SOME MORE RANDOM ITEMS
But important ones, nonetheless...
First, what happens to the health of volunteers when they are told to cut back on exercise? It's not good:
"But that estimable condition changed during the second portion of the experiment, when the volunteers were told to cut back on activity so that their step counts would fall below 5,000 a day for the next three days. Achieving such indolence was easy enough. The volunteers stopped exercising and, at every opportunity, took the elevator, not the stairs, or had lunch delivered, instead of strolling to a cafe. They became, essentially, typical American adults.
Their average step counts fell to barely 4,300 during the three days, and the volunteers reported that they now “exercised,” on average, about three minutes a day.
Meanwhile, they ate exactly the same meals and snacks as they had in the preceding three days, so that any changes in blood sugar levels would not be a result of eating fattier or sweeter meals than before.
And there were changes. During the three days of inactivity, volunteers’ blood sugar levels spiked significantly after meals, with the peaks increasing by about 26 percent compared with when the volunteers were exercising and moving more. What’s more, the peaks grew slightly with each successive day.
This change in blood sugar control after meals “occurred well before we could see any changes in fitness or adiposity,” or fat buildup, due to the reduced activity, Dr. Thyfault says. So the blood sugar swings would seem to be a result, directly, of the volunteers not moving much.
Which is both distressing and encouraging news. “People immediately think, ‘So what happens if I get hurt or really busy, or for some other reason just can’t work out for awhile?’” Dr. Thyfault says. “The answer seems to be that it shouldn’t be a big problem.” Studies in both humans and animals have found that blood sugar regulation quickly returns to normal once activity resumes.
The spikes during inactivity are natural, after all, even inevitable, given that unused muscles need less fuel and so draw less sugar from the blood.
The condition becomes a serious concern, Dr. Thyfault says, only when inactivity is lingering, when it becomes the body’s default condition. “We hypothesize that, over time, inactivity creates the physiological conditions that produce chronic disease,” like Type 2 diabetes and heart disease, regardless of a person’s weight or diet."
So keep exercising!
And keep getting yourself some fish oil, if you don't already--it prevents brain aging:
"People with diets short on omega-3 fatty acids – the kind found in fish oil – were more likely to experience accelerated brain aging, a new study found.
“People with lower levels of omega-3 fatty acids had lower brain volumes that were equivalent to about two years of brain aging,” said Dr. Zaldy S. Tan, a member of the UCLA Easton Center for Alzheimer’s Disease Research in the Department of Neurology.
The study was published Tuesday in the print edition of the journal Neurology.
Tan and his colleagues compared blood levels of two nutrients in omega-3 fatty acids with MRI brain scans and cognitive tests. They found people in the bottom 25% scored lower on such mental tests as problem solving, multi-tasking and abstract thinking.
Tan said the MRI images showed those with lower levels of omega-3 fatty acids were also more likely to have minute but significant structural changes in the brain. The MRIs showed higher white matter hyperintensity volume, tiny lesions in the brain, raising the risk for death, stroke and dementia for the low omega-3 fatty acids group.
Tan said the results were consistent with signs of damage to the intricate network of blood vessels in the brain. A third of the brain by volume is composed of blood vessels."
And did you know that today is Rare Disease Day?
Go here and see all that's going on today in celebration of it!
And once again, Moebius Syndrome is in the news--check out our latest young Moebius hero, Miss Mia Blackwell; and see especially what her doctor said:
"Dr Toni Wolff, a paediatrician at Nottingham City Hospital, helped diagnose Mia and said research was desperately needed.
"I had not seen [the condition] before and we were excited to meet Mia," she said.
"Because [Moebius Syndrome] is quite rare it hasn't been prioritised."
Dr Wolff said new genetics techniques might be able to help if a group of children with the condition could be brought together."
Amen. Let's keep working on that.
“Never forget that you are one of a kind. Never forget that if there weren't any need for you in all your uniqueness to be on this earth, you wouldn't be here in the first place. And never forget, no matter how overwhelming life's challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person. ”--R. Buckminster Fuller (1895-1983);
Wednesday, February 29, 2012
Tuesday, February 28, 2012
Today, let's throw out some random, but useful, items...
On being able to turn a negative into a positive:
"There's no question that losing your job can be a jolting experience, as anyone who has had the misfortune of being laid off in recent years can attest. But what if that jolt could be a positive experience?
That's the suggestion to come out of recent research which looked into the experiences of laid-off mid-to senior-level managers in the United States and Australia.
The participants' overwhelming response was that the experience of losing their jobs in the previous 12 months had given them a renewed interest in living according to their values. The "crisis" of redundancy was in fact an opportunity to get to better know themselves, and reassess their priorities to lead more fulfilled, happier lives.
"All of the respondents, which surprised us, talked about the positives associated with this jolt of job loss," said study co-author Amy Kenworthy, a professor of management at Australia's Bond University.
"These people took that jolt and focused on the positives of it to recalibrate themselves in terms of 'Who am I and what do I want from life?' It was counter-intuitive with what we thought was going to take place."
Nearly every day, I would bet you that someone with Moebius Syndrome does that very thing. Keep up the good work!
Then there's how to be a good risk-taker:
"Before any kind of endeavor, whether it's a new job or a financial investment, come up with some golden rules. Tell yourself what you are unwilling to tolerate or what will cause you to stop the activity. Adhering to strict safety standards has kept me alive in some very dangerous situations.
Whatever the issue -- maybe I've gotten an iffy feeling or just felt that a member of the crew was rubbing me the wrong way -- I don't hesitate to stop. Knowing that I can back out is what gets me in the water in the first place.
Only an expert risk taker can swim toward a particular goal and arrive within a hairsbreadth of the treasure, then turn around and go home.
Jill Heinerth is a cave diver and an underwater photographer and filmmaker. She is the author of "The Essentials of Cave Diving" ($50, amazon.com) and co-wrote, produced, and appeared in the PBS documentary series "Water's Journey." She lives in High Springs, Florida."
And--hat tip here to FB friend Sandy Goodwick for finding this--for all you Moebius moms and dads out there with a child with special needs, here are some ways to help your child deal with bullying:
The more a peer group knows and understands a classmate, the more likely there will be someone who will stand up for her. Look for activities where she can be a successful member of the group. Music or art classes can provide new avenues for self-expression and can help other children be more comfortable around a child with a difference. A kid who can’t be successful on a team can help staff the snack bar at the game. Participation in such activities as Scout troops and church youth groups can be another avenue for integrating your child into the peer group, provided the adult leaders are supportive."
There's a lot more--read the whole thing.
“Giving is a universal opportunity. Regardless of your age, profession, religion, income bracket, and background, you have the capacity to create change.”---Laura Arrillaga-Andreessen -Philanthropist
On being able to turn a negative into a positive:
"There's no question that losing your job can be a jolting experience, as anyone who has had the misfortune of being laid off in recent years can attest. But what if that jolt could be a positive experience?
That's the suggestion to come out of recent research which looked into the experiences of laid-off mid-to senior-level managers in the United States and Australia.
The participants' overwhelming response was that the experience of losing their jobs in the previous 12 months had given them a renewed interest in living according to their values. The "crisis" of redundancy was in fact an opportunity to get to better know themselves, and reassess their priorities to lead more fulfilled, happier lives.
"All of the respondents, which surprised us, talked about the positives associated with this jolt of job loss," said study co-author Amy Kenworthy, a professor of management at Australia's Bond University.
"These people took that jolt and focused on the positives of it to recalibrate themselves in terms of 'Who am I and what do I want from life?' It was counter-intuitive with what we thought was going to take place."
Nearly every day, I would bet you that someone with Moebius Syndrome does that very thing. Keep up the good work!
Then there's how to be a good risk-taker:
"Before any kind of endeavor, whether it's a new job or a financial investment, come up with some golden rules. Tell yourself what you are unwilling to tolerate or what will cause you to stop the activity. Adhering to strict safety standards has kept me alive in some very dangerous situations.
Whatever the issue -- maybe I've gotten an iffy feeling or just felt that a member of the crew was rubbing me the wrong way -- I don't hesitate to stop. Knowing that I can back out is what gets me in the water in the first place.
Only an expert risk taker can swim toward a particular goal and arrive within a hairsbreadth of the treasure, then turn around and go home.
Jill Heinerth is a cave diver and an underwater photographer and filmmaker. She is the author of "The Essentials of Cave Diving" ($50, amazon.com) and co-wrote, produced, and appeared in the PBS documentary series "Water's Journey." She lives in High Springs, Florida."
And--hat tip here to FB friend Sandy Goodwick for finding this--for all you Moebius moms and dads out there with a child with special needs, here are some ways to help your child deal with bullying:
"Recognize what is going on. Don’t fool yourself. If your child is different, he is going to be the butt of taunts, jokes, looks and eye-rolls. The rules of the jungle called the playground or the school hallways make them a mark for bullies. Kids are trying to find their spot in the social world. Those who are insecure often figure out that if they can’t be on the top of the heap, they can at least not be the one on the bottom if they make someone else do the job.
Build an adult support system. Make sure other adults in your child’s life aren’t in denial about the challenges your child faces every day. Meet regularly with teachers to talk about how to provide an unobtrusive safety net. Make sure there are at least a couple of adults in school who your child can go to for support. The school nurse, guidance counselor, or vice-principal often fulfills this role. Make sure they have the time to develop a relationship with your child and have the training to listen to a child’s hurts without judgment.The more a peer group knows and understands a classmate, the more likely there will be someone who will stand up for her. Look for activities where she can be a successful member of the group. Music or art classes can provide new avenues for self-expression and can help other children be more comfortable around a child with a difference. A kid who can’t be successful on a team can help staff the snack bar at the game. Participation in such activities as Scout troops and church youth groups can be another avenue for integrating your child into the peer group, provided the adult leaders are supportive."
There's a lot more--read the whole thing.
“Giving is a universal opportunity. Regardless of your age, profession, religion, income bracket, and background, you have the capacity to create change.”---Laura Arrillaga-Andreessen -Philanthropist
Monday, February 27, 2012
SPIRITUAL SOLUTIONS TO LIFE'S TOUGHEST CRISES
This is an interesting piece from Oprah.com's Deepak Choprah, who suggests that when you are going through rough times, one part of the solution perhaps is to do some hard thinking and self-analysis, to look for a path to the solution in tthe "inner" you, as well as from those near you who have gone through similar problems. Check it out:
"Challenges are part of everyone's life, but there are dark moments when a challenge turns into a crisis. The outcome of our lives depends on the choices we make at those moments.
Will they be breakthroughs or setbacks? What we call wisdom is a crucial tool here. Without it, people usually make their most important decisions based on impulse or its opposite, habit.
It might seem impossible that any three questions can -- and should -- be asked anytime things go wrong, but the sad truth is that millions of us dwell on the three questions we shouldn't ask, questions such as: (1) What's wrong with me? (2) Whom can I blame? (3) What's the worst-case scenario?
We all feel the urge to condemn ourselves out of guilt, to blame others for our misfortunes and to fantasize about total disaster. But these three questions will haunt you and do untold harm unless you consciously stop them, push them aside and replace them with the right questions, leading to the right actions.
Here are three positive, self-affirming ways to approach your next tough situation:
1. Is this a problem I should fix, put up with or walk away from?
Unless you can answer this question clearly and rationally, your vision will be clouded. Without knowing it, you will be acting under the influence of negative emotions such as fear. You will give in to impulsiveness or fall back on old habits.
