A Celebratory End to Our Stroke Series

Robin Strongin

Last night I had the pleasure of attending the Stroke Comeback Center’s 10th Anniversary Gala and presenting John Phillips with his Disruptive Man of the Month t-shirt. Attending the Gala and seeing all the work done on behalf of and by stroke survivors was inspiring.

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Photo credit:Rick Martin Photography. www.rickmartin.com

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October Man of the Month: John D. Phillips, Ph.D.

John-Phillips-SCC-1As part of our celebration of World Stroke Day (October 29) we are pleased to announce that John D. Phillips, Ph.D. is Disruptive Women in Health Care’s October Man of the Month. John, co-founder of the Stroke Comeback Center, is a visionary who saw an unmet need, and helped to create an innovative solution.

John was one of those well-connected Washington insiders, who had served as a deputy commissioner for higher education in the Ford Administration, then served as founding president of the National Association of Independent Colleges and Universities, and then ran an executive search practice specializing in recruiting college presidents. Then, his hectic workaholic lifestyle came to a sudden halt when he suffered a stroke. During his recovery, he noticed and felt some very large gaps in resources needed for recovery, particularly for people whose stroke had caused communication difficulties.  Working with his speech therapists and others, he co-founded the non-profit Stroke Comeback Center, which is celebrating its 10th anniversary this year.

Question:  John, tell us a little about your stroke.

Answer:  Most people who are attacked by stroke suffer the more common blockade stroke — where a clot or constriction in the blood vessel prevents oxygen from getting to the brain, and rapidly kills brain cells until the obstruction is removed. (more…)

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Women’s Guidelines for the Prevention of Stroke

Leonard Anne_suit

I am a Science and Medicine advisor for the American Heart Association/American Stroke Association (AHA/ASA). I assisted the Stroke Council in the development of Stroke Guidelines rising from the Stroke Council.  The AHA/ASA develops evidence based guidelines to aid healthcare providers in making decisions on best care practices solidly based on what science we have now.  The AHA/ASA felt it important to define prevention guidelines specifically focused to women and stroke.  These Guidelines were published in the spring of 2014, and the interest in these guidelines has been amazing!  The AHA/ASA Stroke Guidelines are developed by our esteemed group of stroke experts.  These experts are leaders in the field of stroke science.  The AHA/ASA Stroke Council updates these guidelines about every 3-5 years or as we acquire new science that would impact and potentially change the guidelines and care of women in the US.  The AHA/ASA is deeply committed to making sure that the community had what we feel are best prevention practices for the community.

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An Innovative Approach to Stroke & Aphasia Recovery: Part 2, Groups

brookeHOne day long ago I found myself dancercising in the basement of a bingo hall.  This was, to make a gross understatement, way out of my newly single comfort zone. I was awkward at best and going the wrong way at worst, but I was in a group with 200 others trying to do the same thing. I went back, and found a community of people I had little in common with other than this shared experience. I worked harder because I saw them working harder. Soon I knew a few routines and was offering encouragement to newcomers. I was getting more confident; healthier.   You probably have a similar story – a group you didn’t expect to join but pushed you to be better.

Groups are powerful things – little organisms that wiggle and struggle, contract and expand, create and adapt. Those who need a hand get one; those who can lend a hand offer it. (more…)

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An Innovative Approach to Stroke & Aphasia Recovery: Part 1, Life Participation

dswprophotoA1Here’s the scenario:  A 51 year-old woman is having the worst headache she has ever experienced.  Let’s call her Linda.  She is concerned and decides to lie down to see if it subsides.  Alone in the bedroom, she experiences a stroke.  She is conscious but cannot move her right side and cannot call out for help.  Her husband, let’s call him Jim, finds her, recognizes that something is terribly wrong and calls 9-1-1.

She is taken to the local hospital; the immediate question posed in the emergency room, “What time did symptoms occur?”  Jim does not know and Linda cannot answer.  She has been diagnosed as having had a CVA (cerebral vascular accident) or stroke.  An MRI reveals that a clot has traveled to the left side of her brain, but she was not given the clot busting drug treatment because there is a 4 hour window and the time of her stroke is not known.  Linda is stabilized and transferred to the neurological unit.  (more…)

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My Personal Stroke Story

IMG_0794I first shared my story in 2008 as the Passion Speaker for the American Heart Association at the Go Red for Women Luncheon in San Antonio, Texas. And I told my story many times in the next few years to the various corporate partners and in private homes where both men and women had gathered to learn about women’s risk for stroke.

