage parents to run out and by a device. Take a step back, ask a few questions: What do you want a device for? What skills are you trying to improve? What goals do you have? Once you find answers to these questions, then decide on the best device for your child." Reat added that it is critical to have client buy-in. "You can't hand a device to a child and leave; there needs to be support for the child around that device."

Just over a year old, SNApps 4 Kids has undergone impressive growth. The community has partnered with Easter Seals of Greater Houston and the web-site is accessible in multiple languages. SNApps 4 Kids offers a directory of funding sources for devices, a Facebook page, and a forthcoming checklist on goals and expectations to use when deciding what type of device to purchase.

If you are interested in joining the SNApps community, you can register with the site, which allows access to community boards and forums. You will be able to start your own group, share a success story or get further tips. SNApps 4 Kids continues to build momentum. Rahman and Reat hope to expand to SNApps 4 Teens and Adults as the next ventures.

Nutrition for Heart Health

2011-10-02T10:05:00.000-04:00

Paying attention to what we choose to eat is one of the most direct ways to improve and maintain our health, particularly heart health. In an interview with Wolf Blitzer at CNN in May 2010, former President Clinton spoke about the changes he made with his own eating habits – adopting a plant based diet— to take hold of his heart health.

Clinton, who has undergone bypass surgery in recent years, took efforts to learn about the research of Esselstyn, Ornish and the Campbell’s of the China Study, who have gathered evidence on the benefits of plant-based diets.

Clinton told Blitzer, “Since 1986, 82% of the people who have gone on a plant-based diet (not ingesting cholesterol from any source) began to heal themselves; their arterial blockage cleans up, the calcium deposits around the heart breaks up.” He explained that he subsequently decided, “I’ll be become part of this experiment; I’ll see if I could be one of those people with a self-clearing mechanism.” Clinton shared with Blitzer that his diet includes beans, legumes, vegetables, and fruit. He drinks a protein supplement in the morning, and has fish on occasion. His dietary changes resulted in a weight loss of twenty four pounds, changing his whole metabolism.

I spoke with Dr. Rachel Johnson, nutrition consultant for the American Heart Association, about Clinton’s journey and the nutritional guidelines of the AHA. “We do encourage plant-based food in every diet: about 4 ½ cups of fruits and vegetables each day, amongst other healthful choices such as whole grains, lean meats and low fat or fat free dairy products. The goal is to reduce the amount of cholesterol and saturated fat in one’s diet. Plant-based diets tend to be lower in calories and high in fiber. If a person decides to transition to a plant-based diet – no dairy or meat- it is important to work with a registered dietician and be closely monitored, so they can plan on how to find substitutes for calcium, for example,” said Johnson.

Since food habits are daily habits and can easily feel overwhelming to master, where to start? “In nutritional counseling, we look at what stage of change is a person in and what are they willing to do?” said Johnson. “Nutrition is a key component of heart health,” she added, not just weight management, but also in preventing and managing the risks of heart-related diseases.”

The AHA’s national goal is to improve the cardiovascular health of Americans by 20 percent, with the aim of reducing deaths from cardiovascular disease and stroke by 20 percent by 2020. Evaluating one’s diet is one of the “Simple 7” strategies, promoted by the AHA for maintaining heart health.

The AHA web site is packed with ideas on all aspects of making dietary changes: shopping, meal planning, how to read nutrition labels, and numerous heart healthy recipes. A professor of nutrition at the University of Vermont, Johnson shared her observations on cultural shifts in the U.S. towards healthful eating, “I see a resurgence of interest amongst young people and local communities on sustainable foods and where it comes from.”

As a public advocate for nutritional health, Johnson believes that health habits can be taught as early as pre-school, “It is up each individual to make healthy choices, but as nation we need to look at what kind of environments we are creating for our children. We want an environment where the healthy choice is the easy choice – the default choice,” said Johnson.

To learn more about Dr Johnson’s advocacy on nutrition and wellness, follow her BLOG on Eating Well.com.

Sensory Smarts

2011-09-10T21:55:00.000-04:00

From the moment of birth children process the world through their senses. Through discovering taste, touch, sound, and movement each child develops unique likes and dislikes. For some children, however, sensory processing can be painful or disorganizing.

Raising a Sensory Smart Child, by Lindsey Biel, M.A., OTR/L, and Nancy Peske, is a resource-rich, practical handbook for parents and caregivers of children with Sensory Processing Disorder (SPD) as they work to help kids find their daily balance.

What is sensory processing? “It is a neurological process of translating input from our bodies and environment into meaningful messages we can use,” says Biel. For children with SPD, everyday activities such as grooming or playtime, or common noises such as moving a chair on a linoleum kitchen floor can cause distress. “There is a difference between sensory preferences (liking the color red) and intolerance's ([being]bothered by certain fabrics - wool clothing). What we look for is when children are exhibiting out-of-proportion reactions to everyday routines."

Biel’s work shows parents how arranging simple steps in the course of a day can help retrain the nervous system to work more adaptively for children with sensory integration dysfunction. In the handbook, the authors provide a Sensory Checklist to guide parents and teachers to identify the problem areas where a child may need support. “Put things down on paper. Make a list of your child’s strengths and [a] list of challenges. Among the areas of challenges, pick the top three areas, for example, ‘my son bites other children, is a picky eater, or is scared at the sound of the toilet flushing,’” explains Biel.

This assessment tool is a template for what Biel calls setting up a Sensory Diet, a schedule of activities that help a child regulate to sensory input. “A reactive child may need more calming input such as time on a therapy ball in the middle of the day; for a child who is lethargic, they may need more arousing input such as music,” says Biel.

Sleep time is a common problem area where children can benefit from sensory-smart interventions, “When I go into homes to assess what may be the problem with sleep time,

I first look at the sensory aspects. If the child is tactile sensitive, I look at the bedding. Is the room is cool enough?

I evaluate the lighting. I also look for what could be soothing to a child such as [using] a weighted blanket. We also don’t overlook medical aspects and behavioral aspects. If a parent works late, a child may need the time with a parent before being able to go to sleep.” The good news about sensory-smartinterventions, says Biel, is that the effects are usually immediate and can help children to handle transitions throughout the day with less stress.

