MOEBIUS SYNDROME IN THE NEWS

Today, read again about a young man who has been a recurring Moebius hero:  Jack Marshall, from the UK.  Look what he's done now:

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A brave teenager with a rare neurological condition has again defied the odds by completing a gruelling challenge.
Jack Marshall, aged 15, from Belton in the Isle of Axholme took part in Africa’s biggest road race, the epic Great Ethiopian Run.
Jack suffers from Moebius Syndrome which leaves him unable to walk unassisted and unable to smile. He is also blind in one eye and has reduced hearing and balance.
He completed the 10k run with help from his 19-year-old sister Jaimie.
There were 37,000 participants in this year’s event, including more than 400 elite athletes.
Jack’s mum Linda said: “They were invited to Ethiopia by Olympic legend Haile Gebrselassie after they competed in the junior Great North Run in September, and they actually went to his house after the run.
“The junior race was cancelled so Jaimie took him on the senior event pushing him in his wheelchair over 10k of unmade roads.
“Jack ran the last 200 metres. She said it was the most amazing experience of their lives.”
Linda said the race was not as formal as running events in the UK.
All 37,000 competitors started at the same time after a gun was fired and at each kilometre a band played while runners stopped, danced, chanted and sang.
“They let a fire hydrant off to cool everyone down,” Linda added.
It is not the first time Jack has taken part in a challenge.
He has previously completed the Junior Great Manchester Run and walked up Pen-y-ghent, one of the three Yorkshire Dales Peaks with Emmerdale actor, and good friend, Chris Chittell – who plays Eric Pollard in the TV soap.
His selfless fundraising led to him being selected to carry the Olympic torch during the 2012 relay.
And he has even more challenges lined up – Jack is planning to climb Mount Snowdon in April with Emmerdale cast members.
His ultimate aim is to climb Kilimanjaro.
He is also set to take part in a parachute jump in July, along with Doncaster soldier Ben Parkinson, the most severely injured soldier ever to survive.

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Congratulations, Jack!

AWARENESS UPDATE

Asperger's Syndrome is sometimes--though by no means always--associated with Moebius.  Look at the famous person who has it:

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Susan Boyle Reveals Asperger’s Diagnosis

Susan Boyle, the Scottish singer who rose to international fame after stunning audiences on the television show “Britain’s Got Talent,” says she’s been diagnosed with Asperger’s syndrome.

Singer Susan Boyle says she’s been diagnosed with Asperger’s syndrome. (Shutterstock)

Boyle, 52, told The Observer newspaper in London that she was diagnosed with the form of autism a year ago by a specialist who found that she has an above-average IQ.
Previously, Boyle said she was told as a child that she had brain damage stemming from complications at birth, but now says she had been misdiagnosed.
“I was told I had brain damage. I always knew it was an unfair label,” the singer said in an interview published over the weekend. “Now I have a clearer understanding of what’s wrong and I feel relieved and a bit more relaxed about myself.”
Boyle wowed audiences when she sang “I Dreamed a Dream” from “Les Misérables” on the show “Britain’s Got Talent” in 2009. Since then, she’s sold millions of albums, topping charts in Britain and elsewhere.
As a child, Boyle was bullied and called “Susie Simple.” More recently, since achieving fame, she has reportedly struggled at times and was treated for exhaustion shortly after coming in second on “Britain’s Got Talent.”
Boyle told The Observer that she hopes her new diagnosis will help others understand where she’s coming from.
“It will not make any difference to my life. It’s just a condition that I have to live with and work through,” Boyle said. “I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do.”

SUNDAY FOOTBALL PICKS!

We've been kind of iced-in here in North Texas lately, so things have kind of gotten backed up.  But here are my football picks for today!

NFL PICKS

ARIZONA 7 over St. Louis.  My pick:  CARDINALS.  They are very good at home.

BALTI juIMORE 6.5 over Minnesota.  My pick:  RAVENS.  The Baltimore defense will make a big difference here; it has stepped up its game.

