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

And not only did I think this was interesting, but I also know that many of my Moebius friends love their coffee.  Well, guess what--coffee and a good, healthy workout might just kinda go hand in hand.  Read on:

Half of Americans start their day with coffee, and according to recent study, working out after downing a cup of java may offer a weight-loss advantage.

The Spanish study, published in the International Journal of Sport Nutrition and Exercise Metabolism, found that trained athletes who took in caffeine pre-exercise burned about 15% more calories for three hours post-exercise, compared to those who ingested a placebo.

The dose that triggered the effect was 4.5 mg of caffeine per kilogram of body weight. For 150-pound woman, that's roughly 300 mg of caffeine, the amount in about 12 ounces of brewed coffee, a quantity you may already be sipping each morning.

If you've always thought of coffee as a vice -- one you're simply not willing to give up -- you'll be happy to know that it's actually a secret superfood. And if you exercise, caffeine can offer even more functional benefits for your workouts.

Here are five more reasons to enjoy it as part of an active lifestyle, along with five "rules" for getting your fix healthfully.

Improved circulation

Recent Japanese research studied the effects of coffee on circulation in people who were not regular coffee drinkers. Each participant drank a 5-ounce cup of either regular or decaffeinated coffee. Afterward, scientists gauged finger blood flow, a measure of how well the body's smaller blood vessels work.

Those who downed "regular" (caffeinated) coffee experienced a 30% increase in blood flow over a 75-minute period, compared to those who drank the "unleaded" (decaf) version. Better circulation, better workout -- your muscles need oxygen!

Less pain

Scientists at the University of Illinois found that consuming the caffeine equivalent of two to three cups of coffee one hour before a 30-minute bout of high-intensity exercise reduced perceived muscle pain. The conclusion: caffeine may help you push just a little bit harder during strength-training workouts, resulting in better improvements in muscle strength and/or endurance.

Better memory

A study published this year from Johns Hopkins University found that caffeine enhances memory up to 24 hours after it's consumed. Researchers gave people who did not regularly consume caffeine either a placebo, or 200 mg of caffeine five minutes after studying a series of images. The next day, both groups were asked to remember the images, and the caffeinated group scored significantly better.

This brain boost may be a real boon during workouts, especially when they entail needing to recall specific exercises or routines.

Muscle preservation

In an animal study, sports scientists at Coventry University found that caffeine helped offset the loss of muscle strength that occurs with aging. The protective effects were seen in both the diaphragm, the primary muscle used for breathing, as well as skeletal muscle. The results indicate that in moderation, caffeine may help preserve overall fitness and reduce the risk of age-related injuries.

More muscle fuel

A recent study published in the Journal of Applied Physiology found that a little caffeine post-exercise may also be beneficial, particularly for endurance athletes who perform day after day.

The research found that compared to consuming carbohydrates alone, a caffeine/carb combo resulted in a 66% increase in muscle glycogen four hours after intense, glycogen-depleting exercise. Glycogen, the form of carbohydrate that gets stockpiled in muscle, serves as a vital energy "piggy bank" during exercise, to power strength moves, and fuel endurance.

Packing a greater reserve means that the very next time you work out, you've upped your ability to exercise harder and/or longer.

But this news doesn't mean you should down as much coffee as possible -- your good intentions may backfire. In my work with athletes, I recommend five basic rules to best reap caffeine's rewards:

Don't overdo it. The maximum amount of caffeine recommended for enhancing performance with minimal side effects is up to 6 mg per kg body weight, which is about 400 mg per day (or about 16 ounces of coffee) for a 150-pound woman.

Incorporate it in healthy ways. Doctor up coffee with almond milk and cinnamon instead of cream and sugar, or whip coffee or tea into a fruit smoothie, along with other nutrient-rich ingredients like almond butter and oats or quinoa.