You must clarify your inner confusion. You must get your bearings in a reasonable way. The first step is to consider -- in consultation with those you trust -- a course of action that begins with finding a fix.
If the fix isn't there, ask why. Perhaps someone is blocking you or you lack the resources of money and time. Yet it is always worthwhile to search for a fix and commit yourself to finding one.
Only when you feel satisfied that you've exhausted your realistic options should you begin to decide between putting up with the situation (using patience, not passivity) and walking away.
The three alternatives are easier than they sound, because most people vacillate when things go bad. One day they wishfully hope for a fix and maybe take a few steps toward it.
The next day they feel passive and victimized, so they put up with things as they are. The third day they are sick and tired of suffering and simply want to escape.
The overall result is self-defeat. No solution can ever be found by running in three different directions. So clarify your situation and act on what you clearly see.
2. Who can I consult who has solved the same problem successfully?
Bad things aren't solved in isolation, yet there is no doubt that our reactions isolate us. We become afraid and depressed. We draw into ourselves. Around the edges we entertain shame and guilt, and once these appear, there is even more reason to shut down.
Finding someone who has gone through the same crisis that you are facing accomplishes several things at once. It gives you an example to follow, a confidant who understands your plight and an alternative to withdrawing into isolation.
Victims always feel alone and helpless. So reach out to someone who has proven, through their own lives, that they were not victimized by the bad thing you are facing now.
We aren't talking about hand-holding, shared misery or even therapy. All those activities can be beneficial (or not), but there's no substitute for talking to a person who has entered a dark place and come out successfully.
Where do you find such a person? Ask around, tell your story, seek support groups, go online to find blogs and forums -- the possibilities are much greater than ever before.
And don't stop until you find not just good advice but real empathy from someone you trust.
3. How can I reach deeper into myself for solutions?
There is just no getting around that turning bad things into good things is up to you. No one can be there all the time, and like it or not, crises are all-consuming.
You find yourself facing an inner world that is suddenly full of threats, fears, illusions, wishful thinking, denial, distractions and conflict. The world "out there" won't change until the world "in here" does.
There is a simple spiritual truth that I believe in deeply: The level of the solution is never found at the level of the problem. Knowing this, you can escape many traps that people fall into.
What exists at the level of the problem? Repetitive thinking that gets nowhere. Old conditioning that keeps applying yesterday's outworn choices. Lots of obsessive thinking and stalled action.
I could go on. But the relevant insight is that you have more than one level of awareness, and at a deeper level there is untapped creativity and insight.
Your higher self contains the potential for new solutions, but you must find it. Instead of "higher self," you can substitute any term that applies -- soul, Atman, Holy Spirit, muse, inspiration -- because linguistics are not nearly as important as the experience itself.
You must experience the place inside where the light dawns and brings hope, where peace is possible and there is certainty about finding a viable path forward.
It's not a mystery that such a place can be reached, because even in the worst crisis we experience flashes of it. The trick is to be able to inhabit the level of awareness that brings solutions.
First, know that this level exists. Second, make a plan to get there, through all the techniques open to everyone: meditation, reflection, contemplation, prayer.
Reduce your stress by every means you can find. Seek others who understand consciousness. Read books that inspire you but also books that realistically describe what it means to go on the inward journey.
I've given an abbreviated plan of action, but the important thing is that you take the first steps inside.
Of course, I can't know what bad things are happening to you specifically. I just urge you to quit the majority who live in confusion and conflict.
Join the minority who see a clear path out of present darkness, who never submit to fear and despair and who in truth lead the world into a future full of light."
“Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you. ”--Carl Sandburg (1878-1967);
This is an interesting piece from Oprah.com's Deepak Choprah, who suggests that when you are going through rough times, one part of the solution perhaps is to do some hard thinking and self-analysis, to look for a path to the solution in tthe "inner" you, as well as from those near you who have gone through similar problems. Check it out:
"Challenges are part of everyone's life, but there are dark moments when a challenge turns into a crisis. The outcome of our lives depends on the choices we make at those moments.
Will they be breakthroughs or setbacks? What we call wisdom is a crucial tool here. Without it, people usually make their most important decisions based on impulse or its opposite, habit.
It might seem impossible that any three questions can -- and should -- be asked anytime things go wrong, but the sad truth is that millions of us dwell on the three questions we shouldn't ask, questions such as: (1) What's wrong with me? (2) Whom can I blame? (3) What's the worst-case scenario?
We all feel the urge to condemn ourselves out of guilt, to blame others for our misfortunes and to fantasize about total disaster. But these three questions will haunt you and do untold harm unless you consciously stop them, push them aside and replace them with the right questions, leading to the right actions.
Here are three positive, self-affirming ways to approach your next tough situation:
1. Is this a problem I should fix, put up with or walk away from?
Unless you can answer this question clearly and rationally, your vision will be clouded. Without knowing it, you will be acting under the influence of negative emotions such as fear. You will give in to impulsiveness or fall back on old habits.
You must clarify your inner confusion. You must get your bearings in a reasonable way. The first step is to consider -- in consultation with those you trust -- a course of action that begins with finding a fix.
If the fix isn't there, ask why. Perhaps someone is blocking you or you lack the resources of money and time. Yet it is always worthwhile to search for a fix and commit yourself to finding one.
Only when you feel satisfied that you've exhausted your realistic options should you begin to decide between putting up with the situation (using patience, not passivity) and walking away.
The three alternatives are easier than they sound, because most people vacillate when things go bad. One day they wishfully hope for a fix and maybe take a few steps toward it.
The next day they feel passive and victimized, so they put up with things as they are. The third day they are sick and tired of suffering and simply want to escape.
The overall result is self-defeat. No solution can ever be found by running in three different directions. So clarify your situation and act on what you clearly see.
2. Who can I consult who has solved the same problem successfully?
Bad things aren't solved in isolation, yet there is no doubt that our reactions isolate us. We become afraid and depressed. We draw into ourselves. Around the edges we entertain shame and guilt, and once these appear, there is even more reason to shut down.
Finding someone who has gone through the same crisis that you are facing accomplishes several things at once. It gives you an example to follow, a confidant who understands your plight and an alternative to withdrawing into isolation.
Victims always feel alone and helpless. So reach out to someone who has proven, through their own lives, that they were not victimized by the bad thing you are facing now.
We aren't talking about hand-holding, shared misery or even therapy. All those activities can be beneficial (or not), but there's no substitute for talking to a person who has entered a dark place and come out successfully.
Where do you find such a person? Ask around, tell your story, seek support groups, go online to find blogs and forums -- the possibilities are much greater than ever before.
And don't stop until you find not just good advice but real empathy from someone you trust.
3. How can I reach deeper into myself for solutions?
There is just no getting around that turning bad things into good things is up to you. No one can be there all the time, and like it or not, crises are all-consuming.
You find yourself facing an inner world that is suddenly full of threats, fears, illusions, wishful thinking, denial, distractions and conflict. The world "out there" won't change until the world "in here" does.
There is a simple spiritual truth that I believe in deeply: The level of the solution is never found at the level of the problem. Knowing this, you can escape many traps that people fall into.
What exists at the level of the problem? Repetitive thinking that gets nowhere. Old conditioning that keeps applying yesterday's outworn choices. Lots of obsessive thinking and stalled action.
I could go on. But the relevant insight is that you have more than one level of awareness, and at a deeper level there is untapped creativity and insight.
Your higher self contains the potential for new solutions, but you must find it. Instead of "higher self," you can substitute any term that applies -- soul, Atman, Holy Spirit, muse, inspiration -- because linguistics are not nearly as important as the experience itself.
You must experience the place inside where the light dawns and brings hope, where peace is possible and there is certainty about finding a viable path forward.
It's not a mystery that such a place can be reached, because even in the worst crisis we experience flashes of it. The trick is to be able to inhabit the level of awareness that brings solutions.
First, know that this level exists. Second, make a plan to get there, through all the techniques open to everyone: meditation, reflection, contemplation, prayer.
Reduce your stress by every means you can find. Seek others who understand consciousness. Read books that inspire you but also books that realistically describe what it means to go on the inward journey.
I've given an abbreviated plan of action, but the important thing is that you take the first steps inside.
Of course, I can't know what bad things are happening to you specifically. I just urge you to quit the majority who live in confusion and conflict.
Join the minority who see a clear path out of present darkness, who never submit to fear and despair and who in truth lead the world into a future full of light."
“Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you. ”--Carl Sandburg (1878-1967);
Friday, February 24, 2012
A COURAGEOUS YOUNG LADY
As I often say on this blog, persons with Moebius Syndrome have, it could be said, a "physical difference." But we're not alone. There are more persons than we think out there who have physical differences themselves. Take for example this young lady, for whom some have, rather uncharitably, given her the nickname "werewolf girl." Yet look at how she views life--with courage and a great attitude:
"Supatra Sasuphan says she doesn’t spend time thinking about the rare condition she has that leaves her with thick hair on her face and body, a determination to live a normal life that makes her an inspiration to all who know her.
Supatra, an 11-year-old Thai girl who’s known as Nat, suffers from hypertrichosis, or Ambras syndrome, a genetic condition marked by excess hair on the face and body. It’s so unusual that there have been only 50 documented cases since the Middle Ages, when sufferers were feared as werewolves.
With thick hair covering most of her face, Nat hopes to be cured one day, but for now, she’s determined not to let her hirsuteness hold her back.
“It’s the way I am,” Nat said in an interview with TODAY. “I don’t even think about it.”
At first, she was teased at school, with other kids scared to look at her.
“She did have a hard time at the beginning,” says her teacher, Kuljira Posaeng. “But as time passed she proved that she was just like anybody else.”
Those who know Nat describe her as a hard-working student who gets good grades and has won over her classmates to become one of the most popular kids at school. And she’s no shrinking violet: She likes to sing, dance and act, and her teachers describe her as “very lively.”
Her hair has always grown back after doctors tried to remove it with laser treatments, and it’s come in thicker with each passing year.
Last year, Guinness World Records named her the world’s hairiest teenager, an award that makes her feel proud.
“Being hairy makes me special,” she told Guinness. “This the happiest day of my life!”
It’s Nat’s quest to be a regular kid that makes those around her feel proud.
“She’s self-confident,” Sammrueng, her father, told TODAY. “She works and plays hard. We want people to understand she’s a normal little girl.”
Nat was busy preparing for exams during TODAY’s visit and her studies paid off with high marks all around and an A in her favorite subject, math.
“She always gets such good results,” said Nat’s mother, Somphon. “I’m proud of her.”
Even in a world where people can be cruel to those who look different, Nat has big plans to help others by becoming a doctor.
“So I can help sick and injured people,” she told TODAY, “and treat my mum and dad and relatives."
"One man has enthusiasm for 30 minutes, another for 30 days,
but it is the man who has it for 30 years who makes a
success of his life." -Edward Butler
As I often say on this blog, persons with Moebius Syndrome have, it could be said, a "physical difference." But we're not alone. There are more persons than we think out there who have physical differences themselves. Take for example this young lady, for whom some have, rather uncharitably, given her the nickname "werewolf girl." Yet look at how she views life--with courage and a great attitude:
"Supatra Sasuphan says she doesn’t spend time thinking about the rare condition she has that leaves her with thick hair on her face and body, a determination to live a normal life that makes her an inspiration to all who know her.
