6 Reality Checks: The Bootless Have No Bootstraps

barefeet2

“…it is a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps.” –ML King Jr

I don’t know why I’m surprised with comments that prove many people don’t know how to walk in someone else’s shoes. After sharing about the problem of paying for long term care for adults with severe autism on Twitter–

“Paying for LTC 4 adult children w/autism requires a Medicaid waiver. Many states have enormously long wait lists”

someone (in a series of tweets) tweeted this.

“That’s ridiculous. Parents were good enough before18 but not after???? And aren’t parents responsible even after…” [second tweet] “Wouldn’t it be our job to make sure they were taken care of??? Same as if they were minors?” [third tweet] “Parents adjust financially as they need to. We always have.” [fourth tweet] “& we haven’t had to deal with the what if…..only the which one.”

Reality Check #1

So let’s do a reality check here. First, many people with severe autism cannot communicate at all. Second, some people with severe autism wear diapers and must be changed as adults. Third, most people with severe autism cannot work. Fourth,

“Parents don’t live forever & that is the sad fact. The situation 4 some families is dire.” [second tweet] “What do parents do if they are poor? What do they do if no one will take them (the adult children)?”

Reality Check #2

I also directed the person to a post I wrote after doing research for a client on what is available for people with severe autism. The reality is this. It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person. If that isn’t scary, just read on.

Reality Check #3

reality-check200x192Locating residential homes that are specifically for autism is challenging. One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, or NARPAA. It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.” There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Enter Dr. Ruth Sullivan

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan. She is a world renowned authority on autism, having founded the National Autism Society as well as founding and directing the Autism Services Center. She also wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA). This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities. This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this. Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers ends upon graduation from high school. Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Reality Check #4

Even though IDEA mandates services during school, many parents have to fight for those services. Exhausted from this effort, they often are not prepared for the transition from high school. It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism. Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Reality Check #5

There is a significant shortage of residential services for autism in the United States. In fact, even staff at some residential centers for autism do not have to have the kind of specialized training required by public schools for special education teachers working with children with autism.

Many of those who need residential care end up in group homes and centers that are not specific to autism. Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis), most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism. Unfortunately, these behaviors are likely to be dealt with in a punitive manner, which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered. For example, lifelong provision of services is a key difference among facilities. When first reviewing organizations, it was troubling to discover that some facilities require clients to work. If they are too old or unable to work, they are not allowed to stay on in the community.

Reality Check #6

Talking to several of the directors of these residential programs was eye opening. The only real source of funds for autism is Medicaid and that is only through a limited program called the Home and Community-Based (HCB) Residential Waiver. Having Medicaid doesn’t automatically mean you have the Waiver. The Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement.

Thirty-five states require insurance companies to provide some coverage of critical autism therapies for both children and adults. Twenty-three of these states require coverage of autism treatment costs the other twelve require limited support.

Conclusions

“Before you act, listen.
Before you react, think…
Before you criticize, wait…
Before you quit, try.” –William Arthur Ward

It’s time to stop knee-jerk reactions to Government spending on those who are poor or defenseless.

Very few parents in the US can afford between $75,000 to $200,000 per year to care for autistic children and adults.

First posted on LinkedIn

Children and adults with severe autism are people. Their parents do not live forever. Leaving them to live or die on the streets is cruelty beyond measure.

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From Bewitchment to Genetics: Cystic Fibrosis and Emily’s Entourage

“If it tastes salty when someone is kissed on the brow, then this person is hexed” (bewitched).”

“The child will soon die whose brow tastes salty when kissed.”

Cystic Fibrosis and Emily’s Entourage

Bewitched children…with salty skin died.   For centuries, children with Cystic Fibrosis lived short, terrible lives.  It took until 1954 for something to change. On learning the devastating news that their son and daughter, Lee and Kathy, had cystic fibrosis, two parents, Milton and Evelyn Graub, decided to do something.  Perhaps empowered because he was a physician, they found other parents, held their first fundraiser and in 1955, and founded what is now the Cystic Fibrosis Foundation (CFF).

Because of the research funded by CFF, the life expectancy of people with cystic fibrosis is now 40 years.

A 29-year-old Powerhouse

Emily Kramer300Enter Emily Kramer-Golinkoff, a 29 year old powerhouse who is determined to transform cystic fibrosis (CF) from a disease people die from to one that people live with.

Since birth she has been the focus of teams of health care providers because, as she states, “CF is an intrinsically entwined part of every single second, every single breath [of my life]…My health is part of every moment:  and care is what allows me to engage meaningfully and productively in all of this, my life.”

Social Connection Heals

Her journey with the healthcare system hasn’t always been easy.  For eight years her medical team ignored her life and her feelings with the result that it
disengaged me from my healthcare team and …made me emotionally distance myself from CF.  My goal was to minimize CF in my life and that is a dangerous goal for something that is intrinsically entwined in every fiber of your body.”

Her life changed when she moved to an adult CF treatment team.  This medical team listened and worked with her, integrating her care with her life. “I’m very fortunate to have a healthcare team that respects me, encourages my active participation in care and treats me holistically.”  But she is firm in the belief that luck should have nothing to do with receiving this type of care.  “I’m not okay relying on luck to find collaborative healthcare providers. Everyone deserves to be heard, valued, empowered in healthcare. I’m using my story to advocate for the enormous benefits of collaborative, socially connected care and participatory medicine.”

Social connection is crucial to health and healthcare, Emily maintains.  A little known fact about <a href="http://hchlitss.net/2014/06/20/transcript-chat-emily-emilykgkramer-golinkoff-cystic-fibrosis-research/”>CF is that people with CF cannot be together.  Those with CF produce mucus in the lungs.  That mucus holds onto infectious agents.  This is not a problem for the general population but it is a big problem for those with CF.  “Support is vital for dealing with chronic, fatal diseases. It’s really tough when your fellow disease compatriots are your biggest threats from a cross infectious standpoint. “  People with CF can pass on infections to each other with catastrophic and fatal consequences.  Social media has brought her together with other people who have CF.   She “stumbled upon an online CF community about 5 years ago and it changed my life. For the first time I realized other people were dealing with the same things.  Online community is my only safe lifeline [to other people with CF]. The online CF community provides invaluable information and support. “

And her medical team values her social media community–“My doctor now asks ME about creative treatment options I’ve heard of through the online CF community.”

Knowing Genetics

Protein_CFTR_PDB_1xmi250CF is the result of a gene mutation on the 7th chromosome that is responsible for producing CFTR.  CFTR is a protein involved in the transport of sodium and chloride or salt.  Changes in it effect systems in the body that produce fluids, like the digestive and the respiratory tract.  In 90% of people with CF, the pancreas degenerates and is replaced by fibrous cysts.  The lungs accumulate thick mucus, and bacterial infections eventually destroy the lungs.

Emily has advanced-stage CF and CF-related diabetes. Advanced stage CF refers to the degree of permanent lung damage that has occurred.

Although the Cystic Fibrosis Foundation has done outstanding work in moving the life expectancy of people with CF from age 2 to 40, “they are focused on the masses, the nearly 90% of patients that have the same mutation called df508.”  Unfortunately Emily’s mutation is different.  Though CFF does fund research for rarer mutations, the “majority of emilysentourage250their efforts are appropriately on the most common CF mutations.”  This is why Emily, her family, and friends have established their own nonprofit, called Emily’s Entourage.  “With Emily’s Entourage, I’m using my voice to try to direct research attention to rare CF mutations.”

In 2 ½ years, Emily’s Entourage has raise over $650, 000. “Those funds go towards accelerating research with a focus on rare CF mutations.  Currently we’re funding trailblazing work at UCSF that is focused on my rare mutation. We’ve been very fortunate to have wonderful researchers helping to drive Emily’s Entourage’s mission forward.  The aim… is to find new treatments and ultimately achieve control/cure for everyone with CF.”

In a post on the entourage website, Emily describes the reality that those who are healthy often forget, “The truth is that life is fragile and tenuous for everyone, but I think those of us with CF and other life-threatening illnesses live with an acute awareness of this reality every single day.”

Even so, she dreams.

First published on LinkedIn.

To learn more about Emily’s Entourage, visit their website at www.EmilysEntourage.org or connect with them on Facebook (www.facebook.com/emilysentourage), Twitter (www.twitter.com/emsentourage4cf) or Instagram (www.instagram.com/emilysentourage).

 

Based on the Health Communication, Health Literacy and Social Science #HCHLITSS Tweet Chat.  To learn more visit http://HCHLITSS.net

Why Parents MUST NOT Stop!

mental health special needs

Parents of Children with Special Needs

I am constantly amazed at the bravery of some parents who are activists for their children in schools in the US. There are so many exhausted parents looking desperately for help in a place that is mandated by US law to help, public schools.

“I Am Adam Lanza’s Mother” Blogger Reveals Regrets, Hopes For Mental Health Care

On May 30, 2014, WBUR -Boston interviewed a mother who wrote a post a year ago called “I Am Adam Lanza’s Mother” last year.  Her post went viral and she and her family were in the glare of the media’s spotlights.  Here is her interview:

http://cache.wbur.org/audio/player/news/2014/05/30/i-am-adam-lanzas-mother-blogger-mental-health

mental health special needsLook at the Comments

I read the interview and then I looked at the comments. WOW! The comments are powerful! Here are a few and I will add them as this post evolves.

Ellen Chambers • 2 hours ago
There is another culprit in our society’s long-standing failure to address the needs of individuals with mental health disabilities (and other disabilities that can sprout mental health implications when not properly supported): our public schools.

Like it or not, schoolchildren with special needs have a legal right to educational services that will prepare them for further education beyond high school, employment, and independent living. Like it or not, these services must be delivered in a manner that allows them to make progress at a rate commensurate with their innate cognitive ability. Like it or not that means school districts must address a student’s mental health issues that impact on that mandate. That’s the law. If you don’t like it, it’s a free country, you can lobby Congress to change it. Until then, that’s the law.

The reality, though, is very different, and therein lies the problem (actually, therein lies the ticking time bomb.) Public school districts in Massachusetts (and nationally) violate students’ special education rights at an alarming rate. According to the Massachusetts Department of Elementary and Secondary Education (MDESE) between July 1, 2011 and June 30, 2012 there were 715 such violations recorded in the Commonwealth. Those are the violations that were discovered… the actual number is hundreds of times higher.

We’re not talking about pesky little paperwork violations. These are substantive violations that have an immediate and negative effect on the lives of students with special needs and their families. Some of these students present with primary mental health disabilities, others develop secondary psychiatric issues due to years of preventable academic struggle and failure and the the emotional battering that goes along with that. Tens of thousand of Massachusetts students with disabilities are failing at rates far out of proportion to their innate abilities. Anyone wanting the numbers to prove this can contact me privately at emchambers@charter.net

I am working a Massachusetts case right now involving a 15 year old boy with primary diagnoses of autism and obsessive compulsive disorder. This young man has great potential, he is not cognitively impaired. However, his autism makes it very difficult for him to control his behavior. Over the past year his behaviors have escalated alarmingly, despite the best efforts of his family to work with their local school district to address them. He has had two psychiatric hospitalizations in this year alone because he presents “a risk of harm to others” according to the hospital. His psychiatrist, who has treated him for over two years, states he “has had a significant increase in sexualized and assaultive behaviors, self-injurious behaviors, and verbal threats towards others.” His pediatrician who has treated him for 13 years has written to the school stating his “autistic symptoms present significant and imminent danger of serious bodily harm to both himself and those around him.” The school district has received similar letters from many others involved in his care, and all have recommended he be placed immediately in a residential school equipped to work with him.

This wonderful young man, through no fault of his own, is a ticking time bomb. Why? Because his school district has turned a deaf ear to the warnings of multiple clinicians, and has ignored it’s legal obligation to properly educate him. Meanwhile he, his family, and his community are, today, in “significant and imminent danger of serious harm.” The school committee, school superintendent, school special education director, and the local police have all been notified. Despite all of this, his family’s only recourse is to hire a lawyer at many thousands of dollars (which they don’t have) to take their school district to a hearing to force them to comply with the law.

I spoke with the school district last week and pointed out that this case is not at all unlike those of John Odgren, Adam Lanza, Phillip Chism, and Elliott Rodger. Still, they refused to place him in a residential school. They gave no cogent reason for their position.

A tragedy could very well be in the making here, everyone knows about it, and NO ONE is doing anything to prevent it. And, God forbid, if something tragic does happen, I can assure you the school district will not be held to account. We have a broken, dangerous, mental health system. That’s well known. We also have a broken, dangerous, public education system that has flown under the radar for decades, inflicting damage every day.

Ellen M. Chambers, MBA
Special Education Activist
Massachusetts
(978) 433-5983
emchambers@charter.net

MarionKing • an hour ago
Ellen, Thank you for such a clear and compelling discussion of this issue. I have experienced the failure of my public school to address the needs of my children, one of whom has mental health needs secondary to his autism diagnosis, and the other of whom has a primary diagnosis of mental illness and a rare, complicated physical disorder.

I also heard Liza Long speak yesterday in Marlboro about stigma, and speaking out, and about how her state’s Child and Family protection services provided her with a horrific ultimatum.

My advocacy on behalf of my children and as a the Vice President of the Board of Directors of SPEDWatch have been used against me by my school district and the legal system, as if advocating for all children, my own included, was somehow indicative of some parenting flaw.

The world has gone mad.

The sooner that parents, educators, first responders, elected officials, social workers, medical and mental health providers, aunt and uncles, grandparents and siblings, friends and neighbors, in short, all of us, shout from the rooftops that schools and mental health systems must collaborate and actually MEET the needs of our children, the sooner we will have an end to the stories of Adam Lanza, Elliot Rodgers, Ellen’s young autistic client, my children, and many more.

Marion King, Foxboro MA
http://www.spedwatch.org

Schools on Wheels: Helping Homeless Children in Massachusetts

A few years ago I spoke with a group of mothers who were concerned about their children’s school.  The neighborhood they lived in is called “transitional” and the school had an 85% turnover rate.  That means that 85% of the children who started school in the beginning of the year didn’t finish the school year in that school.  One hundred percent of the children received free breakfast and free lunch and it was the policy of the school to leave any left over cereal boxes out for the children to take home to share with their family for dinner.  

Moving to Massachusetts, I’m always struck by the wealth that I see around me.  The libraries are filled with books, the public school my son went to last year kept begging families to request free lunches so that they would qualify for Title 1 status.  YET, poverty is real and  homelessness exists in Massachusetts.

Recently WBUR, one of  two public radio stations in Boston (the other is WGBH, another sign of the wealth of this area of the country) had a story that I want to share.  It is about homelessness and school.

The statistics are staggering.

 

schools on wheels banner The story was about a teacher, Cheryl Opper, who read about the work of Agnes Stevens.  Agnes started Schools on Wheels in 1993 in Santa Monica, California.  It is a volunteer tutoring program to provide academic stability for homeless children.

In 2004 Cheryl started Schools on Wheels of Massachusetts in her kitchen where she trained volunteer tutors that she recruited from local universities.   She worked with 20 children from two family shelters.  From these humble beginnings,the program has served over 1700 children and has logged in over 24,000 tutoring hours.

Here is the radio interview about this program.  Please listen and learn more.

Patient Advocate–Pat Mastors

Empowered Through Loss

Creating A Patient Advocate

patmastors1patient advocatePat Mastors’, patient advocate, “medical awakening” came with the tragic loss of her father. “My father, an otherwise healthy 76-year-old, fell down stairs at home and fractured vertebra in the neck. Surgery to fix it went well. But his intestines burst two days post-op. Later we learned it was from C.diff.”

Clostridium difficile or C. diff is a bacterial infection that “is most commonly associated with health care, occurring in hospitals and other health care facilities where a much higher percentage of people carry the bacteria,” according to Mayo Clinic’s website. It is easily passed along via spores that last on surfaces for weeks or even months.

Because of this hospital-acquired infection, Pat’s father survived only six months. “As a reporter, I felt people needed to know how easily unintended harm happens in even the best hospitals. Plus as his advocate and only daughter, I wondered if I’d known more, could I have made difference? I’ve been working on it ever since.”

Simple Communication is Needed

Having been a television newscaster taught Pat “efficient, simple communication of critical information empowers people to make informed choices.” Applied to healthcare she believes it transformative: “cultivates a more responsive and transparent system.” Her journalist’s training opens her mind to the many sides of any story, “I have spent years doing my best to understand the entire landscape and all the players in it. Nothing’s simple in healthcare!”

What You Need To Know Before Going Into the Hospital

Through her patient advocate research Pat’s gleaned five of the most important things someone going into the hospital need to know:

1) The third leading cause of death in the US is errors and infections. “Up to 440,000 are killed per year.”
2) “Ask your surgeon, “How many of these have you done? What’s the infection/complication rate? You learn a lot by how s/he responds.”
3) “Bring an advocate! Don’t go it alone.” Pat recommends a firm, non-adversarial professional who knows how to deal with people.
4) Understand that shift changes and “hand-offs” to other staff, are the time when errors happen—“things slip through the cracks.”
5) “Take notes, speak up if you see disconnects.”