While these tangible steps hold promise in helping children self-regulate, Biel is quick to note that children cannot be protected from every unpleasant sensory trigger, and that teaching coping is also critical. “Every parent needs to ask themselves, ‘When do I push my child and when do I protect them?’ For example, when attending a party, teach the child an exit strategy beforehand. If the child feels overstimulated, how can the child take a break and re-group?” she says.

Biel also notes that acquiring sensory-smart intervention early helps child to self-advocate, “An older child, for example, can learn when to say, ‘I need water,’ or ‘I need to go for a walk’ or a nonverbal child can use a card system to communicate, ‘I need my lap pad.’” Biel makes an important distinction between difficult behavior and sensory overload.

Developing an understanding of a child’s sensory diet, adds Biel, can help teachers in school settings recognize and manage what overwhelms the child and prevent the child from getting overloaded in the first place.

This fall, parents will be preparing their children to return to school. Biel's website also offers a section with tips on how to advocate formally through an IEP and additional tips in a back-to-school web-cast series at Autism Hangout.

What I appreciate most about Biel’s work is how it inspires one to think more broadly about all children’s needs, “If a child is front of the television all day, their visual system is only in use, and all the other systems are ignored. Children need to move. Limit the screen time and increase the sensory exploration time. Kids [need] to be out in nature, out in the playground. From a sensory standpoint – life is a multi-sensory experience.”

Raising a Sensory Smart Child is an empowering resource for any caregiver, with advice on how to reach children where they are at with tangible, doable strategies, integrating an essential part –the sensory self- into their emerging personalities.

Narrative Storytelling and Health

2011-08-06T15:00:00.000-04:00

Each day, we humans participate in a common activity—the ancient craft of storytelling. Reading the daily paper, watching movies, or catching up with friends—sharing or listening to stories is at the heart of our nature. But can telling your story have benefits for your health? “Yes, most definitely,” says Paul Browde, actor, psychiatrist, and narrative therapist, “It made all the difference to my health and life."

Sharing the healing power of storytelling is a narrative exercise that Browde and his fellow actor Murray Nossel, an academy-nominated documentary filmmaker, have engaged audiences in for the last 14 years through Two Men Talking, a live unscripted performance that has been showcased to acclaim in New York, London, and South Africa. In the performance, the two men explore a variety of stories: growing up white, Jewish, and gay under apartheid in South Africa, homophobia, racism, AIDS, and most importantly, their friendship and the passage of time.

“We found that audience members would come to us after the show and wanted share their stories,” said Browde. Nossel and Browde came to recognize the need for spaces for storytelling and also guidance on storytelling technique. They created methodology to help participants discover their stories and empower participants to establish new relationships to the problems in their lives. Among the many arenas in which their organization, Narativ, has conducted workshops, the use of narrative work in supporting one’s health is a connection that is most striking.

Browde shared an example from his counseling practice of a woman with a rare form of cancer that requires lifelong chemotherapy. The doctor’s narrative of the case depicted her as being cured in remission; her experience was of being sick every three weeks due to the chemo treatments. “In our narrative work, we helped her reconnect to the narrative that she is an activist, and not only a cancer patient, and that she has a life-long story of advocating for others. It helped her to explore ways she could advocate for herself and find ways she can live with her experience,” he stated.

Browde advised that there are two critical aspects narrative work in health care. The first is the reciprocal relationship between listening and telling. “When we listen to the whole story, or multiple stories that patients may be struggling with, it impacts what patients may tell us and secondarily, the interplay between both listening and telling leads to dialogues that are central a patient’s wellness. I think such dialogues could broaden the definition of what treatment is—it may be more than chemotherapy—to a dialogue of the pros and cons of facing such a treatment regime for one’s whole life. In such a case when the personal experience, narrative, of the patient becomes part of the focal point of the treatment, it may enable the patient to face the problem (cancer) and continue the treatment,” he stated.

The idea of multiple stories or a hidden narrative—being an artist, activist, gardener, writer—is central to narrative work; there are multiple possibilities or parts of ourselves to explore at this moment. In Browde and Nossel’s work, this idea is a practical, tangible technique in their storytelling work and has guided them in health-related global projects they have undertaken through Narativ.

In South Africa, they used storytelling circles to assist persons with HIV and non-affected family members to understand what is like to have HIV in that culture, addressing issues of secrecy, testing, and stigma. In Senegal, they conducted storytelling workshops with HIV educators, enabling women to build a community of support around the challenges of being a sole educator in a particular area. In Croatia, Narativ conducted narrative training for an organization that was assisting with the de-institutionalizing of persons with intellectual disabilities. The narrative work was used in a media campaign to educate the public on how such persons can be reintegrated into local communities and the meaning of such an opportunity. In all of these projects, narrative work led to a new idea, perspective, or social option.

“Stories don’t only reflect life,” said Browde, “they also shape life.” The impact of narrative work on health is one that Browde knows personally as well. In 1985, at age 25, he was diagnosed with HIV. “At the time, the only narrative that I knew about HIV was that I was going to die in two years time,” he said. In the 80s when little was know about the virus, there were few models of how he could envision his life. With the support of a number of influences, Browde went public with his story at an annual American Psychiatric Association meeting with a presentation An HIV infected psychiatrist, “I remember from that day forward, that a line of demarcation from others dissolved and I was able to reconnect with the support and open dialogue I needed.”

In the health-focused narrative workshops, a common theme is how one can use narrative technique with the daily coping of a health condition. Browde shared his own example, “I recognized that the virus had become a part of me and I could not ask for it to be eradicated. The metaphor of battling HIV gave me a feeling of being at war with my body. Instead, the narrative that emerged was of living in peaceful coexistence with HIV. That does not mean that I don’t have hard days or struggle with the impact of side effects of medications, but I keep coming back to that narrative of peaceful coexistence—with diet, exercise, stress management—with the condition.”

