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Project Louise: Going For A Ride — And Going For The Fun

Not only did Louise ride 20 miles, but at the end, she was in a tent with Tom Brady. Oh, and hundreds of other people. Still ... fun! (Best Buddies)

Not only did Louise ride 20 miles, but at the end, she was in a tent with Tom Brady. Oh, and hundreds of other people. Still … fun! (Best Buddies)

By Louise Kennedy
Guest contributor

This whole health thing? It’s like riding a bike.

That’s what I’m thinking this week, anyway. Once you learn how to do it, even if you stop for a really long time, when you get back on the bike, you’re amazed at how simple it is.

And this week, I got back on the bike.

Dedicated readers (I love you, wherever you are) may remember that, way back in March, I decided to sign up for the Best Buddies Challenge bike ride on the Cape. I figured having a goal would encourage me to go to the gym more often, and going to the gym more often would make the ride both easy and fun.

So … it did not make me go to the gym. At all. But it did feel like a firm commitment, and so on Saturday, I went for a bike ride. A 20-mile bike ride. Continue reading

Pregnancy Woes: Why Did The Price Of My Progesterone Skyrocket?

(Photo: Rekha Murthy)

(Photo: Rekha Murthy)

By Rekha Murthy
Guest Contributor

Update: KV Pharmaceutical changed its name to Lumara Health, two days after this post was published.

I’m 34 weeks pregnant and working hard to keep this baby inside me for as long as possible. As with my last pregnancy, there’s a real risk that the baby could come too early. But we’re both holding on so far, thanks to a combination of luck, modified bed rest and medical science.

The science is my biggest concern right now. I will spare you much of it because, man or woman, you will instinctively cringe and close your legs. However, one critical medical intervention that has been proven to work for countless women and babies is again under threat, and I must speak up.

Every week, my husband injects me with 250 mg (1 ml) of 17 alpha-hydroxyprogesterone caproate (“progesterone” for short). Leaving aside what this does to an otherwise tender and loving marriage, these injections have been found to significantly lower the risk of preterm birth.

Two weeks ago, my insurance co-pay for progesterone went from $5.50 per dose to $70 per dose. Just like that. For those without insurance (or with a deductible), the medication went from $32.50 per dose, according to my local compounding pharmacy, to…wait for it…$833 per dose, according to the new pharmacy my insurer is now requiring me to use.

$833. Per. Dose.

Pricing varies somewhat across pharmacies and insurers, but not enough to make this price change any less breathtaking. In fact, the drug’s list price is $690 per dose.

The 12-fold leap in my co-pay sent an epic shock through my (natural and synthetic) hormone-laden system. I immediately called both pharmacies, my insurer, and my doctor, and started digging around online. I soon learned that the price increase came from a new requirement to buy expensive brand-name progesterone, instead of the affordable compounded version I had been getting. A disturbing picture came into focus. Continue reading

A Bittersweet Graduation For Patients At The Mass. Hospital School

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

By Gabrielle Emanuel

CANTON, Mass. — It’s lunch break and there’s a wheelchair traffic jam in the school hallway.

Friendly shouts of “Beep! Beep!” and “You’re blocking traffic” interrupt chatter about one kid’s new backpack and another guy’s birthday plans.

It’s a typical school scene, except a bunch of the kids are using computers to talk and others breathe through ventilators.

Like students across the country, many of these kids are getting ready for graduation. It’s a bittersweet time for graduates of all stripes, but perhaps nowhere is it more bittersweet than here.

All of the 91 students in these hallways are also patients. When they graduate – as about a dozen will this year – they’re not only leaving their friends and teachers, they’re leaving the hospital they’ve called home for years, and in some cases, a decade or more.

The campus’ main entrance is on a rural road in Canton, where a flashing sign reads: The Massachusetts Hospital School.

Brian Devin, the CEO, says that when cars zip past drivers often “think it’s a school where they teach people to work in hospitals.”

Devin says it’s a fair assumption, but completely wrong. This facility is part pediatric hospital, part elementary and secondary school. It serves children with severe disabilities — muscular dystrophy, cerebral palsy, brain injuries — and is run jointly by the state Department of Public Health and the Department of Education.

Children as young as 6 or 7 can be admitted to the hospital and they often stay at this lakefront campus until the kid’s clock strikes 22 years old, when it’s time to graduate and it’s time to go, regardless of whether there is another alternative place to go.

A Non-Institutional Hospital

As the hallway traffic starts moving, the students wheel themselves out into the brisk spring air. They race down covered ramps toward horseback riding lessons, speech therapy sessions and wheelchair hockey practice.

Those white ramps create a web that connects all the brick buildings on this idyllic, 160-acre facility.