Have Your Family With You In Hospital

Knowledge is power, and Pat knows firsthand that this is the case. Suddenly her daughter, who had walked the Appalachian Trail, was in the hospital. Jessica came down with a rare paralyzing nerve disorder called Guillain-Barré syndrome (GBS). In GBS a person’s own immune system damages their nerve cells, causing muscle weakness and sometimes paralysis. “The challenge was to get the best from modern medicine, AND the best HUMAN investment from us, clinicians, input from other advocates, research, nutrition, etc.” Pat and the whole family were at Jessica’s bedside. “With shift changes and handoffs, we (family) were the only constant. We helped keep clinicians’ focused on her.”

Her family’s presence helped. Pat tells the story of one of many interactions which show the difference that can be achieved by having the family present. Jessica was having a radiological test and her pain medicine was wearing off. Pat asked the technician about getting transport back to Jessica’s room. She was told it would take as long as it takes for Transport to arrive. “I asked “how long before Transport gets here”?” The Chief of Radiology overheard the “I don’t know” answer and he himself wheeled the gurney! “This does not happen if you are not there to look them in the eye….” Pat says. “All doctors and nurses feel good when they are being human and kind with you… There are just so many distractions, WE FAMILY members’ presence reminds them.”

With the efforts of all the players, (physicians, nurses, family) focused on Jessica, she was out of the hospital significantly earlier than projected. “In 7 days (instead of 23), fully recovered in 3 months (instead of 6-12),” Pat states.

The Patient Pod

ABOUT-Patient-Pod-image-alone-102.5-kb Patient AdovcateMaking a difference for others is part of Pat’s advocacy. She created the Patient Pod. “I created it to bring patients hand hygiene, access to personal items, plus a way to take and store notes, post message (like “patient white board”) and keep discharge stuff organized. I wanted patients to have autonomy, dignity, things comforting and familiar, in a place where nothing you touch is yours.” In addition, the Patient Pod includes a plastic sleeve for the TV remote control, one of the dirtiest items in a patient’s room.

Design to Survive

She is also writing. Her recent book as a patient advocate,Design to Survive, proposes the IKEA model for theDTS-New-Cover Patient Advocate healthcare setting. She shows how a “model of partnership, savings and shared responsibility serves both provider and consumers worldwide.” As her table of contents points out:

“If IKEA designed health care…

1. We would always feel welcome

2. Instructions would be understandable to a 5th grader

3. A one-stop website would help us learn, connect, and plan

4. We’d get tools for success when we walked in the door

5. We customers would have to roll up our sleeves and help

6. Prices would be clearly marked…and we’d pay our own bills

7. The team that serves us would act more team-like

8. Hackers (the good kind) would thrive

9. It would live to innovate.”

Pat believes that simplicity saves lives and in that simplicity the patient’s voice is essential. “Patients/consumers need to speak up where appropriate, take time to give feedback, good and bad. Doctors, nurses are under the gun for performance: when they go the extra mile, write their bosses! If care’s poor, tell that, too.”

Pat Needs Your Help to Help Others

Presently Pat is looking for funding to educate more patient advocates, “We need more opportunities for the patients voice to be integrated into all aspects of care. The problem is, who are ‘Patient Advocates’? We’re self-defined, like ‘travelers.’” She believes that Patient Advocates need more professional development opportunities “so we can bring not just stories, but tangible and actionable take-aways to our audiences.” If you have any ideas for funding this endeavor, please comment on this blog post or at Pat’s Blog.

This post was developed from the transcript of #HCHLITSS chat December 19.

First published on #HCHLITSS Health Communication Health Literacy and Social Sciences.

Being Invisible Girls

What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up?

“I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudden the little girl looks right at me.  So  I hold my hands out and she climbed on my lab and she fell asleep,” Sarah Thebarge remembers.

That one action changed Sarah’s life.  “There are so many people in this world who feel lost, broken and rejected.  And so if I can do anything, even the smallest thing, to make someone not feel that way, I’ll do it,” she says.

Who is Sarah Thebarge?

sarahthebarge640She’s a writer, physician assistant, and graduate of Yale who, at age 27, was diagnosed with breast cancer.  “I was doing laundry and I put all of my white clothes in the wash…  I was just wearing a white t-shirt….All of the sudden if felt like a raindrop had fallen from the ceiling.  And I wondered if something was leaking up there.  I looked up at the ceiling and then down at my shirt and there was blood on my shirt.  I went to the bathroom and lifted up my shirt and sure enough it was bleeding…Only masses cause blood to come out and I knew I had cancer.”

Only about 1000 people are diagnosed with breast cancer before they are 30 and their cancer is often very aggressive.

Sarah’s story turns grim as her diagnosis of ductal carcinoma in situ, which Mayo Clinic says is “the earliest form of breast cancer,” returns as invasive cancer, a year after a bilateral mastectomy. And then it recurs twice:  once ,during chemotherapy.

During this period of time, Sarah’s boyfriend broke off their relationship; she had to drop out of her second masters program (this one at Columbia); a friend died of cancer; and, a truck hit her car. “EVERYTHING went wrong during chemo.”  Sarah got sepsis and nearly died.

A small town girl from a small town near Lancaster, Pennsylvania, Sarah had no family history of cancer.  Her father is a fundamentalist evangelical Baptist minister and her mother a homemaker.  “I …had to wear dresses to my ankles, couldn’t cut my hair, no woman in my family had ever gone to college.”

She describes her growing up this way. “I was raised in a pretty conservative home. My parents tried to balance…love with toughness.  As a little girl, I was really afraid… I was afraid that God was just waiting for you to mess up and then God would smite you. I was very focused on the rules and my impression of God was, if you kept all the rules you were on God’s good side and good things would happen and if you broke the rules, even the smallest infraction, then God was going to punish.”

But Sarah overcame her childhood to be the first woman in her family to attend college and graduate school at not one but two Ivy League Schools.   Cancer stopped her.  So, after the turmoil of treatment in Connecticut, she decided to sell all her possessions and buy a one-way ticket to Portland, Oregon.

She’d been in Portland almost a year, “I was still pretty broken,” she relates; when she opened her arms to a three year old girl on the Max.book_launch_slide  “It was rush hour I was sitting on the Max reading and this Somali woman gets on the train with 2 little girls.  And the train is really crowded…mom finds a seat and she has a chair for the 4 year old. The 3 year old doesn’t have a seat and this little girl was trying to sleep. Standing between her mom’s legs.”

While holding the three year old, Sarah struck up a conversation with her mom.  Before getting off the train, Sarah learned where they lived.  Fortuitously, before getting off the train the three year old put a pair of dice in Sarah’s hand.  “I went to their apartment to return the dice because I didn’t want this little girl’s first memory of America to be of someone who had tricked her out of giving up her only game.”   She entered their apartment to find mom and five little girls eating moldy bread dipped in ketchup.

“When I went in I realized how they were living.  Which is this totally dark apartment, no furniture, they didn’t have dishes, toothbrushes, nothing.  They just had the clothes on their back. The most dire thing was that they had run out of food…The mother was dumpster diving behind the Safeway giving her girls anything she could find to eat.”

Part of their difficulty came from illiteracy. “They’d gotten food stamps. But mom didn’t know how to use an oven.  So she spent all the food stamps on supplies to make Somali cakes (like cornbread). She can’t read, so she thought the word “broil” on the oven meant “on”  She put all the cakes in the oven to bake them, but it was on broil, so all their food scorched in a few seconds.  And there was a month before they got new food stamps. So she ended up dumpster diving.”

Sarah pieced together their story.  How mom and dad had fled Somalia’s genocide, how dad had abused mom and then left the family in Portland without money.  How mom had no job skills, didn’t know the language and had no support to help her raise five little girls. “She looked the way I’d felt when I first got to Portland…tired, scared, sad…  I thought… if it was the other way around…if I were dropped into Somalia under those circumstances…And I decided if someone found me in Somalia like that, I’d want them to HELP ME. So that’s what I did.”  She bought them necessities like pajamas, toiletries, food, clothing and her church chipped in furniture and dishes.

The “Invisible Girls” and Sarah are family now but it wasn’t an easy story.  Dealing with their first winter was just one more “new” situation they faced together.  Sarah describes one of these experiences this way,  “The first time I turned on their heat, the invisible girls ran around screaming that I’d set their house on fire!  They didn’t need heat in Somalia. So the only explanation for why hot air was coming from behind a wall was that there was a fire. And they knew that I was the one who’d started it!”

The book The Invisible Girls, published in April, details Sarah’s experiences as a cancer patient intertwined with meeting and connecting with this amazing Somali family.  The proceeds from the book are going into a college fund for The Invisible Girls.  Sarah recommends this book with, “I think it is an important read for cancer patients — to see that there’s life beyond the misery of treatment.  To see that it matters to the world that you try to survive (if that’s God’s will for you).”   Sounds like a book for everyone, doesn’t it?

The content of this blog post comes from the #HCHLITSS transcript from the Hashtag Project September 26, 2013 and from personal transcription of a radio interview on OPB conducted by Allison Frost on June 19, 2013.

Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

1236342_223257914499618_934358087_n“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella 

No Change in Death Rate From Breast Cancer Since 1970

Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet the truth is that the death rate from breast cancer is basically unchanged since 1970.  Actually, to be more precise, that is the death rate from metastatic breast cancer (MBC).

Sea-to-Sea For METAvivor

Real people are affected—people like little JJ and his father, Marine Lt. Col. Joseph Fagan.  Three years ago, Joe and Lainie Fagan were excited about the arrival of their new baby.  At age 29, and 34 weeks pregnant, Lainie received horrible news—she had metastatic breast cancer.  JJ was delivered immediately but his mama died nine months later.  “Joe Fagan and his wife Lainie were members of our local METAvivor group in Annapolis,” Dian CorneliussenJames (CJ) , founder of METAvivor explains.

“Joe approached me in February … said he wanted to tell people about METAvivor and raise awareness for MBC.  He wanted to do this by running across the USA … what did I think?” CJ says.  Needless to say, CJ was elated.

So February 1, 2014, Joe will start running.  The event is called Sea-to-Sea for MBC.  Joe will run from San Diego to New York City  3,845 miles, arriving in the Big Apple on Father’s Day.  He will be running through Arizona, Colorado, Kansas, Missouri, Illinois, Indiana, Ohio, Pennsylvania, New Jersey.  On the way he will meet with people who have metastatic breast cancer and recipients of METAvivor grants. “We plan for sponsorships and donations in kind to cover expenses. One hundred percent of funds raised through this fundraiser go to MBC research,” CJ states.

What is METAvivor?

METAvivor is an all volunteer organization founded 2009 to raise awareness of metastatic breast cancer and to fund research. Almost everyone working for METAvivor is a patient with metastatic breast cancer.

It’s hard to compete for media attention: the world of funding for breast cancer is primarily focused on prevention and awareness of breast cancer.  Pink, the color of breast cancer awareness, is everpresent, especially in Breast Cancer Awareness Month, October—what advocates for change call ‘Pinktober.’  “The pink community is enormous and has a huge amount of funding. They do everything with big splash … paid experts … “ CJ says.   METAvivor puts 100% of donations and fundraiser proceeds into its [research] grants. Others must raise millions to do what we can do with $250,000.  We want you to know that this week we chose 4 new grant recipients … Packages total $320,000!”

Metastatic Cancer

CJMany believe that the money that is donated to large philanthropic organizations is for research for a cure to breast cancer.  This is, unfortunately, not the case.  “We need to force a change in the conversation. Breast cancer doesn’t kill people. METASTATIC disease does. Their needs are URGENT,” AnneMarie Cicarrella,  Sea-to-Sea Run Volunteer, states.  “Prevention and early detection were noble goals but they have not worked.   How long will we practice triage in reverse?” CJ asks.

The primary goal of Joe’s run and for METAvivor is to bring *significant* attention to the metastatic breast cancer community. “  Their voices are lost in the pink hype,” AnneMarie says.

“This event is happening because the majority of public doesn’t even know what metastasis is.  We want to educate the public, raise awareness that 90% of all cancer deaths are from stage IV cancer,” says CJ.   Stage 4 is the medical terminology for cancer that has spread from the original site, like the breast, to other organs of the body.  It is fatal.  “We want to raise awareness that 100% of all “Breast Cancer” deaths are from MBC. …we want to raise awareness that only 2-5% of research funds go to stage IV cancer collectively,” says CJ.

The statistics–that 90% of all cancer deaths come from metastases, that 100% of all breast cancer deaths come from metastatic breast cancer, and that only two-to-five percent of research dollars go to studying stage IV cancer—are chilling.  But that is not the only problem with the numbers.   “Actually, the numbers of those with MBC are greatly distorted. WE ARE NOT COUNTED. We are counted only at initial diagnosis,” CJ relates.

What’s Not Happening in Research

METAvivor’s goal is to get commensurate funding, that is, funding for metastatic cancer that is equal to funding for awareness and prevention.  “Commensurate funding is the only way to stop the deaths of roughly 600,000 cancer patients every year in the US,” says CJ.  “Metastasis researchers are trying hard to find solutions, but at only 2–5% research funding … progress is snail pace.”

“We need these researchers to be funded. METAvivor is the only organization w peer-reviewed research grants solely for MBC. This is what Sea-to-Sea For MBC is trying to do.   Spread awareness.   Hear the patients.   Hear the researchers along the route.   Spread the word,” says CJ.

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AnneMarie explains her interest in metastatic research with  her mother’s story,  “Early detection doesn’t guarantee anything. My mom’s mets came after a 25 year dormancy.  My mom is a 2-time survivor.   She surpassed five years on both breast cancers.   She’s in the ‘good stats’, but she’s metastatic. ”  CJ also shared her experience.  “Only about 6% of BC is known to be genetic. I was told I was low risk .. .but am metastatic.   You never know,” she says.

“Metastatic cells can exist prior to one having a detectable tumor.   These cells do not respond to primary BC treatment.   Hence MBC,”  CJ highlights. “People can metastasize any time. Mets cells can lie dormant over 20 years.  Everyone is at risk.   Not to scare.   Just being realistic.”   Anne Marie points out, “All of the questions posed… why cells leave, what causes them to wake up from dormancy…this is WHY work of METAvivor is so important.”

At this point, when the cancer spreads to other places in the body, medicine can only offer treatments to stave off the spread.  One type of chemotherapy and/or radiation therapy is used, when it fails, another is used.  With metastatic disease, there is a cycle of one difficult treatment with side effects after another until there is no treatment left.  The patient dies.  “With metastatic friends, my hope is that they never run out of treatment options. Theirs are very limited,” AnneMarie states.

loriLori Marx-Rubiner, METAvivor Board member and Director of Nationwide Ambassador Program agrees, “We don’t know WHAT causes cells to leave the breast, we can’t distinguish those which will from those which won’t.   Studies are in their infancy…”  The fact that so little funding is applied to metastatic breast cancer is extremely frustrating for those whose breast cancer has metastasized.  “It’s good to try to prevent MBC.   BUT this does NOT help those who have already metastasized.   We want research to extend our lives with quality and ultimately to save lives.   This is not helped by prevention of mets research.  I’d like ALL chronic disease curable, I’ll settle for chronic.   I’d like to see my son marry, grandkids.  Many live years with MBC but life expectancy is still about two years. Quality and quantity…we need both!”

Volunteers NEEDED

If you want to make a difference and fund research to extend lives with quality and quantity, then be a part of Sea-to-Sea for MBC. There is a need for volunteers for the Sea-to-Sea for MBC event.  Take a look at the <a href=” https://t.co/VC2weNLrnC”>Facebook Page</a> and sign up!

“As metastatic cancer patient, more than anything we need the truth spoken, we need to be seen and heard,” says Beck Bills, breast cancer activist.

 

The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project

Anyone Can Get Lung Cancer

deanas photo“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”

The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190.  Deaths from lung cancer are estimated 158,480.  For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.

One reason for the high mortality rate is that lung cancer is difficult to catch early.  Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray.  In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.

Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%.  “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.

Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”

Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives.  Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.”  Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“

Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.

Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm.  Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate.  “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”

Deana’s determination is based in loss.  “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers.  Deana lost her mother just nine months after she was diagnosed, in March 2013.  As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”

Always talk. Always share. Always engage.

“Always talk. Always share. Always engage,” says Anton J. Gunn, Director of External Affairs in the Office of Intergovernmental and External Affairs (IEA) at the U.S. Department of Health and Human Services (HHS).

Mr. Gunn’s long title might put you off, but there is nothing off-putting about this energetic former college football lineman when he is talking about service.

Anton GunnAnton Gunn is a newcomer to Federal Government, joining HHS after serving as the go-to man in South Carolina during President Obama’s first election primaries.  He worked grassroots, going door-to-door to win voters and in the process came to the decision that he should serve in the South Carolina State House of Representatives.