CINCINNATI 6.5 over Indianapolis.  My pick:  COLTS.  Maybe not to win, but to keep it close; I think the Colts defense will hold its own here.

DENVER 12 over Tennessee.  My pick:  BRONCOS.  Denver to keep rolling at home.

Kansas City 3 over WASHINGTON.  My pick:  CHIEFS.  Mainly because the Redskins, while competitive, seem to find ways to lose this year.

GREEN BAY vs Atlanta.  No line.  My pick:  FALCONS.  I don't think Aaron Rodgers will play.  The Falcons have not quit.  Green Bay is not the same team without Rodgers.

NEW ENGLAND 11.5 over Cleveland.  My pick:  PATRIOTS.  Tom Brady and co. will roll at home.

NEW ORLEANS 3 over Carolina.  My pick:  SAINTS.  Because they are one of the best teams in the NFL--at home.

NY JETS 2.5 over Oakland.  My pick:  JETS.  Look for the Jekyll and Hyde Jets to have a good week.

PHILADELPHIA 2.5 over Detroit.  My pick:  EAGLES.  I just think the Lions will have a difficult time slowing down the Eagles' pass game.

PITTSBURGH 3 over Miami.  My pick:  STEELERS.  The Steelers remain tough and dangerous at home, and are playing better.  Will the Dolphins be able to handle the cold?  No.

SAN DIEGO 3 over NY Giants.  My pick:  GIANTS.  Just a feeling--Eli Manning will find a way.

SAN FRANCISCO 2 over Seattle.  My pick:  SEAHAWKS.  I think Seattle has become the class of the NFC, and they will show it here.

TAMPA BAY 2 over Buffalo.  My pick:  BUCCANEERS.  Tampa Bay has significantly improved.

CHICAGO vs Dallas--pick 'em.  My pick:  BEARS.  Just a feeling--I think the cold and being on the road, and the Bears being a desperate team, will work in favor of Chicago.

I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT

How to think yourself well.  Worth reading--check it out:

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What if you had the ability to heal your body just by changing how you think and feel?

I know it sounds radical, coming from a doctor. When people are doing everything "right" -- eating veggies, avoiding red meat and processed foods, exercising, sleeping well and so forth -- we should expect them to live long, prosperous lives and die of old age while peacefully slumbering, right?

So why is it that so many health nuts are sicker than other people who pig out, guzzle beer and park in front of the TV?

I consider myself one of those health nuts. I drink my green juice, take my vitamins, hike and practice yoga daily, get quality sleep, see a doctor and avoid harmful toxins.

And yet I have come to believe that the purely physical realm of illness -- the part you can diagnose with laboratory tests -- is only part of the equation. It's a big part, mind you, but not the whole shebang.

My experience with patients (as well as my personal background) has led me to the conclusion that whether they become sick or stay healthy, as well as whether they remain ill or manage to heal themselves, might have more to do with everything else that's going on in their lives than with any specific health standard they abide by.

When healthy habits aren't enough

Five years ago, I started working in an integrative medicine practice. My new patients were some of the most health-conscious people I've ever had the privilege to serve. Many of them ate a vegan diet, worked out, slept soundly each night and took vitamins every morning.

But some of them were also mysteriously sick, complaining of fatigue, aches, gastrointestinal disturbances and other symptoms. I was baffled! I ran batteries of tests, and occasionally I would pick up something that eventually resulted in the complete resolution of a patient's symptoms. But more often than not, I would find nothing.

I was really motivated to solve the puzzle of why these "healthy" patients were so sick. Instead of focusing exclusively on physician-recommended behaviors, medical history and other traditional factors, I dug deep into their personal lives.