Be consistent with your intake. Research shows that when your caffeine intake is steady, your body adjusts, which counters dehydration, even though caffeine is a natural diuretic. In other words, don't reach for two cups one day and four the next.

Keep drinking good old H2O, your main beverage of choice.

Nix caffeine at least six hours before bed to prevent sleep interference, and listen to your body. If you're relying on caffeine as an energy booster because you're tired, get to the root of what's causing fatigue. Perhaps it's too little sleep, overexercising, or an inadequate diet. If something's off kilter, you won't see progress, and you'll likely get weaker rather than stronger. Striving for balance is always key!

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THE FAULT IN OUR STARS--AND US (part 4)

A couple more things:

1] Later in the novel, Hazel and Augustus are getting on a plane, to take a trip to Europe.  But they get to go on the plane first, ahead of most others.  And of course, as they go through the gate, everyone stares at them.  Their cancer, Hazel noted, "separates us from other people.  We were irreconcilably other..."

People see you always as "different."  As not "normal."  Some of us with Moebius know that feeling.

2] So often during the book--when their suffering from cancer is really acute; when peoples' actions towards them are the most annoying; when life seems to be at its most unfair--both Hazel and Augustus will say this:

"The world is not a wish-granting factory."

And...well.  No, it's not.  It's really not that for anybody.  I don't know how much comfort that is.  Maybe it's rather cold comfort.  But it does help keep things in perspective.

3] But remember this too--THE FAULT IN OUR STARS is partly a love story.  It's about people, their lives, their loves, their dreams, and sometimes their heartbreaks.  As Hazel's mother says to her--"you deserve to have a life."  And she does.

And so do we with Moebius Syndrome.  We all have lives too.  We accomplish a lot of things.  For those of you Moebius moms and dads who worry about your child with Moebius--what kind of life will he or she have?  Will she really have a life?  I say, don't worry.  Your child will surprise and amaze you every day.  I've seen it over and over again.

Because those with Moebius Syndrome are pretty amazing...

AWARENESS UPDATE

Good for both the people who called attention to this, and to the company who made the change:

A major health insurer has agreed to stop using the term “mental retardation” after a family complained when the phrase was used to describe their daughter’s condition.
Kraig and Jennipher Beahn were stunned when they received a letter from Cigna a few weeks back that included a reference to “mental retardation.” The correspondence was related to their 10-month-old daughter, Kennedi, who has Down syndrome.
“We had never heard the ‘r’ word spoken from any of our friends, acquaintances or medical professionals,” Kraig Beahn told WCTV.
The Tallahassee, Fla. parents sprung into action, writing and emailing the insurance provider to ask that the company use “intellectual disability” instead.
“When we initially received Cigna’s letter with such language, oriented towards our child … our hearts simply stopped beating,” the couple wrote.
Within days, Cigna not only apologized to the family, but committed to modify the terminology it uses companywide.
“We’re doing this because it’s the right thing to do,” Cigna spokesman Mark Slitt said in an email to Disability Scoop. “The term ‘mental retardation’ is outdated and it’s also hurtful.”
Slitt said Cigna has already begun the process of revising its health plan documentation but indicated that the company will need to take some legal and regulatory steps in order to use the updated documents.
“This will take some time, but we’re committed to making the changes,” Slitt said.

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THE FAULT IN OUR STARS--AND US (part 3)

I hope you all had a great 4th of July.  Now that the holiday is over, we can pick up where we left off.  What else can we find in this book?

1] At one point Hazel is having a bad day.  She calls her boyfriend Augustus and one of the things she says is this--that she's having a bad day partly because "...I don't want this particular life..."

In other words, she doesn't want to have cancer; she doesn't want to have to suffer the physical pain of that; she doesn't want to be the Cancer Kid; and so forth.

Do you ever feel that way?  Do you ever wish that you did not have Moebius Syndrome; that you don't want to have that "particular life"; that you don't want to have to deal with the problems and difficulties it brings?

