Tuesday, January 31, 2012

YOUR MOOD CAN IMPACT YOUR ILLNESS
We talk a lot on this blog about attitude, about believing--that being positive can help you achieve more in life, about believing in your own abilities, that it doesn't matter what other people say or think about you, it's about what you do and what you believe that really counts.  Well--turns out that keeping that positive attitude can really help you keep feeling good, and can help you feel better if you're sick:
"
When Amy Messier was preparing to undergo back surgery, doctors asked her to fill out a survey with an unusual question: "Have you felt so down in the dumps that nothing could cheer you up?"
Many medical conditions significantly affect the quality of a patient's emotional and social life, which often isn't apparent from physical measurements and lab tests alone. Now, more doctors are inquiring about their patients' pain, difficulty accomplishing everyday activities, embarrassment about a condition and other issues that physicians traditionally haven't considered. The insights can help determine how aggressively to treat an illness and what alternative therapies to offer certain patients, health-care experts said.
"We are trying to define health not just in the degree of rotation you have in your new knee, but can you walk your grandson to the school bus and do the things that make your life full and meaningful," said Martha Bayliss, a vice president and senior scientist at QualityMetric, a unit of UnitedHealth Group Inc. that designs questionnaires for use in various medical specialties.
Messier, 44, is a patient at the Spine Center at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., which inquires in a questionnaire about patients' limitations due to emotional issues and problems with social functioning. The surveys are completed at a patient's first visit and at return visits more than six weeks apart to identify any changes that might call for altering treatment. The questions "are a useful tool as far as keeping tabs on how well I'm doing," Messier said.
William Abdu, the spine center's medical director, says the surveys are part of the center's shared decision-making approach between doctors and patients. Understanding how a spinal condition affects quality of life can help determine, for example, whether a patient needs surgery or would do just as well with physical therapy, he said. "We pick up information [with the questionnaires] that patients are generally not planning to share with us," he said. "For us, it is as important as looking at an X-ray or an MRI."
Tools to measure quality of life have been used in medical research for decades. Now, health-care companies are adopting them for patient care, in part to identify which people would most benefit from aggressive treatments, especially those that are costly and carry extra risks. Such measurements are also being taken after treatment, including as part of a new federally funded program, to gauge outcomes and patient satisfaction.
QualityMetric licenses 3.8 million surveys a year to health-care providers, drug companies and researchers; it scored 350,000 surveys completed by patients in U.S. health systems and doctors' offices last year, compared to 10,000 in 2000. Among the most popular is a general 12-question survey that asks how a patient's health limits the ability to accomplish regular daily activities. Another is a five-question asthma-control test that inquires how often the condition has kept a patient from getting much done at work, school or home.
Discussing quality of life can help doctors and patients weigh the benefits and risks of different therapies."

"Being defeated is only a temporary condition; giving up is
what makes it permanent." -Marilyn Vos Savant

Monday, January 30, 2012

GOT PAIN? DEPT
For those of you with lower back pain, here's a remedy being examined these days--kettle bells.  Huh?  What?  What are you talking about?  No, for real--check it out:
"Kettlebells, cast-iron weights that have been used for centuries to train Russian soldiers and athletes, appear to be a promising therapy for back and neck pain, new research shows.
Although many people with backaches and other pains shy away from weight lifting for fear of hurting themselves, studies show that strength training can reduce pain and prevent reinjury. While most research has used traditional weight training exercises, researchers in Denmark set out to study whether a kettlebell workout offered therapeutic benefits to back pain sufferers.
The weights, named for their resemblance to a tea kettle with a looped handle, began showing up in American gyms about 15 years ago and have gained a popular following among exercise buffs looking for a quick full-body workout. Unlike traditional weight training, which typically focuses on lifting exercises, a kettlebell workout requires both swinging and lifting of the weights, which for beginners can be awkward and difficult to control.
In a study published last year, the Danish researchers recruited 40 pharmaceutical workers, mostly middle-aged women with back, shoulder and neck pain, who were randomly assigned to either a regular kettlebell workout or a control group that was simply encouraged to exercise. The first group trained with kettlebells in 20-minute sessions two to three times a week for eight weeks, according to the report, published in The Scandinavian Journal of Work, Environment & Health.
At the end of the study, the kettlebell exercisers reported less pain as well as improved strength in the trunk and core muscles, compared with the control group. Over all, working out with kettlebells reduced lower back pain by 57 percent and cut neck and shoulder pain by 46 percent.
The study’s senior author, Lars L. Andersen, a government researcher in Denmark, noted that workers who spend much of the day sitting are particularly vulnerable to back, shoulder and neck pain because they develop tightness and weak spots along the posterior muscle chain, which includes the muscles running from the lower back down to the glutes, hamstrings and calves. Kettlebell workouts strengthen the posterior muscle chain, and the increased blood flow to the back and leg muscles also may lessen pain by reducing the buildup of lactic acid, the authors wrote.
While isolation exercises like curls and presses have their benefits, kettlebell movements recruit multiple muscles and teach the body “to move as one unit,” said J.J. Blea, a certified kettlebell instructor and an owner of Firebellz in Albuquerque, one of the top kettlebell gyms in the country.
Because kettlebells can be difficult to control, it’s important to learn proper form from a certified instructor or a kettlebell class at a gym. The cornerstone of the kettlebell workout requires the exerciser to swing the kettlebell between the legs. In the Danish study, women started with a 17.5-pound kettlebell and men with a 26.5-pound kettlebell.
“When you’re doing a swing, you squeeze your quads, you squeeze your glutes, and you squeeze your abs,” said Mr. Blea. “By squeezing these muscles, you protect your back. It creates power, and it increases strength.”
Kettlebell training is also surprisingly aerobic. A study by the American Council on Exercise found that a 20-minute kettlebell workout burns about 21 calories a minute, the equivalent of running at a six-minute-mile pace."

MOEBIUS SYNDROME IN THE NEWS
And look at this--a story on the BBC news, about I believe our own Abbey Ryan and her son Riley, helps another family in the UK, and their doctors, realize that their son too has Moebius Syndrome:
"A grandmother was able to diagnose a toddler's one-in-a-million illness - which had left doctors baffled for years - after spotting the symptoms on television.
Carol Hayton, 44, was watching a BBC Three documentary series Underage and Pregnant when she saw a child demonstrating the same symptoms as her two-year-old grandson Declan.
The youngster was suffering from Moebius Syndrome, an extremely rare congenital neurological disorder characterised by facial paralysis and the inability to move the eyes from side to side.
She quickly visited Declan's parents, who live next door, and told them about her discovery.
As a result,Michelle Purcell and Anthony Hayton, both 23, from Barrow, Cumbria, secured an appointment with a geneticist - a biologist who studies genetics, - at a hospital in Lancaster last November, who confirmed the prognosis.
Carol said: 'There had been a trailer for the programme and I said to my husband that the little boy looked like Declan.
'We sat down to watch it and he looked the absolute spit. All children with Moebius Syndrome look the same.
'Michelle and Anthony had been to I don’t know how many appointments. I know it’s rare but the doctors should know something about it.'

There's more--read the whole thing.  Amazing that so many doctors were apparently so unfamiliar with Moebius Syndrome!