“The kids are all over the place. They are not always with staff — we don’t want them to always be with staff,” Devin says. “We want them to be with themselves and with other kids as much as possible. There is no real institutional flavor.”

The Massachusetts Hospital School’s ultimate goal is to cultivate as much independence as possible for these children. Continue reading

Summertime Blues: Pesticide-Laden Strawberries And Your Health

Pesticide spraying at a farm on the North Shore of Massachusetts. (Photo: Alexandra Morris)

Pesticide spraying at a farm on the North Shore of Massachusetts. (Photo: Alexandra Morris)

By Alexandra Morris

This weekend marks the start of the summer season, but I can’t help dwelling on the downside. Each year at this time, crowds from urban Boston descend on the farm next to my parents’ house on the North Shore in Mass. to pick their own strawberries – fresh, sweet, ripe…and coated with toxins.

While the farm staff warns visitors to wash the fruit before eating it, many choose to snack along the way (one group was caught sitting in the strawberry field with a can of “Reddi-Whip” in hand). After all, what’s the cost of a few unwashed strawberries?

Unfortunately, when it comes to our health, the cost may be fairly high.

Over the years, researchers have documented the bad effects of pesticide exposure on human health. Recently, though, and at a forum this week at Harvard, there’s been increased attention on the links between pesticides and neurodegenerative diseases, notably Parkinson’s and Alzheimer’s.

In a study published earlier this year in the journal Neurology, researchers from UCLA identified the way in which certain pesticides can increase the risk of Parkinson’s disease. They also found that people with a common genetic variant are even more sensitive to these pesticides – they are two to five times more likely to develop Parkinson’s if exposed.

“Once you identify the toxicity of these things, getting rid of the bad pesticides…would be a goal, not just for the people that live in the area, but for the workers that use it,” said the study’s lead author, Dr. Jeff Bronstein, a professor of neurology at UCLA.

In a separate report out of Rutgers University, published in JAMA Neurology, researchers found that exposure to the pesticide DDT may increase the risk of developing Alzheimer’s disease. In the study, researchers found that levels of DDE, the chemical compound that develops when DDT breaks down, were higher in the blood of Alzheimer’s patients compared to those without the disease.

And the effects go beyond the risk of Parkinson’s and Alzheimer’s. Marc Weisskopf, an associate professor of environmental and occupational epidemiology at the Harvard School of Public Health, who spoke at the Harvard forum, said there is evidence that pesticides contribute to a host of neurodevelopmental disorders as well, from ADHD and developmental disorders to lowered cognitive performance. Continue reading

Good News-Bad News On PMS and Menopause

Young women, take heart: if you are among the vast majority of us who suffer from PMS —  the irritability, anxiety, headaches, breast tenderness, or bloating — it doesn’t mean you’re doomed to suffer from hot flashes when you hit menopause.

But don’t go out and celebrate just yet.

Because this is a good news/bad news kind of report:

pixel pro photography/flickr

pixel pro photography/flickr

The Good: Researchers found no connection between having a history of PMS and then experiencing hot flashes during menopause.

The Bad: They did find a connection between PMS and other seriously annoying problems shortly after menopause —  including impaired memory and concentration, poor sleep and depression.

Oh well.

The study of 150 recently menopausal woman published in the journal Menopause, claims its findings — linking a history of PMS with worsened so-called “health-related quality of life” measures, but not with hot flashes — are “novel.”

Here’s more on the mechanics of the connection, from the study:

The resemblance between premenstrual and menopausal symptoms raises a question on whether they also share similar physiological characteristics. One mechanism that has been suggested to contribute to premenstrual symptoms is deficiency in, or abnormal functioning of, neurotransmitters in the central nervous system, Continue reading

WSJ: Women At Risk, Doctors Split On Procedure Linked To Rare Cancer

Here’s another excellent Wall Street Journal report on the controversial procedure known as “morcellation.”  Reporter Jennifer Levitz notes that even after the FDA issued a warning on the practice (which involves a “laparoscopic power morcellator” that allows for less invasive surgery to remove fibroids by slicing them up, but can also potentially spread a rare type of cancer through the body) doctors are split on how to proceed.

According to the report:

The FDA said women undergoing surgery for what look like benign fibroids actually have a 1 in 350 risk of hosting an undetected cancer called a uterine sarcoma. Morcellating these tumors can spread cancerous tissue internally and significantly worsen the odds of long-term survival, the agency said.

So what are women to do when the medical community itself is divided? From the WSJ:

(wikimedia commons)

(wikimedia commons)

A number of doctors believe the FDA overreached, and think the cancer risk is so small that gynecologists can go an entire career without seeing a case. Others call the advisory a necessary precaution.