Today, more than 16 years after having a stroke, I continue to tell my story with others as a You’re the Cure advocate in Washington DC. I presented at the Maryland Million Hearts Symposium and on Washington DC’s CBS TV station WUSA9 last winter. You can watch my interview with WUSA9 here.

I am proud to be an Inaugural Member of the Circle of Red for the Greater Washington DC Circle of Red in 2014. (more…)

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Introduction to Special Series on Stroke: World Stroke Day, Women & Stroke, and the Stroke Comeback Center

Stephanie Mensh

Today, Disruptive Women in Health Care begins a special week-long series to raise awareness of stroke in recognition of World Stroke Day, providing opinion and actionable information, and joining in the celebration of 10 successful years of the Stroke Comeback Center in Vienna, VA.

October 29, 2014 is World Stroke Day and the launch of a 2-year, world-wide campaign, I am woman: Stroke affects me, sponsored by the World Stroke Organization (WSO) and supported by national organizations like the American Stroke Association (ASA).  Women have a higher risk of stroke than men, a higher mortality rate from stroke than men, have worse outcomes from stroke than men, and often receive less care than men, despite responding equally well to care, according to the WSO.  Women are the predominant caregivers, often resulting in health issues that then may increase their own risk of stroke.

Each year, 15 million people worldwide suffer a stroke. In the U.S., about 790,000 Americans suffer a new or recurrent stroke. Stroke is the 4th leading cause of death, and a leading cause of disability.  The ASA estimated that Americans will pay about $73.7 billion in 2010 for stroke-related medical costs and disability. (more…)

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Passport Stamped for the Land of Pain: Learning to Live in a Foreign Land

Janice Lynch Schuster

The following post originally ran on the Pain Action Alliance to Implement a National Strategy’s (PAINS) website.

For many years, my passport was stamped in the land of the well, but a poor response to oral surgery in 2013 cancelled that document, leaving me in the land of the sick, the suffering, the other. While I was a well-one, I’d hear stories from that other country—and listen as best I could when others told tales of their visits– but I did not know what it truly meant to live there all the time.

Learning to live in another country is hard work. There are unfamiliar customs to understand, a language to learn, awkward situations, foods and beds and places that do not quite feel like home. The currency may not convert.

Once you become a chronic pain patient, as I have, you discover how much of your life is no longer your own. (more…)

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Preventing Prescription Drug Abuse: Are You Doing Your Part?

Terri Prof Headshot 0412Do you know what your teen is up to when you’re not looking?  What about your spouse, your parents and your friends?  Hopefully they aren’t rummaging through your medicine cabinet to find something they can take to get high. Many of us would never think to use a prescription drug for something other than its intended purpose, or to take something that wasn’t prescribed for us and absolutely necessary.

Unfortunately, there are a lot of other people who not only consider this, but act on the impulse to misuse and abuse prescription drugs.  Sometimes they work the system and see a doctor, or multiple doctors, and get the prescription for themselves, but often, they are looking through your medicine cabinet when you’re in the other room, getting them for free from friends or buying them online or from dealers.

Prescription drug abuse is a growing problem; according to the Centers for Disease Control it is an epidemic.  Just like any addiction, it can ultimately ruin or even end someone’s life.  (more…)

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Consumer Centricity: Changing what we know about Health Care

Cyndy Nayer

Consumer Centricity is about to change everything we know about health care. It is creating a health investment community where transparency is king and social exchange reinforces value.

This is the rise of the consumer health investment marketplace. Technology is improving the conversations and exchange of data—social media (providing peer-to-peer information and counseling), quantifying technology (providing measures of health to the person without the need for clinical reporting), and financial advice (tune in to some of the social media pages for patient and cost advocacy). We are witnessing the handoff of health care control to the consumer who does, in fact, have a bigger financial stake than ever before, but who also can leverage data for answers to personal questions and priorities.