Supatra, an 11-year-old Thai girl who’s known as Nat, suffers from hypertrichosis, or Ambras syndrome, a genetic condition marked by excess hair on the face and body. It’s so unusual that there have been only 50 documented cases since the Middle Ages, when sufferers were feared as werewolves.
With thick hair covering most of her face, Nat hopes to be cured one day, but for now, she’s determined not to let her hirsuteness hold her back.
“It’s the way I am,” Nat said in an interview with TODAY. “I don’t even think about it.”
At first, she was teased at school, with other kids scared to look at her.
“She did have a hard time at the beginning,” says her teacher, Kuljira Posaeng. “But as time passed she proved that she was just like anybody else.”
Those who know Nat describe her as a hard-working student who gets good grades and has won over her classmates to become one of the most popular kids at school. And she’s no shrinking violet: She likes to sing, dance and act, and her teachers describe her as “very lively.”
Her hair has always grown back after doctors tried to remove it with laser treatments, and it’s come in thicker with each passing year.
Last year, Guinness World Records named her the world’s hairiest teenager, an award that makes her feel proud.
“Being hairy makes me special,” she told Guinness. “This the happiest day of my life!”
11-year-old Nat is a top student, and hopes to become a octor one day.
“She’s self-confident,” Sammrueng, her father, told TODAY. “She works and plays hard. We want people to understand she’s a normal little girl.”
Nat was busy preparing for exams during TODAY’s visit and her studies paid off with high marks all around and an A in her favorite subject, math.
“She always gets such good results,” said Nat’s mother, Somphon. “I’m proud of her.”
Even in a world where people can be cruel to those who look different, Nat has big plans to help others by becoming a doctor.
“So I can help sick and injured people,” she told TODAY, “and treat my mum and dad and relatives."
"One man has enthusiasm for 30 minutes, another for 30 days,
but it is the man who has it for 30 years who makes a
success of his life." -Edward Butler
Thursday, February 23, 2012
DEALING WITH ADVERSITY
Those of us with Moebius Syndrome and other physical differences do so every day. I think that we can inspire others. But let's also remember that we don't have to do all the inspiring--there are other people who have it tough, too, who face physical challenges and wind up with physical differences that are pretty big challenges in themselves. For example, here is the story of Noreen Faser, who has stage IV metastatic breast cancer, but is doing her best to keep moving:
"For some reason, I often find myself in the craziest of situations, like my life is a Saturday Night Live skit, or I am channeling Lucille Ball.
Those of us with Moebius Syndrome and other physical differences do so every day. I think that we can inspire others. But let's also remember that we don't have to do all the inspiring--there are other people who have it tough, too, who face physical challenges and wind up with physical differences that are pretty big challenges in themselves. For example, here is the story of Noreen Faser, who has stage IV metastatic breast cancer, but is doing her best to keep moving:
"For some reason, I often find myself in the craziest of situations, like my life is a Saturday Night Live skit, or I am channeling Lucille Ball.
Wednesday, February 22, 2012
DEALING WITH THOSE WHO ARE "DIFFERENT"
This is a very interesting piece written by a woman who speaks openly about her confusion of how to deal with her daughter's friend and second cousin, who has various physical differences--but who also learns valuable, inspiring lessons once she deals with it openly and honestly. Hat tip for finding it goes to our Facebook friend Karen Krausmann Ouellette; maybe you've seen this already, but if not, check it out--it's very interesting, and can help those of us with Moebius understand a bit more what those who don't have it are thinking when they meet us. Note: this is not a story about Moebius Syndrome; but the themes in it are relevant to us all:
"I hauled the suitcase to the bedroom upstairs and turned to our guest, our 12-year-old Jenny’s friend and second cousin, Dawnisha, better known as Dolly.
This is a very interesting piece written by a woman who speaks openly about her confusion of how to deal with her daughter's friend and second cousin, who has various physical differences--but who also learns valuable, inspiring lessons once she deals with it openly and honestly. Hat tip for finding it goes to our Facebook friend Karen Krausmann Ouellette; maybe you've seen this already, but if not, check it out--it's very interesting, and can help those of us with Moebius understand a bit more what those who don't have it are thinking when they meet us. Note: this is not a story about Moebius Syndrome; but the themes in it are relevant to us all:
"I hauled the suitcase to the bedroom upstairs and turned to our guest, our 12-year-old Jenny’s friend and second cousin, Dawnisha, better known as Dolly.
“You can choose,” I said. “A mattress on the floor, the hide-a-bed or the top bunk of the loft bed.”
“The top bunk, please,” Dolly said promptly.
I looked at her tiny frame and shortened arms. Oh dear, maybe I shouldn’t have offered.
“Can you climb up there OK?” I asked.
“Oh, yeah,” she scoffed. “As long as I don’t wear my back brace.”
That’s right. She has scoliosis, too.
She began unpacking, scattering pajamas and dress-up clothes in a semi-circle on the floor. Jenny picked up a techy-looking white object about 4 inches long.
“Is this an MP3 player?”
Dolly laughed. “No! That’s my hearing aid case!”
Downstairs, Dolly rummaged through the Tupperware in the corner cupboard. “Auntie Dorcas, do you have a miniscule container on hand? I need it for my vitamins.”
Oh yes. Food allergies. I had forgotten that as well. But — “miniscule?”
I was in for an interesting weekend.
They were born a month apart, these two. First Jenny, robust and red-haired and the youngest of five. Then my husband’s cousin and his wife had Dawnisha, a tiny, fragile firstborn, with only a three-fingered stub at her right shoulder and a somewhat longer arm on the left.
The girls had much in common as they grew older. Well-loved, talkative, creative and a bit precocious, they sang together in a children’s choir and canoed down the creek together and jumped on the trampoline and went to the state fair with Dolly’s family.
But having Dolly pop in and out of the house on summer afternoons was not like having her here for an entire weekend.
She is, I found, a combination of normal and gifted, of whole and handicapped, of stunted growth and oversized imagination.
I confess to never feeling quite sure about how to behave toward unusual others — minorities, disabled folks and so on — convinced that whether I stare or ignore, talk or keep quiet, it’s the wrong response.
A severely shy young friend of mine recently posted on Facebook that he had, that day, overcome his impediment enough to look at someone in a wheelchair and say hi. It seemed to me that the visible disability gave him the courage to briefly overcome his own less-obvious handicap.
A rapid online discussion followed. Some felt it was inappropriate to single out a disabled person as somehow safer. Handicapped people should be treated just like you’d treat anyone else, they said, and to even ask the question, “How should I treat a handicapped person?” was in itself an insult.
I could see their point. As a distinctly Mennonite woman in appearance, I don’t mind curiosity, but I dislike both reverence and mockery.
“Just like anyone else,” works for me, and if the lady beside me at the produce stand casually asks me if and how I cook acorn squash, I feel strangely affirmed as normal.
It wasn’t hard to treat Dolly as I would any 12-year-old guest. I indulged her love for my gluten-free cereal-and-peanut-butter bars and acted sympathetic, while chuckling inside, when she talked about symptoms of teenage hormones, prefaced by a nervous, “Are there any boys around?”
But sometimes there was simply no getting around the differences. A long-limbed, athletic girl like Jenny is different from one whose arms are like radio antennae that forgot to telescope all the way out.
When the zipper stuck on her jacket, Dolly simply didn’t have the leverage to fix it. Nor could she open the container of snack bars by herself.
Fortunately, Dolly herself taught me how she ought to be treated.
When she wanted a drink, I pointed to the right cupboard, then realized the glasses were up too high, so I set a step stool in place for her. I turned to work on something else and soon realized that even the step stool wasn’t high enough when Dolly said, “Is it OK if I kneel on the counter?”
Should I have simply fetched her drink myself, I wondered? Dolly answered my unspoken question, “Auntie Dorcas, just so you know, you don’t have to do things for me, even if it takes me a lot longer than you.”
I was glad to know that.
Children make things less complicated than adults, and I took cues from Jenny as well. On a sunny Saturday afternoon, the two girls crossed the road and played in the deep ditch and among the oak trees on the other side.
Eventually, they decided to dig steps into the dirt to make it easier to go up and down the ditch.
So Dolly stood at the top, her little arms wrapped around a large red shovel, and there she prodded and pushed and tugged in what seemed to me a pitiful, useless effort.
At the bottom, Jenny pushed dirt aside with her hands, oblivious to Dolly’s slow progress. I checked on them once or twice and both seemed delighted with their project, the mud on their knees — and each other.
But I wondered why in the world Jenny didn’t see how Dolly was struggling with that shovel. I swallowed my motherly urges to rush in and direct them, sensing that it was best to take my cues from Jenny.
If the girls were happy, I should probably stay out of it.
They came in a long time later, glowing and muddy, totally satisfied with their afternoon’s work. I was the only one who had stressed about their arrangement; that was obvious.
“What’s the hardest thing to do?” I asked Dolly that evening, meaning: What normal task did she find most difficult?
She misunderstood. “When I see other kids playing sports.”
I considered saying, “Well, I can relate to that.”
But I knew that, in reality, I couldn’t. Not at all.
So young, so many losses, I thought.
And yet, in other ways, she had so much. She told me how it works with men like her dad and my husband.
“It’s like, with Smucker men, if you keep asking, they dig in their heels. You ask one time and then it’s quiet, and then after a while you say, ‘Uh, did you hear me?’ and they’re like, ‘I’m thinking.’ ”
So young, so wise, so hilariously observant, I thought.
She changed into pajama bottoms and a tank top for the night. I asked which joints of hers correlated with my wrists and elbows. She demonstrated, from shoulders to fingers, showing me which bones were missing, which joints moved and which didn’t.
“And this here is like an elbow, except it’s fused,” she said, pointing to her left arm. “I’m so glad it’s fused in a bend. If it were fused straight, I couldn’t comb my hair, or eat! Thank God he made me this way!”
And then, just like Jenny or any normal 12-year-old girl, that thought triggered another and she rattled down another track.
“Do you think that’s taking the Lord’s name in vain to just say, ‘Thank God?’ I mean, it’s not like I’m kneeling down and praying and, ‘Oh thank you dear God.’ It’s like, an expression, you know? ‘Thank God this and this!’ ”
I told her I’m sure it’s all about how you mean it in your heart.
Then she and Jenny galloped on in seemingly endless chatter about pajamas and dreams and library books and cats and cute clothes and brothers and making stuff. She really is just like any other girl, I thought. Except when she’s a lot more so.
Or, as Dolly herself put it, with a delighted grin, “Capable but humble, that’s me!”
"You can't let one bad moment spoil a bunch of good ones."
-Dale Earnhardt
-Dale Earnhardt
Tuesday, February 21, 2012
GOT PAIN? DEPT
Many persons with Moebius Syndrome live every day with chronic pain. But always remember: you're not alone. Many famous people live with pain, too:
"Chronic pain can be debilitating and frustrating—but these celebrities show that it can also be inspiring. Here we show how these seven stars make choices every day to live fully, balancing treatments and pain management while inspiring the rest of us to live our best lives.
Many persons with Moebius Syndrome live every day with chronic pain. But always remember: you're not alone. Many famous people live with pain, too:
"Chronic pain can be debilitating and frustrating—but these celebrities show that it can also be inspiring. Here we show how these seven stars make choices every day to live fully, balancing treatments and pain management while inspiring the rest of us to live our best lives.