Browde encourages others to discover narrative work. “It gives life a unique hue for me. One can read a million articles or textbooks on what it is like to have a particular medical condition, but for you it’s the first time, your own unique experience. Everyone has a story…it’s your birthright.”

The Sarah Jane Brain Project

2011-07-07T20:52:00.000-04:00

Each year over 765,000 American youths, about one every 40 seconds, visit an emergency room for a traumatic brain injury (TBI). Compounding this complex diagnosis, families have to navigate an often-frustrating maze to access health care or discover the lack thereof. “Whether you are prince or a pauper, you face the same struggle across the U.S.,” says Patrick Donohue, founder of The Sarah Jane Brain Project.

Donahue knows the challenges parents face firsthand. The Sara Jane Brain Project is named after his daughter, Sarah Jane, who at 5 days old was shaken by her baby nurse, breaking four ribs and both collarbones and resulting in severe pediatric acquired brain injury (PABI). From the outset, Donahue became harshly aware of what families of children with brain injuries contend with—an uncoordinated system of care, a medical issue with minimal research dollars, and haphazard treatment options.

Brain injury is a condition that can be categorized as mild, moderate, or severe, and can be both traumatic and non-traumatic in nature, with varied causes—combat-related, stroke, meningitis, substance use, accidents, abuse, or sports-related concussions. Regardless of the cause of a TBI, Donahue explains that 98% of the post-care TBI issues are the same. “Once you get past the prevention phase to acute phase issues, it’s all very similar. A family who has a 16-year-old who developed TBI from a skateboarding injury is stuck in the same system of care that I am in with Sarah Jane,” he says.

In late January, the Sarah Jane Brain Project launched a 40 + state nationwide Brain Injury Tour, which began in North Carolina at the NHL All-Star weekend. The tour has moved through high schools from Chicago to Minnesota, presenting to student athletes and coaches the foundation’s concussion prevention and awareness program “Concussions and You, On and Off the Field.” They have also held numerous town hall meetings in community settings such as Rainbow Babies and Children’s Hospital in Cleveland, bringing together health care practitioners to discuss treatment options. The foundation’s efforts are broad sweeping, with a focus on promoting public awareness, prevention, and treatment of PABI and sports-related concussions in youths.

Back on the home front, the Sarah Jane Brain Project (SJBP) is leading the way for a standardized evidence-based system of care through the formulation of their National PABI Plan. In the months after Sarah Jane’s injury, Donahue became interested in models of open-source knowledge, common in the computer world, and how such models can further research and treatment for pediatric brain injuries. ”When we started this journey, I found so many dedicated professionals were doing important work, but independently of each other. We know so little about the brain, I wanted to know how we could bring this knowledge together into a coordinated resource,” says Donahue.

In a leap of faith to advocate for his daughter’s needs, Donahue posted Sarah Jane’s medical records on line to generate greater clinical and research support for her care, a first in medical history. The HIPAA privacy laws would normally not allow this, but as a parent advocate, Donahue was able to do so for his own daughter. The aim is to push the field of pediatric brain injury forward “50 years in 5 years” as it says on the SJBP website. ”I started hearing from people from all over the world who supported what we were doing,” says Donahue. “It has broken down barriers in terms of the questions that researchers can ask. I am an impatient person when it comes to helping my daughter.” Donahue also notes that the PABI plan is family- centered. “TBI is a condition that affects a lot of people; it affects the siblings, parents and extended family members, and any one who is a caregiver,” he says.

The foundation’s work has also generated attention on the global front. This past March, Donahue was the keynote speaker on establishing an international PABI plan at the 16^th Convention of Academia Eurasiana Neurochirurgica in Mumbai, India, a conference gathering of top neurosurgeons from around the world.

Sarah Jane, now 5, continues on her own journey alongside her dad. She attends Standing Tall , a specialized school for children with disabilities. Known as the “diva” among her therapists, Sarah Jane loves to play on the swing, loves fresh foods, and is up to 22 minutes on the treadmill with adaptive support. Donahue is tireless with the work of the foundation. I asked him what keeps him going, “Sarah Jane works her tail off. I draw strength from her; it gets me up and drives me every day, and as her parent it is my job to do what I am doing.”

Tai Chi and Arthritis

2011-06-01T18:01:00.000-04:00

The gentle, meditative, paced movements of Tai Chi hold promise as a path of restorative exercise for those struggling with mobility challenges. A widely practiced Chinese martial art, Tai Chi improves balance, aids in stress relief, and promotes circulation of the "chi" (energy) - a therapeutic effect common in eastern healing modalities yielding balance in the body. The Arthritis Foundation sponsors a unique Tai Chi program, Sun Style, formulated by Dr. Paul Lam. This program is composed of a series of movements tailored to the needs of persons diagnosed with arthritis.

The Vicious Stress Loop

2011-05-16T19:12:00.000-04:00

The mind and body absorb stress like a sponge. The good news is that stress management can be learned. It may feel unnatural at first to take a moment to relax when feeling stressed. Having a variety of stress management strategies to implement, based on your available energy level can be a helpful skill set - daily (breathing or stretching), weekly (scheduled exercise), or monthly (mini day vacation). No need to wait until you are stressed-out to take care of yourself. Managing your stress levels actively versus re-actively can foster increased resilience. Countering the vicious stress loop is worth the effort and the payoff is usually immediate.

Fall Prevention

2011-04-03T14:25:00.000-04:00

Falls are a leading cause of injury among older adults. Falls can be traumatic, both practically and emotionally. When such an incident happens, seek medical care, as the fall could be a sign of changes in your mobility. Fall prevention training is a holistic model of intervention involving three areas: balance training/adaptive exercise, medical management, and home modifications. The Fall Prevention Center for Excellence is an health advocacy organization seeking to raise public awareness of the incidence of falls and the importance of Fall Prevention education. If you are concerned about a loved one, StopFalls.org offers several educational resources for support.