Linemen are usually the largest players on the team.  Their role is to make a space for action, meeting obstacles and overcoming them.  Meeting obstacles–like winning a seat in the SC State House, in a predominantly white Republican voting district–seems to be his destiny.  In his present position at HHS, one of his roles is to cultivate and maintain relationships with national, state and local organizations.  With the Affordable Care Act (ACA) being rolled out, Mr. Gunn will be tackling many challenges.

Gunn’s message is engagement, “I am proud of our work on the ACA.  We have efforts focused on patients…There is no better way to get real answers to real questions than to make a COMMITMENT to engage with patients and stakeholders.”  And he believes that engagement will overcome some of the challenges in healthcare, “Challenges? Well, there are lots. Lack of literacy. Social norms. Culture all can make it difficult. But we can overcome them.  We have tools like the ACA that will reduce challenges in health care.”

October 12, 2000 marked a turning point in Anton Gunn’s life.  On that date, Gunn’s  younger brother, Cherone, a seaman serving on the USS Cole, died in the terrorist bombing that also claimed the lives of 16 other sailors. Motivated to enter the political arena, Gunn became an active community organizer and advocate, a leader in economic development and health care reform.

“Public engagement means that you are focused on those you hope to serve,” Gunn believes.
“It means what matters to them, matters to you.” His professional mission, articulated in The Audacity of Leadership: 10 Essentials to Becoming a Transformative Leader in the 21st Century released in 2009 is to bring, “”diverse perspectives together to solve world challenges.” People-to-people is the way to find answers, Gunn feels.

Gunn also believes that technology can make a difference.  “We have to embrace technology to get higher quality outcomes in health care.  Health information technology can provide a standard framework for all to attain higher health literacy,” Gunn states.

To illustrate, Gunn points to the investments HHS is making to reduce health disparities, via health technologies “HHS launched an app challenge titled “Reducing Cancer Among Women of Color” last August.  The winning app will provide users w/ info on screening & preventive services in diff languages & in culturally appropriate contexts.”

Persuading the public that the Affordable Care Act will make a difference is Gunn’s present objective. “The ACA will make health coverage available to millions who don’t have it now. That’s a big first step to helping them to get care. “  He believes that joining health technology and the ACA’s insurance coverage is a huge first step.

“Being able to afford health insurance has been a challenge. The ACA is changing that.  ACA means insurance reform, and health information technology means delivery reform. “

By meeting people where they are, Anton Gunn is trying to improve healthcare in the US. “The power to improve our health care systems is at our finger tips. Engage. Include. Respect and Empower patients and consumers,” he tells all stakeholders.  His plea to us is simple, “ Visit http://t.co/Rzbm1JeWHO, learn about the marketplaces coming in October. Help someone get covered.”

Based on a #HCHLITSS twitter chat with Anton Gunn on May 9, 2013.

It’s Okay To Laugh, Cry and Feel Uncertain

6360_1109050649382_1320300607_282944_6468605_s1In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. Cindy went through chemotherapy and radiation. The family celebrated her “cure.”

For 16 years, Cindy was in remission.  During that time, the family moved from Maryland to Orlando, and watched their children grow up. Then, in 2006, while taking a neighborhood walk together, Cindy’s knee “gave out.”  Again Robert and Cindy went to orthopedic surgeons only to learn that she had a deadly form of cancer called Leiomyosarcoma.

“I very unexpectedly became an at-home caregiver,” Rob says.  Today Cindy has “been cancer-free, but had [her] leg amputated and [is] dealing with painful inflammation and erratic blood counts.  Chemo has affected [her] bone marrow. [and there is a ] Possibility of leukemia. [we’re] going thru testing now. Hoping for the best.  We are grateful for every day we have and look at it positively.”  Unable to use a prosthesis, Cindy is now wheel-chair enabled.

Robert Harris is best known online today as @Rob_Cares, a moniker he adopted after writing a book about caregiving and starting Rob_Cares LLC. “When I was told my wife had cancer, a 28% chance to survive and could die in 4 months, [with Leiomyosarcoma, Stage III]  I felt completely lost and helpless. Just like when 9-11 hit us. We didn’t know what to do.  I hated that feeling. As a result, I didn’t want anyone else to feel helpless, like I did.  I also wanted them to read our story and know that it’s okay to love, laugh, cry and feel uncertain.”

Published in July 2012, Rob’s book, We’re In This Together:  A Caregiver’s Story  is a 5 star hit on Amazon.  It is a #1 bestseller in the Physician and Patient Caregiver Category and continues to rank as the #4 top rated book in that category since it’s launch.  Why’s this book so special?

It is written from the heart.  “Most of us don’t practice medicine, yet, without warning, we are thrown into a medical environment and told to be a caregiver to our loved one. Without any experience, that is a daunting task. I wrote the book to help others become knowledgeable in their roles from the lessons I learned on my journey.”

The book chronicles both of Cindy’s cancer experiences, with 70 tips for caregivers interspersed with Cindy’s observations.  As Rob says, “I knew nothing when I became a caregiver. I was too proud to ask others for help or advice.  I was completely out of my element…in almost every regard. Whatever I learned was self-taught….”

Rob remembers a moment when he “dove into waters I had never encountered” at the drug store, “I had to learn about caring for a female in terms of their hygienic needs, etc. As a male, we are less attuned to beautifying ourselves and certainly not our mates. It was very uncomfortable for me when I had to shop for feminine hygiene products in the store for the first time. That was embarrassing. Thank goodness a woman approached me who could tell I seemed lost and didn’t know how to swim in that isle of the store. She asked for my list and located the products my wife was needing. Other than laughing at me (hysterically, I might add), she was very kind.”

From the mundane to the profound, Rob shares and provides guidance to legions of caregivers.  And there truly are legions-the numbers are astounding.  There are over 65 million American caregivers, a number that is 29% of the total population.  These caregivers devote 20 hours a week caregiving.  Almost a million and a half of those caregivers are children, between the age of 8 and 18.   Forty percent of caregivers have been diagnosed as clinically depressed.

Rob does the job of many caregivers.  “I attend all doctors appointments, quarterly check-ups, housekeeping, etc. Keep her spirits high.  I’m helping her adjust to her new life at home and making every day a great day for her. We have fun and laugh.”

That’s an important part of caring for himself as well.  “We love each day we’re together as a family. We created an acronym: ESD = Every Stinking Day live each day as if it’s our last,“ he says.

This strategy applies to everyone as well. “Everyone that interacted with us was in a positive frame of mind and happy as possible…. I communicated with “happy” family and friends only. If someone was negative or critical, they were removed from my inner circle until they changed their mood. That’s how we were able to remain upbeat during the most difficult of times.  We had a friend that would always say, “You poor dear.” She was ousted from our group as a result.”

Staying upbeat has been his goal.  “I wouldn’t allow myself to get stressed. Whatever was going to happen would happen.    Being stressed was not going to change our set of circumstances….To unwind from the stress of the events we faced, we laughed a lot, joked with others and made sure.   We would only watch happy shows and comedies/movies. I also went for runs for quiet time.”

Rob and Cindy use this strategy in their interactions with medical staff. “We played practical jokes on doctors, committed random acts of kindness and made friends with everyone.”  In fact they have made it their job to know their health care providers.  “The nurses, not the doctors, run the hospital.  They are in charge.  We treated everyone like family as soon as possible. I bought them snacks and drinks. We asked and learned about their families.  When doctors came in, we did the same thing. We made them tell us about them. Nothing professional. Some were resistant at first, but eventually, they warmed up to us. We made friends with them.  Most are our friends today.”

They made a deliberate effort to be connected. “Our goal was to be treated better than everyone else on the floor, especially when my wife needed them. “  Yet their idea of being positive and connected to others comes from having touched by death.  “My wife passed away and came back to life in December 2006. The doctors were right there for us the entire time.  Most people see angels and bright lights…She saw a shopping mall and Coach purses without price tags! Honest!” Rob states.

When asked how friends and family can help caregivers and patients, Rob is full of suggestions, “Communication is MV_3_12_RobHarris__197_WEBthe key. Call and ask what the family needs. If they say they need nothing, bring them food from a restaurant, come visit or just call the caregiver to see how she/he is doing. Outside contact is missed when stuck at home or a hospital. It’s important to stay in touch with friends and family.”

Rob’s first book is a love story but it is also about cancer.  “It puts cancer out in the open and all the emotional dilemmas that come with it. We’re human. My book speaks to that.”

Now, Rob is editing another book called, We’re In This Together: A Caregiver’s Guide which he hopes to have ready in the fall of 2013. This book will continue to describe his learning and also take a “psychosocial perspective.”  Rob says, “As men, we don’t share our emotions. I held them back, as well.  I learned as I went along that it was okay.”  And he promises that like the first book, “you’ll be laughing and crying.”

Rob Harris’s Book is available at Barnes and Noble, at Amazon, We’re In This Together:  A Caregiver’s Story and on Rob’s website.  This post is a summary of a twitter chat #HCHLITSS with Rob conducted on May 30, 2013 and personal communication.

Bringing Back the Story: Wellbound Storytellers and Health Empowerment

Sugar-monsterbanner

The Navajo Sugar Monster

Long ago the Holy People predicted that a monster would take over the Navajos.

Our mothers and fathers would change…No longer were man and woman together.

One after another this monster ate away their faces.

It gnawed away Navajo identity….Everything turned from light to dark….Words ceased to exist.

The Holy People begin to cry.

The Navajo language meets its end…Mouths would soon close entirely.

X marked the spot….Over the eyes and mouths of the people.

The Navajo were not human anymore.

They were beings who craved only one thing

It was not water or food…Nor prayer or traditions…Nor love or family.

The Holy People were right.

Sugar is our monster.

A killer claiming Navajo lives…With a craving that could never be satisfied

Who are these monsters?

Mom? Dad?  Where are the elders? Where is my family?  Who will save us?

It’s going to claim the next generation if things don’t change…

We must stand and make a change…Stand up and fight against this monster

For you…For your family,

Your mother, Your father, Your children

For your Nation.

by Chantelle Yazzie (A neo-traditional story published on Wellbound Storytellers.)

Stacy Braiuca is one of the Native Americans writing for Wellbound Storytellers.  “There are currently 11 ‘Wellbounders’ all over the country, all different Nations, ages, backgrounds.  We try to write about strengths and weaknesses in our journey.  Not only are we trying to be a group of leaders to start a movement of storytelling, but storytelling is a natural fit to health empowerment.”

Just a year old, The WellBound Storytellers “blog is specifically trying to use storytelling to empower people, ourselves and others, on our health journey.”  Indeed, storytelling is essential to the wellness of native people.  “We have always told stories to pass our values, lessons, and learning to the next generation,” Ms Braiuca relates.

Ms. Braiuca is a Clinical Social Worker and Public Health educator. She works full time as a Research Associate for thewpid-Photo-Mar-22-2012-941-PM Center for American Indian Community Health and Healthy Living Kansas at the University of Kansas Medical Center, working on research projects about cancer, obesity, and health literacy.  She is a member of the Citizen Potawatomi Nation (hence CPN).   According to the CPN website, “The CPN are Algonquian-speaking people who originally occupied the Great Lakes Region of the United States.  Originally the Potawatomi were part of the Three Fires Council made up of Potawatomi, Ojibwe and Odawa, collectively known as Anishnabek peoples.”

Staying connected to one’s heritage is important to health according to Ms. Braiuca.  “Citizen Potawatomi Nation has members globally. They have the first population representative legislative government of contemporary Indian Nations.  We live everywhere are all connected via …  CPN FaceBook pages and CPN website.”

“Native Peoples sharing their journey to wellness”is the tagline for the Wellbound Storytellers blog.  And the journey to wellness is definitely needed among Native People.

According to the Indian Health Service of the US HHS Fact sheets, native peoples have a lower life expectancy than all the races of the US.  The leading causes of deaths according to 2005-2007 data, are heart disease, cancer, unintentional injuries and diabetes.  Native Peoples have higher rates of death by alcoholism (552%), diabetes (182%) and unintentional injuries (138%) than other Americans.

Ms Braiuca points to history in explaining much of the health disparities that plague Native people.  “Native health is a concern in all health areas. Disparities are woven into [our] history [as a result of the] 500 years of Colonial policy debacle.”  The issue of trust in western medicine is key among native culture “for example smallpox blankets, commodity food, Indian Health Service, reservations, removal [and] because traditional healthcare [has been] taken away,” Ms. Braiuca recounts. In fact “diabetes, cancer, and loss of culture and [traditional] medicine and language are tightly woven,” she says.

Native American genetic make up was not designed for Western diet and cultural habits.  Diabetes is a major health problem among native people.  The reasons vary but include “lack of prevention, poor healthcare and commodities like flour and sugar and lard, used to make fry bread which is not a traditional food!”  Traditional foods are the “three sisters– corn, squash, beans– and wild rice, fish and wild game,” Ms Braiuca says.

Another risk factor for Native people is smoking.  “We have the highest rates of smoking of any population in the US, over 40%,” Ms. Braiuca states.  However she is clear that this problem is connected with the recreational use of commercial tobacco, not from traditional, sacred uses.

Because of the issues of mistrust, any prevention effort must be community based. It is “imperative to [have] buy in of the community… plus LONG relationship building,” she says.  Part of the problem is a lack of native specific research which is hindered by tribal sovereignty, health systems and issues of trust.  The Center for American Indian Community Health, where Ms. Braiuca works, is one of the few places in the country doing community based research with Native Americans.

The Wellbound Storytellers blog employs all kinds of technology “oral/audio, video, art,  and written” to get their message across.  Most of the stories are neo-traditional “as in tradition being born but also recalling traditional stories,” Ms. Braiuca clarifies.  This is because traditional healing stories are unique to particular nations and these stories can only be told by certain individuals, elders.  Lamsam-Teresa-1449-5x7-color-qty001

According to Teresa Lamsam, another Wellbound Storyteller, those specific  individuals have a responsibility for the story. “Most of the stories that would be relevant [to healing] are considered to have healing within the telling of them — which is what creates the responsibility for the person who carries the story.  The person who receives the story also has responsibility.  Usually, a ceremony must accompany the story.”

Bringing back the story to heal is the message of the Wellbound Storytellers.  “Storytelling is not just limited to the younger generation listening to the older one, it is perfectly appropriate to flip that script.”  And that is just what these storytellers are trying to do.

“There Is No Health Without Mental Health”

@DocGroucho“There is no health without mental health. I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.”

“Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD

Dr. April Foreman is not your average psychologist. She is an innovator and an extremely determined woman, especially when it comes to Veterans and social media. “I love serving Veterans in my role as Suicide Prevention Coordinator at my VA. Love innovating ways to give good care.”

That’s why she and her VA team went the extra mile to get her to a WiFi enabled Starbucks for a twitter chat. “I had to drive back from New Orleans and my government car wouldn’t start. My VA team knew about this chat and …helped me call the tow and get a new car in record time, so I could get to a place with WiFi! Many of the people I work with are Veterans…And they know how to work as a team!”

Foreman describes her job search which led to her employment this way, “At the VA, everyone I spoke with understood the value of connecting providers, patients and their health care system using personal technology and “’new media.’  In mental health care we understand it is the relationship that heals, and I knew that I needed to work in a place that understood the importance of life-long patient relationships. A place that would do anything, even brave the Web 2.0 frontier in health care, to do this.”

In the same post, Dr. Foreman states that she knew she wanted to be a psychologist since fourth grade. “Easing pain – even just a little bit – one person at a time has always been my personal mission,” she says.

Dr. Foreman uses social media to educate and inform. This is because social media is “where Veterans are,” she says. “Veterans operate by word of mouth. Social media is a natural extension of that.”

Dr. Foreman appeals to Veterans this way, “How do we build strong connections with you? Connections that might save your life or save the life of a Warrior you care about? There is me, there is you and woven around us there is this “system.” How do we build a bridge over it all and connect?”

She believes that technology is the answer. “We can use IT to reach out to people who feel suicidal. We no longer have to wait for them to call US.”

In fact, she points out that there are efforts occurring at this moment in social media. “Right now, Facebook users can tag concerning posts and get those posts reviewed by a national suicide prevention crisis center. We can also use smart phones to track mood, send data to Health Care Providers…maybe even predict changes in suicide risk.”

One of the difficulties Dr. Foreman faces in her efforts to use social media in psychology is provider attitudes.  The “biggest challenges [to using social media in psychology] are attitudinal. FEAR, very irrational, mostly by providers and system administrators.”

Concerns about privacy is also a common response from providers. But according to Dr. Foreman, “Well, the knee jerk reaction [is] that all tech is a “HIPAA” violation, or unethical…but they can never say why. Fear about confidentiality, and fear about crisis/suicide risk.  Fear about ‘boundaries’ and provider privacy. I also think many mental health providers tend towards being face-to-face and low tech. They feel uncomfortable with tech. Avoid it.”

Yet the benefits are great according to Dr. Foreman because she believes that psychologist could be “using technology to target risk-related content and bring crisis resources TO people in need.” Dr. Foreman also believes other providers need to become involved in social media and health 2.0. ““Primary Care Providers provide 80% of mental health care. Usually the last provider to see someone before suicide.”