Monday, February 20, 2012
BEING ASSERTIVE...AND FEELING GOOD ABOUT IT
Let's face it--one of the problems with having Moebius Syndrome is that looking different, as we do, and dealing with the world's reaction to it, can make us shy. We're not as assertive as we could be, or as we sometimes need to be--with family, at work, with friends. But it's something many of us need to work on, as not only can help us be more successful in the world, but it can also help us feel better, as this excerpt from a story online today lays out:
"Do any of these scenarios sound familiar?
-Somebody cuts in front of you in the grocery store line. You're irritated but don't say anything.
-Your friend asks you to pick her up at the airport. Again. You say yes even though you have no time.
-You disagree with your boss, but say nothing.
Are you nodding yes? We've all had moments when we think to ourselves, I'm confident, I'm smart, and I know what I want. Why can't I just say it?
Being assertive -- standing up for yourself and speaking your mind in a clear yet respectful way -- can be remarkably hard on a good day. We worry if we ask for what we need, we'll put someone out. Or that we'll come across as a you-know-what. So we just let what we want go unsaid.
In your defense, it is more of a challenge to state your needs these days. The still-shaky economy may make you hesitant to ask for that raise at work (or disagree with your boss). You may feel worse turning down requests from family, knowing they're stressed.
And it's not just your imagination that more folks are losing it in public -- witness the woman who sprayed mace at fellow shoppers on Black Friday. A recent survey revealed that 86 percent of Americans have been the victims of rude behavior.
The payoff of having your own back, though, is enormous -- and it's so much more than simply getting your way.
"When you say what you want, you live a happier and more authentic life," says Caroline Adams Miller, author of "Creating Your Best Life."
That's true no matter what the outcome, adds Simon Rego, Psy.D., director of the cognitive behavioral training program at Montefiore Medical Center in New York. Those who speak up do better at work, have more time, and have healthier relationships.
So how do you master this crucial skill? "The three keys," explains Miller, "are knowing what you want, believing you have a right to it, and finding the courage to express it." You are about to become your own best advocate.
Be assertive... with friends and family
Surprisingly, your nearest and dearest can be the toughest to stand up to.
"They're the people we want to please the most," says Miller. "We'd rather be unhappy ourselves than disappoint them."
To complicate matters, we have to fight a lifetime of old (bad) habits -- saying "sure" when we really mean "no way." True, standing your ground can be momentarily uncomfortable, but it's so worth it -- your relationships will be stronger as a result, Miller says. Try these tactics:
Challenge #1: Saying "no!"
Your sister is always asking you to watch her kids; your running buddy keeps dragging you to Spinning class, which you hate.
The solution: There is a trick to getting your way when someone doesn't pick up subtle hints. Take a deep breath so you sound calm -- not at all peeved -- and just say, "No, I'm not able to do that," Rego advises. If she pushes back (which she likely will), repeat, minus a word or two. "No. I'm not able."
This may go on for several rounds. "Each time, you shorten the phrase until you eventually just say no," says Rego. "It's extremely effective because it allows you to convey what you want without getting upset."
Challenge #2: Sticking with your values
You need your folks to respect your decisions about your kids; you want the in-laws to stop breaking the bank on gifts.
The solution: When you're broaching a sensitive topic, it's best to start with the word "I". (This is particularly effective at deflecting arguments over hot button issues.) "'I' statements are expressions of your own needs, which we all are entitled to have," explains Rego. Using "you" statements, on the other hand, can put the other person on the defensive, which will only escalate an argument. Keep it simple and own it ("I feel my kids act crazy when they eat candy, so I don't want them to have any.")
Challenge #3: Breaking a pattern
Maybe your friend always picks the restaurants (and pricey ones), or your man chooses your vacation spots every time.
The solution: This one pops up a lot in close relationships. Here, too, that "I" statement is key. Soften it with at least one thing the other person will be happy to hear ("Our date nights are so fun, but I would love to see a movie this time.")
There's a lot more; you'll want to read the whole thing.
“Those who wish to sing, always find a song.”---
Let's face it--one of the problems with having Moebius Syndrome is that looking different, as we do, and dealing with the world's reaction to it, can make us shy. We're not as assertive as we could be, or as we sometimes need to be--with family, at work, with friends. But it's something many of us need to work on, as not only can help us be more successful in the world, but it can also help us feel better, as this excerpt from a story online today lays out:
"Do any of these scenarios sound familiar?
-Somebody cuts in front of you in the grocery store line. You're irritated but don't say anything.
-Your friend asks you to pick her up at the airport. Again. You say yes even though you have no time.
-You disagree with your boss, but say nothing.
Are you nodding yes? We've all had moments when we think to ourselves, I'm confident, I'm smart, and I know what I want. Why can't I just say it?
Being assertive -- standing up for yourself and speaking your mind in a clear yet respectful way -- can be remarkably hard on a good day. We worry if we ask for what we need, we'll put someone out. Or that we'll come across as a you-know-what. So we just let what we want go unsaid.
In your defense, it is more of a challenge to state your needs these days. The still-shaky economy may make you hesitant to ask for that raise at work (or disagree with your boss). You may feel worse turning down requests from family, knowing they're stressed.
And it's not just your imagination that more folks are losing it in public -- witness the woman who sprayed mace at fellow shoppers on Black Friday. A recent survey revealed that 86 percent of Americans have been the victims of rude behavior.
The payoff of having your own back, though, is enormous -- and it's so much more than simply getting your way.
"When you say what you want, you live a happier and more authentic life," says Caroline Adams Miller, author of "Creating Your Best Life."
That's true no matter what the outcome, adds Simon Rego, Psy.D., director of the cognitive behavioral training program at Montefiore Medical Center in New York. Those who speak up do better at work, have more time, and have healthier relationships.
So how do you master this crucial skill? "The three keys," explains Miller, "are knowing what you want, believing you have a right to it, and finding the courage to express it." You are about to become your own best advocate.
Be assertive... with friends and family
Surprisingly, your nearest and dearest can be the toughest to stand up to.
"They're the people we want to please the most," says Miller. "We'd rather be unhappy ourselves than disappoint them."
To complicate matters, we have to fight a lifetime of old (bad) habits -- saying "sure" when we really mean "no way." True, standing your ground can be momentarily uncomfortable, but it's so worth it -- your relationships will be stronger as a result, Miller says. Try these tactics:
Challenge #1: Saying "no!"
Your sister is always asking you to watch her kids; your running buddy keeps dragging you to Spinning class, which you hate.
The solution: There is a trick to getting your way when someone doesn't pick up subtle hints. Take a deep breath so you sound calm -- not at all peeved -- and just say, "No, I'm not able to do that," Rego advises. If she pushes back (which she likely will), repeat, minus a word or two. "No. I'm not able."
This may go on for several rounds. "Each time, you shorten the phrase until you eventually just say no," says Rego. "It's extremely effective because it allows you to convey what you want without getting upset."
Challenge #2: Sticking with your values
You need your folks to respect your decisions about your kids; you want the in-laws to stop breaking the bank on gifts.
The solution: When you're broaching a sensitive topic, it's best to start with the word "I". (This is particularly effective at deflecting arguments over hot button issues.) "'I' statements are expressions of your own needs, which we all are entitled to have," explains Rego. Using "you" statements, on the other hand, can put the other person on the defensive, which will only escalate an argument. Keep it simple and own it ("I feel my kids act crazy when they eat candy, so I don't want them to have any.")
Challenge #3: Breaking a pattern
Maybe your friend always picks the restaurants (and pricey ones), or your man chooses your vacation spots every time.
The solution: This one pops up a lot in close relationships. Here, too, that "I" statement is key. Soften it with at least one thing the other person will be happy to hear ("Our date nights are so fun, but I would love to see a movie this time.")
There's a lot more; you'll want to read the whole thing.
“Those who wish to sing, always find a song.”---
Friday, February 17, 2012
UNCOMFORTABLE PEOPLE
So today, let's talk about people--people who are uncomfortable. People who are uncomfortable, that is, around you--around you, the individual who has Moebius Syndrome or any other kind of physical difference. Lisa and I were talking about this the other day, about someone whom we know who may just be a little uptight around us.
If you have Moebius or anything similar, you know the type of person we mean. This is the person who you know; who, because of work or where you live or other circumstances, you are around relatively frequently. But this is the individual who, no matter how hard you try to be friendly to him or her and to be sure and speak to her or acknowledge him, he or she just never has too much to say in response, and never looks that--well, comfortable--talking to you.
I've always thought that there were just some people itwho are, well, "like that"; ya know? There are some people who just have a hard time dealing with fwho are different, who look different, who don't fit within the usual, comfortable, well-established "type." They just don't like it. Unfortunately I think those kinds of people are very susceptible, then, to various prejudices.
Of course, then the natural quesrtion comes up: what can someone with Moebius, or any other difference, do about something like this? How do we handle it? Here's what I think: 1] Don't think that you can easily "change" the other person, the one whose uncomfortable around you. Such an attitude gets built up through years of conditioning and various influences. Not much one can do about that. Except this: continue to be yourself; continue to be polite; and maybe over time this other person will come to realize there's nothing so much to be scared of, after all. Maybe. 2] At the same time, remember that others' attitudes don't define you. You are who you are. Others' prejudices don't make you a bad person. Never let another's aloofness ruin your day. It's not worth it. Don't grant it that power.
And 3] Remember how many people there really are out there who will accept you, who won't and don't let your physical differences from them affect how they see you and respond to you. Remember that you do have non-Moebius friends and acquaintances who don't care that you have it; who see you as a person, not as "the other." I can still remember talking once with a co-worker of mine from years ago; I'd never really mentioned Moebius to her, until once I did because I was about to go to a summer Moebius conference, so of course I talked about what that was all about. And I remember she told me that honestly, she'd never thought of me as someone who was different or had a condition; to her I was just Kevin.
And there are plenty of people like that. Even when you encounter one who isn't, remember--it doesn't matter. Their attitudes don't demean you at all.
“Patience - the gift of being able to see past the emotion.--Rodney Williams
So today, let's talk about people--people who are uncomfortable. People who are uncomfortable, that is, around you--around you, the individual who has Moebius Syndrome or any other kind of physical difference. Lisa and I were talking about this the other day, about someone whom we know who may just be a little uptight around us.
If you have Moebius or anything similar, you know the type of person we mean. This is the person who you know; who, because of work or where you live or other circumstances, you are around relatively frequently. But this is the individual who, no matter how hard you try to be friendly to him or her and to be sure and speak to her or acknowledge him, he or she just never has too much to say in response, and never looks that--well, comfortable--talking to you.
I've always thought that there were just some people itwho are, well, "like that"; ya know? There are some people who just have a hard time dealing with fwho are different, who look different, who don't fit within the usual, comfortable, well-established "type." They just don't like it. Unfortunately I think those kinds of people are very susceptible, then, to various prejudices.
Of course, then the natural quesrtion comes up: what can someone with Moebius, or any other difference, do about something like this? How do we handle it? Here's what I think: 1] Don't think that you can easily "change" the other person, the one whose uncomfortable around you. Such an attitude gets built up through years of conditioning and various influences. Not much one can do about that. Except this: continue to be yourself; continue to be polite; and maybe over time this other person will come to realize there's nothing so much to be scared of, after all. Maybe. 2] At the same time, remember that others' attitudes don't define you. You are who you are. Others' prejudices don't make you a bad person. Never let another's aloofness ruin your day. It's not worth it. Don't grant it that power.