On The Ethics of Hope - Brooke Ellison

2011-03-22T15:12:00.000-04:00

An interview with Brooke Ellison, March 2010:

What is the role of hope in medical care? It is a complex and vital one, and it will soon be the focus of a six week elective course, The Ethics of Hope. The course will be taught to second year medical students at Stony Brook University Medical center this coming March.

The instructors are Brooke Ellison, 31, a doctoral candidate in sociology, and Steven G. Post, Director of Medical Humanities and Compassionate Care at Stony Brook University. They make a strong case for examining the role of hope in medical care, a perspective that is not commonly a part of the training for medical students. “I want to take the subject of hope out of the philosophical realm and provide students a structured way of thinking about it,” Ellison states.

Ellison’s own life is a notable study of hope. Nineteen years ago, at the age of 11, she was hit by a car and left paralyzed from the neck down, dependent on a ventilator. Her journey is a remarkable one, including a Harvard undergraduate degree in cognitive neuroscience and a master’s in public policy from the Kennedy School of Government. As a rising scholar, Ellison began her evolving discourse on hope with her bachelor’s thesis, Hope in Resilient Adolescents. The discourse was furthered recently by Hope Deferred, an advocacy documentary on stem cell research produced by her foundation, The Brooke Ellison Project. Ellison’s life and work represent a distinctive interweaving of her personal and professional interests.

The course is centered on core assertions regarding hope. The first is that there is a fundamental difference between optimism and hope. Drawing on the work of Dr. Jerome Groopman, a Harvard hematologist-oncologist and author of The Anatomy of Hope, Ellison explains, “There is a level of action in hope, which can ground your life, not wishful thinking, but rather, envisioning steps.” Hope now has its own emerging science. NIH-funded studies link hope to enhanced wellness, stress reduction, and longevity. However, it is the undeniable role of hope in the human exchange between doctors and patients that Ellison is most interested in addressing.

“The doctor’s role is not just a deliverer of an unfortunate diagnosis,” Ellison states, “This is where their role begins; the role of a physician implies the ability to interact with people, and any notion to the contrary is an incomplete one, especially when they are dealing with intricacies of people’s lives,” she adds. “Doctors play a fundamental role in facilitating hope. They are not only a provider of information but also a clarifier of information. “

Ellison says these doctor-patient conversations are pivotal in recovery. “What is most important is to help patients through the enormity of their feelings, that there is a life after a catastrophic diagnosis. Patients need doctors’ help in these moments. When patients learn to cope with life altering circumstances, they can then deal with other concerns,” Ellison states. She notes how fostering hope teaches patients tangible lessons. “They will develop the capacity for self- agency, 'I can do these things, even if it is small.' This is so critical to how people will carry out the remainder of their lives; it is a tremendous loss when they don’t do what they could possibly do.”

How Ellison negotiates the demands of her own life is a compelling model. “You develop an ability to compartmentalize. Just because you have a challenge in one part of your life, does not mean that it has to affect every aspect of your life. That is what I have learned and I feel fortunate to have come out to the other side, to share my experience with others,” she says.

And yet, Ellison is careful to add that fostering hope does not mean imparting false hope. Hope needs to be handled carefully, realistically, and it is also important to know when to redirect a patient's hope.

“I think in many cases people view hope as something intangible or irrelevant to recovery. In other cases, people can view hope as denying people of 'knowing the odds' of recovery or of achieving a specific outcome. I don’t believe that either of these two misconceptions have anything to do with hope, as it is extremely relevant and does not depend on reaching a full recovery. It is about a state of mind and a way of interacting with a set of circumstances positively. These are the misconceptions about hope that we plan to address,” she states.

Commonly allotted to counselors and pastoral care, Ellison reasserts the importance of doctors being trained to have these conversations. “I don’t believe the two are mutually exclusive,” she notes. “Doctors are the ones delivering diagnoses – in essence, being the first present in a potentially traumatic experience – and they need to be equipped in handling that situation. Additionally, doctors will likely be present throughout the entire treatment process, and this sensitivity must similarly be present.”

In the day-to-day operations of our over-stressed health care system, is there room for this perspective? “The current system does not allow for the time needed to spend with patients. This skill set really goes by the wayside,” Ellison notes. Also, in the coming decades of evidence-based medicine, will this type of training be valued? Ellison reemphasizes the importance of not narrowing medical interventions only to the realm of understanding more about potential therapies. “As someone who has tremendous respect for the role of science, I think it is also critical to look at the role of how emotions and mindset affect wellness. There is a need for future studies on the role of hope, so it will not be discounted in medical care.”

When asked what she would see as a learning outcome of this course for future doctors, Ellison states, “I would like them to view their sense of responsibility differently…to listen as much as speak, view themselves not only as health care providers but as health care partners, that what they say and do really matter.”

Music in Alzheimer's Care

2011-02-05T19:12:00.000-05:00

Claudia Glaser-Mussen, the sassy singer/accordionist of the Grammy- nominated children's rock band, Brady Rymer and The Little Band That Could, has a lot to say about her muse, “I can feel my mother's presence on stage, when I perform; she inspires me and I'm able to convey that energy to the audience.” A thread of music runs through Glaser-Mussen’s life: "I grew up in a home where music was a part of our experience,” she says. This thread never became so important for Glaser-Mussen as it did in the final stages of her mother’s life, when she was coping with Alzheimer’s disease. In this compelling WNYC radio interview, Opera Mom, Glaser-Mussen and her brother, violinist Matt Glaser share the role that music had in care of their mother, Jeanette Glaser-Taubin, a professional opera singer. “We saw that the music alleviated mom's psychic pain; it bought her joy.

Music was a way to bond, when she no longer recognized us,” said Glaser-Mussen. Matt and Claudia would play recordings of Mozart, Verdi and pieces such as the Marriage of Figaro. “Mom would pick up the soprano pieces; she was able to access those memories of performing.” Music therapy is now an evidence-based expressive arts intervention increasingly integrated in health care centers throughout the country in treating of a variety of medical conditions. The emphasis in music therapy is not on musical ability or mastery, but rather on engaging in the sensory experience of sound, performance, movement, instrumentation, or voice to affect the patient's well being.