"Remember if people talk behind your back, it only means
you're two steps ahead!" -Fannie Flagg

Friday, January 27, 2012

Two quick items today...
GOT PAIN? DEPT.
Once again, there's more evidence that exercise can not only make you stronger, but also improve your mental state:
"Working out regularly may brighten the mood of people with chronic health problems like cancer, heart disease and back pain, according to the first sweeping look at previous research.
But it's no miracle cure: On average, six people would need to hit the gym or go for a jog for one person to see a mood improvement.
"It's a nice piece of evidence and I'm pleased because I like the concept," said Dr. Alan J. Gelenberg, who chairs the department of psychiatry at Penn State University in Hershey.
Gelenberg, who wasn't involved in the new work, said the findings jibe with guidelines from the American Psychiatric Association, which recommends regular exercise against the blues.
"There is some evidence for its use to prevent depression, and there actually is evidence for exercise as a treatment in itself," he told Reuters Health.
With the new study, published in the Archives of Internal Medicine, researchers wanted to weigh the evidence that training can also help chronically ill people who don't have a diagnosis of depression, but nonetheless may feel down.
That's important because depressive symptoms could make people less likely to take their meds, could increase their use of health services and decrease their quality of life, said Matthew Herring of the University of Alabama at Birmingham.
He and his colleagues combed through 90 previous studies including more than 10,000 people with health problems like cancer, heart disease, chronic obstructive pulmonary disorder (COPD), fibromyalgia, chronic pain or obesity.
In each study, people had been randomly chosen to do exercises -- on average, three times a week over 17 weeks -- or not.
According to Herring, people's depressive symptoms, as rated on a variety of psychological scales, dropped about 22 percent with exercise overall. That's similar to the effects on fatigue, anxiety, pain and other mental health outcomes.
"The magnitude of the effect of exercise training on depressive symptoms among patients found in our review is small but significant," he told Reuters Health by email.
Herring added that moderate -- at least 150 minutes of moderate intensity exercise per week -- and vigorous -- at least 75 minutes of vigorous intensity exercise per week -- seemed to help the most."

INSPIRATIONAL STORY OF THE DAY
And now...to inspire you, and to remind you how much YOU can do...read this story of a young lady who is once again swimming---even though she only has one leg:
"Denise Castelli is one of seven people chosen to be a part of Dr. Sanjay Gupta's Fit Nation Triathlon Challenge. As a recent amputee, Denise is searching for a way to reclaim the feeling of being a competitive athlete that she cherished before her accident.

Getting in the pool has forced me to face a number of fears. The first being the obvious fear - ditching the doggie paddle and actually learning how to swim. The other fear is not so obvious and much more personal.
The swim is the only leg of the race that I’ll be doing, well, legless. Prosthetics aren’t made to be submerged in water and I can imagine it would be quite difficult to swim with a heavy piece of carbon fiber attached to my body.
My prosthetic has been my safety net ever since I learned to walk again. It has essentially become my super hero cape. When I wear it, I know I can do anything. I have the world in the palm of my hand. Without it, am I handicapped?

That is a word I seldom use to describe myself. But whenever I catch a glimpse of myself without my prosthetic on, it really hits me. That’s when I’m forced to face the fact that this is me and this is how it’s going to be forever.
This isn’t the bad dream where you’re in your high school in nothing but your underwear. There is no magical unicorn blood that I can drink to help regenerate my leg. This is real life. I am an amputee. And that is a lot harder to swallow than the occasional mouthful of pool water.
Facing this realization, I jumped in the pool for the first time and, much to my surprise, it was not as bad as I expected it to be. My coaches, Mickey Cassu and Kristin Cacicedo of Start-Tri.com, had me swim the length just to see where my knowledge base was. By the time I reached the end, I was panting. All I could think was, “How am I supposed to swim half of a mile... in the Pacific Ocean?!?!”
Then Mickey assured me that if he swam the way I did, he would be out of breath too. That’s when I learned how to work with the water instead of against it.
Since that first lesson, I’ve been swimming on my own at least three times a week. Along with these solo swim workouts, I’ve met with Mickey and Kristin two other times for some one-on-one training. I can already feel the improvements that I’ve made, which makes me hungry for more. Every time I’m at the pool I “swim stalk” other people and I’m mesmerized by their perfect form and ability to glide through the water. I want that.
Helping me get there is my new best friend – the pull buoy. It helps me keep my focus on my breathing and where my arm entry is.
“Head in the water, rotate every third stroke to breathe, repeat.” Trying to form muscle memory is a lot harder than I remember. It’s going to take a lot of repetition. It’s going to take a lot of repetition!
So, for now, I’m just going to keep baby steppin’ until it becomes second nature. I’m going to keep clicking my leg off and hopping to the edge of the water to dive in. Overcoming all of my fears, one stroke at a time."

"Do what you feel in your heart to be right. You'll be
criticized anyway." -Eleanor Roosevelt

Thursday, January 26, 2012

WHAT MAKES PEOPLE HAPPY?
There's no question that depression has been a fact of life for some--though certainly not for all--of those in the Moebius community.  So we're always looking for ways to find more happiness, to find and to lead a more contented life.  But how do we do that?  Or, perhaps better put, what kinds of things make people happy?  What kinds of things make us happy?  I suppose many might suspect that what makes us happy would be big things--lots of money, or long, exotic vacations.  But that actually isn't necessarily true.  Read on:
"Yes, being rich does make you happy—so does being in a good marriage and being healthy. But that’s where common sense ends. A large body of happiness research has revealed some surprising findings about what makes people happy, in their personal lives and on the job.

Little events, not big ones, make you happier.  Most of us assume that major positive events, like a big vacation, entering a romantic relationship or getting a raise, will make us happy, but according to David Gilbert, author of Stumbling on Happiness, the happiness these events provide doesn’t last very long. “A recent study showed that very few experiences affect us for more than three months,” said Gilbert in an interview in the January issue of the Harvard Business Review (HBR).  People who are happiest have frequent good experiences. The frequency is more important than the intensity of the experience.  So someone who had a dozen nice things happen to them may be happier than someone who had a single amazing thing.
Similarly, bad events don’t make us as unhappy as you’d think. “When bad things happen, we weep and whine for a while and then pick ourselves up and get on with it,” said Gilbert in the HBR. We are pretty good at finding silver linings and making the best of things, like when you get in a bad car accident but don’t get injured and feel “lucky.”  
Do things that make you feel good.  Since happiness depends on a continual stream of mini positive events, try to incorporate behaviors that leave you feeling good into your daily life. That means getting enough sleep and exercising every day—both of which make you feel more energetic and improve your mood. Also try to work altruism into your life—small acts of kindness boost our own happiness.
Remind yourself of what you have. Twice a week, write down three things you’re grateful for, and if you’re comfortable doing it, tell them to someone else. These reminders act like instant replays of the positive happenings in your life.
Feel challenged at work but not threatened. People feel the happiest on their jobs when they are challenged, but not feeling like they’ll be fired if they don’t meet the challenge. As much as you can control your workload, make sure your goals are difficult but not out of reach. Managers also need to focus more on rewarding employees than threatening them.
Build a strong social network. One of the biggest predictors of happiness is the strength of your social bonds with friends and family. Make sure you don’t neglect your relationships because you’re too busy at work, and don’t assume that staying in touch via email or Facebook creates a strong relationship. Talking on the phone and face-to-face time are much better at strengthening social bonds.
Don’t daydream.  We all do it at work, but even dreaming of lying on a beach in Mexico is not good for you. According to the research, daydreaming actually makes people unhappier and reduces productivity at work."

"You've got to jump off cliffs and build your wings on the
way down." -Ray Bradbury

Wednesday, January 25, 2012

BRAIN TALK DEPT
And of course those of us with Moebius Syndrome--which is a condition, after all, that has to do with the functioning of nerve endings connected to your brain--are always interested in how our brains function.  Today, yet more research is out which suggests that--and this is no surprise--keeping your brain active throughout life prevents your brain from slowing down and misfiring later on:
"People who keep their brains active throughout life - performing brain-stimulating activities like reading, writing, and playing games - appear to have lower levels of the protein that forms brain clogging amyloid plaque. Amyloid plaque is used by doctors and researchers to characterize Alzheimer’s Disease.
While numerous studies have found associations between being physically and mentally active and having lower risk for Alzheimer’s disease, the researchers in a study published in the JAMA Archives of Neurology produced brain scan images to show that lifelong mental activities are associated with lower levels of amyloid deposits in the brain. The study was supported by grants from the Alzheimer's Association and the National Institutes of Health.