And 3] Remember how many people there really are out there who will accept you, who won't and don't let your physical differences from them affect how they see you and respond to you. Remember that you do have non-Moebius friends and acquaintances who don't care that you have it; who see you as a person, not as "the other." I can still remember talking once with a co-worker of mine from years ago; I'd never really mentioned Moebius to her, until once I did because I was about to go to a summer Moebius conference, so of course I talked about what that was all about. And I remember she told me that honestly, she'd never thought of me as someone who was different or had a condition; to her I was just Kevin.
And there are plenty of people like that. Even when you encounter one who isn't, remember--it doesn't matter. Their attitudes don't demean you at all.
“Patience - the gift of being able to see past the emotion.--Rodney Williams
Thursday, February 16, 2012
HEALTH/EXERCISE TIP OF THE DAY
Try some intense exercise---and make it last for a minute, then rest. Then repeat. This piece explains:
"For years, the American Heart Association and other organizations have recommended that people complete 30 minutes or more of continuous, moderate-intensity exercise, such as a brisk walk, five times a week, for overall good health.
But millions of Americans don’t engage in that much moderate exercise, if they complete any at all. Asked why, a majority of respondents, in survey after survey, say, “I don’t have time.”
Intervals, however, require little time. They are, by definition, short. But whether most people can tolerate intervals, and whether, in turn, intervals provide the same health and fitness benefits as longer, more moderate endurance exercise are issues that haven’t been much investigated.
Several years ago, the McMasters scientists did test a punishing workout, known as high-intensity interval training, or HIIT, that involved 30 seconds of all-out effort at 100 percent of a person’s maximum heart rate. After six weeks, these lacerating HIIT sessions produced similar physiological changes in the leg muscles of young men as multiple, hour-long sessions per week of steady cycling, even though the HIIT workouts involved about 90 percent less exercise time.
Recognizing, however, that few of us willingly can or will practice such straining all-out effort, the researchers also developed a gentler but still chronologically abbreviated form of HIIT. This modified routine involved one minute of strenuous effort, at about 90 percent of a person’s maximum heart rate (which most of us can estimate, very roughly, by subtracting our age from 220), followed by one minute of easy recovery. The effort and recovery are repeated 10 times, for a total of 20 minutes.
Despite the small time commitment of this modified HIIT program, after several weeks of practicing it, both the unfit volunteers and the cardiac patients showed significant improvements in their health and fitness.
The results, published in a recent review of HIIT-related research, were especially remarkable in the cardiac patients. They showed “significant improvements” in the functioning of their blood vessels and heart, said Maureen MacDonald, an associate professor of kinesiology at McMaster who is leading the ongoing experiment."
THE CONTINUING NEED FOR AWARENESS DEPT
Starbucks just may have done a man who is missing part of his left arm wrong:
"A California man who was born with half of a left arm filed a complaint against Starbucks because he claims he was “blatantly” discriminated against during an interview at one of the company’s stores, 10News.com reported.
Try some intense exercise---and make it last for a minute, then rest. Then repeat. This piece explains:
"For years, the American Heart Association and other organizations have recommended that people complete 30 minutes or more of continuous, moderate-intensity exercise, such as a brisk walk, five times a week, for overall good health.
But millions of Americans don’t engage in that much moderate exercise, if they complete any at all. Asked why, a majority of respondents, in survey after survey, say, “I don’t have time.”
Intervals, however, require little time. They are, by definition, short. But whether most people can tolerate intervals, and whether, in turn, intervals provide the same health and fitness benefits as longer, more moderate endurance exercise are issues that haven’t been much investigated.
Several years ago, the McMasters scientists did test a punishing workout, known as high-intensity interval training, or HIIT, that involved 30 seconds of all-out effort at 100 percent of a person’s maximum heart rate. After six weeks, these lacerating HIIT sessions produced similar physiological changes in the leg muscles of young men as multiple, hour-long sessions per week of steady cycling, even though the HIIT workouts involved about 90 percent less exercise time.
Recognizing, however, that few of us willingly can or will practice such straining all-out effort, the researchers also developed a gentler but still chronologically abbreviated form of HIIT. This modified routine involved one minute of strenuous effort, at about 90 percent of a person’s maximum heart rate (which most of us can estimate, very roughly, by subtracting our age from 220), followed by one minute of easy recovery. The effort and recovery are repeated 10 times, for a total of 20 minutes.
Despite the small time commitment of this modified HIIT program, after several weeks of practicing it, both the unfit volunteers and the cardiac patients showed significant improvements in their health and fitness.
The results, published in a recent review of HIIT-related research, were especially remarkable in the cardiac patients. They showed “significant improvements” in the functioning of their blood vessels and heart, said Maureen MacDonald, an associate professor of kinesiology at McMaster who is leading the ongoing experiment."
THE CONTINUING NEED FOR AWARENESS DEPT
Starbucks just may have done a man who is missing part of his left arm wrong:
"A California man who was born with half of a left arm filed a complaint against Starbucks because he claims he was “blatantly” discriminated against during an interview at one of the company’s stores, 10News.com reported.
Wednesday, February 15, 2012
INSPIRATIONAL STORY OF THE DAY
A baby has a stroke in utero...it seems all hope is lost...but now that child is 3 years old and making remarkable progress. That's why we parents never give up on our kids:
"A young girl from the U.K. has surprised her doctors by learning to walk and talk after she suffered a stroke in utero, the Daily Mail reported.
Sharon McLaughlin didn’t know her unborn baby had the stroke until after Caitlin was born – and doctors told her the child suffered severe brain damage and would never walk, talk or see.
But now 3-year-old Caitlin is making incredible progress, her parents told the newspaper.
During an emergency cesarean section, McLaughlin was told Caitlin’s heart rate was dropping and the baby needed two blood transfusions. At just 6 hours old, Caitlin suffered several seizures.
“Her seizures were really bad,” McLaughlin told the Daily Mail. “They couldn’t control them at first, and by the time Shaun and I got back to the intensive care unit, they had given her a breathing tube.”
Finally, an MRI revealed the brain damage caused by the stroke. Doctors did not know the reason the stroke occurred, but determined that blood had accumulated in the brain during pregnancy.
“[Dr.] Edwards told us that if an adult had suffered a stroke like that, they would’ve died,” McLaughlin said.
Caitlin was treated with epilepsy drugs and placed on a ventilator. Doctors predicted she would never be able to perform many basic, yet necessary, functions. But Caitlin surprised everyone at 7 months old when she giggled for the first time.
Soon Caitlin started speaking and despite also being born with cerebral palsy, she started pulling herself up on her legs at two and a half years old.
Although she still struggles with her eyesight and suffers from frequent seizures, Caitlin is living just like any other toddler and is making more and more progress each day.
“The doctors call her their miracle baby because they never believed she would do the things she is doing,” McLaughlin said."
MOEBIUS SYNDROME IN THE NEWS
Meanwhile, don't forget folks---the bi-annual Moebius Syndrome Conference comes up this summer in Philadelphia, Pennsylviania. It will run from July 13th through July 15th...but come early, stay late! There's lots to do in Philadelphia. And did you know? Registration for the conference is now open! And you can now register online. More details and online registration can be found here. We can't wait to see you all in Philly.
"Focus more on your desire than on your doubt, and the dream
will take care of itself. You may be surprised at how easily
this happens. Your doubts are not as powerful as your desires,
unless you make them so." -Marcia Wieder
A baby has a stroke in utero...it seems all hope is lost...but now that child is 3 years old and making remarkable progress. That's why we parents never give up on our kids:
"A young girl from the U.K. has surprised her doctors by learning to walk and talk after she suffered a stroke in utero, the Daily Mail reported.
Sharon McLaughlin didn’t know her unborn baby had the stroke until after Caitlin was born – and doctors told her the child suffered severe brain damage and would never walk, talk or see.
But now 3-year-old Caitlin is making incredible progress, her parents told the newspaper.
During an emergency cesarean section, McLaughlin was told Caitlin’s heart rate was dropping and the baby needed two blood transfusions. At just 6 hours old, Caitlin suffered several seizures.
“Her seizures were really bad,” McLaughlin told the Daily Mail. “They couldn’t control them at first, and by the time Shaun and I got back to the intensive care unit, they had given her a breathing tube.”
Finally, an MRI revealed the brain damage caused by the stroke. Doctors did not know the reason the stroke occurred, but determined that blood had accumulated in the brain during pregnancy.
“[Dr.] Edwards told us that if an adult had suffered a stroke like that, they would’ve died,” McLaughlin said.
Caitlin was treated with epilepsy drugs and placed on a ventilator. Doctors predicted she would never be able to perform many basic, yet necessary, functions. But Caitlin surprised everyone at 7 months old when she giggled for the first time.
Soon Caitlin started speaking and despite also being born with cerebral palsy, she started pulling herself up on her legs at two and a half years old.
Although she still struggles with her eyesight and suffers from frequent seizures, Caitlin is living just like any other toddler and is making more and more progress each day.
“The doctors call her their miracle baby because they never believed she would do the things she is doing,” McLaughlin said."
MOEBIUS SYNDROME IN THE NEWS
Meanwhile, don't forget folks---the bi-annual Moebius Syndrome Conference comes up this summer in Philadelphia, Pennsylviania. It will run from July 13th through July 15th...but come early, stay late! There's lots to do in Philadelphia. And did you know? Registration for the conference is now open! And you can now register online. More details and online registration can be found here. We can't wait to see you all in Philly.
"Focus more on your desire than on your doubt, and the dream
will take care of itself. You may be surprised at how easily
this happens. Your doubts are not as powerful as your desires,
unless you make them so." -Marcia Wieder
Tuesday, February 14, 2012
ANOTHER REASON TO LOVE YOUR PETS DEPT
I know many of you out there who have Moebius, or have other physical differences, have pets...and love your pets. And here's another reason to love them:
"Pet owners with chronic diseases appear to have healthier tickers than people living without an animal companion, a new study shows.
Monitoring the hearts of nearly 200 Japanese people, scientists found those who had a pet -- whether furry, scaly or feathery -- had higher heart rate variability than those who didn't.
That means their hearts respond better to the body's changing requirements, such as beating faster during stressful situations. Reduced heart rate variability, on the other hand, has been linked to a higher risk of dying from heart disease.
Erika Friedmann, a professor at the University of Maryland School of Nursing, said the study is a step forward from what is already known about the connection between pet ownership and a person's heart health -- although it's not clear how to explain the link.
"Here we're moving that into people's daily lives, and that's what's so exciting," said Friedmann, who wasn't involved in the new work, but has done similar research. "It really goes beyond what happens in a ten minute period in the lab."
For the new study, researchers at Kitasato University in Kanagawa, Japan, monitored 191 people with diabetes, high blood pressure or high cholesterol over 24 hours. The researchers also asked them about their daily activities and whether or not they owned a pet.
About four in 10 people owned a pet, but other than that the two groups were similar, Naoko Aiba and colleagues report in the American Journal of Cardiology.
Each person wore a heart monitor for 24 hours to determine the variation in their heart rate. For pet owners, about five percent of their heart beats differed by 50 milliseconds in length; for non-pet owners, that number was 2.5 percent, which means their heart rate changed less.