“Humanistic providers have an obligation to use their social media presence in appropriate ways for patients.” There are reasons for Dr. Foreman’s vehemence. One moment of irrational sadness and a life is lost. It’s “very heartbreaking….Many people who die by suicide were not thinking rationally. A short, irrational, impulsive period.  It is preventable. It’s why I do what I do.”

For those providers who are concerned about using social media, Dr. Foreman suggests putting together a social media policy and sticking by it. Dr. Foreman created a social media policy which include personal rules for friending and contact requests from current and former clients. These policies help to respect privacy of both client and therapist. She has published them on her website.

There are other benefits.  “I also use socialmedia to network with a wider network of professionals. Bring knowlege to my patients. I’ve often helped patients use social media to connect to resources support during a therapy session.”

Another barrier to widespread use of social media technology in mental health is that  “More providers need education about [social media].  And to be paid when we use it as legitimate intervention….Health Care System administrators need education on the way I can scale care by having patients use technology to monitor and share symptoms.”

“I’d like communications technology to allow me to send a suicide risk assessment to someone in crisis and have that data go right into a medical record, to be seen and tracked by all providers. Primary Care Providers, too.  I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term,” Dr. Foreman proposes.

Clients that Dr. Foreman work with are Veterans of the Iraq and Afghanistan wars. “Many Iraq/Afghanistan Vets feel isolated from other peers their age.  They have done and seen things they can’t discuss very often, [it’s] hard to feel a part of civilian life.   Many Iraq/Afghanistan Vets served in the National Guard.   [They’re] not part of continuous military community. Not really civillian though.  Many of our newest Vets are having difficulty translating military experience into civillian jobs.  [It’s] very stressful.”

The Veterans Administration has put some important measures into place to serve these Vets.  “The VA has preventive and supportive measures in place for the newest combat veterans, especially their feelings of isolation. The VA has special case managers that track Vets from these wars, keep them connected with services.  VA and VetCenters also try to have support groups focused on our newest Vets.”

april-foremanWEBSocial media is valuable to Veterans. “I find that they like knowing they can get support after they leave our session. Portable support amazing….Many kinds of support are a Twitter hashtag, Face Book page, google search away….” she relates.

Suicidal ideas can be associated with homicidal ideas. “Many times, when I see someone in crisis, they have conflict in their relationships, and want to hurt both self, and others,” Dr. Foreman states. Yet she clarifies that having ideas does not mean someone is making a plan. “Ideation can be normal….We are mostly born with an aversion to killing ourselves and others. Have to erode this to harm self or others.” It is only through watching or experiencing violence that people “acquire capability” to harm themselves or others.

One of the tools that Dr. Foreman has used in her practice is an app which allows clients to record their feelings on a daily basis. One reason why self-tracking, using apps, is helpful is because “pain/mood make it hard to accurately think back and self-report. Daily tracking is much better.” When the client self-tracks, the information can be used by the provider for prevention.  “We can prevent suicide by lowering [the] lethal risk during [the] period of intense emotional pain when you can’t think straight… clear thinking [is] often derailed in crisis,” she states.

When someone starts talking about suicide, what should you do?  Dr. Foreman says, “ I take that talk seriously, and am VERY glad to talk about it. To know and to help.  Listen to the talk. Address immediate safety first. Get help and a consultation.”  She also provided the link to the Nation Suicide Prevention Lifeline .  She said, “Veterans who use our Veterans Crisis Line will get a follow-up call from a VA provider like me within 1 business day. ”

One of Dr. Foreman’s desires is something that anyone reading this blog can do.  Share the links to the National Suicide Prevention Life Line and the Veterans Crisis Line and keep the public discussion of suicide going.  “Reach out!” she advocates.

Based on #HCHLITSS The Health Communication, Health Literacy and Social Sciences twitterchat.

Wow! What An Incredible Climate Change Infographic

This is an infographic created by Allison Lee. It comes from the website Learn Stuff.  Check out her huge list of sources at the bottom of the infographic.  WOW! Climate-Change

“A Needed Response”

Public health is about keeping people safe…be it through immunizations, assuring clean water or preventing gun violence.  Here is another safety issue we need to address:

A story about a friend…

There was once a very protected girl.  She did not date until she was 18.   She was an innocent.  She told the boy that she was dating that she would not have sex until after marriage.

She shared champagne with this boy and drank too much.  The next thing she remembered was going to the bathroom, feeling pain and seeing bright red blood.

The boy said to her, “I’m so glad I was the first.”

She continued to date this boy….thought she had to marry him.  She almost took her life.   Only with counseling did she realize she had been date raped.  She broke off contact with the boy.  She spent years in therapy.

He  became a successful physician.

Watch this incredible video with an important message.  It should be part of every boy’s and girl’s education.

From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

“I started METAvivor out of outrage.”

Dian (CJ) Corneliussen-James Co-Founder of METAvivor Research and Support, Inc

Born from the outrage of four women, METAvivor Research and Support, Inc. is a non-profit with a purpose–To increase research funding for metastatic cancer.

Dian (CJ) Corneliussen-James  is one of those women.   A self-described shy child, Ms. Corneliussen-James  (or CJ as she likes to be called) is anything but retiring and reserved.  Raised CJby a progressive cause-oriented Pastor father and reserved Quaker mother, CJ got a taste of traveling as an exchange student in Germany 1968-9 and Rotary Fellow in Austria 1972-3.  After getting a masters degree, CJ joined the Air force in 1979 “to pay college loans.”  She stayed with the Air Force for 24 years.  “I had a great life– variety, travel, pay and promotions.”  During her time in the Air force she tracked and analyzed Soviet satellite activity, collected information against the Eastern Bloc, served as intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict and resolved the cases of Americans lost during the Vietnam and First Gulf Wars.  In 2003 she retired as a Lieutenant Colonel and began a second career in the civil service as the Senior Intelligence Officer at the Defense Prisoner of War/Missing Personnel Office.

Three months after a clean mammogram she felt a lump in her breast.   Her world changed with the diagnosis of stage II breast cancer. . “Surgery, chemo, radiation, pills…Welcome to the Pink World,” CJ quips.   Her career was cut short with a subsequent diagnosis of systemic lupus and the spread of breast cancer to her lung – all in a period of 19 months.  She’s had a lobe of her lung removed as well as continuous chemotherapy since then. This year she had surgery for the collapsed remaining lung. “Recently a former HS teacher said I was the only one she knew who has been reincarnated several times in one life. “ CJ stated.

Although she retired, CJ didn’t stop working.  She turned her analytical mind, vast experience and understanding, to her disease and began to search for research on metastatic breast cancer (MBC).  What she found was a dearth of research on metastases of breast cancer and on metastases of all other cancers.

What are metastases?  People who have Stage IV cancer have metastatic disease.  Metastases means the spread of a cancer from the place of its origin, be that skin, breast, blood or lung, to other url-1organs throughout the body.  “The public doesn’t even know what mets is. Say you’re stage IV and they ask when will treatment end. The Answer: When I die, “ CJ explains.

“A few cancers kill without metastases. Ninety percent (90%) of  metastatic cancer patients die of metastases. One hundred percent (100%) of metastatic breast cancer patients die of metastases,” CJ states.

Why is there so little research on metastases?   CJ found that most of the funding from donations and taxes has gone to early detection, prevention and treatment.  “In the US only 2% of research funds goes to Stage 4 cancer….One study showed the American Cancer Society gave ALL stage IV cancers 2.3% of  its research budget in 2010. The Federal government gave 0.5% to stage IV cancers in 2005. “  The same is true for other organizations. “ACS, Komen, Avon, NBCC , ALL focus their funding on prevention and have NEVER defined CURE.”

Yet people are dying from metastases. “Prevention and treatment have failed to make a difference for most cancers.  Only lung and colon cancer have seen improvement…[with this type of funding.] “ CJ states.

CJ began making contacts, asking questions and collecting information.   Her quest led her to friendships and working relationships with well-known researchers and cancer advocates such as Danny R. Welch, Ph.D. and Clifton Leaf.  There are “Superb Stage 4 researchers and proposals.  But if [they are] funded at only 2%…they can’t do much with that, “ she says.

CJ’s physicians also sent other people with metastatic breast cancer to her for support.  She was shocked to find that virtually none of the support, research or activities that typify the very successful “pink” breast cancer movement extended to the metastatic breast cancer community. “People don’t like to think about stage IV. Too depressing. We’re in the closet…Breast Cancer events don’t address Metastatic Breast Cancer.  [These organizations] think it will dampen mood. No Metastatic Breast Cancer speakers, topics or literature. Metastatic Breast Cancer questions [are] avoided, “ CJ explains.    Metastatic cancer patients are not welcome at many support programs. “Newly diagnosed [MBC] patients not infrequently approach Breast Cancer groups for support.  Unfortunately, these groups often suggest to MBC patients that they are not welcome, or that they must not mention their diagnosis to the others for it would be too frightening for them in their fragile condition.  This can be devastating.”

However  CJ believes that Metastatic Breast Cancer patients are really better off with other metastatic patients.  “In all honesty,…only other MBC patients can provide true insight, advice and understanding.  Discussions concerning mastectomies, lumpectomies and getting through treatment to return to normal life are not helpful and only serve to remind the MBC patient that she has a much more difficult road ahead.”

In 2007 CJ officially established a local support program in Annapolis Maryland that within six months grew to 24 members.

Soon she was looking for ways to increase funding for metastatic breast cancer research.  “METAvivor was created to fill a critical gap in Awareness, Research and Support.  Many don’t realize stage 4  needs and the disparities in support and research.  Educating people is critical.”

Screen Shot 2013-03-24 at 7.26.33 PM

CJ and three other women who were part of the support group she had established in Annapolis created METAvivor in 2009.  “We had to be a nonprofit to raise funds.  The four of us followed the free non-profit checklist on Maryland’s state government site.  Our Goal was to do everything possible free or donated.”  And they achieved this:  METAvivor  is 100% volunteer and a 501c3.

Two of the four women who worked together to create METAvivor  died during its first year of existence.    “Patients are so devoted they work with us until weeks before death.  We would never ask or expect it, but they do.  [METAvivor is that] Critical…to them.”

One of the main problems with metastatic disease is finding the numbers.  “Numbers a HUGE issue. There is no code for Metastatic Breast Cancer. It is counted only if the person’s first diagnosis is stage IV.  There is [clear indicator] how many live with stage IV.   Others try to down the numbers. Stats are very hard to find.”  Yet even with people who are first diagnosed with stage IV cancer the figures are shocking, “One third of cancer patients die annually, most from metastases.  Stage 4 research needs one third of the research funds, not 2%.”

METAvivor expanded its support function and now helps people elsewhere establish their own support where programs are lacking. “The problem is that Stage 4 patients have unique needs.  They need dedicated Stage 4 SUPPORT.  We can combine with other Stage 4 cancer patients, but not with primary patients. “   Sadly there are only 40 support programs nationwide for MBC patients, ten of these in NY State.  “The vast majority of patients have nothing ,but MBC has far more than most stage4. It’s TRAGIC,” CJ states.

CJ and others at METAvivor are on a quest.  “For us this isn’t optional.  We are driven by a critical need and  a mission no one else does.  We can’t stop until we get proportionate research and support.”

CJ and METAvivor know that research on metastases in all cancers  is needed.  “Research for breast cancer does little to nothing for me. Research for stage IV anything DOES help me and all stage IV [cancer patients]. This is [the] critical point.  Progress in any stage IV cancer research helps other
stage IV cancers. We want stage IV research across board,” CJ states.  “This is a stage 4 problem…we need to rally the stage IV community of all cancers and have the healthy community help raise our voices … say enough already!  Help us promote 30% for 30%! They are welcome to 70% to use as they wish. No new money …need to redistribute.”

METAvivor created their ribbon in order to involve all metastatic cancer patients.  “Our Ribbon’s Ribbon_whitelinedblue/green base means stage IV. We hope other stage IV groups will use our base and replace pink with their color to show our common bond/cause.”

People with metastatic cancer need those who are not sick to speak up. “Everyone has challenges. I’m in remission and retired but help my 96year old mum and I have a husband newly diagnosed with cancer and I’m in ongoing treatment…

METAvivor Inc  is 60 percent patients and 40 percent not. All have challenges. Some live alone. Some are quite ill. Some are overworked. But all highly devoted,

We need more non-mets help pushing fairness for all terminal cancer.  It’s [healthy] people… that will help achieve parity in research.  Be vocal. Challenge organizations to increase research. “

To this end, METAvivor is starting an ambassador program.

“We will have teams nationwide, broken down into 11 regions, working on building awareness and promoting increased research for MBC and simultaneously for all stage IV cancer. …I am currently working with a very small team to build a comprehensive plan… In the meantime, if people wish to express their interest…, they are welcome to email their contact information and geographic location to me at cj@metavivor.org.

METAvivor has an extensive and growing awareness program with annual campaigns such as 30% for 30% (2011) and the Elephant in the Pink Room (2012).  It also offers donors the rare opportunity to donate exclusively toward metastatic breast cancer research and have 100% of their donation used toward that end.  METAvivor is in its fourth year of awarding annual metastatic breast cancer research grants and by the end of 2013 will have awarded more the one-half million dollars.  CJ served four years as President of METAvivor, stepping down this year to have more time to focus on her area of passion – advocacy.  She now serves as METAvivor’s first dedicated Director of Advocacy.

For more information please read  CJ’s post on 2% research http://t.co/KMdy1xO6o0 and her post on 30 for 30: http://t.co/0qCJ71tKPq

Based on March 21, 2013 transcript of #HCHLITSS twitter chat.

Brain Awareness: What are Strokes and TIAs?

 “Of 100 people who have a stroke: 10 recover completely, 25 have minor impairment, 40 will have moderate impairment, 10 will require long term care and 15 will die.” David Turkel-Parrella, MD

imgres-1Dr. David Turkel-Parrella, a Neurologist and Neuro-Intervention Fellow at the University of Toronto in Canada, knows about Stroke.  His recent research  investigates factors that contribute to stroke severity and progression.  He serves as a member of the Endovascular-Interventional section of the American Academy of Neurology.  He completed a Fellowship in Vascular Neurology at the New Jersey Neuroscience Institute.

With a clinical background combining the disciplines of neurology and radiology, Dr. Parrella is working to more quickly treat strokes, limit their severity and reduce the disability they can cause.

Ischemic-Strokes-Clots_UCM_310939_Article

“Simply put a stroke is when a part of the brain is deprived of blood and stops working.  Two main ways a stroke occurs: a clot blocks blood flow to a region of the brain, or a blood vessel bursts,” he explains.

Physicians call a clot that blocks blood flow an ischemic stroke.  Blood vessels are clogged by fat and cholesterol that collect to form a plaque.

When a blood vessel bursts, it is called a hemorrhagic stroke.   Bleeding in the brain  “sometimes …[occurs] from untreated hypertension…[or] sometimes

Hemorrhagic-Strokes-Bleeds_UCM_310940_Articlefrom an aneurysm or vascular malformation that ruptures,” Dr. Turkel-Parrella explains.  An aneurysm or vascular malformation is a widening of an artery due to weakness in the blood vessel wall.

Dr. Turkel-Parrella notes that both types of strokes can be equally devastating.  “80 % of strokes are Ischemic (from a blood clot) and 20% are Hemorraghic (bleeding)… on a cellular level, stroke, left untreated, causes irreversible neuronal death,” he says.

 The symptoms of stroke can be sudden and severe:  headache which occurs when the person is lying flat and headaches that wake the person from sleep. “The worst headache of your life is an ominous sign for a possible type of bleeding stroke called SAH.   SAH is Subarachnoid Hemmoraghe, the type of bleeding that occurs when an aneurysm bursts,” says Dr. Turkel-Parrella.  

Other symptoms can be sleepiness, unconsciousness or even coma.  Sudden changes in taste, hearing, balance, vision, coordination and muscle weakness are all signs of stroke.  “If it’s a blockage of an artery, its imperative to give clot busting drugs quickly,“ he explains.

Stroke risk factors include high blood pressure, diabetes, high cholesterol, family history of stroke and being African American.  ”The most vulnerable of society are the most at risk for stroke, ”  Dr. Turkel-Parrella relates.  

Having a stroke is higher among those who are overweight or obese, who eat too much fat or salt, drink alcohol heavily or smokers.  Birth control pills can also increase the risk of stroke in women ages 35 and up.   “Hypertension is a huge contributor to poor cerebrovascular health! But it is a modifiable one!”  Yet “things that cause strokes, hypertension, diabetes, cholesterol all have a genetic underpinning.  Aneurysms also have a familial component.  In Toronto we screen all people with second and first degree relatives with an aneurysm,”  he says.

A Transient Ischemic Attack (TIA) is a warning sign that a stroke may happen soon.  Blood  flow to a part TIA-Transient-Ischemic-Attack_UCM_310942_Articleof the brain stops for a short period of time.     The person has symptoms that are like a stroke.  “A TIA by definition means the symptoms resolve,” says Dr. Turkel-Parrella.