Lead author Susan Landau of U.C. Berkeley’s Helen Wills Neuroscience Institute, explained that previous studies have shown more cognitive activity associated with a smaller likelihood of developing Alzheimer’s disease, but that they didn’t use amyloid PET imaging. She noted that previous studies looked at amyloid in the subjects’ brains and “targeted a biological process,” showing an association between life long cognitive activity and decreased amyloid deposits in the brain.
The researchers studied a small group that included 65 healthy adults, ages 50 and older, 10 adults with Alzheimer’s disease (recruited from the Memory and Aging Center at UCSF), and 11 younger control subjects, ages 20 to 30. Participants completed mental tests and were interviewed about how often they engaged in mentally challenging activities throughout their lifetimes.
Subjects’ brains were imaged using PET scans and Pittsburgh Compound B, a radioactive compound that allows the imaging of amyloid plaques in the brain. While using this type of imaging was useful for this study, professor Landau explained that it’s not feasible for use in a typical medical office or hospital setting because the substance must be mixed by a chemist and injected into patients immediately to prevent deterioration of the substance. So while the researchers could use the compound in their carefully controlled study, it's not something that is readily available.
When the researchers ran the data for lifetime cognitive activity, lifetime physical activity with brain imaging results, the most significant association was between past cognitive activity and lower amyloid deposits. They did not find a significant association between physical activity and brain deposits, but Landau concedes that their method of assessing physical activity - using the past two weeks, may have had an effect on their results.
“The key thing is that this isn’t a study of Alzheimer’s patients. It’s important for a bunch of reasons,” Landau explained, “Once you have Alzheimer’s with an accumulation of amyloid, it’s too late to reverse, so trying to figure out what you can do at the earliest stages is important.”
“In completely healthy older people about a third of them have amyloid, healthy, no memory problems,” she said, “and the thinking is that they’re probably at much higher risk than normal people without [amyloid deposits]” Landau says that understanding why some healthy people don’t seem to be impaired, even with deposits, is “the million dollar question”.
While other Alzheimer’s research has looked at brain volume and genetic factors, unraveling the findings on brain activity and deposits is something that Landau says she hopes will spur more research that will reveal how to prevent or eliminate brain deposits. She also said that research is being done to devise brain imaging methods that could allow doctors and researchers to more easily see what is going on inside our brains."

"It takes courage to grow up and turn out to be who you
really are." -EE Cummings

Tuesday, January 24, 2012

MOEBIUS SYNDROME AWARENESS DAY
It is today--with today chosen because it is the birthday of the doctor who "discovered" our syndrome, Dr. Moebius.  And look at all the awareness being raised today:

Natalie Abbott, who has Moebius, writes a poem about the hopes being raised, and provides her thoughts about the meaning of this day.

My friend Chelsey Thomas shares what having Moebius means to her.

Last year, my friend Kelsey Ferrill told CTV News what Moebius Syndrome meant to her as well.

And just yesterday, Kelsey explained, very well, even further why Moebius Syndrome Awareness day is important to her.

A mom from Canada spreads the word about her daughter's Moebius Syndrome.

Another mom spreads the word about Moebius on her blog in honor of her son, Luke.

Here, the parents of a Moebius child in North Carolina help to raise awareness.

And here is a piece on the founder of the Many Faces website, and one of those most passionate about Moebius Syndrome Awareness Day, Tim Smith.

And these are just a few.  Many people are wearing purple today in honor of the day.  Here's to their dedication, and their courage.  Happy MSAD!

"We must never be afraid to go too far, for success lies
just beyond." -Marcel Proust

Monday, January 23, 2012

A SHOW OF HANDS
A fascinating story--a man named Andrew Dawson explores the world of disability through one's hands:
"Andrew Dawson has nice hands, and he knows it. He's fussy about moisturizing them and takes extra caution around the oven, although he uses power tools without hesitation.
These hands are the stars of "The Articulate Hand," a piece of performance theater about how various people's hands have become impaired and what effect that's had on them, both practically and psychologically. It's a collaboration between Dawson and neuroscientist Dr. Jonathan Cole, and supported by the Wellcome Trust.
"I mix up performance and lecture and basically talk about human stories," Dawson says. "It just happens that I'm using my hand as a vehicle, but really I'm talking about what it is to be human."
In the show, which he hopes to perform again this year, he talks about various people who have lost complete use of their hands and demonstrates to the audience, through his own body's movements, what these people's lives are like.
"I am looking for that unique balance between science and art, so that medial practitioners and researchers learn something about the work they are doing from a new perspective, without feeling that the performance is 'not for them,' Dawson said. "And that the art audience in turn learn something about their very structure, of what it takes to be a human without confusing them with science. "
In October at TEDMED, a gathering of notable researchers, thinkers and other professionals in the health care space, Dawson performed a few powerful segments of "The Articulate Hand."
For one portion he takes on the movements of Debbie Graham, a woman who injured her spine when she dove into a swimming pool, glided across it and hit the wall. Graham broke her neck, and is quadriplegic as a result.
Graham received bionic hand technology called the Freehand System, which involves electrodes under her skin connected to a receiver driven by a radio transmitter on the skin. In this way, moving her shoulder backwards and forwards makes her hand open and close. Cole wrote about Graham in a book called "Still Lives: Narratives of Spinal Cord Injury."
"She can hold her fork herself or a brush and brush her hair, and that's what gives her what she desires the most, and that's independence," Dawson says.
Dawson and Cole met after Dawson saw the neuroscientist's documentary about a man who cannot sense the relative position of his own joints and limbs. The pair worked together on a piece called "Process of Portrayal," which deals with experiences of people who are paralyzed, or for whom movement is difficult. Recognizing Dawson's "extraordinary hands" and artistic talent, it made sense for Cole to focus on that for their subsequent collaboration.
"Human hand function really reflects the evolution of the movement and creative [areas of the] brain, and one way to reflect on how we are defined by our hands is to look at the consequences of loss of function," Cole told CNN. "So our next project had to be about the hand and neurology."
Cole explains on "The Articulate Hand" website that there are parts of the brain called the motor and sensory cortex areas that are critical for the hand's coordinated action, as well as sensation that helps you to act -- for instance, when you reach into your pocket for coins, and you have to feel and grasp them in order to pick them up without seeing them.
He supplied the scientific insights and the patients that inspired "The Articulate Hand." Cole and Dawson also created short videos with the patients so that people can see what they are like in real life, in addition to Dawson's portrayal.
"We never pathologize the conditions but rather show you individual people living with their altered hands, so asking the audience to look beyond the problem to the person," Cole said.
The show has been performed in the United Kingdom in 2010 and at the World Science Festival in June 2011. Dawson took it to India last year also at a Wellcome Trust event. He is exploring multiple possibilities for 2012.
Dawson started out wanting to be an actor, and then got interested in dance, studying with the legendary dancer and choreographer Merce Cunningham. He also studied theater in Paris. His interest in mime illusions started at 16 or 17, but he credits that more to his imagination than to his hands.
Besides "The Articulate Hand," he's also created and performed "Space Panorama," which depicts the Apollo 11 moon landing with Dawson's hands alone, and a hand-based dance performance called "Quatre Mains." He's also a hand model.
If you want to try your hands at this sort of performance, Dawson has this advice: keep them moving, and keep them agile.
"There's a lot of bones there. You have more bones in hands and feet than you have in whole of the rest of your body. You need to keep them supple."

So this gives those with Moebius and other physical differences a chance to think:  so how does Moebius, or whatever you have, affect _your_ hands?  In my case, Moebius does not affect my ability to use my hands; I have all my fingers, and full use of my hands.  But it does affect them.  After all, because I can't make the usual facial expressions, sometimes I use hand gestures to emphasize my points.  Because people can't tell by looking at me, if I am looking at them, in class if I want to call on a student, I point at him or her. 

It is hard to imagine, then, not having the full use of my hands.  But there are those who cannot use them.  I guess it reminds us of the old adage:  be glad of what you do have.  But of course we also know that those who do not have full use of their hands, can learn to make do as well.

Special hat tip to my friend Matthew Joffe for first finding this link.

"Tell everyone what you want to do and someone will want to
help you do it." -W. Clement Stone

Friday, January 20, 2012

HER LIFE WITH MOEBIUS SYNDROME
Read this excellent essay by my FB friend Kelsey Ferrill.  She writes about her life with Moebius...some things she would do differently...and how it has all impacted her.  It is moving and from the heart, and my thanks to her for her permission to quote from it.  Read on:
"I was thinking about the article that I read yesterday and was totally disgusted by it. It was some senator guy in Virginia that said "Children with disabilities are a punishment from God to the mother". Not only was I disgusted to the extreme by this, it made me think. Please bear with me, this might get long and rambling.