Hospitals and private practices are taking an array of approaches. The University of Pittsburgh Medical Center system, which has more than 50 obstetrics and gynecology practices, opted to continue using the device.

The medical system changed its informed-consent forms to include wording on cancer risk and told doctors to discuss the risk with patients. But Allen Hogge, chairman of obstetrics, gynecology and reproductive sciences there, questioned the data behind the FDA’s estimate. The FDA began looking at the issue after media reports late last year about a prominent Boston doctor who discovered she had sarcoma after morcellation.

“I think this is mostly public relations and not science,” Dr. Hogge said. In response, the FDA said it conducted a rigorous analysis of published literature.

The common practice of morcellation, which is often used for hysterectomies, came under fire when Dr. Hooman Noorchashm, a cardiothoracic surgeon at Brigham and Women’s Hospital and his wife, Dr. Amy Reed, an anesthesiologist at Beth Israel Deaconess Medical Center launched a publicity campaign aimed at stopping the procedure, Continue reading

Project Louise: Into The Woods … And, Maybe, Out Again

Dante displaying his famous opening lines -- words to remember when the woods grow dark. (Wikimedia Commons)

Dante displaying his famous opening lines — words to remember when the woods grow dark. (Wikimedia Commons)

By Louise Kennedy
Guest contributor

The opening of Dante’s “Inferno” has been running through my head lately, and that’s rarely a good sign.

In the middle of the journey of our life
I found myself astray in a dark wood
where the straight road had been lost.

Astray in a dark wood? Check. Straight road lost? Check. In the middle of life’s journey? Sure, especially if you construe that as “in the midst” rather than “halfway through.” (I might be, but only if we’re extremely optimistic about my projected lifespan.)

So why do I feel astray, and why do the woods look so dark? Well, I am more or less in the middle of this Project Louise journey, and I have to tell you, I don’t feel as if I’m doing as well as I want to be.

I’m also struck that the one thing I thought would keep me on track – the commitment to write about the project once a week, without fail – has failed me. I started out by posting faithfully each Monday, and then that slipped a bit, and then last week I didn’t write at all … and now here I am, trying to tell you what’s up, and instead muttering about Dante when I should be talking about exercise, or stress, or the chicken skin I ate last night, or something else health-related.

Or maybe I should, in fact, be talking about Dante. Because, as coach Allison Rimm keeps telling me, this is more than a physical program; I am working to get healthier physically, but also mentally, emotionally, even spiritually. Who better than Dante to accompany me on that path? Continue reading

Added Fear Of Flying: Disease-Causing Bacteria Linger On Plane Surfaces

(Doug/flickr)

(Doug/flickr)

Add this to your lengthy list of flying-related miseries: disease-causing bacteria that live on airplane armrests, tray tables, toilet buttons and other surfaces can linger on and on — for up to an entire week.

This new data, with its off-the-charts gross factor, comes from scientists attending the annual meeting of the American Society for Microbiology. From the news release:

In order for disease-causing bacteria to be transmitted from a cabin surface to a person, it must survive the environmental conditions in the airplane. In the study Kiril Vaglenov, of Auburn University who presented the data, and his colleagues tested the ability of two pathogens, methicillin-resistant Staphylococcus aureus (MRSA) and E. coli O157:H7 to survive on surfaces commonly found in airplanes. They obtained six different types of material from a major airline carrier (armrest, plastic tray table, metal toilet button, window shade, seat pocket cloth, and leather), inoculated them with the bacteria and exposed them to typical airplane conditions.

MRSA lasted longest (168 hours) on material from the seat-back pocket while E. coli O157:H7 survived longest (96 hours) on the material from the armrest.

“Our data show that both of these bacteria can survive for days on the selected types of surfaces independent of the type of simulated body fluid present, and those pose a risk of transmission via skin contact,” says Vaglenov.

This research is laying the groundwork for important work to come.

“Our future plans include the exploration of effective cleaning and disinfection strategies, as well as testing surfaces that have natural antimicrobial properties to determine whether these surfaces help reduce the persistence of disease-causing bacteria in the passenger aircraft cabin,” says Vaglenov.

Tele-Coach: How An Eating Therapist Learned To Love Skype

By Jean Fain
Guest contributor

“How’d you do with your eating since last we met?” I recently asked members of my group on food issues.

“I’m really struggling,” said Heidi, a 27-year-old entrepreneur from Boston. “When I get overly full, that self-critical voice takes over. All I can think is ‘Screw it! I’ll start fresh tomorrow.’ I don’t know how not to let my eating spiral into overeating.”

Author Jean Fain while Skyping (courtesy).

