Mom Has Alzheimer’s: Coping Strategies for Caregivers

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Image via Pixabay

September was World Alzheimer’s Month so it’s a great time for all of us to reflect on the hardships faced by the nearly 5 million Americans diagnosed with this horrible disease, a figure comprised of a startling one in six women versus one in eleven men ages 65 and older.

But it’s also a time for us to honor the daily struggles of the selfless, compassionate individuals who act as their caregivers. It’s an especially difficult endeavor for all of the women who take on the role, as they often juggle this effort with raising a family, running a household, and holding down a full-time 9 to 5 career.

Caregiving is a round-the-clock occupation in which one’s responsibilities continuously change as the illness progresses from its early stages to its debilitating late stages. And while it’s certainly a difficult job, there are actually many ways to make caregiving tasks more manageable. Here are a few ways to smooth the transition to life post-diagnosis. (more…)

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In the Operating Room There Are No Politics

Lisa-Suennen-photoThe post below first appeared on Venture Valkyerie on August 23.

I rarely tread into the political, but during this time of extreme political rhetoric bordering on insanity, I have seen two things in the last week that brought home what is such an important and ironic point. The first was this poster, which I happened across in the lobby of the American Heart Association’s national headquarters:Screen Shot 2015-08-23 at 12.04.01 PM

It’s a poster that I suspect was created during a time of debate about the ACA, focusing as it does on lifetime limits on benefits, which were eliminated with passage of the ACA. The focus of the poster, of course, is how important it is to write policy by starting with patient needs and putting politics aside.

The other item that got me to this particular blog post was a Huffington Post story today about candidate Rand Paul, who happens to be an opthamologist. The article talks about how, while other candidates were at the Iowa State Fair giving farm kids helicopter rides and eating meat on sticks, Dr. Paul was giving free cataract surgeries to Haitians. The quote that caught my attention was this, “In the operating room there are no politics,” according to the candidate. I’m sure his visit to Haiti was timed for political reasons, but the words still matter because they are right. (more…)

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How Many More Annas Must Die?

anna gunnIt’s been over a year since my older sister Anna died, so I choke up less readily while speaking about it.  The raw anger is less, but the frustration of losing someone to a preventable medical mistake will always remain with me.   Anna was five years older than me, my only sister, and the one I often turned to for advice. We were close despite living 600+ miles apart.  She was smart and insightful; she was at ease in most social situations. I, on the other hand, was the nerdy kid sister who loved science, who became a physician in my early 40’s.

In 2012, Anna’s world turned upside down when she was diagnosed with bone marrow failure (myelodysplastic syndrome) at 58.  This disease stemmed from her previous treatment for breast cancer. At the time of diagnosis, everything else in her life seemed to be going well.  She loved being a (single) mom; she had a wonderful job; and they had just adopted an adorable Lab. She actually felt great. (more…)

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The Flu Shot: It’s Not Just for Kids

swhr_icon-2-solidThe following post first ran on Huffington Post Healthy Living on September 23 and can be accessed here. The author is Liliana Losada Brown, PhD, Associate Director, Scientific Programs at the Society for Women’s Health Research.

Think back to the last time you got a shot. Did the doctor cover the wound with a cartoon character-printed bandage and treat you to a lollipop? If so, you are way overdue for a flu shot — but that’s OK, we all are! Adults, children, pregnant women — everyone! –older than six months should get a flu shot every year.

We all know the flu: the serious, contagious respiratory illness caused by the influenza virus that infects nearly 20 percent of Americans every year. Do you want to be among those that don’t get the flu? The Centers for Disease Control and Prevention (CDC) recommends that every person over the age of six months, especially pregnant and breastfeeding women, get the influenza vaccine (“flu shot”) every year. (more…)

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Disruptive Woman to Watch says there’s one simple problem with our healthcare system

The following was written by Kevin Loria and was published in Tech Insider on September 2nd. You can see the original article here. Elizabeth Holmes was one of Disruptive Women’s 2015 Women to Watch.

Billionaire founder of Theranos says there’s one simple problem with our healthcare system

elizabeth-holmesThe basic problem with our healthcare system, according to Elizabeth Holmes, the billionaire founder of the blood testing company Theranos, is that we diagnose disease in the wrong way.

As she explains in a recent video on Makers, a web documentary site that tells the stories of women leaders, “If you look up the word ‘diagnose’ in the dictionary, it’ll say ‘to determine the presence of disease from its signs and symptoms.’”

But as Holmes has pointed out many times, once signs of disease are clearly visible, it’s often too late to cure an illness, or at the very least outside the ideal window for effective treatment. (more…)

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A Patient at a Press Conference


The following post originally ran on Gray Connections on September 6th.