I was thinking about this today. When I was younger, I didn't even talk about Moebius. If someone asked me what condition I had or whatever, it embarrassed me and I just did not want to talk about it.

This all changed when I attended the Conference in 2010. That's when I really got involved with the Moebius community. I did not have one friend on Facebook with Moebius and now my Moebius friends make up a good percentage of my friends list and I am eternally grateful for that. Anyway, today I was thinking.. I am not embarrassed by Moebius anymore. I am not ashamed and I am not angry that I have it. Actually, in a way, I am grateful. Yes, I think grateful is a good word. See, everyone's life experiences shapes who they will one day become. I find that I am more compassionate and tolerant, due to what I have been through in my 21 years. I feel that I care more about things that most people my age don't really think about. I am not trying to toot my own horn here, nor am I seeking accolades. I am just telling what I feel personally that Moebius has brought to me.

 I feel that it has made me a much better, more tolerant and stronger person. I truly do believe that. I really passionately care about spreading awareness and education of Moebius and other disabilities because I have seen what lack of education brings. It brings bullying and intolerance. Ignorance breeds ignorace, they say. And that is true. I feel that it is my duty, if you will, as someone who has walked in the shoes of having a disability to spread the word. To get the education out there so that future generations with disabilities will live in a far more tolerant and accepting world than we live in now. I really am trying to make it my mission to spread awareness....

I hope that the younger generations with Moebius will not feel that they are worthless because they have Moebius. I hope they come to the realization that I have just recently come to. Moebius doesn't make our lives worse. No, it enriches our lives. It makes us stronger. It makes us more resiliant. It really does. I have to reiterate this- I am NOT trying to put myself on a pedestal at all. I am telling my experience and I hope that this will help the younger generations with Moebius and i hope that it will also give their parents hope. It took me a while to see the positive things that Moebius has brought to my life and I sincerely hope that everyone else will see that in their own lives.

Moebius is NOT a curse.. It's a blessing. It's a blessing is disguise. Don't let it hold you back! Let your voices be heard. The world is out there, and we can do anything we set our minds to.

I also wanted to add something. A new thought occured to me today. I want to share it with those of you with children with Moebius, but it can apply to everyone. Don't let your fears or insecurities hold you back. I have done this and I want to share this so that no one will look back and regret time wasted, like I have. In high school I think subconsciously I didn't work hard in my classes because I figured that I wouldn't get anywhere with my life anyway because of my speech. You guys have no idea how hard this is for me to talk about but I really want to share my experience and encourage you guys to talk about this amongst yourselves and with your kids. No life is worth wasting and I look back on my high school years and wish I could go back. I don't wish that upon any of you guys and I want everyone to learn from my experiences which is why I am telling you all this. Don't let anything hold you back. Be exactly who you want to be and don't let fears about the future hold you back from achieving your dreams. If you do, you'll surely regret it!

All I can do now is share this experience and also look ahead to the future and not let things hold me back. It's hard but it makes us stronger. It really will, and I hope if anything that at least one person will learn from my mistakes."

Kelsey's story is an excellent example of applying to your life our quote for today:

"Don't let the negativity given to you by the world disempower
you. Instead give to yourself that which empowers you."
-Les Brown 

Thursday, January 19, 2012

MOEBIUS SYNDROME IN THE NEWS
Ryan Larsen, a young boy living in Minnesota with Moebius Syndrome, had his family write an excellent column for their local paper helping to raise awareness.  It's very well done--and check out the activity they're doing to help raise money to come to the conference in Philadelphia in July:
"Our son Ryan smiles with his heart because he is unable to move his facial muscles. Most of the time, a lack of smile can be mistaken as a sign of unfriendliness or being unapproachable but in reality people with Moebius Syndrome wear their smiles broadly across their heart.
Ryan’s sixth and seventh cranial nerves in his brainstem never developed and do not function. This leaves him unable smile, grimace, frown, blink his eyes or move his eyes laterally.
It is no doubt that you have not heard of Moebius Syndrome before; it is an extremely rare congenital neurological disorder that two out of one million babies are born with.
It is named after Jullius Moebius, a neurologist who first described the syndrome in 1888. Although no one knows for sure what exactly causes these cranial nerves to not form completely, there is some research being done. Moebius Syndrome always affects the sixth and seventh nerves in the brainstem but can also affect many other nerves.
Moebius has a wide spectrum; many children with the syndrome often have many other anomalies involved. We are thankful that after learning 12 nerves can be affected, only two of Ryan’s have been. Ryan was born with a cleft left hand, which about 48 percent of people born with Moebius Syndrome also have some sort of a limb abnormality.
Right now, Ryan is wearing glasses which will hopefully correct the slight crossing of his eyes. If not corrected, surgery is already scheduled that Ryan will need to correct his eyes. Having cross eyes is common in Moebius patients.
As horribly frightening as all of this was to initially hear about our newborn baby, there are so many things that have turned out positive and that we am very thankful for. We have been seen by some of the best doctors in the country and we have many supportive family members, friends, and a wonderful church family. My parents always told me to be thankful because things could always be worse. They were right; it could be a lot worse and we are so lucky to have an amazing son.
Ryan may not be able to smile and might be slower to crawl or walk but he is a lovable little boy who will grow up to be just like everyone else. As humans, we all want to be accepted and loved. We all have hopes and dreams, needs and wants and so does Ryan. His smile comes from his heart and if you can’t see his smile, you just aren’t looking hard enough.
Tuesday is Moebius Syndrome Awareness day. I encourage you to read up on Moebius Syndrome, tell someone about it, or give Ryan or someone with Moebius Syndrome an extra squeeze and tell them just how special they are. Another way to show your support on Jan. 24 is to wear purple."

"To the world you may be one person, but to one person you
may be the world." -Paulette Mitchell

Wednesday, January 18, 2012

THE CONTINUING NEED TO BUILD AWARENESS DEPT
For any of us, that is, who were born "different" and have various physical differences and challenges.  In the case of this young girl, she has a different kind of syndrome than Moebius; but if the story is true, it is certainly an outrage:
"The parents of a 3-year-old New Jersey girl say she's being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.
The girl's mother, Chrissy Rivera, last week posted a blog entry that described an encounter she claimed happened at The Children's Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.
"I put my hand up. `Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?"' she wrote. "I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."
Rivera's story was seen by Sunday Stilwell, the mother of two severely autistic boys, and she began an online petition last Friday, demanding that the hospital give a transplant to the girl. By Tuesday night, more than 23,700 people had signed it.
"I read Chrissy's original blog post, and I just cried. I couldn't believe it," said Stilwell, whose boys are 6 and 9. "I shared it on Twitter with all my followers and on Facebook."
Children's Hospital said in a statement that it "does not disqualify potential transplant candidates on the basis of intellectual abilities."
"We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities," it said, adding that it is "deeply committed" to providing the best possible medical care for all children, including those with disabilities.
The hospital did not comment further, citing patient confidentiality laws.
Stilwell has been in contact with Rivera daily over the events.
"There's a lot of camaraderie" between parents of special-needs kids, Stilwell said. "Almost all of us, across the board, have experienced some discrimination. I've certainly had some bad run-ins with some certainly ignorant doctors, but nothing like this. That's part of the reason I did it. I couldn't actually believe this was happening."
Messages seeking comment from the Riveras through Facebook and to their home were left Tuesday but were not immediately returned.
'Not a Simple Issue'
The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.
For example, the blog notes that Rivera told the hospital that "we plan on donating" the kidney, since they come from a large family.
"Most adults can't donate an organ, because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."
The supply of organs for child transplants is "extremely limited," Caplan added.
"So you have hard choices to make," he said. "Dialysis may be a better option."
According to the National Institutes of Health, 87,820 people were awaiting kidney transplants as of last February. The National Kidney Foundation, which seeks to enhance the lives of people affected by kidney disease, said 4,573 patients died in 2008 while waiting for kidney transplants.
A 2006 study from Ohio State University on kidney transplants for patients with mental disabilities found that the one- and three-year survival rates for 34 people were 100 percent and 90 percent, respectively.
"The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers," the paper noted.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are "denied evaluation and referral for transplantation."
Rivera's blog noted that doctors said Amelia won't need a transplant for six months to a year.
Some experts said that if Rivera's claims are accurate, the hospital's actions are very disturbing.
"Everyone deserves an equal chance to these organs, regardless of your mental capacity," said Charles Camosy, a professor of Christian Ethics at Fordham University.
Camosy said that while it's true that there are shortages of kidneys and other organs, the criteria used to make transplant decisions "should not ever devalue those that are mentally disabled."
"This is a growing movement that transcends liberal or conservative that says this kind of life, because it's so vulnerable, it deserves special protection," he said.
Whatever the medical details of Amelia's situation, her mother's blog captured the anger of parents with disabled children who don't want outsiders to decide life and death issues.
"Do not talk about her quality of life," Rivera wrote of her exchange with the doctor last week. "You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don't agree she should have it done? Fine. But tell me who I talk to next."
Mary Beth Happ, a professor at the University of Pittsburgh Medical Center whose research focuses on communication with non-vocal patients, said that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.
"Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an e-mail.
But Happ and Caplan noted that it's virtually impossible to have a full discussion of Amelia's case because of medical privacy laws.
"We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is "really problematic."
Caplan said he has heard of cases in which other transplant programs considered severe mental disability as a factor in transplants.
"With scarcity, social factors do count, with every transplant," he said."