I asked them questions: "What do you love about yourself? What's missing from your life? What do you appreciate about your life? Are you in a romantic relationship? If so, are you happy? If not, do you wish you were? Are you fulfilled at work? Do you feel like you're in touch with your life's purpose? Do you feel sexually satisfied? Do you express yourself creatively? Do you feel financially stable, or are you stressed about money? If your fairy godmother could change one thing about your life, what would you wish for?"

My patients' answers often gave me more insight into why they might be sick than any lab test or exam could. They were unhealthy not because of bad genes or poor habits or rotten luck, but because they were lonely or miserable in their relationships, stressed about work, freaked out about their finances or profoundly depressed.

On the flip side, I had other patients who ate junk, forgot to take their supplements, rarely exercised and enjoyed seemingly perfect health. Their responses revealed that their lives were filled with love, fun, meaningful work, creative expression, spiritual connection and other traits that differentiated them from the sick health enthusiasts.

Ironman champ: 'Your mind matters more'

What's really making you sick?

That's when I narrowed it down to two questions I would ask patients at their appointments: "What do you think might lie at the root of your illness?" and "What does your body need in order to heal?"

Occasionally, they answered with conventional health-related insights, saying, "I need an antidepressant" or "I need to lose 20 pounds." But more often than not, they said introspective things, like "I hate my job," "I need more 'me' time," "I must divorce my spouse," "I have to finish my novel," "I need to hire a nanny," "I need to make more friends," "I need to forgive myself," "I need to love myself" or "I need to stop being such a pessimist." Whoa.

While many patients weren't ready to do what their intuition told them their bodies needed, my bravest patients made radical changes. Some quit their jobs. Others left their marriages. Some moved to new cities or towns. Others pursued long-suppressed dreams.

The results these patients achieved were astonishing. Sometimes, a list of illnesses would disappear, often quickly. Even smaller steps, like talking to a boss about workplace problems or seeing a marriage counselor, helped. I was in awe.

But I shouldn't have been surprised: I had healed myself in much the same way. By the time I was in my 20s, I had been diagnosed with multiple health conditions, including high blood pressure and precancerous changes on my cervix.

At 33, I was burned out, thanks to my career in a busy obstetrics and gynecology practice. I wound up leaving my job, selling my house and liquidating my retirement account.

My husband, baby and I moved from chaotic San Diego to a small, sleepy town in northern California, where I spent two years digging into the root causes of my illness, diagnosing what needed to be changed and mustering up the courage to take action. As a result, my health conditions either completely resolved or drastically improved.

The get-well Rx

This is not "woo-woo" metaphysics here. The scientific evidence I have uncovered in major medical journals backs this up: The lifestyle choices you make can optimize your body's relaxation response, counteract the stress response and result in physiological changes, leading to better health.

The body doesn't fuel how we live our lives. Instead, it is a mirror of how we live our lives. So if you're not feeling well, despite doing all the "right" things, take a deep breath and ask yourself: What do I think might lie at the root of my illness? What does my body need in order to heal? If you're honest with yourself, the answers could save your health -- and your life.

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HEALTH TIP OF THE DAY

Yes, take a walk--but make it a brisk one, too, okay?  Read more about it:

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Walking, fast or slow, is wonderful exercise. But now a first-of-its-kind study shows that to get the most health benefits from walking, many of us need to pick up the pace.
The findings stem from a new analysis of the National Walkers’ Health Study, a large database of information maintained at the Lawrence Berkeley National Laboratory about thousands of middle-age men and women who walk regularly for exercise. Recruited beginning in 1998 at walking events and from lists of subscribers to walking-related publications, these volunteers filled out a lengthy survey about their typical walking distance and pace, as well as their health history and habits.
As most of us would likely guess, walking is the most popular physical activity in America. But people who walk for exercise do so at wildly varying speeds and intensities. Some stroll at a leisurely 2 miles per hour, which is low-intensity exercise. Others zip along at twice that pace or better, resulting in a sweatier workout.
Exercise guidelines generally suggest that for health purposes, people should engage in 30 minutes of moderate-intensity activity most days of the week. For walkers, a moderately intense pace would probably be about 15 or 16 minutes per mile.
It has generally been assumed that if people walk more slowly but expend the same total energy as brisk walkers — meaning that they spend more time walking — they should gain the same health benefits. But few large-scale studies have directly compared the impact of moderate- and light-intensity walking, especially in terms of longevity.
To do so, Paul T. Williams, a statistician at Lawrence Berkeley National Laboratory, gathered data about 7,374 male and 31,607 female participants from the walkers’ health study, who represented almost every speed of fitness walker, from sluggish to swift. His findings were published online this month in PLoS One.
Dr. Williams divided participants into four numerically equal categories, based on their normal pace. Those in Category 1, the fleetest, averaged less than 13.5 minutes per mile, putting them on the cusp of jogging, while those in Category 4, the slowest, strolled at a relatively dilatory 17 minutes or more per mile. The majority of the walkers in this group in fact required at least 20 minutes to complete a mile, and many had a pace of 25 minutes or more per mile. (Interestingly, on average, female walkers were faster than men in all of the categories.)
Next, Dr. Williams cross-referenced his data against that in the essential if somewhat ghoulish National Death Index to determine which of the almost 39,000 walkers had died in the decade or so since they had joined the survey and from what.
It turned out that nearly 2,000 of the walkers had died. More telling, these deaths disproportionately were clustered among the slowest walkers. Those in Category 4 were about 18 percent more likely to have died from any cause than those in the other three categories and were particularly vulnerable to deaths from heart disease and dementia.
Unexpectedly, the death rate remained high among the slowest walkers, even if they met or exceeded the standard exercise guidelines and expended as much energy per day as someone walking briskly for 30 minutes. This effect was most pronounced among the slowest of the slow walkers, whose pace was 24 minutes per mile or higher. They were 44 percent more likely to have died than walkers who moved faster, even if they met the exercise guidelines.
One important inference of these statistics is that intensity matters, if you are walking for health. “Our results do suggest that there is a significant health benefit to pursuing a faster pace,” Dr. Williams said. Pushing your body, he said, appears to cause favorable physiological changes that milder exercise doesn’t replicate.
But there are nuances and caveats to that conclusion. The slowest walkers may have harbored underlying health conditions that predisposed them to both a tentative walking pace and early death. But that possibility underscores a subtle takeaway of the new study, Dr. Williams said. Measuring your walking speed, he pointed out, could provide a barometer of your health status.
So check yours, your spouse’s or perhaps your parents’ pace. The process is easy. Simply find a 400-meter track and, using a stopwatch, have everyone walk at his or her normal speed. If a circuit of the track takes someone 6 minutes or more, that person’s pace is 24 minutes per mile or slower, and he or she might consider consulting a doctor about possible health issues, Dr. Williams said.
Then, with medical clearance, the slow walkers probably should try ramping up their speed, gradually.
The most encouraging news embedded in the new study is that longevity rises with small improvements in pace. The walkers in Category 3, for instance, moved at a speed only a minute or so faster per mile than some of those in the slowest group, but they enjoyed a significant reduction in their risk of dying prematurely.

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AUTISM UPDATE

For those of you interested in autism--have you heard of something called "oxytocin"?  You will want to know about it--read on:

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The hormone oxytocin has been generating excitement — and caution — among people who care about autism.

Scientists have been eager to see if oxytocin, which plays a role in emotional bonding, trust and many biological processes, can improve social behavior in people with autism. Some parents of children with autism have asked doctors to prescribe it, although it is not an approved treatment for autism, or have purchased lower-dose versions of the drug over the counter.

Scientifically, the jury is out, and experts say parents should wait until more is known. Some studies suggest that oxytocin, sometimes called the “love hormone,” improves the ability to empathize and connect socially, and may decrease repetitive behaviors. Others find little or no impact, and some research suggests that it can promote clannish and competitive feelings, or exacerbate symptoms in people already oversensitive to social cues. Importantly, nobody knows if oxytocin is safe or desirable to use regularly or long term.