I think many of us deal with Moebius very well, with a lot of courage and toughness; and because of that we don't dwell on topics like this very much.  This is in fact our life and so we have to deal with it, and we do.  However, I think that, if sometimes you do feel the way Hazel expressed her feeling above--it's okay.

2] Later: Isaac, Hazel and Augustus' friend, who also has cancer, had to have surgery to remove his last good eye.  It was the only way to stop his cancer from spreading.  So now he is blind.  Hazel decides to go visit him.  And in doing so, she thinks this:  "I felt bad for him.  Even though I hated the sympathy people felt toward me, I couldn't help but feel it toward him."

Have you ever felt that way?  I think I have.  Life is full of strange, contradictory feelings...

THE FAULT IN OUR STARS--AND US (part 3)

What else can we learn from John Green's remarkable book?  What else might connect with us?  Here are two more examples:

1] At one point in the book, Hazel--again, the book's main character and narrator, a teenager who has cancer--sees a saying; an "Encouragement"; framed on a wall.  It said:  "Without pain, how could we know joy?"  But Hazel is not so sure it is true.  She thinks:  "This is an old argument in the field of Thinking About Suffering, and its stupidity and lack of sophistication could be plumbed for centuries, but suffice it to say that the existence of broccoli does not in any way affect the taste of chocolate."

When it comes to Moebius Syndrome, that passage connects with us in my view this way:  some would say then that, well, in some ways having Moebius Syndrome can be a benefit.  We come to understand that looks aren't everything.  That beauty truly is not skin-deep.  The friends we have are real friends who we know don't simply like us for surface things.   And so forth.

On the other hand, some with Moebius might say:  yeah, but the difficulties and the pain Moebius Syndrome causes simply aren't worth that.  That is something each of us must decide for him or herself.

2] There's another character in the book--Isaac.  He's another teen who has cancer.  In the story, he has a girlfriend named Mona.  They'd been a couple for a long time.  She apparently had never suggested that his cancer bothered her.  They'd pledged to love each other always.

But just as he was about to have important, major surgery--surgery that would leave him blind--Mona broke up with Isaac.  She told him that, regarding his surgery, his condition, his blindness, she "couldn't handle it."

Hazel:  "I was thinking about the word 'handle', and all the unholdable things that get handled."

Right on.  We of course don't know the answer to this question; but for those of us with Moebius Syndrome--how often do you think it happens that other, "normal" people don't want to be around us, don't want to have relationships with us, and they justify it to themselves by thinking--"I can't handle that"???

Maybe more often than we know.  And yet--how do you handle dying of cancer?  How do you handle having a child who is dying of cancer?  More often than we think, saying you "can't handle it" is kind of a flimsy excuse, isn't it?

"The Fault In Our Stars" sure makes you think.

THE FAULT IN OUR STARS--AND US (part two)

So let's pick up where we left off yesterday.  What can the book "The Fault in our Stars", by John Green, teach us?  Or, another way to look at it is--what can it teach us?  Let me just focus on a few quotes:

1] Hazel, the main character of the book and its narrator, who is 15 and has cancer, reports that at her support group, most talk about "fighting" their cancer, in one way or another.  At times she gets tired of this.  But at other times she admits--that is some of way those with cancer do.

And sometimes that is what we with Moebius have to do.  No, it is not exactly the same.  Most of us are not fighting for our lives against a dangerous, metastasizing disease.

But still, we fight.  It can be hard when your eyes don't work just like most others' do.  It can be hard when your speech is different.  It can be difficult when other people maybe are slow to accept you.  But we do the best we can--to make ourselves understood, to be successful, to make lives for ourselves, despite the obstacles we face.

2] At one point, Hazel doesn't really want to go to her support group.  But her mom convinces her to do so; and when she drops Hazel off, her mother calls out the window "Make friends!"