Imaging like  MRI (magnetic resonance imaging), Doppler, CT scans play a large role in diagnosis of stroke.  “Imaging plays a role in the acute phase: what type of stroke is it? That drives treatment decisions in the Emergency Room.  CT is the main modality. MRI is more useful when you are trying to figure out why the stroke occurred,” Dr. Turkel-Parrella relates.

“In acute stroke we give clot busting drugs or use mechanical devices to go in the brains ‘blood vessels and fish out clot.” It is important to get to a hospital, preferably a stroke center, as soon as symptoms arise.  “Time is brain,”Dr. Turkel-Parrella says,  “and if you live far away from a stroke center it can be less than ideal. The percentage of those who survive stroke yet are seriously disabled can be as high as 50 percent….  ”

Dr. Turkel-Parrella has focused his medical career on stroke and he has a very good reason.  “Stroke is the third leading cause of death in the United States, 140K people die each year from url-1stroke in the United States.  Stroke represents a national healthcare crisis, and its a condition that is treatable, but more importantly often preventable.” This is what motivates his work.

“Ischemic Stroke is often caused by modifiable risk factors, social determinants of health and improved health literacy. We need to help people get access to basic primary care.  We need to improve health literacy on a basic level.  Real access to primary care is what will make the biggest impact on preventing stroke,” Dr. Turkel-Parrella says.

Based on #HCHLITSS twitter chat March 14, 2013

Paying for care: What happens to 21 year old family members with severe autism after graduating from high school? Part 2

It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person.  If that isn’t scary, just read on.

Locating residential homes that are specifically for autism is challenging.  One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, hence NARPAA.  It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.”  There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan.  She is a world renowned authority on autism, founded the National Autism Society and founded as well as acted as director of the Autism Services Center.   She wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).  One of her concerns is echoed by Phil Blevin, Director of  Carolina Autism, is the lack of training of the people who are caring for individuals with autism.

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA).  This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this.   Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers end upon the child graduates from high school.  Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Often families are not prepared for this transition.  It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism.   Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Many of those who need residential care end up in group homes and centers that are not specific to autism.  And most group homes and other residential centers are not experienced with autism.  Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis).most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism.  Unfortunately, these behaviors are likely to be dealt with in a punitive manner which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered.  For example, lifelong provision of services is also a key difference among facilities.  When first reviewing organizations, it was shocking to discover that some facilities require clients to work.  If they are too old or unable to work, they are not allowed to stay on in the community.

More on this issue in a later post…

PTSD and Cancer Diagnosis

Reading blogs by those who have been diagnosed with cancer is illuminating.  At least for some breast cancer patient blogs, their experience has been confirmed by recently reported research.

A telephone survey of women who received breast cancer diagnosis confirms that almost 1/4 report symptoms of Post Traumatic Stress Disorder.  Alfred I. Neugut, MD, PhD of Columbia University  and colleagues reported the findings of the study conducted between 2006 and 2010  online in the Journal of the National Cancer Institute. Identifying and managing PTSD early on could help women with their experience of breast cancer diagnosis.  This is one of the first studies done to measure PTSD, the authors stated.

Thank you  MedPage Today for reporting this story.

Leading Breast Cancer Experts report on prevention of cancer through reducing exposures to chemicals and radiation in our environment. We can help to move this information forward into an action plan within the Obama administration by following a link described in Susan’s blog post. As Margaret Mead so eloquently stated, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

A4BC Founder's Blog

Yesterday I put an article in my Breast Cancer Newspaper about a federal committee of leading breast cancer experts that released a report about reducing our exposures to chemicals and radiation in our environment. Today I received an email from Jeanne Rizzo, R.N.
President and CEO of the Breast Cancer Fund stating that she is serves as a co-chair with the federal committee.

congressimagesThe report, “Breast Cancer and the Environment: Prioritizing Prevention,” concludes that “preventing environmental exposures is the most promising path to decrease incidence of the disease, and calls for a national breast cancer prevention strategy.”

The report’s first stop is the desk of U.S. Secretary of Health and Human Services Kathleen Sebelius, who must create an action plan to implement the report. This action plan can lay the groundwork for a national prevention strategy that will require commitment and hard work from the Obama administration and Congress.”

Write…

View original post 127 more words

I won’t give up…

My child is a wizard…and a dragon rider…and a super hero.  He can play all these games with such agility that it boggles my mind.  So today when s/he asked me to join in on one of the games that he enjoys, I was honored and humbled and…nervous.

Above is the first 15 minutes of someone else’s play…I crashed the dragon into the ocean, into the rocks, pretty much every place it could be crashed.  Leaning right, leaning left, I kept trying to get into the experience and succeeded–in becoming nauseous with each flip and dip.

I’m hoping that I will be able to get the hang of it…my child’s disappointment heard in deep sighs and “MOM, you have to get back to the village” said in that sing-song tone of the despondent.  Yes, hopeless…

Yet according to research highlighted in New York Times Magazine, video game playing and other types of games can improve attention and fluid memory.  Since fluid memory is supposed to peak during young adulthood, it behooves anyone whose been 29 and holding for a couple of years to get playing.

So I shall persevere, overcome and increase my brain power with Lumosity and Riders of Berk!  And beat the pants off of those other repeating 29 year old (repeating) moms out there…. I challenge you!

Guardian Angels and Mental Health

Late January I’m reminded of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students.

One day, mid-semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up.

Irritated, I put on my stern face and asked that he stay after class.

He stayed behind and waited.  Something, perhaps his guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth.

“I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.”

“In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes.

I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation.

There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  it is a gift that you can share:  with knowledge you can become an advocate for yourself and others.

Mental health literacy is vital…it *can* save a life.

Every Human Has Rights!

Over the past 8 years, Nicholas Marshall Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.  This post is a continuation of the conversation we started with Cooper in October,”Great Things Are Possible.”

As a consultant to UNICEF’s Middle East and North Africa Regional Office and as a child protection officer in Haiti, Cooper has seen, first hand, the importance of the central tenets of the human rights approach:  empowerment and accountability.

Presently Cooper is a humanitarian researcher at the FXB Center for Health and Human at Harvard University. He started our conversation with a basic definition of human rights, “Human rights are freedoms and entitlements afforded to people purely on the basis of being human,” he says.

According to Cooper, all countries have signed at least one human rights treaty.  After signing a treaty, the country has to pass a law that ratifies the treaty.  This is how human rights agreements become national obligations.

“Human rights have both rights-holders (every person) and duty-bearers (countries, as they are the ones that sign HR treaties)  Human rights approaches seek respect, protection, and promotion of human rights by empowering rights-holders and duty-bearers to claim and advocate for their rights (rights-holders) and respect, protect, and promote fulfill (duty-bearers).,”Cooper states.

Viewing heath from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  “Human rights approaches change the focus from “do this” to “you have a right to this, here’s how to claim it, and we’ll help you do it,” Cooper explains.   Participation is the difference.  It’s not a top-down approach but it involves letting countries (the duty bearers) know what they should be doing. Because of this, “Human rights approaches would, therefore, change both the message itself and to whom the message is directed : …and the desired outcome.” With regard to health communication, these are important changes to the message and the audience.

With regard to policy, the human rights approach concentrates on those who are the most vulnerable. Policies created using this approach would focus on “promoting awareness, meeting needs and enforcing compliance,” says Cooper.

Confusion seems to occur when discussing rights and health.  “There is no right to healthcare, but there is a right to health,” Cooper says.  The United States has ratified a declaration of human rights, (Article 25 Universal Declaration of Human Rights and Article 12 of the International Covenant on Economic, Social and Cultural Rights), which means that the US has made a commitment to create legislation which fulfills this right.  For example, access to affordable care of a high quality is part of the right to health.  “The government DOES have a duty to respect, protect, and PROMOTE health,” explains Cooper.

Under the rights framework we have both freedoms and responsibilities.  Suppose you are a smoker.  “While you are free to smoke, you are not free to give somebody cancer.  Giving someone cancer would mean that you were violating their right to health (maybe life).”  What if your child got lung cancer from second-hand smoke? “Under the rights framework, your child would be able to seek restitution from you for giving them cancer.”

Human rights provides a framework for advocacy.  In this case, smoking bans PROTECT the right to health of the child, while PROMOTING health generally.  Cooper adds, “hough human rights themselves are conceptually apolitical, their articulation isn’t. Nor are the policies and programs to meet them.”

Programs built from a human rights perspective might simply inform people of their rights. Others might provide legal service.  “A program must never violate rights itself. This is non-negotiable, as rights cannot be “traded off” against each other The guiding principle for non-governmental. organizations is capacity building, of both the rights-holder and duty-bearer,” Cooper affirms.

The ultimate goal of human rights is that everyone “has the ability …to live with their rights fulfilled and protected… As RIGHTS, they are not things that can be disputed. You have them because you are human.”

Good news on Metastases Research!

Just a short note “quote”…

The Answer to How Breast Cancer Invades Bone

Researchers recently solved the mystery of how breast cancer takes root in the bone. Now, the discovery has led to an experimental drug for breast cancer that has spread to the bone.

At Princeton University, Society grantee Yibin Kang, PhD, found breast cancer cells use a protein called Jagged1 to upset the normal balance of bone builders and bone demolishers. Jagged1 recruits cells that normally break down bone to dig deeper into it. This in turn releases molecules that further spur cancer growth.

“We knew the bone is a fertile soil for breast cancer to spread to. But we didn’t know why. We didn’t know how to make bone less fertile soil,” says Kang, Princeton’s Warner-Lambert/Parke-Davis professor of molecular biology. “Now that we know, the next step is to design drugs to break that vicious cycle.”

Breast cancer spreads, or metastasizes, to the bone in 70% to 80% of patients with advanced breast cancer. These malignant cells invade the spine, ribs, pelvis and other bones, causing pain, fractures and other complications. Current treatments offer symptom control but little else, Kang says. “The hope is that with more options, more combined agents, we can effectively control bone metastasis and hopefully treat it as a chronic condition,” he says.

Kang and his lab team are now working with drug maker Amgen to test an experimental monoclonal antibody (a man-made protein) that blocks Jagged1 in mice.

Kang hopes his quest in the lab one day results in lives saved in the clinic. “What we try to do in the lab is to figure out what the enemy is capable of and how cancer achieves its goal of spreading and killing patients,” Kang says. “You have to know your enemy to defeat it.”

(Please be advised this is a direct quote from American Cancer Society)

Sobering and Scary

Monday October 29, 2012 Hurricane Sandy struck the Eastern Seaboard. As it moved inland it hit two winter weather systems creating what has been called a hybrid monster storm.  As of November 3rd over 113 deaths can be attributed to Sandy on the US mainland, mostly in New York.  Tropical storm force winds were seen over the 800 mile wind and rain path resulting in fatalities in states as far west as West Virginia, as far north as New Hampshire and as far south as North Carolina.  Many are raising the question of the relationship of this mega-storm to global warming.

Josh Glasser studies the impact of climate change on public health, human security and disaster recovery at Harvard’s School of Public Health.  When discussing the topic, he turns to The Intergovernmental Panel on Climate Change the leading international body, established by the United Nations Environment Programme (UNEP) and the World Meteorological Organization (WMO)  for assessment of what is happening in climate change.   The IPCC is a body that reviews and assesses the most recent scientific, technical and socio-economic information produced worldwide relevant to the understanding of climate change.

According to Glasser, “Hurricanes have always happened, but global warming will be like accelerant on a fire.”  He explains that there is “consensus that global warming will most affect the ‘hydro-cycle.’”  The hydrological cycle, or water cycle, is the continuous movement of water on, above and below the Earth’s surface. Water molecules move from one reservoir to another:  from ocean water to the atmosphere, by evaporation and cloud formation; to condensation and precipitation as rain or solidifying to ice.

The common instrument of change in the cycle is heat exchange.  And that is where global warming becomes involved.  As described by Dr. Mey Akashah, the capacity of the atmosphere to hold larger cloud structures for longer amounts of time plays a part in this change.  Glasser agrees that there will be “more intense and frequent heat waves, floods, droughts and severe storms.”

Another impact of global warming is rising sea level.  “Sea level rising is a total wild card.  It complicates planning and makes storm surge worse,” he says.  One cause of sea level rising is melting of the ice caps.  However there is another that we don’t usually think about.  Imagine a pot of water.  As it heats, the water expands and actually rises in the pot. Now imagine the volume of water in the ocean, as it heats, it expands and rises.

Many countries are feeling the effect of the ocean water’s expansion now.  Some feel that the high storm surge during Hurricane Sandy was caused by this phenomenon.  Glasser has seen first hand, as a Fulbright scholar in Vietnam and later Bengladesh, the impact of rising sea levels on people. His interests include the link of climate change with human security, the impact of humanitarian practices, the importance of disaster recovery, adaptation planning and risk reduction.  “Many human societies have developed over time to adapt and conform to the environmental conditions in which they find themselves.  You see it in land use, housing, infrastructure, health care, recreation, voluntary migration patterns and so on.”  That adaptation keeps them safe in sometimes very difficult situations.  But when there are more frequent, intense disasters, especially in places with limited resources, people are put at higher risk. Environmental migrations are estimated by year 2050 to range between 50 million and 1 billion people.

“People have always been mobile, but the numbers are rising fast. “There are now more environmental migrants than refugees in the world. What’s more sea level rising and extreme events are likely to displace tens of millions in coming the coming decades,” Glasser adds.

How does climate change impact vulnerable populations?  Glasser explains that climate change undermines health in many ways.  It “…tears at the fabric of society–food production, accessing healthcare, the mental toll of disaster.  These impact not only human security, the ability to obtain needed resources on an individual level, but populations as a whole are affected.”

As has been seen with both Hurricane Katrina and now Hurricane Sandy, when important infrastructures are damaged, the effect can be devastating.  Glasser notes, “If the hospital or clinic is flooded out, no one is getting treated for any condition…climate-sensitive or otherwise. Imagine being an expectant mom, giving birth at home just as the monsoon floods come through.”

Glasser continues, “People the world over have adapted communities to their current environmental conditions.  Homes, agriculture, urban structure, health care, recreation, etc., are all tied to the status quo.  The crops selected, building materials, diseases to prepare for, even holidays and cultural festivals–all of it is related to the natural environment.  Too rapid change is a problem for all but especially a problem when the government is weak, or resources are rare compounding the environmental problems.”

Some suggest that people just move from vulnerable areas. Often the most vulnerable “the very young and the very old, disabled, minorities” and the other poor are in harms way.  “Cheap land is also the most marginal…living there is not always a choice,” Glasser point out. 

Additionally, there is little research on the reasons for people moving.  Likewise, the area of human rights is underdeveloped. “On the individual level promoting choice, autonomy and flexibility and freedom are important. But on population level, it may be hazardous if too many people move, or if too many people stay,” Glasser states.  These conflicting perspectives in human rights were apparent during Hurricane Sandy.   Governor Christie of New Jersey “essentially said those who stayed in Atlantic City were forfeiting all sorts of rights to protection.  Justifiably from the perspective of risk to first responders–but for many, there may not have been a realistic choice to leave.  There is a right to move but also a right to stay put,” Glasser explains.

There are no easy answers to these issues.  Global warming is likely to impact human well-being in profound ways.  Glasser sums it up, “All of this makes climate change a very sobering and scary possibility, I think.”

 

Bed Rest versus Family Survival

Language matters.  So when we talk about changing a discussion of “Women’s Health” to “Women and Health,” we aren’t being tedious.  We are being profound.*

“Women and Health” is a phrase that recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families.  It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals.

Unfortunately, many societies are neglecting the needs of women throughout their lives.  For example, every year hundreds of thousands of women die in pregnancy and childbirth.  The inequity of health care is evident by the fact that 99 percent of those deaths are in developing countries.

When women are healthier, children survive and are healthier and that means the continuance of communities.  High infant mortality is a direct function of women’s health prior to conception, during pregnancy and after pregnancy.  Even in developed countries, health disparities increase the problems in pregnancy and increase infant mortality.

Darline Turner-Lee is actively working to help high-risk mothers-to-be in the US.**  She is a physician assistant and certified exercise specialist.  Her expertise along with her personal pregnancy experience has led her to create the blog and company Mamas on Bedrest & Beyond.  “I work to educate women and raise awareness to the issues of Mother/Baby friendly childbearing….I educate women to ask questions, be aware of any new changes in their health….”

Her focus is on women who have been prescribed to bed rest.  For those who are unfamiliar with the bed rest prescription she explains, “The “reason” bed rest is prescribed is to prevent preterm delivery. High blood pressure, pre-eclampsia, cervical insufficiency, preterm labor and multiple gestation are some of the most common reasons, but there are many.”  The bed rest prescription is more common than one would think, “Each year about 750,000 to 1milion women are prescribed bed rest during pregnancy.”

In her work with mothers who have been prescribed bed rest, Turner-Lee sees first hand, the impact of disparities on women and their children.  “When working women are placed on bed rest, they risk losing their jobs, their income and family security,” she describes.  “The disparity occurs between lower income women and women of higher socio-economic status,” she notes. “Lower socio-economic status women often can’t leave their jobs, so don’t “comply” [with the bed rest prescription].  As a consequence, those women, often minority women, end up with poorer outcomes.”