Now, the first study of how oxytocin affects the brains of children with autism finds hints of promise — and also suggestions of what its limitations might be.

On the promising side, the small study, published Monday in The Proceedings of the National Academy of Sciences, found that the hormone, given as an inhalant, generated increased activity in parts of the brain involved in social connection. This suggests not only that oxytocin can stimulate social brain areas, but also that in children with autism these brain regions are not irrevocably damaged but are plastic enough to be influenced.

The limitations could include a finding that oxytocin prompted greater brain activity in children with the least severe autism. Some experts said that this could imply that oxytocin may work primarily in less-impaired people, but others said it might simply suggest that different doses are needed.

“Here we have a really clear demonstration that oxytocin is affecting brain activity in people with autism,” said Dr. Linmarie Sikich, director of the Adolescent and School-Age Psychiatric Intervention Research Program at the University of North Carolina, who was not involved in the study. “What this shows is that the brains of people with autism aren’t incapable of responding in a more typical social way.”

Nonetheless, said Dr. Sikich, who will be leading a large federally funded trial of 300 children to evaluate behavioral effects of daily oxytocin for six or 12 months, “there’s still a big gap in knowing how much it will really change overall functioning and how to best use it.”

In the new study, conducted by the Yale Child Study Center, 17 children, ages 8 to 16, all with mild autism, got a spray of oxytocin or a placebo (researchers did not know which, and in another session each child received the other substance). The children were placed in a functional magnetic resonance imaging machine, an f.M.R.I., and given a well-established test of social-emotional perception: matching emotions to photographs of people’s eyes. They took a similar test involving objects, choosing if photos of fragments of vehicles corresponded to cars, trucks, and so on.

During the “eyes” test, brain areas involved in social functions like empathy and reward — less active in children with autism — showed more activity after taking oxytocin than after placebo. Also, during the “vehicles” tests, oxytocin decreased activity in those brain areas more than the placebo, a result that especially excited some experts.

“If you can decrease their attention to a shape or object so you can get them to pay attention to a social stimulus, that’s a big thing,” said Deborah A. Fein, a psychology professor at the University of Connecticut.

With oxytocin, the children did not do better on the social-emotional test, unlike in some other studies. But experts said that was not surprising, given the difficulty of answering challenging questions while staying still in an f.M.R.I.

“What I would look for is more evidence of looking in the eyes of parents, more attention to what parents are saying, less tendency to lecture parents on their National Geographic collection,” Dr. Fein said.

The Yale researchers did study oxytocin’s effect on such social interactions and are analyzing those results for later publication, said Ilanit Gordon, a co-author of the study.

The Yale team suggests that oxytocin may be most useful not as a continuous treatment to enhance general social skills, but as a tool to help children benefit more from behavioral therapy or specific social experiences.

Several experts agreed.

“Most people believe that these drugs will not immediately improve social behavior or improve some of the more negative symptoms,” said Geraldine Dawson, director of the Center for Autism Diagnosis and Treatment at Duke University. Instead, “Think of this as possibly priming the brain to make it more receptive to social information,” she said. “This may help to enhance that child’s response to behavioral therapy and early intervention, and may not have to be used long term.”

The Yale study includes another intriguing result: that children whose saliva showed higher oxytocin concentrations had more activity in the amygdala. That, experts said, may eventually mean that a simple saliva test could help identify who might benefit most from oxytocin.

One participant in the Yale study, Jesse, then 15, said he could tell immediately which spray was oxytocin because he became giggly, “laughing uncontrollably — it was like they gave me laughing gas.” The effects did not last long, said Jesse, whose parents asked that his last name be witheld.

Since then, his parents started buying low-dose over-the-counter oxytocin spray, which they keep at home and with the high school nurse. Occasionally, when Jesse, who has Asperger’s syndrome, has a “panic attack or spiraling, it just sort of shuts off that mood, and it doesn’t come back,” said his mother, Jackie.