Glaser-Mussen is a passionate advocate for musical intervention in medical care, "Everyone likes a song,” she says, "Find melodies, or lullabies that express feelings, hopes, or provide comfort; anyone can engage with music at any stage of life”. In the end of Glaser-Taubin's life, music eased the distress, providing the Glaser family a means to be present to one another. "Music was that wordless connection," says Glasser-Mussen. "We were able to tell her that we loved her, and give back her gift to us."

Bloch Cancer Hotline

2010-12-23T19:14:00.000-05:00

Last year, while working on a coping series for the American Brain Tumor Association, I learned of the Bloch Cancer Hotline in Kansas City, MO. The hotline was founded 30 years ago by Richard and Annette Bloch after Richard Bloch’s diagnosis of terminal lung cancer. Richard experienced many challenges in negotiating his cancer care. With a second opinion and perseverance, he survived for many years after his diagnosis. This personal experience inspired Richard and his wife to dedicate their life’s work to giving hope to cancer patients. Today, staffed with over 500 volunteers, this free hotline comprises a broad group of cancer survivors who are available to speak with and offer education to newly diagnosed cancer patients. What makes this hotline unique? Vangie Rich, director of foundation answers, “We take great effort to match the caller, after an intake, with a person who has the same diagnosis, so they can talk with someone in lay terms on what to expect”
In addition to this individualized resource, the hotline's support extends beyond emotional support; “We also guide the caller to build skills - how to build a connection with your doctor, understand your cancer, proposed treatment or side effects. We don’t give medical advice, but do help people to cope and know they are not alone,” says Rich. The Hotline also offers coping literature, and can direct patients to appropriate treatment resources around the country. Currently, the hotline receives calls from around the world. Their materials are also translated in Spanish. Rich notes the mission of the hotline remains steadfast, “Too many people equate cancer with death—we want to give the message of hope and survivorship.” If you are seeking support, or if you are survivor and would like to donate your time, contact the hotline at 1-800-433-0464.

Why We Cook

2010-12-13T12:52:00.000-05:00

“I want a brothy soup… I want an ocean in a bowl…something salty and spicy,” mused Chef Erica Wides in a recent episode on Manila clams on her radio show, Why We Cook, on Heritage Radio Network. Chef Wides is committed to her focused effort: to get her listeners to cook easily and enjoy it. “I try to cater my show to everyone, empowering listeners to make educated choices about food.”

Healthy eating as a tool for disease prevention and maintaining wellness is a frequent topic amongst many health initiatives nationally, but Wides spotlights an overlooked issue: “I don’t think people know how to cook. For people who grew up in homes where their family did not cook or relied on processed foods, they may not have developed an innate sense of cooking – the shopping and preparing, for example. We need to move away from frozen meals and diet cokes.”

A long time instructor at Institute for Culinary Education (ICE) in New York City, Chef Wides brings her cooking class sensibilities to her listeners. What are her steadfast tips? “Eating in season,” she says, “most people don’t know what’s in season. Google it. Get educated.”

Wides insists that cooking for one’s self is not solely dependent on inspiration. As a 24 -7 foodie, she says, “I do get tired of cooking, but I try to approach each meal as something important - and as a way to nourish and feed myself.”

A culinary generalist who is at ease in a variety of cuisines – Asian, American, Italian - Wides advises listeners to not shy away from cooking as simply as possible. “Let the ingredients stand for themselves, drizzle some olive oil on your favorite in-season vegetable.” She also adds, “Many vegetables commonly go under-explored; introduce celery root, artichokes, or turnips into your menus.”

Chef Wides, aka Chef Smartypants , a title anointed by one of her culinary students at ICE after an unsuccessful effort to stump her with questions about cooking, brings her diverse culinary knowledge to her weekly show—part cooking class, part food anthropology, Wides wants listeners to get interested in their food habits and to engage in the mainstream movement towards whole foods. “Get involved in learning where your food comes from. Visit and support your local farmer’s markets. If that’s not accessible to you, go to your local Whole Foods store or get familiar with your produce department.”

Why We Cook is a weekly date with Wides as a personal Chef Instructor. The topics for the show are educational – casting a brighter light on slimy, oily fish (anchovies, sardines, and mackerel) with prep techniques; at times quirky – black jelly beans other licorice-tinged foods such as fennel; and most of all informative – how to add more green to your breakfast routine.

Have an aching question about a recipe, cooking technique, or food trend? Tune into Chef Smartypants radio show weekly, Tuesdays at 6:30 EST. Send in a question on the comment section of Heritage Radio Network.com or on the Why We Cook Facebook page.

This post is the first in a series of interviews with Chefs on Healthful Eating.

We're Still Here!

2010-12-03T19:13:00.006-05:00

Each October, Post-Polio Health International hosts the We’re still here! campaign, to raise public awareness of both the successes and the current health needs of polio survivors. In the spring of 2009, I attended the New York premiere of The Polio Crusade, a PBS documentary directed by Sara Colt for the American Experience. If you are from that generation, the story of polio is not an unfamiliar one. The film catalogs the race for a cure and the public health campaign that resulted, inspired by Franklin. D Roosevelt. Watching the footage of the beginnings of polio history was compelling, but the film also highlighted what is less known to the wider public—the story of polio survivors estimated at 750,000 in the U.S. today.

The Polio community is diverse, ranging from persons who are ventilator users, to wheelchair users, and to those with mild limb impairments. Post Polio Syndrome (PPS), diagnosed in 25-50% of persons with original poliomyelitis, was first recognized by the medical community in the 1980’s. It is a new medical condition affecting polio survivors later in life causing muscle weakness, fatigue or mobility changes. “The aim of the campaign is to invigorate the post-polio community worldwide,” says Joan Headley, Executive Director of Post Polio Health International (PHI). Grassroots Post-Polio initiatives now exist throughout the world in regions such as Canada, Europe, and Asia. Headley explains that access to adaptive devices, health care, or work-life accommodations varies widely. “Our mission is to empower people with disabilities. We seek to provide the education and tools to support our readers to be involved with life to the best of their ability,” adds Headley. Another aim of this yearly campaign is to educate health care practitioners on the latest in PPS treatment options. For this purpose, PHI publishes quarterly newsletters for the PPS community and International Ventilator Users network, offering readers expert multi-disciplinary advice on topics such as what’s new in assistive technology to physical therapy recommendations. PHI sponsors an “Ask Dr. Maynard” column. Dr. Maynard, a physiatrist and recognized PPS expert, answers questions on various aspects of polio care. PHI also supports research efforts; for instance, a handful of current studies examine the immune response of PPS patients. “The polio community has also been thinking about disability and aging for quite some time now,” says Headley, “this research area also applies to the broader disability community as well.”