But as Turner-Lee points out it is not an issue of medical compliance. “Women weigh their options-provide for their “living” family or save an unborn baby.  It’s a hell of a choice to have to make,” Turner-Lee realizes.

Although there is legislation that should protect women, the Family Medical Leave Act (FMLA) only guarantees 12 weeks of unpaid leave with job guarantee.  Turner-Lee explains, “A big problem is the lack of paid maternity/sick/family leave in the US.   In lower paying jobs, if you are out, you don’t get paid.  After that, a woman is on her own. Between losing their income, being placed on bed rest (often in hospital), financial problems quickly rise. If mama or baby has complications, the medical expenses often render families bankrupt. It’s a huge issue.”  A prescription of bed rest can, in fact, be “devastating” for lower socio-economic women and their families. For example, with a diagnosis of cervical insufficiency, women may have to go on bed rest with four and a half months left in their pregnancies. In this situation, “complying with a bed rest prescription is “the difference between having a home and being homeless and hungry.  Even women in so called “white collar” jobs, if they are unable to work, they are at risk of losing their jobs, their

Of course, increasing opportunities for good health is the best way to prevent at-risk pregnancies.  In the present environment, preventing the possibility of bed rest is “really good prenatal care, really early in the pregnancy,” says Turner-Lee.  She cites research by Jennie Joseph, CPM, who has gotten positive results in starting prenatal care at six weeks which is two to six weeks prior to when US obstetricians typically first see mothers-to-be.  “In the US, obstetricians typically don’t see mamas until between 8-12 weeks and often a problem may already be brewing,” says Turner-Lee.benefits.”

Turner-Lee points to statistics.  “The US has some of the highest infant mortality rates in the world; highest amongst indus

trialized nations and even amongst some “developing” countries.”  The Office of Minority Health, part of the US Department of Health and Human Services provides some other sobering facts about US infants:

    •  African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
    • African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
    • African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
    • The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
    • African American infants are 2 to 3 times more likely to die before their first birthday than any other group.
    • Stillbirth is more likely in African-American women than any other ethnicity.***

Preventable conditions like hypertension and diabetes, (conditions that are more prevalent in low income women) are risk factors for problems during pregnancy.  Likewise, infections that impact the fetus are also more common in African American women.

Health disparities based on income and ethnicity impact mothers-to-be, fetuses, mothers, babies, children and all adults.
Women in every society are the main caregivers of children, the elderly, the sick and the disabled. Perhaps focusing on the right to health, which according to the World Health Organization, compels governments to create conditions so that everyone can be as healthy as possible, is the best starting place.  Because assuring that women are as healthy as possible is not just about their individual health, it is about the future health of their children, the health of a nation. Ensuring this human right makes sense for society.  In the US, even bed rest, a way to possibly prevent infant mortality can actually financially destroy the mother, a possible surviving baby and the rest of the family.  Is it possible that there is another way?

* For more information on this exciting change read this discussion by Julio Frenk, Dean of the Harvard School of Public Health

** The quotes from this piece are based on a twitter chat #hchlitss moderated by Kathleen Hoffman and RV Rikard held on October 18, 2012 with D. Turner-Lee.

***Content directly from Mama’s on Bedrest gathered from the Office of Minority Health

World Mental Health Day

Today, October 10th, is also World Mental Health Day.

 “Mental illness affects all of us, but there are still many myths and misconceptions about these disorders,”

Rosalynn Carter, Founder

Carter Center’s Mental Health Program 

I am re-posting (with a few additions) a post I wrote in May.

How do we de-stigmatize mental illness?   Reframe the discussion.  Okay.

So….What is mental illness?

It is a disease of the brain.

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understand this. The brain is an organ that can get sick just like the stomach or lungs.   Funding research from this perspective would be a huge step in the process of reducing the stigma of “mental illness.”

Join the cause.  Blog about mental health today , de-stigmatize mental illness AND donate to research on diseases of the brain.

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.

E-Patient Advocacy for Rheumatoid Arthritis: Annette McKinnon

Annette McKinnon is happy with the care she gets as a Canadian citizen. “Our healthcare system covers everyone. We all pay through taxes but all are in the group.  Doctors visits, physicals, imaging, most lab tests are fully covered. I know that a serious or lengthy illness will not bankrupt me.”

Being a patient in Canada has been important since McKinnon has Rheumatoid Arthritis (RA).  RA is a chronic, degenerative, autoimmune disease.  The body’s immune system starts attacking itself, especially the membrane surrounding the joints.  It is very painful and destructive.  RA is also a systemic disease, meaning the whole body is involved.  There is no cure for it, but the earlier it is caught, the better an individual’s chances of going into remission.

McKinnon also advocates for patients with RA. “RA changed my life plan, family dynamics and career. “    She has had RA for 30 years.  When she first began to feel bad, she went to her physician but he didn’t believe her symptoms.  “My GP (general practitioner) thought I was hysterical.  I tried another doctor. That GP said take 12 aspirin a day and come back in 3 months.”  Because of the delay in her diagnosis, McKinnon has joint damage,  “if I meet you, you can see by my hands I have RA.”

This is one of the reasons McKinnon advocates for improved education and awareness, especially among providers, “Not much time is spent on the musculoskeletal system in medical school I hear so we need to bring awareness of symptoms to Primary Care Physicians.”

Since her diagnosis, treatment for RA today has improved.  Yet because of the disease’s complexity, medications used in treatment regimes are even more complex. Corticosteroids and immune suppressing medications, like methotrexate, are used.   Treatment requires sophisticated multispecialty care.  Unfortunately building a specialist care team is often left to each individual patient.

That’s why support and information sharing can be so valuable.  “I… learned to advocate starting with me.” McKinnon says. “I share information with others with RA and provide support through online groups.   [I  also do] mentoring and patient partner activity in real life.”

McKinnon is also on the Board of the Sjogren’s Society of Canada.  Sjogren is another autoimmune disease characterized by damage to the salivary glands resulting in difficulty swallowing, chewing and speaking as well as affecting the tear glands causing sun sensitivity and dry eye.  It also can affect other organs. Around 30% of those with RA have Sjogren.

Additionally, McKinnon’s advocacy “centers on early diagnosis and treatment and access to very expensive drugs.”  This is because medications are not covered by Canada’s universal system unless you are low income.  She has also advocated on a national level working to get certain drugs approved by Health Canada, “I help advocate on how the healthcare money is spent and what diseases are funded for research.”

So, though she wishes that she did not need to rely on her husband’s insurance coverage to pay for her medications, she is otherwise satisfied being in Canada single payer system.  “I hear that a health plan member in USA gets on average 33 letters a year. I get none. No paper work.“

And she feels that’s something to smile about.

This post is based on the twitter chat #hchlitss conducted on September 27, 2012.  The transcript is available.

Marijuana and Brain Development

How does one take the leap from this clip to marijuana use?  Crush’s description of Marlin’s journey through the “jellies” seems to be  the view of many  toward marijuana.  Laughing off “smoking a j” during high school and college with I “had some serious thrill issues.”

Thrill issues, risk taking or sensation-seeking are all attributes associated with the period between childhood and adolescence.  Usually risk-taking decreases between adolescence and adulthood.  (Although there are some people who are perpetual thrill seekers but they are in the minority.) What’s going on during this time period?

One review of the literature by Steinberg (2008) explains risk-taking as a feature of brain development.  Specifically risk-taking behavior occurs because of dramatic changes around the time of puberty in the dopaminergic system of the brain.  What’s this mean?  There are nerve cells in the mid brain called dopaminergic neurons that produce dopamine.  Dopamine is a chemical that controls voluntary muscle movement as well as mood, stress or experience of rewards, in fact quite an array of behaviors, including addiction.

Research suggests that the brain is not fully developed until age 25 (Lenroot, 2006). Between adolescence and adulthood (the fully developed brain) risk-taking behavior slows down as the dopamine system settles down.  This allows adults to self-regulate that is, think this through, control themselves, make considered choices.

Development is at a different pace for different people but these 15 or so years are important because of heightened vulnerability to recklessness.

So why have we taken this trip?  Because of a  study published this August in the Proceedings of the National Academy of Sciences.  This longitudinal study ,done in New Zealand, followed individuals from birth until they were 38 years old.  Participants took neuropsychological tests at ages 13 and again at age 38.  They were interviewed about their use of marijuana at ages 18, 21, 26, 32 and 38.

The findings were striking.  Those who used marijuana regularly, especially those who started using it as adolescents, showed a significant decline in IQ.  Additionally, family and close friends noticed the difference in their cognitive function.

So, where does this study take us?  Supporters of marijuana for casual use might say that IQ tests are questionable tools to base decisions on whether or not to use marijuana.  Others might point to a variety of other factors that might reduce people’s IQ, from environmental exposures to television or video gaming.

Though marijuana is an incredibly useful prescribed medication, this study may cause one to pause and wonder about it’s recreational use, especially during adolescence.  In the end, it is no laughing matter.

Kuehn, B. (2012).Marijuana Use Starting in Youth Linked to IQ Loss. JAMA.308(12):1196.

Lenroot, R. (2006).Brain development in children and adolescents: insights from anatomical magnetic resonance imaging. Neuroscience Biobehav Review 30(6):718-29.

Steinberg, L. (2008) A Social Neuroscience Perspective on Adolescent Risk-Taking
Developmental Review. 28(1): 78–106.

The Change We Need: Avoiding Harm in Hospitals

I first posted this on OccupyHealthcare September 10,2012.

The Institute of Medicine (IOM) recently published a substantial report on the healthcare system in the US.  According to the report, in the US 1/3 of patients are currently harmed during their stay at a hospital.  These harms are called Hospital Acquired Conditions (HACs).

In a 2012 article in the Journal of Health Care Finance, Nero, Lipp and Callahan analyzed 2007-2008 patient data from the New York State Department of Health’s Statewide Planning and Research Cooperative System.  Of the 4,853,900 patients whose discharge information was included in the analysis, the most frequent hospital acquired conditions was bedsores, also known as pressure sores or the technical name “decubitus ulcers.”  Their annual cost estimate for New York alone was nearly $680 million and 376,546 days of hospital care.

For the US, estimates of cost range between $6 and $15 billion annually (Markova & Mostow, 2012).  The costs in human suffering are also significant.  When Ailman et al (1999) conducted a comparison of patients who developed bedsores and those who had not; they found significant increases in hospital-acquired infections (45.9% vs 20.1%) and other complications.  Hospital costs and length of stay were greater for those who developed these ulcers.

My interest in decubiti is personal.  In the 1980’s and 1990’s my mother worked part-time in a hospital in North Carolina in quality control.  When researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that patients were getting in the hospital, that was preventable, that was painful and could be life threatening.  This was the problem of bedsores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, in 1999, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training had been discontinued, the nursing staff did not know how to prevent this ulcer from occurring, nor did they know how to treat it. Thankfully, my mother was still able to help my sisters and I find the skin care expert that had been hired previously.  Through that expert, we got the type of dressing that mother needed to promote healing.  We took over, turning mother, changing her dressing, giving her bed baths and doing “bedpan duty”.  We were there with her, night and day, for two months.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, despite her cancer.  We showed the nurses what we were doing and asked if they could use the dressing on the man next door.  Sadly, we were told that if his physician did not order the dressing, there was nothing that could be done for him.

The name of the IOM’s report is “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  In my view, continuously learning healthcare means that just because there is improvement in quality, efforts to maintain quality control cannot be stopped.  It means continuous training and monitoring.  It means dealing with this very real problem.  Getting bedsores is preventable.  Patients in hospitals and nursing homes do not have to acquire these life-threatening ulcers.  But it requires awareness, intense devotion, continuous monitoring and education.  It also requires enough people.  People who are willing and able to do the physical work, people who have the energy, time and devotion to care and people in power who remember that the patient in that hospital bed could be their mother, sister, brother, father, child, aunt, uncle, grandparent or friend.  Patient safety must be at the center of all the care we provide and it is imperative that we actively work to prevent avoidable complications in care.

References:

Ailman, R., Goode, P., Burst, N., Bartolucci, A., & Thomas, D. (1999). Pressure ulcers, hospital complications, and disease severity: impact on hospital costs and length of stay. Advances in Wound Care. 12(1):22-30.

Markova, A. & Mostow, E. (2012).  US skin disease assessment: ulcer and wound care.Dermatological Clinics. 30(1):107-11, ix.

Nero, D., Lipp, M. & Callahan, M. (2012). The financial impact of hospital-acquired conditions.Journal of Health Care Finance. 38(3):40-9.

Making a World of Difference: Climate Change and Public Health

“It is an overwhelmingly popular misconception that climate change isn’t occurring or is a natural phenomenon.  While some change is due to a natural progression, we can see that increases in temperatures are far more rapid than occurred historically.”

Mey Akashah, PhD doesn’t flinch or deny global warming but tries to face it, find answers and generate attention to the crisis.

Her journey began studying marine biology.  However she realized that, even though climate change is making a huge difference in the earth’s oceans, people weren’t really interested.  She recognized that, to make meaningful changes in the effects of climate change on the environment, she would need to change. She shifted gears, going to graduate school in global and environmental health and hasn’t looked back.

Now, as a public health professional and award-winning human rights activist, Mey Akashah tries to generate the attention climate change demands.  Her academic publications include compensation for human rights abuses, the impact of climate change and environmental degradation on conflict and sustainable livelihoods, and the health impacts of mercury contamination in the Arabian Gulf.  Towards this end, Dr. Akashah participated in a twitter chat on September 13, 2012.

The chat began with the ozone layer.  Chloroflourocarbons, known agents of ozone layer depletion, are banned.  Yet new evidence published in August describes previously unknown mechanisms of ozone depletion.  Dr. Akashah featured this research by James Anderson and his colleagues on her blog.  Apparently there is a connection between climate change, clouds and cancer.  “Climate change makes storms stronger and more frequent. Strong storms press water into the ozone layer. Water vapor breaks down ozone.  Less ozone equals more UV rays reaching us.  More UV rays equals more skin cancer.”

The cancers of greatest concern are melanomas in areas under the ozone hole.  Countries seeing higher rates of melanoma are Australia and New Zealand.  Since the research was based on observations of storm phenomena over the United States, it can be assumed that this situation is occurring the world over.

Increases in cancer are not the only health concern the world faces.  “Unfortunately, most health effects have begun to be seen already.  The question is one of intensity and frequency.  The World Health Organization (WHO) estimates that anthropogenic climate change already claims over 150,000 lives annually.”  Some of the diseases linked to climate flux include “cardiovascular mortality and respiratory illness due to heat waves, altered transmission of infectious diseases, and malnutrition due to crop failures.”

With a bow to naysayers, Dr. Akashah states “there is uncertainty in attributing the expansion or resurgence of diseases to climate change.  But, this is largely due to the lack of long-term, high-quality data sets, as well as changes in immunity and drug resistance.”  However, Dr. Akashah points out, “we do know enough to know that it is a problem and that we need to act on it now.”

What is being seen is “injuries due to extreme weather, air pollution-related effects : increased infectious diseases (water-, food-born like cholera, vector-born, for example, malaria, and zoonotic, that is, any disease from animals to human and vice versa like rabies.”

Asthma is increasing.  In fact, in Florida it is due to an unusual source, “increased algal blooms (Red tide).” The progression of the health issues will change over time.  “Some of these changes will have a slow onset. Initially, we will see higher acute asthma attacks, heat stroke, etc.  Over time, these occurrences will become more frequent and more severe. This increase in intensity will coincide with more frequent severe weather events and natural disasters.”

Who are the most likely to be affected? “As per usual in situations of increased stress, it is the most vulnerable who will suffer most severely.  We can make the correct assumption that these will be the poor, disenfranchised, older, and younger members of the population.”  Climate change impacts those who are geographically vulnerable.   This includes people who are in extreme climates like desert nations and those in arctic climates. But it also includes areas of low topography, like island nations and nations with high water tables such as Bangladesh.

Yet another locale that is vulnerable are sprawling urban areas.  These areas “where trees and turf have been transformed into asphalt,” (cities include New York, Los Angeles and Dallas) are seeing what is called a “heat island effect.” What this means is that “these changes cause urban regions to become warmer than their rural surroundings, forming an “island” of higher temperatures.”

Why should health care workers be aware of the health effects of climate change?  According to Dr. Akashah, “We need healthcare workers to be aware of these changes… to help track health trends and to identify and spur health communication towards vulnerable populations.  But we also need their help as disasters and acute crises become more frequent.”

There are actions that can be done to help and Dr. Akashah is taking steps.  “Most of the work I do now involves climate change adaptation – facing the inevitability of climate change in poor communities, especially.”   She is attempting to create low cost solutions to flooding, drought and other consequences of climate change.   “Often the best ideas come from the communities, themselves,” she states. “Our job is often to disseminate the knowledge.  I think giving people a voice is the most important hurdle.”