Now of course, we cannot know for sure if this story is completely true; we don't know the doctor's name who supposedly implied this young lady would have a difficult time getting a kidney transplant, and so it could be a he-said/she-said thing.  However, it is important to note that the article makes it clear that such an attitude is not unheard of...

But what is really encouraging, in a way, is that there has been so much outrage over this story.  People are sympathetic towards this young girl and her family.  And that's good.  Even if no one actually said what has been alleged, it's great that people are outraged at the very idea of it.  The fact that such prejudicial ideas still exist, however, reminds us that we still have work to do.  People with physical differences are people too!!!

"You are never too old to set another goal or to dream a new
dream." -Les Brown

Tuesday, January 17, 2012

ANOTHER HEALTH TIP
Do you regularly take a small dose of aspirin, in order to help prevent strokes or a heart attack?  Be careful, new studies suggest:
"Nearly a third of middle-aged Americans regularly take a baby aspirin in the hope of preventing a heart attack or a stroke or lowering their cancer risk. But new research shows that aspirin is not for everyone, and that in some patients this so-called wonder drug is doing more harm than good.
“I stop a lot more aspirin than I start,” said Dr. Alison Bailey, director of the cardiac rehabilitation program at the Gill Heart Institute at the University of Kentucky. “People don’t even consider aspirin a medicine, or consider that you can have side effects from it. That’s the most challenging part of aspirin therapy.”
Last week, researchers in London reported that they had analyzed nine randomized studies of aspirin use in the United States, Europe and Japan that included more than 100,000 participants. The study subjects had never had a heart attack or stroke; all regularly took aspirin or a placebo to determine whether aspirin benefits people who have no established heart disease.
In the combined analysis, the researchers found that regular aspirin users were 10 percent less likely than the others to have any type of heart event, and 20 percent less likely to have a nonfatal heart attack. While that sounds like good news, the study showed that the risks of regular aspirin outweighed the benefits.
Aspirin users were about 30 percent more likely to have a serious gastrointestinal bleeding event, a side effect of frequent aspirin use. The overall risk of dying during the study was the same among the aspirin users and the others. And though some previous studies suggested that regular aspirin use could prevent cancer, the new analysis showed no such benefit.
Over all, for every 162 people who took aspirin, the drug prevented one nonfatal heart attack, but caused about two serious bleeding episodes.
“We have been able to show quite convincingly that in people without a previous heart attack or stroke, regular use of aspirin may be more harmful than it is beneficial,” said Dr. Sreenivasa Seshasai of the Cardiovascular Sciences Research Center at St. George’s, University of London."

There's more--read the whole thing.