So far, nobody knows what's causing the difference between the two groups -- it could be due to the pets somehow, or it could be there are differences between people who choose to get a pet and those who don't.
"My guess is that pets are a form of social support, hence stress reduction, and they can satisfy some but not all social companionship needs," Judith Siegel, a professor at the UCLA School of Public Health, told Reuters Health by email.
But she added that earlier research on the topic has yielded conflicting results.
"I don't think anyone has a good handle yet on why these discrepancies exist," said Siegel, who was not involved with the new study.
The Japanese researchers also caution that they only looked at one day in the person's life. And other factors need to be considered in future research, such as potential differences between different types of pets.
Past research has shown that aerobic exercise can improve heart rate variability. As for whether a person should get a pet to protect their ticker, Friedmann said that's OK as long as they want one anyway.
But, she adds, "It's not going to cure someone."
HAVING MEDICAL ISSUES--AND BEING AWAY FROM HOME
This is a very interesting piece by a young lady working as an intern for the NY Times. She's been trying to attend college, but she has Crohn's Disease, which flares up from time to time and gives her severe stomach pains. Yet she finds ways to cope, and I think the advice she gives is relevant to those of us who have Moebius Syndrome and either are or will be attending college; or really, for anyone who has to be away from home for a time and may have medical issues arise. The entire article is here. (The young lady's name is Lily Altavena.) And here's some excellent advice she shares:
"Here’s my advice for students with medical needs:
Find a doctor
Find a physician who is a specialist before you leave for school, or during the first months. Make an appointment, even if you do not need one, right away. Don’t wait until you are sick. Bring them your medical records to copy and keep on file.
Get your medical records together
For my disease, that means the results of past colonoscopies and blood tests. Have them on your computer, or in a folder, printed out, ready to hand over to any doctor.
Tell your professor early
I have never encountered an instructor who was not understanding about my medical situation. I did not miss class excessively, but I did miss more than ordinarily acceptable, and I occasionally needed an extension on an essay. Stay on top of your work, but remember that health is your priority.
Stay in communication with your parents
Sure, you are an adult now, but you probably have no idea how complicated health insurance can be. Tell your parents exactly how sick you are. Yes, it can be annoying when they call constantly, but it’s because they care.
Know when it’s time to go home
I have never reached this point, but I have been close. Leaving in the middle of the semester isn’t ideal, but if you are close to hospitalization, or missing all of your classes, you need to focus on getting better. Being hospitalized far from home is not fun. It might take longer to finish your degree, but the time it takes doesn’t matter."
"The best way to make your dreams come true is to wake up."
-Paul Valery
I know many of you out there who have Moebius, or have other physical differences, have pets...and love your pets. And here's another reason to love them:
"Pet owners with chronic diseases appear to have healthier tickers than people living without an animal companion, a new study shows.
Monitoring the hearts of nearly 200 Japanese people, scientists found those who had a pet -- whether furry, scaly or feathery -- had higher heart rate variability than those who didn't.
That means their hearts respond better to the body's changing requirements, such as beating faster during stressful situations. Reduced heart rate variability, on the other hand, has been linked to a higher risk of dying from heart disease.
Erika Friedmann, a professor at the University of Maryland School of Nursing, said the study is a step forward from what is already known about the connection between pet ownership and a person's heart health -- although it's not clear how to explain the link.
"Here we're moving that into people's daily lives, and that's what's so exciting," said Friedmann, who wasn't involved in the new work, but has done similar research. "It really goes beyond what happens in a ten minute period in the lab."
For the new study, researchers at Kitasato University in Kanagawa, Japan, monitored 191 people with diabetes, high blood pressure or high cholesterol over 24 hours. The researchers also asked them about their daily activities and whether or not they owned a pet.
About four in 10 people owned a pet, but other than that the two groups were similar, Naoko Aiba and colleagues report in the American Journal of Cardiology.
Each person wore a heart monitor for 24 hours to determine the variation in their heart rate. For pet owners, about five percent of their heart beats differed by 50 milliseconds in length; for non-pet owners, that number was 2.5 percent, which means their heart rate changed less.
So far, nobody knows what's causing the difference between the two groups -- it could be due to the pets somehow, or it could be there are differences between people who choose to get a pet and those who don't.
"My guess is that pets are a form of social support, hence stress reduction, and they can satisfy some but not all social companionship needs," Judith Siegel, a professor at the UCLA School of Public Health, told Reuters Health by email.
But she added that earlier research on the topic has yielded conflicting results.
"I don't think anyone has a good handle yet on why these discrepancies exist," said Siegel, who was not involved with the new study.
The Japanese researchers also caution that they only looked at one day in the person's life. And other factors need to be considered in future research, such as potential differences between different types of pets.
Past research has shown that aerobic exercise can improve heart rate variability. As for whether a person should get a pet to protect their ticker, Friedmann said that's OK as long as they want one anyway.
But, she adds, "It's not going to cure someone."
HAVING MEDICAL ISSUES--AND BEING AWAY FROM HOME
This is a very interesting piece by a young lady working as an intern for the NY Times. She's been trying to attend college, but she has Crohn's Disease, which flares up from time to time and gives her severe stomach pains. Yet she finds ways to cope, and I think the advice she gives is relevant to those of us who have Moebius Syndrome and either are or will be attending college; or really, for anyone who has to be away from home for a time and may have medical issues arise. The entire article is here. (The young lady's name is Lily Altavena.) And here's some excellent advice she shares:
"Here’s my advice for students with medical needs:
Find a doctor
Find a physician who is a specialist before you leave for school, or during the first months. Make an appointment, even if you do not need one, right away. Don’t wait until you are sick. Bring them your medical records to copy and keep on file.
Get your medical records together
For my disease, that means the results of past colonoscopies and blood tests. Have them on your computer, or in a folder, printed out, ready to hand over to any doctor.
Tell your professor early
I have never encountered an instructor who was not understanding about my medical situation. I did not miss class excessively, but I did miss more than ordinarily acceptable, and I occasionally needed an extension on an essay. Stay on top of your work, but remember that health is your priority.
Stay in communication with your parents
Sure, you are an adult now, but you probably have no idea how complicated health insurance can be. Tell your parents exactly how sick you are. Yes, it can be annoying when they call constantly, but it’s because they care.
Know when it’s time to go home
I have never reached this point, but I have been close. Leaving in the middle of the semester isn’t ideal, but if you are close to hospitalization, or missing all of your classes, you need to focus on getting better. Being hospitalized far from home is not fun. It might take longer to finish your degree, but the time it takes doesn’t matter."
"The best way to make your dreams come true is to wake up."
-Paul Valery
Monday, February 13, 2012
Question of the day: so how much sleep do your kids REALLY need, be they children with Moebius, or not? Funny thing: looking at this historically, the answer seems to be that--well, really experts have never agreed on this, and research has shown that children always have actually gotten less sleep than experts believed they needed...going all the way back to the 19th century. But most of us have somehow muddled through anyway. Read on--it's interesting:
"Perhaps you’ve heard that kids today desperately need more sleep. Maybe you’ve even allowed yourself to get caught up in the panic over electronic devices’ stealing our children’s slumber, to the detriment of their mental and physical health and overall well-being.
A new study says “harrumph” to all that.
Research published Monday morning in the journal Pediatrics explains that the medical and public health communities have fretted over children’s sleep deprivation for generations. Everything from radio to reading has been blamed for keeping kids from getting the shut-eye they supposedly need: “In the early 1900s, artificial lighting, radio, reading, and the cinema were considered to be the causes of delayed bedtimes,” the authors write. “By the late 1990s, video games, television viewing, the Internet, and mobile telephones were largely held responsible for such delays.”
But in all those years, the authors point out, nobody has ever presented empirical evidence to support their recommendations regarding children’s sleep needs. Nobody has actually figured out exactly how much sleep children really need, how much they get, or how lack of sleep might affect their bodies, minds, or any other aspect of their lives.
Researchers at the University of South Australia read widely in both scientific and popular literature about recommendations regarding kids’ need for sleep, starting when the matter first emerged as an issue of concern in the late 19th century. Curiously, the only era during which no specific recommendations for duration of kids’ sleep were made was the mid-to-late 20th century, during which time researchers were more interested in the physiology of sleep and sleep regulation.
The article makes the fascinating observation that, across all age groups, recommendations for the amount of sleep kids and teens need have decreased about 0.71 minutes per year, for a total of 70 minutes over the course of the 20th century. At the same time, the actual amount of time kids have spent sleeping has declined by almost exactly the same amount — 0.73 minutes per year. Whether in 1897 or 2009, children have consistently got about 37 fewer minutes’ sleep than recommendations called for.
The authors make no bones about the irrationality of the situation. One of the consistencies they found in the sleep literature, whatever its era, was the acknowledgement that the recommendations were basically drawn out of thin air.
The authors note in their brief conclusion that we know much more about the mechanisms by which nutrition, physical activity and sedentary behavior influence children’s health. It’s high time, they suggest, that we get busy learning more about how sleep — or lack thereof — actually affects kids.
In the end, the authors note, “No matter how much sleep children are getting, it has always been assumed that they need more.”
My opinion? Parents will always know their own child best; and as long as you continue to study him or her, and know him or her, then you will know how much sleep your child needs to be at his or her best. Just go with that...
MEANWHILE...GOOD NEWS CONCERNING VALENTINE'S DAY
Those chocolates you receive from your honey? They can be good for you:
"Show your heart some love this Valentine’s Day by nibbling a few chocolates—and making them a regular treat throughout the year. A recent study found that those consuming the highest levels of chocolate had a 37% reduction in cardiovascular disease and a 29% reduction in stroke compared to those with lower chocolate intakes.
Chocolate may help you with math.
Flavonols, compounds in chocolate with antioxidant-like properties, are thought to improve circulation, including blood flow to the brain. A 2009 study asked participants to count backward in groups of three from a number between 800 and 999. After drinking hot cocoa filled with flavonols, the participants were able to do calculations more quickly and accurately and were less likely to feel tired or mentally drained."
http://www.wday.com/event/article/id/58920/
There's more...read the whole thing.
MOEBIUS SYNDROME IN THE NEWS
And finally, in case you have not seen it yet, read about yet another remarkable young boy with Moebius Syndrome--Ryan Larsen, from Detroit Lakes, Minnesota. A story about him appeared on a Minnesota television station--you can find it here. Here's a touching excerpt from the piece:
"Ryan's mother has found herself getting involved with other moms around the country who have children with Moebius. She, like any parent, hopes this baby's childhood years will be spared the cruel comments that come with being different.
Nikki Larsen: “I think what concerns me is how he will be perceived for not having a facial expression, not having that initial smile people can turn the other way. I want to protect him from that.”
There is no shortage of love or playtime in Ryan's house. He has parents who think the world of him, and want nothing more than a good life for their little boy."
Hey, with good, caring parents and family, Ryan can't go wrong...
"If we do not discipline ourselves, the world will do it for
us." -William Feather
Friday, February 10, 2012
BABY NEWS
So today, sort of an update and a story. As many of you know, my wife Lisa and I will be having a baby soon--a girl. It will be our second; we already have our terrific son, Ethan, who is about to turn 4. We went to the doctor today for a routine checkup, to see how things are going with the unborn baby. Our due date isn't until March 16th. We weren't expecting big news today. But we got some--the pregnancy is progressing so well, that our baby girl might just be born earlier than expected--even before the month of February is out. Perhaps within two weeks. Yow!