To illustrate, Dr. Akashah told participants, “An example of the dissemination of community-originated ideas is raising ducks instead of chickens in flood-prone areas.”  Dr. Akashah notes the many studies show the importance of listening and supporting communities, “especially when women are empowered with small funds for sustainable harvests…it improves both maternal and child mortality and increases the proliferation of sustainable farming practices.”

Action is important.  Dr. Akashah suggests paying particular attention to sustainable development.  “Sending donor funds to small sustainable entrepreneurships in these areas” can make a world of difference.

For more information on Mey Akashah, PhD  please see her website: Mey Akashah

For a full transcript of the #hchlitss twitter chat please see: Health Communications, Health Literacy and Social Sciences blog.

Responding to Komen’s New Awareness

MBNCBuzz just posted this advertisement by the Komen Foundation.  It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign.

The irony that Susan Komen died of metastatic breast cancer is not lost on those who live with it.   Recurrences of breast cancer are not uncommon.  Close to one-third of the women considered “cured” of breast cancer will suffer from a spread of the cancer called metastases.  This can happen many years after their initial diagnosis.  Over 90% of breast cancer deaths are due to the spread of the disease to other parts of the body, such as bone, lungs, liver and brain.  Although there is no exact numbers collected, a rough estimate is that around 162,000 women are living with metastatic breast cancer in the United States.  There is no information collected on historic trends.  Treatments to prevent metastases do not exist.  Treatment to eradicate metastases do not exist.

There has been much discussion in the cyber world of the foibles of the Komen Foundation.  One of the best descriptions of the use of monies by Komen was written by an financial analyst Rachel Moro in her blog The Cancer Culture Chronicles.  She explains in pie charts and graphs the intricacies of Komen’s spending and reveals how in 2010 only $66 million to research in a year when its total revenues were $389 million.

Those who live with breast cancer wonder where all the money that has been raised has gone.  They are concerned that funding for research to cure breast cancer has not been directed at what actually kills breast cancer patients, metastases.  So many loved ones have been taken by metastatic breast cancer.  One of those who has been lost is Rachel Moro.

This advertisement does not come close to the whole story of Bridget Spence’s life with breast cancer.  Her most recent post on My Big Girl Pants is a poignant reminder of the suffering experienced by those who have metastatic disease.  As of August 28, 2012 Bridget’s cancer has spread.  She is not able to be a part of a clinical trial.

The National Breast Cancer Coalition has set the year 2020 as the end of breast cancer deadline.  The organization has put together a Blue Print  for the End of Breast Cancer.  The Coalition is bringing together researchers in a series of summits.  Suggestions for research provided by just one of the summits include developing technologies to detect the first signs of metastasis . Another suggestion is to do longitudinal cohort study, to follow women from the time of diagnosis, comparing those who develop distant metastases with those who do not.  A third idea is to do this in conjunction with tissue collection and genome sampling.

Funds from the Komen Foundation could be used for any of these ideas.  As Ginny Knackmuhs stated in her post the best copy for this marketing campaign would be

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

Please look at all the links to blogs of women who are trying to make a difference.  Perhaps putting more pressure on the Komen Foundation to partner with NBCC or communicate with MBCC is in order.  Ask yourself what you can do to be a part of the solution.  This effort to save those with breast cancer needs ideas and action.

Parents Take Notice: Seclusion Rooms

This is beyond disturbing. Does anyone from the school(s) explain the length of time rationale? I mean, don’t get me wrong…the padded room is ridiculous enough, but more alarming is the length of time a child is placed in this type of room as a  ‘time out’ for their behavior.

Most childhood experts agree that the 2-5 minute rule is sufficient enough time to calm down any unruly behavior. After that, a ‘time out’ isn’t even effective.

It was a horrifying experience and what started my investigating into it was the length of time. We now have in place time limits as to what they can do and for how long and when a call is to be made to us. I would rather come get my son than have him be subjected to such treatment.

This absolutely sickens and frightens me! My child’s summer program was in a school building in [name removed to protect child] that had one of these padded rooms. We only found out about it after a note came home the first week stating s/he had been placed in time out for over an hour because s/he wouldn’t comply. I was livid and shocked that my 6 year old, whom I had never been told prior of such issues, was in any time out for that length of time. When I went to the classroom to see where this time out took place (it was in a makeshift seclusion area with three walls and a mat higher than his/her head, for the fourth) was when I saw this padded room. I was told that s/he wasn’t placed in there because another child was already using it. They told me that s/he was in for so long because s/he kept crying and trying to kick the mat down. Well, hello, s/he’s 6 years old and mostly non-verbal! Wouldn’t it make sense that s/he would be scared and react that way? Needless to say, we kept major tabs on them for the rest of the summer. It’s very sad that this is how some are treating our children, special needs or not. I’m not sure what we can do but keep tight eyes on them and make it known that we will not tolerate this treatment. It’s just another scary part of letting our children, especially those without their own voices ,out without us. I hope something is put into place to stop allowing this.

These stories are not uncommon and they are covered in the press because they are so compelling. Never covered are the stories about the trauma kids suffer everyday from being forced to endure years of failure, humiliation, and rejection because their schools refuse to provide them with the services they need in order to learn. 

The above comments in Italics are only some of the comments made by real parents in Massachusetts and over the United States over a truly disturbing development in “care” of our children.   It is “seclusion rooms.”  Please read this description on the opinion page of the New York Times.   This is occurring all over the US.  Here is another story about seclusion rooms.  Then sign this petition.  We parents need to act.

The photo above is from CAIC .

Patient Safety: Costs in Healthcare

For many years my mother worked part-time in a hospital in North Carolina in quality.  In researching cost and quality issues, she found that a significant amount of money and time was spent on a problem that was preventable.  It was a problem that patients got in the hospital.  It was painful and could be life threatening.  It was bed sores also known as pressure sores.

She spent an enormous amount of time trying to educate the hospital administration, nursing staff and fellow physicians in the need to prevent and treat bedsores.  She made some inroads:  the hospital hired a skin care expert who trained the staff.  But in the end, budget cuts reduced or eliminated jobs in quality control at that hospital.

One of the saddest and most disturbing ironies of her story is that, when she was a patient, dying of metastatic breast cancer in that hospital, she got a bedsore.  Because training was discontinued, the nursing staff did not know how to prevent this, nor did they know how to treat it. My mother was able to help my sisters and I find the skin care expert that had been hired.  Through her, we got the type of dressing that mother needed to promote healing.  We took over,  turning her, giving her bed baths and doing “bedpan duty”.

There was a patient in the next room over who had no family.  He also had a bedsore and we could hear him crying, actually suffering from the treatment he received.  My mother’s bedsore healed up as we took care of her, even though she had cancer.  We showed the nurses how we were caring for her and asked if they could use the dressing on the man next door.  Sadly, if it was not ordered by his physician, there was nothing that could be done for him.

The Institute of Medicine has just put out a substantial report, 45o pages, which describes what is wrong with healthcare in America.  It is called “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America.”  Continuously learning healthcare means that just because there is improvement, efforts in quality control cannot be stopped…it means continuous training and monitoring.  According to the report, in the US 1/3 of patients are actually harmed during their stay.

There are efforts to help.  Campaign Zero is an effort to “provide safety strategies to patients and their family-member advocates to prevent medical errors.”  OccupyHealthcare supports promoting patient safety to reduce healthcare costs.  Take a look at their websites and take this survey.

To your health: Music!

I’ve been singing something a lot lately.  It’s silly really but it makes me feel better, keeps me going, even gives me courage…

why does this little ditty work?

Or why do I feel peaceful when listening to this piece of music?

I went looking for a journal article. Just to prove to myself that there was something in this sense of well-being.  Here it is.  In 2008 a group of physician researchers convinced 60 patients who had just had a middle cerebral artery stroke (they were “in the acute recovery phase”) to take part in a little experiment.  At random, the patients were placed in three groups, a music listening group, a “language” group and a control group.

Everyone took neuropsychological assessments, cognitive tests and quality of life at the begining, at 3 months and at 6 months after their stroke.  With all the testing its a wonder that only 6 patients dropped out of the project!

Everyone received the same standard of medical care and rehabilitation that they needed.  The differences were the listening assignments.  The music group listened to music daily, the language group listend to audio books daily, the control group were given no listening material.

Here’s the cool part.  The music group had significant improvement in verbal memory and in focused attention as compared with the other two groups…AND they were less depressed and confused than the control group.

So with this one journal article, I say: sing, turn on those mp3’s, radios, cds, even if you are still in the dark ages,  tapes, 8-tracks or records.  Have a blast with a tin penny whistle, a guitar, a piano, a cello, a french horn….It’s great for your health!

Sarkarmo, T. et.al. (2008)Music listening enhances cognitive recovery and mood after middle cerebral artery stroke.  Brain: The Journal of Neurology, 131(3). 866-876

Amazing Gratitude

I feel lucky when I find amazing quotations….

“I wanted a perfect ending. Now I’ve learned, the hard way,

that some poems don’t rhyme,

and some stories don’t have a clear beginning, middle and end….

Life is about not knowing,

having to change,

taking the moment and making the best of it,

without knowing what’s going to happen next.

Delicious Ambiguity…”

                                                                                 Gilda Radner

It is very important to understand that life is change, constant change.  When you are young, permanence is important. As you age, you see the beauty in the change.  Without rain, wind, this beauty would have not been born.  We are also born and reborn through change.

Here is yet another wonderful quote to round out what Gilda Radner says.

“You gain strength,

courage,

and confidence

by each experience in which you really stop to look fear in the face.

You must do the thing you think you cannot do.”

                                                                    Eleanor Roosevelt

Both of these amazing women lived their lives to the fullest and did the things they thought they could not do.   I post them here to remind myself, to delight in their wisdom and to express gratitude for their words.

Cancer Language: Erasing Reality

culture:  the integrated pattern of human behavior that includes thought, speech, action, and artifacts and depends upon the human capacity for learning and transmitting knowledge to succeeding generations  Merriam-Websters.

The first  Sunday in June is set aside as National Cancer Survivorship Day.

It is described on the website as “an annual, worldwide Celebration of Life,” as “a day to unite together in a show of solidarity of collective cancer survivorship.”

Yet how do people who have cancer feel about this day?  A large number of bloggers have answered that

question.  Yvonne Watterson of Phoenix Arizona is one of those bloggers. She is part of a large cyber community, bloggers and twitter activists who tweet with the hashtag #bcsm.  “I have been educated by amazing bloggers. I knew nothing of metastatic cancer until #bcsm.”

With no family history, negatives on all her mammograms, and a love for fruits, vegetables and exercise, Yvonne was caught off guard by her diagnosis of breast cancer on November 11, 2011.  As she states, “I used to complain about the pace of life as a woman trying to play equally well the parts of mother, wife, friend, and boss.”   Not anymore.  And since that day she has written about her experience on “Time to Consider the Lilies.”

One of her fellow bloggers is Marie Ennis-O’Conner.   In Journeying Beyond Breast Cancer  The stimulus for this posting was the media’s coverage of Robin Gibbs death  ‘Robin Gibbs lost his long battle with cancer.’ In Why Words Matter,  she asked other bloggers the question, “Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?”    Yvonne took up the challenge to try to write about the language of cancer.

These women with breast cancer are trying to bring awareness that the terms, “battle,” “winning,” and “survivor” are all the part of the language of the cancer culture.  As Yvonne states, “Language is inextricably tied to culture,

and a definite cancer culture has evolved with a language all its own…There are so many messages out there suggesting that perhaps I chose to take on a battle and then did something to defeat an opponent.”  One of the most unsettling aspects of the language of this culture is the exclusion that so many feel.

“Those who are dying or have died are described as ‘losing’…  I don’t think we can really choose not to be victimized by cancer. It’s an unexpected assault, defying explanation.”

Yvonne believes the media treats breast cancer differently.  “…Breast cancer…has been sanitized by [the] media.  Too many pink euphemisms, myths and war metaphors are attached to cancer.  Is this a concerted effort to conceal the reality of it?”  Yvonne asks.

“I almost cried when I read Marie’s words about [erasing those who are dying],” says Yvonne. “It reminds me of a post I discovered by someone identified as Kelly K. Here it is:

“With no family history, no positive genes, I was diagnosed with stage III lobular triple positive breast cancer at 29 and mets [metastases] at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours …being interviewed for a video..[Komen] do[es] about the honorees’ breast cancer story…. Komen edited out every reference to my mets in the video….If that isn’t pink washing, I don’t know what is…”

Setting aside a day for “survivors” may seem innocuous to some but not for many in the breast cancer blogging community.    As Yvonne points out,  it “seems so insensitive and disrespectful to those who have been killed by the disease or those who are unable to live without being shackled to it.” For clarification Yvonne explained that the word “’Survivor’ …seems to focus on a stage of the disease that is more ‘socially acceptable.’ The often harrowing stories of those who are living with metastatic breast cancer are rarely publicized by mainstream media.”

In addition to erasing the fact that breast cancer spreads in 30% of those who are diagnosed, integrated in the culture of breast cancer is  “a wholly dreadful expectation that you should be more cheerful if you got the ‘good’ kind of cancer.”  Likewise guilt is part of the cancer culture.  “‘Prevention’ is wrapped up with ‘surviving’ and tends to make me think I could have done something to prevent the diagnosis.”

Somehow those with cancer must be like the contestants on the reality show “Survivor.”  They must outwit, outplay and outlast cancer.  Second guessing themselves is the fate of those living with this cancer culture.  “I  am still indignant about cancer showing up in my life and I am afraid of it progressing. Before the diagnosis, I hadn’t given it a second thought … it was the thing that happened to other people, perhaps women who missed their mammograms or who had a family history, but not to me. Why me? And so I go back to thinking I may have caused it,  which I know makes no sense whatsoever, but I can’t help it.”

So what word does Yvonne believe encompasses why one person has cancer and another doesn’t or why one person’s cancer spreads and another’s doesn’t.  “I don’t know the “right word” for those of us ensnared in the complexity of  cancer. But it seems more to do with ‘luck.'”

In her post,“he not busy being born is busy dying,”  Yvonne draws parrallels between avoiding the reality of cancer and escaping the “troubles” in Northern Ireland.  “I relate my experience with cancer to growing up in Northern Ireland. We didn’t live in fear every minute but knew we were lucky.’Devices of Detachment’ by Damian Gorman explores how Northern Ireland’s people distanced themselves from

junecaldwell.wordpress.com

violence. Seems we do same with cancer.”

I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among …
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.

#BCSM and the blogger community have been a lifeline for Yvonne.  “Were it not for this online community, I know I would be quite lost in the culture of breast cancer.”

There she has support and a place free of cancer culture expectations,  “I am so grateful for the solidarity and the safety I have found within the blogging community.  I think we all cry out ‘Why?’ and our collective attempt to see that this question is answered is powerful.  I believe we are unified in our search for answers to questions we are afraid to ask within a world that seems to ‘celebrate’ those who drew the long straw… But, for me personally, saying I survived cancer would be like saying I survived growing up in Northern Ireland. I would never say that. I would say that I was just luckier than others.”

Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.”  (Luke 12: 27)

Blogging for Mental Health: Reframe the Discussion

Today I am responding to the call for bloggers…

Join us on Wednesday, May 16, and publish a post on your blog about mental health’s importance, how we can diminish stigma, or the challenges of making lifestyle and behavior changes. Tell your story. Share your experience. Mental health affects everything we do. No matter what you regularly blog about, there’s a way to incorporate mental health.

When I think of ways to de-stigmatize mental illness is to reframe the discussion.  What is mental illness but a disease of the brain?

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understanding that the brain is an organ that can get sick just like the stomach or lungs and funding research from this perspective would be a huge step in the process or reducing the stigma of “mental illness”.

Light A Lamp

http://katscafe.org/wp-content/uploads/2012/03/Bobby-1-Kind.jpg

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.

Fighting the Stigma of Mental Illness

Suicide has increased (largely due to the prolonged poor economic conditions) [Medical News Today]

90%+ of those who die by suicide have a diagnosable mental illness. [National Institute of Mental Health]

One out of five people are dealing wth a mental illness in any given year… this means that

EVERYBODY KNOWS SOMEBODY who is living with a mental illness!

Of the 20% living with a mental illness, many haven not received any treatment largely due to the stigma!

Alzheimer’s Disease

When you think about yourself…you think of your personal characteristics, how you look, how you feel.   And you think about the people you have known, your family, your friendships, locations,  where you have lived.  All those memories that make you, *you*.

http://www.effective-time-management-strategies.com/images/focus_on_the_family.jpg

Your body’s most important organ weighs just 3 pounds.  The brain.  The storehouse of memories.

More than 5 million Americans are losing their sense of who they are.  They are losing themselves.  Fifteen million Americans are watching this happen, losing their loved ones slowly.  They are the caregivers.

Alzheimer’s is a terrible, terrible disease.  For a terrific description of our brain and what happens during Alzheimer’s, go to the Brain Tour.  After you’ve had a quick review on that site, take a look at this video  (unfortunately not developed with Plain Language in mind) which also describes the processes.