Earlier today (September 6, 2015) I gave this speech at the International Association for the Study of Lung Cancer (IASLC)  World Conference on Lung Cancer in Denver.  I’m pleased at the reception it received.

I appreciate IASLC including me in this press conference. They’ve been responsive to lung cancer patients and advocates, and have included the patient voice in several conferences. Patients and advocates participated in the planning process for this World Conference on Lung Cancer, as demonstrated by the number of patient and advocate presentation on the program. This is a first among major oncology conferences, and a step forward for engaged patients.

PRC 1As the slide says, I’m alive thanks to research, precision medicine, and other patients. My lung cancer journey is a good example of the importance of research, hope, and engaged patients and advocates. (more…)

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PSA Serum Testing: To Test or Not to Test?

Terri Prof Headshot 0412Lewis W. had everything going for him. Recently remarried to the love of his life with a job he enjoyed and was good at it. He had so much to look forward to. But about a year into his new marriage, something didn’t feel right. He wasn’t as interested in sex as a newlywed might usually be and he was struggling to be the husband he wanted to be. His wife, thinking he had lost interest, moved on, leaving Lewis alone again at 53. During the following year he dealt with a divorce and during that time went to the doctor for a checkup. During the visit he mentioned his marital difficulties, not thinking that they were relevant to his health, other than the stress that a divorce carries. His doctor surprised him a few days later with the news that his PSA (Prostate Specific Antigen) levels were very high. The normal range, his doctor told him, is below 4.0 ng/mL, but the normal, baseline range for each man varies so Lewis’s PSA serum level was not necessarily a danger signal, but really a trigger for additional testing.

PSA serum levels can provide an indication of one’s risk of prostate cancer, but alone, are not enough to diagnose cancer. When levels rise above 10.0 ng/mL the probability of cancer increases dramatically. Accompanied by a digital rectal exam, PSA levels can be used to make a decision regarding whether additional testing and/or a biopsy is needed. (more…)

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Opportunities in the Connected Health Market

rania nasisThe connected health market has been growing exponentially, resulting in the consumerization of healthcare. Connected devices are increasingly becoming a routine part of lives with roughly one-fifth of the smartphone and tablet owners using a health app on a monthly basis, according to research from Parks Associates. If there’s any doubt of the role connected devices will play in our lives, check out Apple’s recent special event. Following Tim Cook’s welcome address, Airstrip, a veteran in the connected health space, took the stage to showcase their Sense4Baby app, which allows doctors to remotely monitor a mom and her baby during pregnancy.

The recent Connected Health Summit in San Diego brought together a panel of investors to discuss opportunities in the growing connected health market. The investors highlighted key areas of opportunity and provided sage advice for entrepreneurs in the space. Panel participants were Casper de Clercq of Norwest Venture Partners, Jason Russell of Citi, Euan Thomson of Khosla Ventures, Jeannine English of AARP, and David Schulte of McKesson Ventures. (more…)

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The Monumental Challenges Faced by Those with Severe Food Allergies

mitchell 165 x 200When their child is first diagnosed with severe, potentially fatal food allergies, parents are understandably frightened and overwhelmed. Surprisingly, the response from otherwise well-meaning family members and friends is often one of “So what’s the big deal? Just don’t give him a glass of milk (or peanuts or eggs or whatever the allergen is). Why are you making such a fuss?”

The reality is, parents have good reasons for “making a fuss.” Managing severe food allergies goes way beyond simply avoiding the most obvious forms of the offending food. Because of this, families are not always able to keep their children safe.

Food allergy 101

Food allergy is an abnormal response to a food, triggered by the body’s immune system. These responses can range from a mild reaction, such as a few hives, to anaphylaxis, a severe reaction that can rapidly lead to death. (more…)

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Disruptive Innovation in Childbirth Care

nanstrauss1 PhotoIn considering what to write for Disruptive Women in Health Care, I couldn’t stop thinking about the idea of disruption juxtaposed with the experience of birth and the US maternity care system.

In the context of maternity care, the concept of “disruption” hints at intriguingly different possible meanings: the consequences of a newborn entering a family, disruption during the childbirth process, or the urgent need for disruptive innovation in maternity care.

Birth itself is an absolute disruption of the status quo. Birth can be tumultuous, even when it is a joyous occasion. It is a turning point, beyond which things are never the same for those who give birth and those who incorporate a newborn into their lives, not to mention for the baby who is born.

Disruption of the process of birth is a different type of disruption. Few things are as important to a positive birth experience as feeling safe, private, and calm – in other words, being free from intrusion and interference. (more…)

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Pregnancy, prostates, and football.