Well, we'll be ready. But finding out that the baby might just come sooner than we thought definitely gives one a shot of adrenaline; and reminds me of those days when baby Ethan was born, back on February 11, 2008. What was happening with us was sort of a big deal; I mean, both Lisa and I have Moebius Syndrome. As far as we both knew then and know now, there had not been a couple, who BOTH had Moebius, who had a child together (there certainly have been many wonderful children born to moms and dads in which one of them had Moebius). So we didn't know what would happen. Would our baby have Moebius Syndrome?
We certainly thought about the possibility, and tried to be mentally ready in case it happened. Both Lisa and I figured that, well, if that happened, who better to teach our son how to live life with Moebius than us, who both had been doing it? We certainly would know a lot about what Moebius means, and the problems it could create. But the thing was--as Lisa's pregnancy progressed, and as the checkups came and went, everything seemed very normal for our unborn child. There seemed to be no indication of anything different, or wrong, or abnormal for him. And we both came to feel pretty certain--when Ethan, as his name turned out to be, was born, we didn't think he'd have Moebius.
But when the big moment came, I think it's safe to say that for both of us, we still wondered a little: would he be affected by Moebius somehow? Was there something that the doctors simply hadn't seen? When Ethan was bortn, I quickly began looking as hard as I could to study his face, and his eyes...and sure enough, he had no Moebius at all. We would have loved him just as much, if not more, no matter what he had; but instead the deal was--both of Ethan's parents have Moebius, but he absolutely does not, and he smiles and moves his eyes like crazy. And we're glad for him. He smiles for us. :+)
We feel good about this new baby as well, and the doctors have been very happy with her development; she certainly has a strong heartbeat. But still, when she's born, both Lisa and I will study her carefully, because honestly...when both parents have Moebius, and you're going to have a baby, you just don't know for sure. You wonder. And you don't want to take anything for granted. But like I said, what we do know is that we can handle anything, and we'll love the baby no matter what. And the stork bringing her may already be in flight...!
"When is the baby is mommy's tummy coming???"--Ethan Smant, perhaps being clairvoyant (!), the other day.
So today, sort of an update and a story. As many of you know, my wife Lisa and I will be having a baby soon--a girl. It will be our second; we already have our terrific son, Ethan, who is about to turn 4. We went to the doctor today for a routine checkup, to see how things are going with the unborn baby. Our due date isn't until March 16th. We weren't expecting big news today. But we got some--the pregnancy is progressing so well, that our baby girl might just be born earlier than expected--even before the month of February is out. Perhaps within two weeks. Yow!
Well, we'll be ready. But finding out that the baby might just come sooner than we thought definitely gives one a shot of adrenaline; and reminds me of those days when baby Ethan was born, back on February 11, 2008. What was happening with us was sort of a big deal; I mean, both Lisa and I have Moebius Syndrome. As far as we both knew then and know now, there had not been a couple, who BOTH had Moebius, who had a child together (there certainly have been many wonderful children born to moms and dads in which one of them had Moebius). So we didn't know what would happen. Would our baby have Moebius Syndrome?
We certainly thought about the possibility, and tried to be mentally ready in case it happened. Both Lisa and I figured that, well, if that happened, who better to teach our son how to live life with Moebius than us, who both had been doing it? We certainly would know a lot about what Moebius means, and the problems it could create. But the thing was--as Lisa's pregnancy progressed, and as the checkups came and went, everything seemed very normal for our unborn child. There seemed to be no indication of anything different, or wrong, or abnormal for him. And we both came to feel pretty certain--when Ethan, as his name turned out to be, was born, we didn't think he'd have Moebius.
But when the big moment came, I think it's safe to say that for both of us, we still wondered a little: would he be affected by Moebius somehow? Was there something that the doctors simply hadn't seen? When Ethan was bortn, I quickly began looking as hard as I could to study his face, and his eyes...and sure enough, he had no Moebius at all. We would have loved him just as much, if not more, no matter what he had; but instead the deal was--both of Ethan's parents have Moebius, but he absolutely does not, and he smiles and moves his eyes like crazy. And we're glad for him. He smiles for us. :+)
We feel good about this new baby as well, and the doctors have been very happy with her development; she certainly has a strong heartbeat. But still, when she's born, both Lisa and I will study her carefully, because honestly...when both parents have Moebius, and you're going to have a baby, you just don't know for sure. You wonder. And you don't want to take anything for granted. But like I said, what we do know is that we can handle anything, and we'll love the baby no matter what. And the stork bringing her may already be in flight...!
"When is the baby is mommy's tummy coming???"--Ethan Smant, perhaps being clairvoyant (!), the other day.
Thursday, February 9, 2012
BALANCING ACT
Hey, all you out there with Moebius Syndrome--do you sometimes have trouble maintaining your balance? That is, have you often felt--and been--physically awkward, a bit stumbling, bumbling, bumping into things, etc? I know sometimes I feel that way. Some of it I know comes from the simple fact that I can't see everything that others can. I can only see out of one eye at a time. I've got to believe that such a thing affects perspective, balance, all kinds of things. But--maybe there are some things that can help. Take the art of tai chi, for example--it already helps persons with Parkinson's Disease:
"Researchers and aficionados of the ancient Chinese art of tai chi are already aware of how this moving meditation can help reduce stress and improve balance. Now a new study finds that the gentle flowing motions of this so-called "soft martial art" can help improve balance problems commonly suffered by Parkinson's patients. The study finds that bi-weekly tai chi training improved balance and reduced falls among a group of patients with mild to moderate Parkinson’s disease.
“While medication can relieve some, but not all Parkinson's symptoms such as tremors, rigidity and slowness,” explained lead author Fuzhong Li of the Oregon Research Institute, “Tai chi helped patients improve their posture and balance.” The study was published in the New England Journal of Medicine Wednesday.
Every day, up to a million Americans are coping with Parkinson’s disease, one of the most common nervous system disorders among the elderly. Parkinson's patients lose muscle function because nerve cells in a certain part of the brain that produce dopamine are slowly destroyed and the brain can no longer properly send messages. As a results, patients develop characteristic tremors of the hands, arms, legs, jaw and face, as well as poor posture and difficulty maintaining balance, among many other possible symptoms.
Li explained that exercise is an important part of treatment for Parkinson’s patients, helping them to increase and retain their mobility. The authors conducted a clinical trial that included 195 patients with mild to moderate Parkinson’s. They were randomly assigned to one of three exercise groups that performed one hour of exercise, twice a week for 24 weeks. The exercises were tai chi, resistance training, or stretching.
The patients in the tai chi group learned six movements that were combined into a routine. Tai chi requires participants to use conscientious controlled use of muscles, combined with balance shifts and trunk movements. “Imagine standing on a moving bus,” Li explained, “And when the bus turns a corner and changes speed, you need to shift your balance and move your feet to remain stable. That’s similar to how the tai chi training works.”
Participants were evaluated when the study began, at three months, six months and again three months after the trial ended. Patients in the tai chi group improved posture stability and balance, compared to people in the resistance training and stretching groups. Tai chi also reduced falls, and the study notes: “Falls are a common and sometimes life-threatening event in patients with Parkinson’s disease. However, to our knowledge, no clinical trial has shown the efficacy of exercise in reducing falls in this population.”
"You never will be the person you can be if pressure, tension
and discipline are taken out of your life." -James G. Bilkey
Hey, all you out there with Moebius Syndrome--do you sometimes have trouble maintaining your balance? That is, have you often felt--and been--physically awkward, a bit stumbling, bumbling, bumping into things, etc? I know sometimes I feel that way. Some of it I know comes from the simple fact that I can't see everything that others can. I can only see out of one eye at a time. I've got to believe that such a thing affects perspective, balance, all kinds of things. But--maybe there are some things that can help. Take the art of tai chi, for example--it already helps persons with Parkinson's Disease:
"Researchers and aficionados of the ancient Chinese art of tai chi are already aware of how this moving meditation can help reduce stress and improve balance. Now a new study finds that the gentle flowing motions of this so-called "soft martial art" can help improve balance problems commonly suffered by Parkinson's patients. The study finds that bi-weekly tai chi training improved balance and reduced falls among a group of patients with mild to moderate Parkinson’s disease.
“While medication can relieve some, but not all Parkinson's symptoms such as tremors, rigidity and slowness,” explained lead author Fuzhong Li of the Oregon Research Institute, “Tai chi helped patients improve their posture and balance.” The study was published in the New England Journal of Medicine Wednesday.
Every day, up to a million Americans are coping with Parkinson’s disease, one of the most common nervous system disorders among the elderly. Parkinson's patients lose muscle function because nerve cells in a certain part of the brain that produce dopamine are slowly destroyed and the brain can no longer properly send messages. As a results, patients develop characteristic tremors of the hands, arms, legs, jaw and face, as well as poor posture and difficulty maintaining balance, among many other possible symptoms.
Li explained that exercise is an important part of treatment for Parkinson’s patients, helping them to increase and retain their mobility. The authors conducted a clinical trial that included 195 patients with mild to moderate Parkinson’s. They were randomly assigned to one of three exercise groups that performed one hour of exercise, twice a week for 24 weeks. The exercises were tai chi, resistance training, or stretching.
The patients in the tai chi group learned six movements that were combined into a routine. Tai chi requires participants to use conscientious controlled use of muscles, combined with balance shifts and trunk movements. “Imagine standing on a moving bus,” Li explained, “And when the bus turns a corner and changes speed, you need to shift your balance and move your feet to remain stable. That’s similar to how the tai chi training works.”
Participants were evaluated when the study began, at three months, six months and again three months after the trial ended. Patients in the tai chi group improved posture stability and balance, compared to people in the resistance training and stretching groups. Tai chi also reduced falls, and the study notes: “Falls are a common and sometimes life-threatening event in patients with Parkinson’s disease. However, to our knowledge, no clinical trial has shown the efficacy of exercise in reducing falls in this population.”
"You never will be the person you can be if pressure, tension
and discipline are taken out of your life." -James G. Bilkey
Wednesday, February 8, 2012
Touching on some random items...
GOT PAIN? DEPT.
"When you distract yourself from pain, you actually hurt less, a new study suggests.
Study participants who were subjected to slight pain on their forearms reported less discomfort when they were asked to perform a distracting mental test as the pain was delivered.
Moreover, when participants were given a placebo "pain relief" cream, and distracted at the same time, their pain was even more reduced.
"Both placebo and distraction are effective mechanisms for reducing pain. You can combine them and you don't lose anything," said study researcher Jason Buhle, who conducted the research as part of his doctoral dissertation from Columbia University."
DOES FACEBOOK TAKE A TOLL ON YOUR MENTAL HEALTH?
Well, not exactly--rather, it's about how you use FB that is the key:
"Facebook's initial public offering of stock is likely to make a lot of developers and designers of the site very wealthy. But for many users, frequent Facebooking may not be so beneficial.
According to three new studies, Facebook can be tough on mental health, offering an all-too-alluring medium for social comparison and ill-advised status updates. And while adding a friend on the social networking site can make people feel cheery and connected, having a lot of friends is associated with feeling worse about one's own life.
GOT PAIN? DEPT.
"When you distract yourself from pain, you actually hurt less, a new study suggests.
Study participants who were subjected to slight pain on their forearms reported less discomfort when they were asked to perform a distracting mental test as the pain was delivered.