And...from two men who have written and lectured about the subject frequently, here is:
HOW TO DE-STRESS YOUR LIFE
"The gloomy days of January can be the most miserable and stressful of the year, but it doesn't have to be this way. If you follow this ten step guide to destressing your life, then the next few weeks just might become the most serene and fulfilling ones of the year.
One step should be carried out on each of the next 10 days. They're based on the ideas found in the international best-seller "Mindfulness: An Eight Week Plan for Finding Peace in a Frantic World."
The book uses a program based on mindfulness meditation developed by us at Oxford University in the United Kingdom to relieve anxiety, stress, exhaustion and depression. Mindfulness has proved in some clinical trials to be at least as effective as drugs or counseling for dealing with these conditions.
So what is this mindfulness?
It is quite simply paying full, whole-hearted attention. A typical meditation involves paying full attention to the breath as it flows in and out of the body. Focusing on each breath in this way allows you to observe your thoughts as they arise in your mind and, little by little, to let go of struggling with them. You come to the profound understanding that thoughts and feelings (including negative ones) are transient. They come and they go, and ultimately, you have a choice about whether to act on them.
Mindfulness is about observation without criticism and being compassionate with yourself. When unhappiness or stress hovers overhead, rather than taking it all personally, you learn to treat it as if it was a black cloud in the sky, and to observe it with friendly curiosity as it drifts past.
Scientific studies have shown that mindfulness not only prevents depression, but it also positively affects the brain patterns underlying day-to-day anxiety, stress, depression and irritability. When these negative thoughts arise, they dissolve away again more easily. Other studies have shown that people who regularly meditate see their doctors less often and spend fewer days in hospital. Memory improves, creativity increases and reaction times become faster.
Here are 10 ways to decrease stress and increase mindful meditation in your life:
Day 1: Eat some chocolate
At this time of year, it's easy to eat too much chocolate and other high-carb "comfort foods." At first, all that lovely rich food is packed with flavor and totally irresistible. but after a while, you hardly notice it at all. And if you are in a rush, it tends to be wolfed down by the handful.
When you eat without thinking you miss out on so many wonderful flavors, textures and aromas. A single bar of chocolate, for example, has more than 300 flavors. How many of them do you normally taste?
Reconnecting with your senses is the heart of mindfulness, so why not try this chocolate meditation to help you enjoy your food again?
Day 2: Go for a short walk
Walking is one of the finest exercises and a brilliant stress reliever. A good walk can put the world in perspective and soothe your frayed nerves. It's the ideal way of taking a break from all of that work that built up during the holidays.
 Walking is one of the finest exercises and a brilliant stress reliever.
So today, why not go for a 15- to 30-minute walk? You don't have to go anywhere special. A walk around your neighborhood, taken in an open frame of mind, can be just as interesting as a hike through the mountains.
There's no need to feel that you have to rush anywhere; the aim is to walk as mindfully as you can, focusing your awareness on your feet as they land on the ground and feeling the fluid movements of all the muscles and tendons in your feet and legs.
Pay attention to all of the sights, sounds and smells. You might see the deep red color of the berries on the trees and bushes or perhaps the inky grayness of slushy ice and snow. See if it is possible to be open to all your senses: Smell the mustiness of the winter leaves; feel the rain on your head; the breeze on your face; watch how the patterns of light and shade shift unexpectedly.
Day 3: Take a three-minute breathing space
When you're becoming angry, exhausted, anxious or stressed, it's difficult to remember why you should remain calm. And at such times, it can feel as if the whole world was created just to bait you.
The three-minute breathing space was created to deal with such feelings. Its impact is twofold.
First, it's a meditation that's used to punctuate the day, so that it dissolves negative thought patterns before they gain control over your life. Secondly, it's an emergency meditation that helps ground you when your thoughts threaten to spiral out of control.
When you are carrying out the meditation, you may find that your mind repeatedly runs away with itself. This is entirely natural. It's what minds do. They leap around and offer up thoughts to your conscious self, much as a child hold's up his or her toys to an approving adult. When you find that your mind has wandered, gently escort it back to full awareness and continue following the instructions on the track as best you can.
Day 4: Do something pleasurable
At this time of year, exhaustion, stress and unhappiness can easily dominate. You can start to experience "anhedonia" -- that is, you can't find pleasure in life. The things you used to enjoy now leave you cold -- you feel as if a thick fog has put a barrier between you and simple pleasures, and few things seem rewarding any more.
You can counteract this by taking baby steps toward the things that you used to like doing but have since forgotten about. You can make a start by choosing one or two of the following things to do (or perhaps come up with your own ideas):
-- Be kind to your body. Have a hot bath; have a nap; treat yourself to your favorite food without feeling guilty; have your favorite hot drink.
-- Do something you enjoy. Visit or phone a friend (particularly if you've been out of contact for a while), get together what you need so you can do your favorite hobby, get some exercise, bake a cake, read something that gives you pleasure, listen to some music that you have not listened to in a long while.
Day 5: The intensely frustrating line meditation
Sometimes life can seem like one big long line. You have to line up to buy gas, to pay for the food in the supermarket and all of the bars and restaurants are crammed with people waiting to order.
Next time you feel like screaming "why don't they just get on with it!", try carrying out our Intensely Frustrating Line Meditation instead.
When you are in a line, see if you can become aware of your reactions when something holds up your progress. Perhaps you joined the "wrong" line, and are obsessing about whether to make a dash for another one that seems shorter? At such times, it is helpful to check in with what's going on in your mind. Taking a moment to ask yourself:
-- What is going through my mind?
-- What sensations are there in my body?
-- What emotions and impulses am I aware of?
Mindfulness accepts that some experiences are unpleasant. Mindfulness will, however, help by allowing you to tease apart the two major flavors of suffering -- primary and secondary.
Primary suffering is the initial stressor, such as the frustration of being in a long line. You can acknowledge that it is not pleasant; it's OK not to like it. Secondary suffering is all of the emotional turbulence that follows in its wake, such as anger and frustration, as well as any ensuing thoughts and feelings that often arise in tandem. See if you can see these clearly as well. See if it's possible to allow the frustration to be here without trying to make it go away.
Day 6: Set up a mindfulness bell
Pick a few ordinary activities from daily life that you can turn into "mindfulness bells," that is, reminders to stop and pay attention to things in great detail. There's a list below of things you might like to turn into bells. You don't have to turn them all into mindfulness bells -- they are just suggestions.
-- Preparing food: Food offers a host of opportunities to become more mindful. If you're preparing food, particularly if they are rich in flavors, smells and textures, then try and pay full mindful attention to all that you are doing.
-- Washing the dishes: This is a great opportunity for exploring physical sensations. If you normally use a dishwasher, do them by hand for a change. When your mind wanders, shepherd it back to the present moment. Pay attention to the texture of the dishes, the temperature of the water, the smell of the detergent, etc.
-- Listening to friends: If you are planning to meet a friend, or bump into one unexpectedly, it's easy to lapse into the same tired-old conversations. So why not turn a friend's voice into a "bell" that's a signal to pay full attention to what they are saying? Notice when you are not listening -- when you start to think of something else, what you are going to say in response etc. Come back to actually listening.
Day 7: The ten-finger gratitude exercise
To come to a positive appreciation for the small things in your life, you can try the gratitude exercise. It simply means that once a day you should bring to mind 10 things that you are grateful for, counting them on your fingers. It is important to get to 10 things, even when it becomes increasingly harder after three or four. This is exactly what the exercise is for -- intentionally bringing into awareness the tiny, previously unnoticed elements of the day.
Day 8: Do the sounds and thoughts meditation
Sounds are as compelling as thoughts and just as immaterial and open to interpretation. Certain songs might cheer you up -- or send you into an emotional tailspin. Sensing the power of sound -- and its relationship to thoughts and emotion -- is central to mindfulness and to becoming a happier, more relaxed and centered person.
Today, why not try our sounds and thoughts meditation? This elegantly reveals how the mind conjures up thoughts that can so easily lead us astray. Once you realize this -- deep in your heart -- then a great many of your stresses and troubles will simply evaporate before your eyes.
This meditation gradually reveals the similarities between sound and thought. Both appear as if from nowhere, and we have no control over their arising. They can easily trigger powerful emotions that run away with us leaving us feeling fragile and broken.
Day 9: Reclaim your life
Think back to a time in your life when things seemed less frantic, before the time when some tragedy or increase in workload took over your daily existence. Or it might be more recent than that, before the run-up to Christmas say, or perhaps a relaxing break in the summer.
Recall in as much detail as you can some of the activities that you used to do at that time. These may be things you did by yourself (reading your favorite magazines or taking time to listen to a track from a favorite piece of music, going out for walks or bike rides) or together with friends or family (from playing board games to going to the theater).
Choose one of these activities and plan to do it today or over this weekend. It may take five minutes or five hours, it might be important or trivial, it might involve others or it could be by yourself.
It is only important that it should be something that puts you back in touch with a part of your life that you had forgotten -- a part of you that you may have been telling yourself was lost somehow, that you could not get back to. Don't wait until you feel like doing it; do it anyway and see what happens. It's time to reclaim your life!
Day 10: Go to the movies
Ask a friend or family member to go with you to the movies -- but this time, with a difference. Go at a set time (say 7 p.m.) and choose whatever film takes your fancy only when you get there. Often, what makes us happiest in life is the unexpected -- the chance encounter or the unpredicted event. Movies are great for all these.
Before you go, notice any thoughts that may arise such as, 'I haven't got time for pleasure', or, 'What if there is nothing on that I'll enjoy?'
They undermine your enthusiasm for taking action and discourage your intention to do something that might nourish your life in important ways. Once you're inside the cinema, just forget about all this and be consumed by the film."

"There is nothing noble in being superior to another person.
True nobility is in being superior to your previous self." -unknown

Monday, January 16, 2012

DON'T OVERDO IT
A good reminder--I know many of you out there work out and exercise regularly.  But as Dr. Sanjay Gupta reminds, too much of a good thing can be bad for you:
"Q: I can’t stop working out! Is it possible to overdo it?
A: Actually, yes. Let your body be the judge. If you suffer from pain, muscle soreness that doesn’t go away in a day, or loss of strength, speed, or endurance - all signs of overtraining - then you probably need a break from the gym to recover.
There’s also a psychological disorder called "exercise bulimia," or compulsive exercise, in which people work out excessively, often for hours at a time. They get so obsessed with sweating off unwanted calories that it negatively impacts other parts of their life, from their career to their relationships.
If that’s you, try talking to a therapist who specializes in eating disorders."

AND FOR THOSE NOT OVERDOING IT, HERE'S A TIP
To burn a little excess fat, real quick?  Squeeze in some jumping jacks:
"Complement your cardio (30 minutes of walking a day, remember!) by adding in 3 sets of 100 “jacks” throughout the day.
It only takes 2 minutes to complete each set, and you’ll burn a total of 60 additional calories a day. Every little bit helps! Squeeze in a set -- traditional high-impact JJs, or modified low-impact JJs -- before showering, while your computer is booting up, during a TV commercial break, or while dinner is cooking. Such an easy way to get your heart pumping and rev your metabolism!"

"Most great people have attained their greatest success just
one step beyond their greatest failure." -Napoleon Hill