Speaking with Joan Headley is always an energizing experience. I remember first meeting her at a Post Polio conference sponsored by the Polio Network of New Jersey. With the assistance of a modest staff and an experienced panel of board members, Headley’s leadership has shaped PHI into the vital resource it is today. I am awed by her efforts, especially in today’s climate of struggling non-profit organizations. For 23 years and counting, her dedication to the causes of PHI has helped countless polio survivors and their families living with PPS towards health and wellness.

Living Sensationally: Understanding Your Senses

2010-12-03T19:13:00.005-05:00

Are you a sensation seeker, or do you prefer a low key evening with quiet music playing in the background? Decoding our sensory style is the subject of a fascinating book, Living Sensationally: Understanding Your Senses, by Dr. Winnie Dunn, Chair and Professor of Occupational Therapy at University of Kansas Medical Center. Dunn's research on sensory processing disorders indicates that people fall into four categories of sensory styles: seekers, sensors, by-standers, and avoiders. In a recent conversation, I spoke with Dr. Dunn about the broad applications of her work.

“People with sensory processing disorders may be more sensitive to sensory input, but we are all wired to have idiosyncratic reactions to sensory experiences - sound, touch, taste or smell,” notes Dunn. In families, finding creative ways to respond to such needs of children can alleviate unneeded emotional suffering. Dunn provides the following example, “At a family gathering, a child with autism may want some time away from the group due to over-stimulation of social energy, guests present can understand this as a sensory need versus another thing wrong with the child," she advises. “Actually, these sensitivities are recognizable in all of us, but along a spectrum,” says Dunn. There are countless ways to apply sensory principles, notes Dunn. “Where we sit at the movies, where you park, at what time of the day you shop, or establishing a cue system with children at social settings to manage stress," she adds. Dunn also hopes that sensory concepts can be applied to the way we self manage. In her book she includes a “Sensory Patterns Questionnaire” and an also identifies the needs of each personality type. “A sensation seeker may enjoy getting a series of errands done in a day, while a sensor would do better pacing the same set of errands,” Dunn explains.

Application to interpersonal or romantic relationships is the most fascinating area in which this framework is gaining interest, “When I speak to audiences around the country, what I hear most often from people is that this model helps improve their relationship with intimate partners,” says Dunn. "Living with a partner requires negotiation of food, space, activities, and interactions. One partner may enjoy making a home cooked meal, while the other partner may enjoy the simulation of a bustling restaurant,” she explains. “The function of these concepts is practical, to understand yourself and others and take the judgment out of it,” she adds. Dr. Dunn’s work has limitless applications for improving each family’s quality of life with tangible solutions to problems related to sensory needs.

Gallery U

2010-12-03T19:13:00.002-05:00

On any given day, Robert Greco, Director and Curator of Gallery U —an artspace located in Montclair, NJ—is evaluating art submissions from around the world. “I have a sense of what kind of art our audience would like,” says Greco. Gallery U is a modest artspace with broad purpose: to cut across boundaries of ability and disability, showcasing original, contemporary artwork at affordable prices. This vision is alive on a multitude of levels. Gallery U and its sister venue, the U Consignment Boutique, have been created by Universal Institute, a rehabilitation facility for people with TBI and Neurological Impairments. The Institute takes a unique approach to recovery, synthesizing vocational training with the arts. All aspects of the gallery, from the daily upkeep, to maintaining media content, to interacting with artists, are coordinated by members of Universal Institute, also survivors of traumatic brain injury. Gallery U presents artwork by people with disabilites as well as emerging artists in a variety of media including paintings, photography, and mixed media pieces. Price ranges vary from $100- 500. “We’re about accessibility,” explains Greco, and what results is a distinctive arts community constantly evolving in their mission. If you are interested in visiting, Gallery U is located at 179 Glenridge Avenue, Montclair, NJ 07043. Phone: 973-707-7159

The Feldenkrais Method

2010-12-03T19:11:00.001-05:00

Exploring better ways to move, exercise or sustain physical resilience with mobility challenges is a constant source of interest for me. I recently discovered the Feldenkrais Method, with the help of Stacy Barrows, PT, GCFT, CPI, a physical therapist, Pilate’s instructor, and passionate practitioner of the approach. We explored some of the benefits for persons with disabilities. The main distinction of this form of movement therapy is the engineering viewpoint to understanding the body, “How do all the parts of the body work together, less of a cause and effect mindset,” Barrow notes.

The exploratory nature of this method is one unique feature. “I find that patients lose an internal sense of their bodies. If you can visualize a baby experimenting and exploring movement in an organic way, that's the spirit of Feldenkrais," says Barrows. The goal is to re-discover movement that eliminates unnecessary energy expenditure and increases efficiency. “I've worked with many patients who have given up or reached a plateau in their range of motion. Exercises such as the pelvic clock renews a patient’s center of gravity and establishes a new feedback system,” notes Barrows. Research on Feldenkrias is emerging, but is now widely utilized for a variety of medical conditions ranging from cancer to athletic injuries to chronic pain. In her own research, Barrows notes that patients have reported pain reduction, sleep improvement, and a sense of renewal. Her sessions include a hands- on or hands- off approach. “The hands are more for listening," says Barrow. “We get on the floor, practice some puzzles, and come up with new tools the client can use to take care of themselves."