Moreover, when participants were given a placebo "pain relief" cream, and distracted at the same time, their pain was even more reduced.
"Both placebo and distraction are effective mechanisms for reducing pain. You can combine them and you don't lose anything," said study researcher Jason Buhle, who conducted the research as part of his doctoral dissertation from Columbia University."
DOES FACEBOOK TAKE A TOLL ON YOUR MENTAL HEALTH?
Well, not exactly--rather, it's about how you use FB that is the key:
"Facebook's initial public offering of stock is likely to make a lot of developers and designers of the site very wealthy. But for many users, frequent Facebooking may not be so beneficial.
According to three new studies, Facebook can be tough on mental health, offering an all-too-alluring medium for social comparison and ill-advised status updates. And while adding a friend on the social networking site can make people feel cheery and connected, having a lot of friends is associated with feeling worse about one's own life.
Tuesday, February 7, 2012
PITFALLS IN ONLINE DATING
Let's face it, relationships are one of the big issues for those with Moebius Syndrome. It's not always easy for us to meet other people, to start a good relationship, much less to keep a good one. When it comes to dating, persons without Moebius put a lot of stock in a certain kind of appearance; and sometimes they don't understand our differences. (I well remember how sometimes my very first girlfriend, many years ago, who didn't have Moebius, just didn't understand how I did not see all that she saw when she saw it; she couldn't understand that while I have two eyes, I can only see out of one eye at a time, unlike her). So therefore--it's certainly tempting for many in our community to try online dating. And I say: go for it. But just be aware of the potential problems you might face:
"Thanks to the proliferation of online dating, would-be couples are now almost as likely to meet via email or a virtual "wink" as they are through friends and family.
In 1992, when the Internet was still in its infancy, less than 1 percent of Americans met their partners through personal ads or matchmaking services. By 2009, 22 percent of heterosexual couples and 61% of same-sex couples reported meeting online, one survey found.
Single people have more options than ever before, as websites such as Match.com and eHarmony have dramatically widened the pool of potential dating partners. But that may have a downside. According to a new review of online dating written by a team of psychologists from around the country, dating websites may warp a person's outlook and expectations in ways that can actually lower the chances of building a successful relationship.
"Online dating is great. It allows people access to potential partners they otherwise would not have," says Eli J. Finkel, Ph.D., the lead author of the new review, which was commissioned by the Association for Psychological Science and will appear in the February issue of the journal Psychological Science in the Public Interest. "However, specific things the online dating industry does [do] undermine some of its greatness."
One of the weaknesses of online dating is an over reliance on "profiles," the researchers say. Although most dating websites feature photos and detailed, searchable profiles covering everything from personality traits to likes and dislikes, this information isn't necessarily useful in identifying a partner, Finkel and his coauthors write.
That's partly because daters don't always know what they want in a mate -- even though they generally think they do. Studies suggest that people often lack insight into what attracts them to others (and why), and therefore the characteristics they seek out in an online profile may be very different from those that will create a connection in person, the review notes.
"Pretty much all of online dating works through profiles," says Finkel, an associate professor of social psychology at Northwestern University, in Evanston, Illinois. "But you can spend a zillion hours studying profile after profile and, at the end of that Herculean effort, how much closer are you to knowing if there's a romantic spark?"
The abundance of profiles online also may make daters too picky and judgmental, the authors say. The sheer number of options can be overwhelming, and the ease with which people can sift through profiles -- and click on to the next one -- may lead them to "objectify" potential partners and compare them like so many pairs of shoes.
"Online dating creates a shopping mentality, and that is probably not a particularly good way to go about choosing a mate," says Harry Reis, Ph.D., one of the review's authors and a professor of psychology at the University of Rochester Medical Center, in Rochester, New York.
The shopping mindset may be efficient online, but when carried into face-to-face interactions it can make daters overly critical and discourage "fluid, spontaneous interaction" in what is already a charged and potentially awkward situation, Reis and his coauthors write.
Communicating via email or instant message before meeting in person doesn't always cure this problem. Some online communication is a good thing, the researchers say, but too much of it can skew expectations and ultimately sabotage a match. People tend to read too much into emails and other online conversations, which increases the potential for misunderstandings and disappointment, they point out.
Some services, such as eHarmony and PerfectMatch.com, claim to minimize the guesswork involved in online dating by using mathematical algorithms to match couples according to various traits -- including, in one case, the ratio of index- to ring-finger length (said to be a marker of testosterone levels).
The authors of the review are skeptical of these claims. They weren't able to find a single rigorous study showing the effectiveness of the algorithms, and other research suggests it's extremely difficult to predict the likelihood that a relationship will succeed before two people meet.
"Not only is there no scientific evidence, despite the claims, [but] my team of co-authors have become pessimistic that there could ever be in principle an algorithm that could match people well based on the approaches these sites take," Finkel says.
To make matters worse, Finkel and his colleagues say, these algorithm-based services may encourage a counterproductive "destiny" mindset that prizes initial compatibility over other factors that are important to the long-term health of a relationship, such as the social and economic support individuals offer each other, or their ability to cope with stressful life events.
"Certain sites promise much more than they can deliver, and by inducing people to search for that perfect soul mate, they may actually be undermining the very thing [people] most want," Reis says.
None of this, however, means that online dating isn't a good way to meet people. The review stresses that websites are a valuable resource for daters -- as long as a person doesn't put too much stock in the profiles or matchmaking claims.
Finkel, for one, advises online daters to identify promising partners and move the conversation off-line as quickly as possible.
"Don't assume that more time spent browsing profiles is going to improve the odds of meeting someone who is really compatible," he says. "Be as quick and haphazard as you want with that process, because it's not meaningful."
Instead of poring over more profiles and comparing height, weight, occupation, and interests, send a note to a potential date suggesting you meet for coffee or lunch (in a public place), and use that time to get to know the other person, Reis says.
"Don't focus on evaluating that person," he says. "Can you laugh with that person? Can you feel simpatico with that person?"
As Finkel puts it, "There's probably never going to be a substitute for getting two minutes from another person across a cup of coffee."
"If something is wrong, fix it if you can. But train yourself
not to worry. Worry never fixes anything." -Mary Hemingway
Let's face it, relationships are one of the big issues for those with Moebius Syndrome. It's not always easy for us to meet other people, to start a good relationship, much less to keep a good one. When it comes to dating, persons without Moebius put a lot of stock in a certain kind of appearance; and sometimes they don't understand our differences. (I well remember how sometimes my very first girlfriend, many years ago, who didn't have Moebius, just didn't understand how I did not see all that she saw when she saw it; she couldn't understand that while I have two eyes, I can only see out of one eye at a time, unlike her). So therefore--it's certainly tempting for many in our community to try online dating. And I say: go for it. But just be aware of the potential problems you might face:
"Thanks to the proliferation of online dating, would-be couples are now almost as likely to meet via email or a virtual "wink" as they are through friends and family.
In 1992, when the Internet was still in its infancy, less than 1 percent of Americans met their partners through personal ads or matchmaking services. By 2009, 22 percent of heterosexual couples and 61% of same-sex couples reported meeting online, one survey found.
Single people have more options than ever before, as websites such as Match.com and eHarmony have dramatically widened the pool of potential dating partners. But that may have a downside. According to a new review of online dating written by a team of psychologists from around the country, dating websites may warp a person's outlook and expectations in ways that can actually lower the chances of building a successful relationship.
"Online dating is great. It allows people access to potential partners they otherwise would not have," says Eli J. Finkel, Ph.D., the lead author of the new review, which was commissioned by the Association for Psychological Science and will appear in the February issue of the journal Psychological Science in the Public Interest. "However, specific things the online dating industry does [do] undermine some of its greatness."
One of the weaknesses of online dating is an over reliance on "profiles," the researchers say. Although most dating websites feature photos and detailed, searchable profiles covering everything from personality traits to likes and dislikes, this information isn't necessarily useful in identifying a partner, Finkel and his coauthors write.
That's partly because daters don't always know what they want in a mate -- even though they generally think they do. Studies suggest that people often lack insight into what attracts them to others (and why), and therefore the characteristics they seek out in an online profile may be very different from those that will create a connection in person, the review notes.
"Pretty much all of online dating works through profiles," says Finkel, an associate professor of social psychology at Northwestern University, in Evanston, Illinois. "But you can spend a zillion hours studying profile after profile and, at the end of that Herculean effort, how much closer are you to knowing if there's a romantic spark?"
The abundance of profiles online also may make daters too picky and judgmental, the authors say. The sheer number of options can be overwhelming, and the ease with which people can sift through profiles -- and click on to the next one -- may lead them to "objectify" potential partners and compare them like so many pairs of shoes.
"Online dating creates a shopping mentality, and that is probably not a particularly good way to go about choosing a mate," says Harry Reis, Ph.D., one of the review's authors and a professor of psychology at the University of Rochester Medical Center, in Rochester, New York.
The shopping mindset may be efficient online, but when carried into face-to-face interactions it can make daters overly critical and discourage "fluid, spontaneous interaction" in what is already a charged and potentially awkward situation, Reis and his coauthors write.
Communicating via email or instant message before meeting in person doesn't always cure this problem. Some online communication is a good thing, the researchers say, but too much of it can skew expectations and ultimately sabotage a match. People tend to read too much into emails and other online conversations, which increases the potential for misunderstandings and disappointment, they point out.
Some services, such as eHarmony and PerfectMatch.com, claim to minimize the guesswork involved in online dating by using mathematical algorithms to match couples according to various traits -- including, in one case, the ratio of index- to ring-finger length (said to be a marker of testosterone levels).
The authors of the review are skeptical of these claims. They weren't able to find a single rigorous study showing the effectiveness of the algorithms, and other research suggests it's extremely difficult to predict the likelihood that a relationship will succeed before two people meet.
"Not only is there no scientific evidence, despite the claims, [but] my team of co-authors have become pessimistic that there could ever be in principle an algorithm that could match people well based on the approaches these sites take," Finkel says.
To make matters worse, Finkel and his colleagues say, these algorithm-based services may encourage a counterproductive "destiny" mindset that prizes initial compatibility over other factors that are important to the long-term health of a relationship, such as the social and economic support individuals offer each other, or their ability to cope with stressful life events.
"Certain sites promise much more than they can deliver, and by inducing people to search for that perfect soul mate, they may actually be undermining the very thing [people] most want," Reis says.
None of this, however, means that online dating isn't a good way to meet people. The review stresses that websites are a valuable resource for daters -- as long as a person doesn't put too much stock in the profiles or matchmaking claims.
Finkel, for one, advises online daters to identify promising partners and move the conversation off-line as quickly as possible.
"Don't assume that more time spent browsing profiles is going to improve the odds of meeting someone who is really compatible," he says. "Be as quick and haphazard as you want with that process, because it's not meaningful."
Instead of poring over more profiles and comparing height, weight, occupation, and interests, send a note to a potential date suggesting you meet for coffee or lunch (in a public place), and use that time to get to know the other person, Reis says.
"Don't focus on evaluating that person," he says. "Can you laugh with that person? Can you feel simpatico with that person?"
As Finkel puts it, "There's probably never going to be a substitute for getting two minutes from another person across a cup of coffee."
"If something is wrong, fix it if you can. But train yourself
not to worry. Worry never fixes anything." -Mary Hemingway
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