Or, as Jesse described it, when “I’m really stressed or sad, pretty quickly I start feeling a lot more calm. It sort of disrupted the thoughts that were making me nervous.”

Dr. Gordon does not recommend such use. “I don’t want a wave of parents now giving their children oxytocin,” she said. “We’re not seeing that giving oxytocin equals treating autism, not yet.”

Both animal and human studies give reasons for caution. While early research found that oxytocin promoted pair bonding in prairie voles, newer studies found that giving the equivalent of several years’ worth of daily oxytocin to adolescent male prairie voles made them behave abnormally, bonding with strange voles rather than their partners, said Karen Bales, a psychologist at the University of California, Davis, who conducted the research. She said early repeated use might tell the brain to make less oxytocin than it would produce naturally.

A study of healthy men found that oxytocin made them more biased against outsiders. And when people with borderline personality disorder took oxytocin, they became more distrustful, possibly because they were already socially hypersensitive.

Even if it ends up easing autistic symptoms, autism is so complex and varied that oxytocin is unlikely to work for everyone. People with different oxytocin receptor genes may respond differently, for example.

“We’re still really in the early stages of understanding whether oxytocin is going to be an effective treatment for autism,” Dr. Dawson said.

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AWARENESS UPDATES

Two new items today--both of them containing good news.  First--college roommates help one of their own who is disabled:

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A college student who needs help with everything from showering to dressing and even getting out of bed is receiving all that and more from a group of devoted friends turned roommates.
Cesar Ibanez, 28, has spinal muscular atrophy, a genetic condition that leaves his muscles weak. Despite being told that he wouldn’t make it to adulthood, Ibanez is now a biology major at Brigham Young University-Idaho in Rexburg, Idaho with dreams of one day treating his own condition.
During his first semester of college, Ibanez lived at an assisted-living facility. But after bonding with a group of six other guys who tell the (Idaho Falls, Idaho) Post Register that he’s routinely one of the funniest people in the room, Ibanez’ friends convinced him to move in with them.
None of the men had any caregiving experience and Ibanez’ roommates admit that it was an adjustment at first taking on the role full-time and without pay.
“I was nervous about this and how I’d ever have enough time … knowing just a fraction of the responsibilities we’d have if Cesar moved in,” roommate Trevor Rubio told the newspaper. “It really was an act of faith.”
But now the guys say they would drop anything for their friend. When Ibanez had a cold and struggled to breath, they nursed him back to health. And the men admit to worrying about Ibanez when he leaves the house in the morning since they know what could happen if he were to get sick again.
“After knowing Cesar for two semesters, I can honestly say that I love him like he’s my brother,” roommate Jake Christensen told the Post Register. “Cesar doesn’t always greet you with a smile, but you always know he’s grateful.”

 

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And also--who says that sexuality isn't for those with special needs?  Check out the new calendar that will soon be available:

A new calendar featuring scantily-clad models with disabilities is designed to squash preconceived notions about sexuality among those with special needs.

Dubbed “Undressing Disability,” the calendar produced by the British disability advocacy group Enhance the UK includes images of people who are deaf, blind and those with cerebral palsy, among other conditions, showing off their physiques. Sporting little more than lingerie or swimsuits, the models are featured in studio portraits and on location, posing in an iconic London taxi and in front of British landmarks like Big Ben and the Tower Bridge.
Those behind the calendar are hoping to turn a few heads.
“All too often disabled people get ignored and desexualized, even ‘babied,’ being seen as people who just need looking after and not wanting or capable of having an active, healthy sex life and loving relationship,” said Jennie Williams, CEO of Enhance the UK and one of the models for the calendar.
Williams said her group wants to “change the way society views sex and disability.”
The calendar is available for free, but a donation is requested. All funds raised will go toward an inclusive sex and relationships education project, Williams said.

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