Steve Buonaugurio HeadshotLook — men and women are different, and not just the obvious biology lesson. How we tick, how we think, how we feel, and how we interact with the world is all based upon something evolution has been working on since there were human beings. For most of human history men in general, and certainly husbands, had nothing to do with birth. When I was making my documentary Pregnant in America, Dr. Michel Odent, a world-leading expert on the subject, told me, “The men should go outside and chop wood and leave the women alone to give birth.”

While Dr. Odent’s contribution to modern maternity care has been in many ways revolutionary, this particular advice caught me off guard, but it also sparked my curiosity. What was my role in the birth of my child?

Let’s be honest, in today’s society, our gender roles have gotten a bit complicated and confusing. Society is now asking for different things from men. Gone are the days sitting in the waiting room with our cigars, waiting for a hearty pat on the back. (more…)

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The Exposing the Silence Project


Photo credit: Lindsay Askins,

“Well, at least you have a healthy baby!” is one of the most common phrases a mother who went through a traumatic birth experiences hears. While the friend or family member may mean well and simply be trying to show optimism, he or she is often isolating the deep pain the mother may be going through. As part of my research on maternal health, I came across the photography and advocacy project Exposing the Silence: Documenting Birth Trauma and the Strength of Women across America. The project brings to light a little noticed group of women– women who experienced past sexual abuse that can be triggered during a traumatic birth; others forced into unwanted procedures; or women who felt ignored or demeaned by their care providers during birth. The purpose of the project is not in any way to try to advocate for one type of birth or type of care provider over another and it is by no means an attack on all workers in the field of maternity care. Rather, it is an opportunity to provide an outlet for women who had a birth that caused them physical and emotional pain months, years, and even decades after the fact. I interviewed the creators of the project in order to understand their mission and learned how this disruptive project is filling a vital void. (more…)

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Pregnant in Prison: Maternity Care for Incarcerated Women

myheadshotWhen thinking about maternal health access, one group of women are often forgotten, even silenced – incarcerated women.  According to the two part TV series “Babies Behind Bars,” the number of women in US prisons has climbed 400% over the past 30 years. It is estimated that the majority of these women are in jail for non-violent crimes. Each year, 6-10% of all incarcerated women are pregnant.

Adequate maternal care for inmates has multiple components. Do they have access to prenatal care? Are they allowed more food? If they sleep on a top bunk can they be moved to a bottom bunk? Is access to mental health services provided to help with post-partum issues that may arise as the result of separation from their infant? Can the women breastfeed? Is shackling used?

Restraining women during labor and delivery and post-labor poses potential harms to the health of the mother as well as the baby.  The National Commission on Correctional Health Care, Federal Bureau of Prisons, and American College of Obstetricians and Gynecologists, along with numerous other notable organizations advise against shackling pregnant women. However, it is up to state and local jurisdictions to decide. While some states and local leaders have made great strides to prohibit shackling of pregnant women, many still have not enacted laws to protect pregnant inmates against this inhumane treatment. (more…)

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September Man of the Month: Dr. Neel Shah

neel_dk_headshot_3_0September’s Man of the Month is Dr. Neel Shah. Dr. Shah gave us permission to crosspost his article below which was first published in June on The Conversation. Dr. Shah was also recently featured in this Boston Globe article. In the article below he makes the argument that giving birth outside a hospital with a midwife could be safer and cheaper for many American women.

Are hospitals the safest place for healthy women to have babies? An obstetrician thinks twice

There is a good chance that your grandparents were born at home. I am going to go ahead and assume they turned out fine, or at least fine enough, since you were eventually born too and are now reading this.

But since the late 1960s, very few babies in the United Kingdom or the United States have been born outside of hospitals. As a result, you may find the new guidelines from the UK’s National Institutes for Health and Care Excellence (NICE) just as surprising as I did. For many healthy women, the NICE guidelines authors believe, there may be significant benefits to going back to the way things were. (more…)

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Reproductive Justice, Stratified Reproduction & the Importance of Ethnography in Improving Reproductive Health Outcomes

Reproductive Justice image oneThese images illustrate the complex phenomenon of reproductive justice, an intersectional approach of working against the ways that pregnancy, birth, and mothering stratify across race, nationality, and class. That is, as I often tell my anthropology students, studying reproductive health, policy, and experiences requires paying attention to “everything else” in social, economic, and political life. In my medical anthropology research I often argue this “everything else” results in the separation between public health as developed in policy and best practices, and public health in practice as experienced by women in marginalized communities. Here, I show that ethnography (the central research method of cultural anthropology) is one tool for closing that gap and improving reproductive health delivery. Using this approach to reproduction I use examples from Black Lives Matter, my own research on maternal mortality in Oaxaca, Mexico, and the current push to defund Planned Parenthood to make that case for greater attention to cultural context and power hierarchies by policy-makers and health-care providers.

For many people Black Lives Matter and reproductive justice may seem like different issues—perhaps allied, but not necessarily connected. (more…)

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