Friday, January 13, 2012

A LITTLE SPICE, AND EVERYTHING NICE
I know many of you out there in the Moebius community love to cook--you love recipes, trying new things, and maybe cooking with a little spice in your food.  Well, good news--not only does a little spice make the grub taste good, it can also be good for you:"We often hear about the health benefits of eating more fruits and veggies, getting a little more exercise, or getting our weight down, but did you know that adding more spices and herbs to your food can reduce inflammation and also reduce your risk of chronic disease?
In the past 50 years, we have come to understand that cancer and other chronic illnesses may be due to damage or dysregulation of some of our genes. It has only been in the past decade, however, that scientists have discovered that many nutrients in foods, including spices, can prevent these genetic changes and reduce our risk for some of these diseases.
Dr. Bharat Aggarwal, an oncologist at the M.D. Anderson Cancer Center in Houston, is one of the leading researchers in the world looking at the health impact of spices and herbs. In many recent scientific publications and studies, he and his colleagues have uncovered the health benefits of these food ingredients and shown how they may prevent and even help treat chronic diseases.
One of the powerful ways that spices and herbs exert their protective effect in the body is by inactivating a protein complex in cells that's known as NF-kappa B.
NF-kappa B acts like a master control switch for inflammation and cell growth. When it's activated, it turns on hundreds of genes that are involved in abnormal cell growth and inflammation; this can allow a cancer cell to continue growing, or it can promote ongoing inflammatory responses in the body that can fuel chronic disease.
Blocking NF-kappa B can reduce cancer cell growth and the inflammation that leads to a number of chronic diseases, including coronary artery disease, Alzheimer's, osteoporosis, arthritis and autoimmune diseases like multiple sclerosis.
Populations that consume lots of these spices seem to have less chronic disease than we do in the United States. For example, in India, turmeric is frequently consumed in curries. Turmeric contains the phytochemical curcumin, and curcumin is a particularly powerful inhibitor of NF-kappa B.
In India, Alzheimer's disease is far less common than it is in the U.S., and scientists suspect that it is the frequent consumption of turmeric that has resulted in this difference.
In addition to turmeric, beneficial spices include mint, rosemary, garlic, basil, ginger, fenugreek, cumin, cloves, coriander, cinnamon, black pepper and red chile pepper.
Scientists are still trying to determine which of these spices would be useful if taken by capsule to prevent or treat disease, and the data is very intriguing and encouraging.
Before you run out to buy these in pill form, though, we encourage you to include and enjoy these spices in your food on a daily basis: Add some cinnamon to your breakfast cereal, enjoy mint-ginger tea with your lunch, and top your dinner pasta with a little garlic and rosemary. If you're really adventurous, try making your own curry -- a great way to experiment with fresh or dried turmeric.
Drs. Kay Judge and Maxine Barish-Wreden are medical directors of Sutter Downtown Integrative Medicine program in Sacramento, Calif."

AND NOW ON TO...NFL PLAYOFF PICKS!
Let's see if I can go 4-0!!

Denver at New England.  LINE:  Patriots by 13.5.  MY PICK:  PATRIOTS.  Hey, don't get me wrong; Tim Tebow and the Broncos played well last week, and their upset of the Steelers was a great story.  But...they burned the Steelers often because of Pittsburgh defensive lapses, especially against the deep ball.  The Steelers bunched up too close to the line to stop the run.  Look for the wily Bill Belichick to play safe, to take away the deep stuff, and to force Tebow and Denver to undertake long, time-consuming drives, forcing Tebow to execute well on play after play, instead of relying on quick strikes.  And look for Tom Brady to have another good day--remember, he put up 41 points on Denver in a game earlier this year.  Impossible not to go with Brady and the Pats in this one.

New Orleans at San Francisco.  LINE:  Saints by 3.5  MY PICK:  SAINTS.  I know, everyone says the Saints don't play well away from home.  But remember--this game is in San Fran--not exactly the icebox of the nation at this time of year.  The field conditions should be decent; no blizzards.  Drew Brees in my view is playing as well as anyone; and I just think that in this game, when it comes down to crunch time,  Brees will out-perform Alex Smith of the Niners, and the Saints will get the job done.

Houston at Baltimore.  LINE:  Ravens by 7.5.  MY PICK: RAVENS.  I love Houston's defense, and it's run game.  But--you're asking a rookie QB, T.J. Yates, to go on the road and beat that very tough Ravens defense.  I just don't think it will happen.  The Ravens should roll here.

NY Giants at Green Bay.  LINE:  Packers by 7.5.  MY PICK:  GIANTS.  This is one road "dog" (underdog)  I'm picking.  The Giants are peaking at the right time.  They're healthy; their defense line can pressure Aaron Rodgers; their run game can chew up some clock; Eli Manning is playing well.  Now, look for the Packers to pull this game out late, and to win narrowly.  Aaron Rodgers has simply played too well this year to see his team lose this game at home.  I'm not picking him to lose.  But the Giants are playing well enough to keep this game very close.  Look for them to do so. 

"You are an extremely valuable, worthwhile, significant person
even though your present circumstances may have you feeling
otherwise." -J Newman

Thursday, January 12, 2012

HOW TO DEAL WITH MEAN PEOPLE
Here is something that all of us with Moebius, or other physical differences, can relate to--how to handle persons who are just not nice.  We see rude folks nearly every day--and maybe their uncivil behavior has something to do with prejudice towards the fact that we have Moebius Syndrome; but maybe it doesn't.  In any case, dealing with mean people is no fun--and as this opinion piece relates, it can also be bad for our health.  But--as always--the piece also discusses ways to cope:
"Not that long ago I was crossing the street with my daughter when a speeding car almost plowed us down.
“Hey! This is a crosswalk!” I yelled through the passing car’s open window.
“I don’t care!” The driver shot back.
Mean people, like vermin, have been around forever. But for some reason - maybe it’s the economic trials of these past few years - there seem to be more of them than there used to be. And I’m not the only one who thinks so: A 2010 National Civility Survey found that two out of three Americans believe civility is a major issue, and three in four believe the negative tenor in our country has grown worse over the past few years.

“When we talk about civility and good manners, we are not talking about which forks to use for salad - that’s etiquette,” says Dr. Pier Forni, director of The Civility Initiative at Johns Hopkins and author of "The Civility Solution: What to Do When People Are Rude."
“Civility is about how we treat one another in everyday life and is closely related to ethics. The principle of respect for the person holds that we ought to treat others as an end in themselves, rather than as a means for the satisfaction of our own immediate needs and desires.”
I find myself nodding in agreement with Dr. Forni, but then I try to imagine repeating his words to the dude who almost ran us down in the crosswalk. I’m thinking that guy may not be convinced with an argument about the interplay between ethics and civility.
So why should we be nice if we don’t have to be?
The health benefits, for one. According to Forni, “Science tells us that when we engage in acts of civility and kindness, both the person on the giving end and the one on the receiving end benefit; it’s known as ‘helper’s high.’ Cascades of hormones and neurotransmitters activate when we are giving a token of our civility.”
Indeed, a slew of studies confirm that kinder people tend to live longer and lead healthier lives; volunteers have fewer aches and pains; and compassionate people are more likely to be healthier and successful.
Widespread incivility, on the other hand, can wreak havoc. Mean people, writes Stanford professor Robert Sutton, have “devastating effects, partly because nasty interactions have a far bigger impact on our moods than positive interactions - five times the punch.”
Says Sutton: “You have to overwhelm the negative with so much positive, it’s ridiculous!”
Moreover, due to a process called emotional contagion, the ripple effects of demeaning acts adversely affect coworkers, family members and friends who watch - or even just hear about - ugly incidents.
Sutton has written widely about the economic and social benefits of rooting out jerks from the workplace (except Dr. Sutton doesn’t call them jerks). His bestselling book is called "The No A**hole Rule: Building a Civilized Workplace and Surviving One That Isn’t."
Sutton distinguishes between occasional rudeness - of which everyone is more or less guilty - and certified jerks. His “Dirty Dozen” of common everyday actions that out a certified nasty person include: personal insults, invading one’s personal territory, uninvited physical contact, threats and intimidation (both verbal and nonverbal), sarcastic jokes and teasing used as insult delivery systems, withering email flames, status slaps intended to humiliate their victims, public shaming or status degradation rituals, rude interruptions, two-faced attacks, dirty looks, and treating people as if they are invisible.
Certified jerks display persistent patterns of these bad behaviors and have a long trail of victims. (Sutton has also developed a self-test called the ARSE, but I took it and I’m pretty sure it can be gamed.)
But why are people mean? Forni suggests a handful of root causes that may cover the entire spectrum of uncivilized behavior: lack of restraint; stress, illness or depression; anonymity; insecurity; lack of time; or a sense of entitlement.
“All of these factors can work together,” says Forni. “In traffic, for example, anonymity and stress work together. The first driver cuts off the second driver. Perhaps both are late and therefore anxious. They don’t think they know one another. And so they engage in some finger puppetry. But say one of the drivers suddenly recognizes the other as the pastor of his church. You will have an immediate effort to minimize what happened.”
According to Forni, anonymity also plays into uncivil behavior online: “You have this wonderful technological marvel that can improve our lives and yet it has become a dismal collector of the moral toxins of our society.” (Imagine Forni’s elegant turns of phrase spoken with a fabulous Italian accent.)
Ultimately, civility is about power - and character. “The difference between how a person treats the powerless versus the powerful is as good a measure of human character as I know,” writes Sutton.
Since nasty people are unavoidable in daily life, Sutton offers a few tips how to deal with them - and perhaps rebound more quickly from run-ins:
Stand up or develop indifference.
Sutton says that if you find yourself the victim of bad behavior, do a power analysis: “You can either address the problem directly, or you can exercise the fine art of emotional detachment. Can you take a picture of the jerk’s license plate and report him to the police? Is there a number on the side of his car you can call? If yes, fine. If not, then try to forget the incident as quickly as possible. There are times when things are beyond your control and the best thing for your mental health is not to give a damn. In those circumstances, find ways to engage in short-term denial.”
Reframe and change how you see things.
Attempt to reframe a run-in with a jerk in way that is less upsetting. “This is a kind of mini cognitive therapy,” says Sutton. If you can’t escape a stressor, you can reduce the damage by changing your mind-set about what’s happening.
“Develop a coping mechanism, if you must. Sometimes we are able to find delusions that serve us.”
Sutton offers a reframing example from a recent holiday meal, where a relative did something rude.
"Afterwards I was complaining to my wife and she turned to me and said: ‘I don’t want to hear it. I don’t want the 1% that was bad to ruin the 99% that was good.’ And then she left the room. It was surprisingly effective.”
Sutton cautions, however, that if you’re in a long-term situation that is bad every time, reframing will not make it go away.
Limit your exposure.
Avoid if you need to. For example, if you shop at the same place frequently, go out of your way to avoid the mean clerks. By limiting how often and intensely you face jerks, you create a buffer against their demeaning behavior.
In a work context, Sutton offers additional strategies, like building pockets of safety, support and sanity; and seeking and fighting battles that you have a good chance of winning.
Later, reflecting on Sutton’s strategies - stand your ground, detach, reframe and avoid - I am reminded of the oft-repeated meditation for “the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”
And I add a little prayer of my own: “Please God, next time grant me a baseball bat for the car that almost ran my kid over.”