The hands-off aspects are implemented in classes, where a practitioner leads attendees are led through a series of gentle micro-movements done either sitting, standing, or lying down. “This work is not about reversing pathology, but about optimizing function”. We discover more than one way of moving, and the patient then decides what works for them; Feldenkrais can enhance traditional approaches to recovery and rehabilitation.” says Barrows.

A Healthful Thanksgiving

2010-11-09T21:34:00.000-05:00

Thanksgiving is fast approaching. If you are like most American families, you are scurrying about this month, gathering ingredients for time-tested, memorable family meals. But the Thanksgiving menu can be tricky when planning for family members who have specific dietary needs. What are the health needs in your family? An uncle who is managing his weight? A cousin who is a vegan? A son who avoids refined sugars? Loved ones with health concerns such as food allergies or gluten sensitivity? Harnessing the wisdom of healthful eating can satisfy everyone at the table. “Healthful eating is an acquired skill” says Katherine Tallmadge, M.A., R.D, spokesperson for the American Dietetic Association.

“Most people have the knowledge, but they are disorganized about their eating, and it is easy to get out of the habit of taking care of oneself.” Healthful eating does not mean meals can’t be flavorful — it’s about paying attention to ingredients, to how food is prepared, and to experimentation. “Discovering new recipes is the key,” says Tallmadge, “familiar dishes can be prepared in delicious and satisfying ways without the added calories or fat.” Start small. It could be as simple as adding one new dish to the menu. How about Asian turkey meatballs with lime sesame dipping sauce — low in calories but high in taste — or experimenting with new spices or herbs? Root vegetables, are another easy way to bring in fresh flavors. Or how about trying a new cooking technique, such as roasting acorn squash with brown sugar? Or making gluten-free pumpkin pie? “Maximize vegetables and fruits,” says Tallmadge, noting, “When you make healthy dishes, you will have healthy leftovers for days.”

Most importantly, Thanksgiving is a season of taking stock emotionally of what satisfies us beyond food, to be thankful for health gains, insights, or victories we may have acquired this year. Giving back generates a cycle of thankfulness, so consider starting a new tradition in your community — enjoying your meal, and donating one as well. Here are links to U.S. food charities that accept food and monetary donations during the holiday season and throughout the year.

City Harvest
Feeding America
Food Bank of New York City
Food Research and Action Center
Meals on Wheels
No Kid Hungry
Salvation Army

Adaptive Yoga

2010-11-03T19:11:00.001-04:00

Yoga has gained significant popularity, with classes held in small towns and big cities throughout the U.S. What may not be as widely known is the practice of adaptive yoga; yoga that is gentler, less rigorous in its poses, and modified by utilizing a chair or assistance from another person. A year ago, I interviewed Matthew Sanford of Mind-Body solutions center. Matthew is a pioneer in teaching yoga to persons with disabilities. In Matthew's own life, yoga was a means to establishing a mind-body connection. Matthew passionately believes that yoga can be adapted to many levels of limitation. If you've never tried yoga, find an instructor who has experience with restorative/adaptive yoga methods. Start with one or two restorative poses that you can count on a few times a week for stress relief, and then build on that. Here is one example of a restorative pose, taught by Rodney Yee.

The Paralympic Movement

2010-11-02T08:56:00.009-04:00

My interest in Paralympic sports was sparked after viewing Murderball, a gripping documentary on the fierce athleticism of wheelchair rugby competitors. Earlier this summer, I spoke with Charlie Huebner, Chief of Paralympics, U.S. Olympic Center based in Colorado, about the Paralympics movement in the U.S. Still in its infancy, the Paralympic movement has grown exponentially both in the diversity of sports venues and in the broad ranging disabilities of its athletes.

The Paralympic games take place on the international stage every four years alongside the Olympic games, but disparities in funding exist. “Paralympians have the same struggles and challenges as Olympic athletes,” says Heubner. How can communities get involved in supporting U.S Paralympics? To directly support an athlete or team, the donation of funds can go toward coaching, travel, or training. To promote athletics on a community level, the U.S. Paralympics sponsor sports clubs, which are designed to engage youth with disabilities in physical activity. Currently, U.S. Paralympics is partnering community organizations across the U.S. to establish 250 sports clubs by 2012. Better yet, the London 2012 Paralympic games are less than two years away—no need to wait to take an interest. The U.S. Paralympic website is packed with news on each sport, progress of individual athletes, and up-to-date news on qualifying competitions en route to 2012. A look back to the 2008 NYT coverage of the Paralympic games offers a glimpse into the distinctive stories of athletes who competed, particularly the military servicemen and women who entered Paralympic sport through their rehabilitation. A recurrent theme came up in my conversation with Huebner, who asserted, “We see the healing power of sport every day."

Functional Nutrition

2010-10-10T21:56:00.001-04:00

Eating well for your specific health needs is a lifelong effort. To learn more about the latest nutritional trends for persons with chronic health conditions, I consulted recently with Kathy Fulgione, R.D. on the field of Functional Nutrition, a sub-field of Functional Medicine which, emphasizes prevention versus disease management. It's a prescriptive approach, evaluating on a cellular level, through lab results, what's going on in the metabolism of each person, bringing them back into balance.

"The point is to consider food as medicine to enhance and promote health and well-being," says Fulgione. "Some patients may need more protein if they have a muscle wasting condition, other patients may need certain supplements - vitamin D or B 12, for example," says Fulgione. A Functional Nutrition approach also emphasizes eating whole foods versus processed foods. "Eating food closest to their natural state has a lot more nutritional value" says Fulgione. An advocate for early nutritional intervention, Fulgione adds, "Nutritional needs can be overlooked in routine medical visits; checking in with your nutritional habits makes sense for everyone, not only to support for an underlying medical condition, but also for disease prevention down the road."

Kids, Exercise, and Emotional Resilience

2010-09-06T17:59:00.006-04:00

At the White House childhood obesity summit held last April, First Lady Michele Obama launched the Let's Move campaign to inspire healthier environments in schools and communities and to teach kids the vital skills of wellness - exercise and healthy eating. I recently spoke with Gregory Chertock, sports psychologist, fitness trainer, and baseball coach specializing in elementary and middle school youth, on how exercise/sports impact the development of children."Exercise training can teach kids powerful life skills that go beyond excelling in a sport," says Chertok.