At last the consumer is developing a voice in health care, identifying the priorities of lifelong health that he or she values. There are 4 reasons that consumers are building noise on their preference in health care:

  1. Enormous increases in consumer-driven health plans with high deductibles. (more…)


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Breast Cancer Prevention: My “Mommy Musts”

Amber Coleman-MortleyI spend a large portion of my time caring for, looking after, and maintaining the health and wellbeing of others.  Amidst all of the scheduling of my work life and the kids’ respective social lives, the hours of my day quickly evaporate into vague memories of daily routine. Not once do I stop and think about myself, my health and often my own needs.  And why should I?  Like all “good” mothers, my needs come second to theirs.

Recently, my child randomly said to me, “Mom I can’t imagine our life without you”. That gave me pause.  I thought about it and felt the same. Who would do the cooking, the cleaning and all the neurotic yelling about clothes and toys on the floor? That sentence made me think of my mortality in a deeper way. To these little people, I mean something.  Do I respect that?

This moment took me back to when my own mother informed me (a young adult at the time) that she had found a lump and was going in to get it checked.  (more…)

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The Art of Survivoring

janeblackA week from today I will be the keynote presenter at the “Ladies Night Out – Give Cancer the Boot” annual gala for the Springfield Regional Cancer Center (SRCC).  I am flattered and daunted by this opportunity to share my thoughts with an audience of 400 patients, survivors and their champions.  The date of the event falls on the 6th anniversary of my mastectomy – how fortunate I am to celebrate with kindred spirits!

I will open with this claim:  The richest and most profound experiences happen when what we believe to be real and true about ourselves is turned upside down.  (If you’ve seen Brene Brown’s TED talks you know that this is a precious part of the transition process.)

Then I will chime in about my driving force – to attract and to radiate positive energy.  Period.  This is my metric for success. (more…)

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How Social Media Helped Me Through My Breast Cancer Treatment

MandiDisruptive Women previously ran this post in November 2013, but given its message felt it was worth running again during our breast cancer awareness series.

Social media opened a world of connections for me when I was a patient undergoing breast cancer treatment. It became a mechanism where I could reach out to say “hi,” to console, or just to yell out into the world when I was angry.

I actually started blogging about my breast cancer treatment because my aunt kept a blog through the course of her treatment (she was usually a few months behind on updating, so I vowed to be a little timelier when it came to writing posts). It was a great method for updating my really large extended family and I found that writing things down that were emotional for me, helped me process the emotions. (more…)

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We Are All Survivors, If Only for a While

Janice Lynch Schuster

Those of us still lucky enough to call this Earth home have all survived something that 50 or 100 years ago would have killed us: childbirth, for instance, or workplace accidents, infections and diseases. And most of us have survived any number of challenges and losses: deaths, illnesses, jobs, loves. Many of the relationships and activities that we love do, at some time, come to an end. Some of us will survive because we have endured great harm and abuse.

When we see and name ourselves as survivors, we feel that we are somehow still masters—that challenges formed us, but did not claim or shape us. Survivorship reflects our most admirable qualities: strengths and resilience, resourcefulness and ability to stand and stay strong.

Every October, while we celebrate another month of raising awareness of breast cancer (as pink festoons everything from pickle jars to football gloves, until we yearn to shrug it off or dye it black) we rejoice with those who have endured this disease and emerged, still standing and alive. (more…)

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Finding My Purpose through My Wife’s Breast Cancer

samIn the spring of 2000 Susan, my wife then of 33 years (now of 48), was diagnosed with breast cancer.  It all started with her annual check-up and her internist saying she felt something “funny” in Susan’s right breast.  She suggested Susan see a breast surgeon.

While I was surprised, I wasn’t alarmed.  It was going to be Susan’s fourth breast biopsy.  Unlike the three previous ones, this one was done as an out-patient procedure in one of the then relatively new surgical centers now found in shopping centers everywhere.  No frozen section this time, just wait to hear what the surgeon found.

He literally skipped into the recovery room to tell us that “it was just scar tissue from the old biopsy site.”  While we still needed to get a lab report, there was no tumor and we shouldn’t worry because it was just old scar tissue, he was “sure of it.”   The call came three days later that the surgeon wanted to meet with Susan and me as soon as possible. (more…)

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