Author Jean Fain while Skyping (courtesy).

Lydia, a 45 year-old minister from Akron, jumped in: “Instead of believing that self-critical voice, I’ve been telling myself: ‘That’s not what I believe.’”

“Did you hear that?” I asked Heidi. “Next time you start thinking ‘Screw it,’ you might try ‘That’s not what I believe’ or another of Lydia’s inspired responses.”

Heidi and Lydia (not their real names) are talking face to face, but not in person. Thanks to recent telecommunications advances, the 650 miles between the two are no barrier to participating in my eight-week group on using self-compassion for eating issues. Nor is a six-hour time difference. Last week, one participant Skyped in from her Lisbon hotel room.

Yes, I’ve jumped on the telemedicine bandwagon. I’m just discovering what hospitals, home health agencies and other major health organizations have been touting as the most cost-effective alternative to traditional face-to-face medicine since castor oil.

Clients with food and body image issues generally feel a lot less self-conscious attending a group remotely than up close and personal.

I knew about the telemedicine or “telehealth” trend, using technology to remotely deliver health-care services and information. But I’d never seriously considered joining the high-tech trendsetters. For decades, I’ve been happily providing individual and group therapy the old-fashioned way, and there are major legal questions about virtual psychotherapy, particularly across state lines.

According to Marlene M. Maheu, Ph.D., Executive Director of the Telemental Health Institute, “It’s the wild west. Clinicians are making up their own rules and disregarding those they agreed to follow when they got their licenses, and the consumers are at risk. They really don’t know who’s the right person to go to.”

Then, three things converged:

• Sixty-five members of The Center for Mindful Eating from around the world enthusiastically participated in my teleconference on The Self-Compassion Diet.
• My clients started complaining about sitting in traffic during the interminable reconstruction of Route 2 in Concord, Mass.
• One client couldn’t say enough about her Skype sessions with Los Angeles nutritionist and mindful eating author, Evelyn Tribole.

So I asked myself: “Why not Skype with clients?” Well, because telemedicine has real downsides. Besides the fuzzy legal regulations, I had at least three other concerns: Continue reading

Tracking The Rising Backlash Against Sugar

Years ago, on my daughter’s first birthday, my mother-law, an avid cook, baked her a cake. I don’t remember if it was chocolate or layered. What I do remember is forbidding my baby from eating it — not even a nibble. Why, I thought, would I introduce processed sugar into a one-year-old’s diet when she’d been perfectly content with avocados and bananas? “Don’t you want to see pure joy on her face?” asked one friend. Yeah, sure, but not from frosting.

Needless to say, the birthday cake prohibition triggered a bit of a backlash among some family members, and earned me labels like “rigid” and “crazy.”

But these days, with the huge national backlash against sugar — from the new film “Fed Up” and Eve Schaub’s popular family memoir, “Year Of No Sugar,” to Mark Bittman’s regular columns hammering on the message of sugar’s toxicity — I feel somewhat vindicated.

Here’s a snippet from Bittman’s latest, “An Inconvenient Truth About Our Food” on why “Fed Up” is such an important film:

The experts carry the ball. The journalist Gary Taubes calls the “energy balance” theory — the notion that all calories are the same, and that as long as you exercise enough, you’ll avoid gaining or even lose weight no matter what you eat — “nonsense.” One Coke, we learn, will take more than an hour to burn off. The pediatrician Rob Lustig, a leading anti-sugar campaigner, notes that “we have obese 6-month-olds. You wanna tell me that they’re supposed to diet and exercise?” David Ludwig, another M.D., notes that there is no difference between many processed foods and sugar itself, saying you can eat a bowl of cornflakes with no added sugar or a bowl of sugar with no added cornflakes and “below the neck they’re the same thing.” Lustig reminds us that anyone can develop metabolic syndrome: “You can be sick without being fat; this is not just a problem of the obese.”

And so on. Senator Tom Harkin says, “I don’t know how they (the food industry) live with themselves,” comparing them to the tobacco industry. Bill Clinton says, effectively, “We blew it,” when it came to this struggle.

The movie has some splendid moments: A mother cries at the difficulty of the choice she must make between giving her child what she wants and giving her what’s best. Her struggle is common, and she’s fighting against an almost overwhelming tide of marketing and, yes, even addiction. A school lunch worker, speaking of the fact that few kids choose the healthy option at lunch, says, “You can’t choose for them.” But they are children; we must choose for them. Not only are their parents not present, but their parents often don’t know what’s best.

Just to be clear, this isn’t simply rationalizing my own personal food obsessions (though there’s some of that) or about our cultural sickness around achieving “thigh gap” thinness. It’s about overall health — for instance, heart disease. Continue reading