Sports training – either structured exercise or an actual sport can nurture invaluable mental skills: the ability to self- monitor, relax in response to performance anxiety, or learn how to respond to failure. Chertok notes that nationally, 50 to 70 percent of kids drop out of sports by middle school due to not being able to live up to parent or coach expectations. “The best evaluation of success in exercise/sports is the happiness scale, not the performance scale," says Chertok. In his work with exercise programs for children struggling with obesity, Chertok again notes the skill benefits, “Yes, kids learn how to eat healthy and exercise, but they also learn how to set goals, de-stress and how to gain support from a group.” Weight management and health are critical goal points, but at a time of development where kids’ minds and bodies are changing rapidly, exercise and sports training can offer the intangible gain of emotional resilience, a lasting benefit which can be transferred to social and academic realms of life.

NextStep Fitness

2010-09-06T15:44:00.000-04:00

Janne Kouri, President and Founder of NextStep Fitness, a state-of-the-art specialized gym facility in Lawndale, California, is an advocate with a focused dream: “…to expand NextStep Fitness in communities of need throughout the U.S., so people living with paralysis or disability would have access to community-based fitness options. This is a nationwide problem, and it needs to be addressed,” he says.

This mission is inspired by Kouri’s own journey. In 2006, while playing beach volleyball with friends, Kouri took a break and dove into the water to cool off; he hit his head on a sandbar and was instantly paralyzed from the neck down. He then began a challenging rehabilitation for his spinal cord injury at Fraizer Rehab Institute in Louisville, Kentucky. His background as an avid exerciser and former college football athlete at Georgetown University equipped him with a unique sensibility for tackling the demands of his recovery.

“Coming from an athletic background, I was used to working out—used to pushing—and had the mental capacity for it,” he says. Most people, Kouri notes, need support to find that mind-body connection. “Each person has to make a decision: Do I dedicate myself to re-learning my body? Or do I give up? You have to find that inner strength, find a way to stay active and improve your situation. For people with disabilities, they need the accessible facilities to make that happen,” he adds.

During Kouri’s twelve-month intensive rehabilitation, he received Locomotor Training, a cutting-edge rehab intervention based on emerging neuroscience research for spinal cord injury (SCI). Kouri describes sessions in which he was set up in a suspended parachute-like harness over a treadmill, and then, with the assistance of therapists, he was guided to map out the pattern of walking. “Locomotor Training is not only about re-learning how to walk, as for some people it may give that result but not for others,” he says. “It has so many benefits outside of walking – improving circulation, improving bone density, reaping the benefits of being weight-bearing and upright on your feet.”

When planning for life post-rehab, Kouri wanted to continue Locomotor Training closer to home, but found no disability-accessible gym facilities or Locomotor Training on a community level in his hometown. He became concerned about post- recovery issues – living and staying well with SCI. Contending with this resource gap, Kouri and his wife armed with determination, and support from the Christopher and Dana Reeve NeuroRecovery Network (NRN), founded NextStep Fitness.

NextStep Fitness is now a non-profit exercise facility servicing a diverse clientele. Sixty percent of their members have SCI. Other members have neurological medical conditions such as cerebral palsy, traumatic brain injury, and stroke. They also make use of the broad ranging adaptive exercise resources at the center.

The center’s motto “The next challenge… a lifetime of wellness” captures the spirit of their advocacy efforts. Kouri asserts, “ People don’t understand that for persons with SCI, not walking is only one minor issue as compared to the other health issues one has to deal with – staying fit, maintaining a healthy weight, regulating your body temperature, or coping with pressure sores. SCI constantly requires you to learn what your body needs—and it can be changing every day,” he says.

NextStep Fitness takes efforts to make the center accessible in additional ways. Memberships start at a modest $50 a month. Members can also choose the type of membership they need based on their health goals.

Kouri also noted benefit of such a center in promoting community wellness. “There are physical benefits of having an accessible facility for our members, but, more importantly, we see mental benefits; our clients have somewhere to go where others truly understand what they are going through and what their bodies need. Also, we have become a resource to many of the family members of our participants. We take efforts to keep things light; our clients do get their exercise in, but it’s also an uplifting experience to be a part of such a community,” says Kouri.

Having access to Locomotor Training has aided Kouri in continuing to make gains in his own recovery far beyond his inpatient rehab days. His tireless three-year commitment to Locomotor Training has recently led him to take his first steps with a walker. Kouri is passionate about creating such health-enhancing fitness opportunities for others. “You should not have to move across the country or state to have a healthy life,” says Kouri. “Able-bodied people can go to their local gym to stay fit and reach for new health and wellness goals. We want the same options for people with disabilities.”

When asked about his next exercise goal, Kouri answers, “Locomotor Training is a central part of my plan, but I am looking forward to trying adaptive skiing this March.”

To sponsor a NextStep Fitness initiative in your area, contact Janne Kouri -
jannek@nextstepfitness.org

Profile: Deshae Lott, PhD

2010-08-03T19:12:00.000-04:00

How people cope and subsequently learn to live well in the the midst of a progressive medical condition is a central theme in my health advocacy writing. Later this year, I will be interviewing Deshae Lott, PhD, a prolific writer and health care advocate. She has written widely on subjects related to ventilator dependent living, spirituality, and health care access for persons with disabilities. In the following essay, "No Way Out But In: Responding to Chaos Positively with Forgiveness and Grief", Deshae walks the reader through the challenges of a week in her life of living with Limb Girdle Muscular Dystrophy. In this piece, Deshae shares her own acquired model of coping, “Whether much is going awry or right, I restore my inner serenity and well-being each day by using prayer and meditation, and processing grief and forgiving. No day seems to pass without my using these mental resources,” she states. Her mission is to offer encouragement to those who struggle with the emotional stresses of complex health concerns.