Memorial Day Weekend 2003

At four in the morning, she got a phone call from her sister-in-law, “Your husband is in the Neuro-Intensive Care Unit here.  You better come right away.”  She hurriedly gathered her 2 year old son and drove for two hours in a daze.  At the hospital, her husband was on oxygen, had tubes coming in and out of his body and was semi-conscious.  Family members were called and coming from all over the country.  Bewildered and confused she kept asking herself, how had all this happened and why?

Percent of adults who binge drink per state

Recently the Centers for Disease Control published a study  about binge drinking in the United States. According to the report, there are more than 38 million US adults that binge drink.  This over-consumption of alcohol occurs about 4 times a month with as many as 8 drinks per binge.

Binge drinking is defined differently for men and women.   For men the number is 5 or more alcoholic drinks or women 4 or more drinks within a short period of time is binge-ing.

The average largest number of drinks consumed by binge drinkers on an occasion

Although the 18-34 year old age group contains the most binge drinkers, adults 65 and up binge drink the most often.   Another interesting fact is that the income group with the most binge drinkers makes more than $75,000.  Yet those earning less than $25,000 drink the most during binges and binge drink the most often.  Finally, most of the people who drink and drive are binge drinkers.

A traumatic event is obviously something out of the ordinary.  According to experts, we all have “templates” created by our minds.  They are our “expectations,” what we assume will happen based on repeated past experience, basically the established routine. You don’t  have a “template” for a traumatic event. It is completely random, outside anything familiar.  That means it requires a lot of cognitive energy to interpret.

At 4 in the morning, my friend’s normal routine is to be in bed, fast asleep.

Her husband survived the automobile accident with the 19 year old girl who’s blood alcohol level was .19%.  That 19 year old ran a red light and T-boned the other driver’s car.  She’d been binge drinking and  she walked away from the accident unscathed.  He still lives with PTSD and physical results of the accident.

Resilient?

Just a random thought…

Have you heard people say

Children are resilient…they bounce back…don’t worry about them…?

I have and I just want to say to those people

If children are so resilient, why are so many adults in therapy?

Save A Life

This time of year reminds me of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students. One day, mid semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up. Irritated, I put on my stern face and asked that he stay after class.  Something, perhaps a guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth. “I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.” “In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes. I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation. There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  is a gift that you can share; with knowledge you can become an advocate for yourself and others. Mental health literacy is vital…it *can* save a life.

Motivated by Love

Dr. Susan Love’s Breast Book  was our “go-to” book when my mother was diagnosed with breast cancer.  We were able to understand the pathology reports because of it.  I know that we (my family of sisters) were all reassured by knowing there was someone “out there” researching and trying to find out more about breast cancer.  She has done so much to teach about breast cancer.

Now Dr. Love is trying to connect researchers with women.  An Army of Women

That’s right, if you have two X chromosomes you can participate!  She wants 1 million women to participate.  You don’t have to have had breast cancer, or even be related to someone who has had breast cancer, to participate.  All you need to do is sign up and answer a few emails a month.  I’ve signed up and I hope you will consider signing up as well.

Here is a video created by a twitter friend, who is a breast cancer survivor, that explains more about it.

Dance Like No One’s Watching

Do you live each moment unflinchingly?  Do you taste life the way you do the last bite of your favorite food or savor  its essence as you would the fragrance of summer’s final gardenia?

Crisp…the deep blue of an October sky…exhilarating…the ocean spray on a winter day… vibrant…the ecalls of cardinals in April…fresh…the laugh of a toddler

What if you were with a group of people who are all present…all noticing?

What if you were with a group of people who were all searching for three words to express this sense of be-ing and capture it?  Instead of New Year resolutions, finding three words to live by…

That’s what happened January 2, 2012 ….Soul Speech.

When you hear soul-speech, or in the case of a tweetchat, read and interact with people whose hearts are singing, you are lifted up and changed.

Soaring the stratosphere, the group that tweet under the hatchtag #bcsm, reached for Jupiter as each shared the three words that they will use as guideposts for 2012.

Stales: T3: Cancer’s taught me that the vision and goals will always change. Very few things in life can be “planned

Itsthebunk:  I’ve had it 3 X since 1994, so there’s been a LOT of evolving & personal growth. Still hard2 figure out where it fits in my “identity

Ihatebreastcanc: I used to think bc happened to “older” people or “other” people. But not me.

Bcsisterhood: T3: I was the girl who did EVERYTHING right & I still got breast cancer. James’s death again reminded me the best laid plans go south

#bcsm stands for breast cancer and social media…many of the participants have had cancer in one form of another…although most have had or are experiencing treatment for breast cancer. Some participants are or have been caregivers of someone who has cancer.  The participants of #bcsm are welcoming and not picky…they are supportive of each other and anyone else who wants to participate.

Their three words have meaning;

JediPD: “Serenity” covers all: conquers fear[,] builds courage[,] inspires elegance and calm

Lauriek: “Love”, “hope”, “bravery”

BethlGainer: Peace, perseverence, courage

JackieFox12: Mine are create, nurture, appreciate. I love this three-word concept. Resolutions are too much like homework.

BRCAinfo: love community peace

DrAttai: : My words were resilience, rejuvenation, and serenity

MaverickNY: T1: mine are rebuild, refresh, renew

BCsisterhood: Three things you need to survive most anything: God, guts & perseverance.

Brandie185: 3 words … I’m bad at this kind of thing, but I’d go with celebrate, enjoy, heal.

Now, pick one of your 3 words… and expand on that… What does that word mean to you and your vision for 2012?

jodyms: Discernment: making the most of what matters. Don’t sweat the small stuff

itsthebunk:I’ve used 2, 3-word phrases, which works 4 me. It’s all about emerging from the past & being back out in the world, building anew.

JediPD: We all live lives of uncertainty. Have Long term goals and short term plans. Buy green apples. Watch the sunrise. Smile. Live!

BCSisterhood: combo of “courage” & blind faith, & ability to *really* feel that I can have “it all” too. Being the phoenix & soaring

BCsisterhood: RT @jorunkjones@AllThingsCrgvr Yes, I hope to giggle my way through much of this year. Giggle, half full glasses & an open heart

When asked about making resolutions…

Bcsisterhood: @stales T2: We all have the resolution to live life and be healthy, but the truth’s a little scary because it’s out of our hands

Debmthomas: @stales T2 looking at a whole year can be daunting to anyone, ESP cancer survivor, so think for the next 24 hrs I will do …..

Annwax: @lauriek There is no reason why you asking to live well in longer terms, That is the human nature, and everyone wants that

Jackiefox12: T2 I don’t know if resolutions were harder to keep as survivor but I know they didn’t get easier. I’m not a fan of resolutions

Jodyms: T2: Each year makes the resolutions — or the three words – become more meaningful. Done with anything that’s extraneous

Chemobrainfog: T2 goal setting, yes I have goals but I still try to stay in the moment.

Jackiefox12: @BCSisterhood You know what they say, If you want to make God laugh, make a plan. But plans are important.

stales: T2: I set a mini one each night: That I get up the next morning, put two feet on the floor, & go

BCsisterhood: I’ve opened my heart to the possibilities of a new year & I’m looking forward to being surprised, pleasantly, I hope

Allthingscrgvr; T2 One day at a time, one foot in front of the other

How has (or did) cancer change your vision of yourself? Have you developed a new one yet?

Feistypbluegecko: T3 and I know longer take so much for granted, am more proactive

Jodyms: @JediPD I think we are, too:) I love watching what happens here every Monday. Cancer stinks. But talking about it w/friends rocks.

Bcsisterhood: @jackiefox12 Our resiliency knows no bounds. Mankind can, and does, survive the most horrendous things

Feistybluegecko:  Some goals can help us, building our strength for the times that might not be so easy, and giving us heart for when times are good 🙂

Annwax:  Life is a roller coaster ride, thr r times when u are on the top, and then u are on the bottom, you must stay on the ride of wellness

Feistybluegecko: For me, having these goals has been a reminder to make the most of good times, appreciate the good things

Annwax: Finding contentment in what you have, may help the uncertainty of what might come.

Jodyms: @talkabouthealth @jediPD – this is something @being_sarah and I discussed earlier: take time for tea, and looking for Jupiter.

Stales: FYI, jupiter is just below the moon tonight, go look!

Jackiefox12: T3 I learned I’m more resilient than I thought. And less squeamish 🙂 not sure that’s a vision!

Debmthomas: @jodyms love that, I write out what my “perfect week” would be like, what elements I need to feel good, then work them in

Jedipd: What a wonderful family of friends!

Chemobrainfog: just saw Jupiter wow!

Feistybluegecko: T3;) cancer shook me to the core, confronted me with reality of mortaity, made me take stock so I decided to recalibrate and refocus

Lauriek: T3- So much changed when I got cancer. Still struggling to find the new “vision” – 6 years post diagnosis and 5 years post mets

jackiefox12: My advice if in tx: it’s part of you, not all of you. You have love & laughter, family & friends. Be sad or mad or glad but be you.

Debmthomas: @stales …I was just thinking tonight that any day can be the first day of a new year, each day has great potential

Stales: Let’s make a plan to revisit our Three Words for the first #bcsm chat in July of this year! Okay? Deal!

Stales:  Good night, Moon! RT @chemobrainfog: Good night, Jupiter?

And they have fun!***

Does your soul speak?

Heart Song, Soul Speech, Dancing like no one’s watching…try it.

** My three words Dr Attai

***Shaping 2012 with 3 words

*** I can’t do it justice here.  Please visit the website to read the transcript!

Hunger and Health Literacy

Do you believe that a child is personally responsible for going hungry over a weekend?  The thinking person would say, of course not.

  •  Did you know that when a child goes hungry over a weekend, they are not able to learn until Wednesday afternoon?
  • Did you know that children facing even moderate nutritional vulnerability are hindered in their cognitive development?
  • Did you know that hunger can:

                           … slow growth…

                           …increase illnesses, like colds and

                               infections…

                           …lower concentration and

                               alertness in school…

                            …inhibit brain development?

OK, these are the results of children going hungry over a weekend.  There are more than 17 million children in the United States at risk of hunger.

Are those children personally responsible for what is happening to them and their brains and bodies?

Children who have had this happen do not recover the lost cognitive capacity, lost health, lost school time.  Reasonable, otherwise generous, people suggest that growing up poor should not be an excuse for poor choices.

In a recent article in Time Magazine, “Child hunger is robbing us of the best of America’s imagination and ingenuity,” said the report’s author, John Cook, Ph.D., of the Boston Medical Center and Boston University School of Medicine, a nationally-recognized expert on child hunger. “Sustainable economic recovery depends on freeing children of the burden of hunger and malnutrition and supporting their optimal growth and development.”

Unfortunately success and failure in the US are too often attributed to the individual.  We become so focused on individual responsibility that we forget other realities.  For example, under-nutrition before the age of three fundamentally changes the neurological architecture of the brain and central nervous system, harming a child’s ability to learn.  If the brains of children are harmed by hunger and if we want to prevent poor health choices and health behavior in adults, then we cannot let anyone grow up in socio-economically disadvantaged situations that include short rations.  That is the only way to fairly expect decision-making that is healthy.

“The impact of child hunger is more far reaching than one might anticipate. Child food insecurity creates billions of dollars in costs to our society. Child hunger affects a child’s health, education and job readiness,” said Cook. “Our best universities are graduating more students from other countries and fewer from the U.S. because we are failing to prepare our children to learn and develop their best skills, creativity and abilities.”

There are things you can do to help!  One mom saw a need in Guilford County, North Carolina and started BackPack Beginnings.  This 100% volunteer organization is trying to reduce childhood food insecurity, one child at a time.  Check out the website, Feeding America and take action!

Women, Care-giving and Health Literacy

Health literacy is essential to care-giving in the 21st century. The term health literacy is confusing because we can be highly educated yet still have poor health literacy.  So what is health literacy?  It’s about understanding complex terminology.  It’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

Health literacy is important for us as healthy women, but is it also critical for our family. As women, we are the caregivers in the family. According to a 2001 study, 80% of moms were responsible for choosing their children’s doctor, taking them to appointments and pursuing follow-up care. Moms were also responsible for making health insurance decisions and for caring of the extended family.

What happens when women are not health literate? We are less likely to receive preventative care, such as a mammogram or PAP smear. If we don’t seek important screening tests, we find diseases like breast or cervical cancer at later stages.  Indeed, women with low health literacy are more likely to have chronic conditions like high blood pressure, diabetes and asthma and have difficulty managing these conditions.

Women with limited health literacy often lack knowledge or have misinformation about their body. Without this knowledge, we may not understand how and why diet and physical activity are important in reducing the risk of certain illnesses and conditions. As the ones who take on much of the dietary responsibility of families, we need to know what is good for all of us and why.

If women are not health literate, we may also miss important information during critical health decision-making. In situations that are highly emotional, such as a diagnosis of cancer, it is difficult to recall and understand what has been said. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them.

If one is not health literate, the situation may be more dire. In one study, 80% of breast cancer patients with low health literacy made final decisions about their therapy after only one visit with an oncologist. When researchers compared these patients’ expectations about their  chance of a cure to that of their oncologists, 60% of the women had overestimated their chance of a cure by 20% or more.  While overestimating one’s chance for a cure might not be a bad thing, not getting a second opinion could be disastrous.

A common complaint is that physicians do not explain illness and treatment options in easily understood terms. There is often a mismatch between a patient’s and physician’s expectations and understanding.  Again, studies detail patients’ misunderstanding of common medical terms. When patients were tested for their understanding of words found in transcripts of physician-patient interviews a large variation in understanding occurred. While 98 percent of patients understood the health term vomit, only about one-third understood the word orally, 18% understood malignant and just 13 % the word terminal.  In this same study, the physicians thought they were actually switching to everyday language when communicating with patients.

Unfortunately those with low health literacy are less likely to ask questions of their physician. This is tragic. The people who need more help actually receive less. What can you do to become more health literate? Read and learn about  your health condition. Talk to other women with similar conditions. Talk to your doctor, nurse and other healthcare professionals. While at the doctor’s office, you can try the simple technique called:

Ask Me 3.  The program encourages patients to understand the answers to three questions:

“1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?”

Taking these three questions with you during a doctor’s appointment, writing down the answers and making sure you understand everything that is said to you are ways to make a difference. If you think that the appointment will bring bad news, take a friend or family member with you. Don’t leave the physician’s office confused. You have the right to know what is happening to your body.

A National Emergency: Horrible Death for Older Man With Autism

Update: There has been a horrible event in California: This is a matter of LIFE AND DEATH. Isn’t everyone supposed to be cared for? Basic Police Work Ignored

The US Centers for Disease Control says that the prevalence of children with Autism Spectrum Disorder is one in every 110 children.  The CDC’s 2007 report describes children born between 1992 and 1994.  Those children are now aged 17 to 19, in other words they are about to “age out” of the school setting.  Extrapolation of the numbers means that approximately 1,495,264 will soon be adults with autism in the United States.  There are thousands more uncounted adults with autism.

As many as 40% of those with autism are completely nonverbal. In 1975 Congress passed the Education for All Handicapped Act.  Now called the Individuals with Disabilities Education Act (IDEA) it expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities.  This educational promise includes occupational, speech and language and other therapies.

Families of children with autism have come to rely heavily on the services that are provided by public schools.  Unfortunately the daily hands-on special education services provided free by university trained public school teachers end upon the student’s graduation.

Absolutely no services are mandated by the Federal Government for those children with autism (now considered adults at age 21) after they leave public school.

The families of adults with autism are faced with finding help where there is little help to be found.

Until the early 1990s, autism was said to be a rare disorder, approximately four per every ten thousand births.   Scientists believe that it is caused by a combination of environment and genetics.

Whatever the cause, there is awareness of autism among the general population but not realism about autism.The reality is that there are children and adults with autism that are severely disabled.  Some of these individuals require round-the-clock, 24/7, eyes-on vigilance.  Unfortunately, some families cannot cope with this kind of care at home. Sometimes these children have no family.

Prior to the 1980s, the only choice for families with children with severe autism was placing their loved one in a state institution.  There were almost no community services available except a few private schools or day programs for individuals with mental retardation. The staff at these private programs and at state institutions were not trained or experienced in working with people with an autism diagnosis. Often those presenting with a diagnosis of autism were refused admission.

Although there is much that was good in the de-institutionalization movement of the 1980s, there was an unfortunate side-effect.  Communities were supposed to fill the gap left by the institutions.  That hasn’t happened.  It costs over $75,000 per year for round the clock care for one adult with autism and expenses can go as high as $200,000 per year per person.  Who can afford this?  No insurance company covers the annual expenses of long-term care.   Most families have to rely on Medicaid to cover this expense.  Unfortunately in most states, the Medicaid that covers physician visits and medication is not the same Medicaid that pays for residential care.

The Medicaid program that pays for residential placement is a limited program called the Home and Community-Based (HCB) Residential Waiver.   Having Medicaid doesn’t automatically mean you have the waiver.  Unlike the mandatory services under I.D.E.A, the Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement. What is available for people with autism who need residential services?  Not a lot…More in a future post.