"Be careful the environment you choose for it will shape you;
be careful the friends you choose for you will become like
them." -WC Stone

Wednesday, January 11, 2012

AVOID TOO MUCH STRESS--IT SHRINKS YOUR BRAIN (NO, REALLY!)
All of us with Moebius Syndrome, and/or other physical differences, know that stress comes with the territory.  We're different.  Other people know it.  We deal with that every day.  It can be hard to meet new people, deal with new situations, deal with others' subtle and often-unintentional prejudices.  Still, it's important to focus on the positives, on all that we truly have to offer and have inside of us, to relax and avoid the stress--because the fact is, new studies show, too much stress is bad for you:
"Everyone knows stress can cause headaches and sleepless nights. But a new study suggests it can actually shrink your brain.
We’re not talking run-of-the-mill stressors here, like a looming deadline or a missed bus.
“These are bad things happening, like a relationship breakup, loss of a loved one, being held at gunpoint,” says Yale neurobiologist Rajita Sinha, senior author of the new report.
Simply feeling stressed-out was not linked to gray matter shrinkage. But feeling stressed-out combined with a history of stressful life events was. In particular, stress was linked to markedly less gray matter than expected in a part of the prefrontal cortex that regulates emotion and self-control, not to mention blood pressure and blood sugar.
That shrinkage might serve as a red flag about a greater risk of chronic diseases such as high blood pressure as well as psychiatric disorders, according to the researchers. And maybe it’s already affecting brain function in the healthy individuals she studied, Sinha says.
In other words, the stresses of modern life are far more complicated than what our ancestors experienced. “You can say stresses are a part of life, so what’s the big deal?” Sinha says. But it is a big deal, she adds, because there’s extensive evidence that stress has contributed to the rise in chronic diseases.
Most human research about the impact of stress on brain structure has focused on patients with stress-related psychiatric disorders such as addiction and anxiety, according to the authors. Those studies have found decreased volume in the frontal lobe, considered the center of emotion control and personality.
But studies of the cumulative effects of stress on the brains of healthy people are rare, Sinha’s team writes in a paper published online this week in Biological Psychiatry.
The study enrolled 103 health adults ages 18 to 48. Researchers conducted structured interviews with the volunteers to collect information about stressful life events and subjective feelings of chronic stress.
The scientists then used MRI to scan the volunteers’ brains.
Whose brains shrunk more, men’s or women’s? You might think you know the answer, but the researchers don’t, because they didn’t have enough women to compare the sexes.
The take-home message, Sinha says, is that the better you cope with stress -- take a walk, call a friend -- the better off your brain will be."

"Magic is believing in yourself. If you can do that, you can
make anything happen." -Foka Gomez

Tuesday, January 10, 2012

LIFE IS TOUGH--AND WHAT IT MEANS
Below you will find an essay by former Heisman Trophy winner and NFL player Danny Wuerffel.  He at one time seemed to have everything--he was a football star, he had fame, money...but all that didn't last, and then he was laid low by a medical/physical difference--Guilliaine-Barre Syndrome.  And Wuerffel then got to realize what many of us with Moebius had known for a long time--that life can be "tough."  But he's learned some lessons from it--and whether you agree with all of his religious and other perspectives or not, you'll find it worth reading.  Read on:
"In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle - injury, illness or other hardship - they tapped their inner strength and found resilience they didn't know they possessed. This week, Heisman Trophy winner and former NFL player Danny Wuerffel talks about his battle with Guillain Barre Syndrome, and why he left the NFL to run Desire Street Ministries.
"Life is tough."
I remember hearing those words often growing up, especially from my father when things weren’t going my way. I hated those words as a kid... and I still do.
Something inside me resists any suggestion that life shouldn’t be comfortable.
In early June of last year I was diagnosed with a condition known as Guillian Barre Syndrome, an auto-immune disorder that left me temporarily paralyzed. While the acute and debilitating part of GBS didn’t last too long for me, I’ve been battling with my recovery for over seven months now, and the difficulties in my life related to the illness continue to make life much harder than I want.

Overall, I’m doing better and I’m thankful for the progress (most people tell me I don’t look sick anymore, and some days I can be pretty active). But I regularly feel I don’t have the ability to keep up with even a few activities each day. I feel like I’m in a NASCAR race on a moped.
Life is tough?
Being sick is tough. Raising kids is wonderful but tough. Marriage is beautiful but also tough. Ministry is often tough. And that’s before you throw in hurricanes (we lost our home in Katrina) and GBS. Perhaps those words from my father revealed more truth than I realized.
In Richard Rohr’s book "Adam’s Return" - a book surveying how various cultures initiate their boys into manhood - he says that one of the first tasks is to force the boys to experience the “toughness” of life, often through difficult, painful and sometimes bloody ordeals.
If a boy is forced to accept the fact that life will be tough, then at least he doesn’t have to spend the rest of life getting bent out of shape and surprised every time he encounters the difficulties of life in a broken world.
It’s tough enough to deal with the hardships in life, but to have a false expectation that life will be easy - that we somehow deserve things to be easy - that can turn a tough moment into an unbearable one.
Yet every time I turn on the television or see a magazine cover, I’m barraged with messages to the contrary. You should be happy, and you deserve it. We live in America, for heaven’s sake. Unfortunately, I hear many similar messages from pastors and authors. Contemporary faith in America often mirrors our culture’s obsession with the “good life.”
Life has a lot of seasons, and some of them are filled with joy, gladness and celebration. There are many times to laugh and smile.
But we shouldn’t get swept away by the illusion that life has only one season, and it’s always delightful. Why can’t we be people with the depth, courage and trust to embrace the hard and heavy things of life?
I believe God resides not only in the joy and new life associated with the season of spring, like a reward if we somehow survive winter. We can find him in every season... if we’re willing to look long and hard enough.
I just happen to be in a tough one right now. It’s winter for me.
I trust a new season is on the way. God will bring me spring when He is ready. He just wants to meet me in the winter right now.
I remember my father’s words, “Life is tough, Danny.”
He was right."

"You cannot expect to achieve new goals or move beyond your
present circumstances unless you change." -Les Brown