Two things struck me about this.  First--this is really relevant to many of us in the Moebius community. Isn't it?  How many of you Moebius moms and dads, who have kids with Moebius who are 8 years old, or 10, or 12, or are teenagers--how many of you want to, every day, urge your kids to make friends?  Probably many of you do.  Being shy is one of the hardest things Moebius children have to deal with.  Making friends can be hard.

Okay but, now...second thing:  Moebius moms and dads--DON'T SAY THIS.  Or anything like it.  Don't tell your kids this!  Yes, I mean, of course--you want your kids to have friends.  And yes, of course, you want to do what you can to encourage them to do so.  But just telling them--"make friends!"--as if there's nothing to it, as if it's easy, as if all one needs is to be reminded to make friends, and then it will happen--just isn't helpful.  Many of us with Moebius know we need to make friends.  We know we need to get out there, and not be hermits.  But it isn't easy.  Don't suggest anything else.

3] Later:  Hazel is frustrated about something, and so she lists several things that bother her.  And one of the things she says is that she wished she did not have "lungs that suck at being lungs."  (Her cancer was mainly in her lungs and affected them.)

In other words, she's kind of saying--ugh, she wished she didn't have cancer.  Now this doesn't fit in with the image that we sometimes want to create of those who are suffering.  We imagine them as people who are strong, courageous, who never complain and deal with everything perfectly.  But of course, that's not true.  People with cancer get frustrated, tired, angry, fearful, etc.  And that is perfectly okay.

And you know what?  It's perfectly okay for those with Moebius to let out their frustrations sometimes, too.  It can be hard to have Moebius.  At times it's no fun.  And we all know why that is.  There's nothing wrong with acknowledging that.  With letting it out sometimes.  As long as you don't allow it to keep you from having a life.

John Green wrote a great book.  More lessons to come!

"THE FAULT IN OUR STARS"...AND US

Today I want to write my own musings about something--and that is the book "The Fault in Our Stars", by John Green.  It's a powerful book.  I've read it twice now.  It has a lot to say, to all of us.  It is very profound.  And it's a book that has something to say to those of us in the Moebius Syndrome community.

Now, of course, this is not a book about Moebius Syndrome.  Instead it's primarily a book about two young people with cancer.   So I of course do not mean to say at all, in drawing connections here, that Moebius is exactly akin to cancer.  Cancer can be directly, and far too quickly, life-threatening.  Moebius need not be; many of us with it live very long lives.

But still, one thing John Green's book does is make a point:  that people with cancer often are seen as "diferent."  They're the other.  They're stared at.  They are (sometimes unintentionally) ostracized.  People don't want to be around them.  After all, it's no fun to be around people who are sick, who may die (and soon).  In other words, if you have cancer, you have a difference.  And often it is a physical one, very easily seen.

People with Moebius Syndrome can easily relate.  We too are seen as "different."  We too often have physical differences, easily seen--our eyes might not be straight; we might have club feet; our speech is affected; and of course we often cannot show facial expression.

And thus, like people with cancer, we make some uncomfortable.  Some people don't want to be around people who look different (maybe it reminds those who are seen, by society, as "good-looking" that such was not and is not guaranteed).  They don't want to be around people who are not seen as "normal."  We too then get stared at.  We get put down.  It's assumed there are a lot of things we can't do.  In "The Fault In Our Stars", Hazel and Gus don't want to be seen merely as "Cancer Kids."  Nor do most of us want to be seen only as The Person Who Has Moebius, or The Person Who is Weird/Different/Fill-in-the-blank.

But just as John Green's book shows us that persons with cancer are not simply persons with cancer--they can and do have lives and loves way beyond that--the same is true for us with Moebius.  Hazel's mother at one point in the book tells her that "you deserve a life"--one not spent simply at home, waiting to die.  And the same is true for us.

In the days to come, we'll explore this book and what it means for us further.  In the meantime--if you haven't read the book yet, do so!  You'll be glad you did.