DELAY IN AGE OF WALKING CAN HERALD MUSCULAR DYSTROPHY IN BOYS WITH COGNITIVE DELAYS

The timing of a toddler's first steps is an important developmental milestone, but a slight delay in walking is typically not a cause of concern by itself.

Now a duo of Johns Hopkins researchers has found that when walking and cognitive delays occur in concert, the combination could comprise the earliest of signals heralding a rare but devastating disorder known as Duchenne muscular dystrophy (DMD).

The study, published ahead of print in The Journal of Pediatrics and conducted by a medical student and a pediatric neurologist, reveals that delays in the onset of walking -- which should occur between 9 and 16 months of age -- are common among boys with DMD and often happen alongside cognitive delays. That combination, the investigators say, can give pediatricians a critical early diagnostic clue and tip them off to the presence of DMD.

"Our review of patient records shows that delayed walking along with cognitive delays represents an ominous combination that should prompt pediatricians to conduct further testing and could speed up diagnosis and treatment," says Kara Mirski, a fourth-year medical student at the Johns Hopkins University School of Medicine. "Earlier diagnosis means that we can start treating these kids sooner and greatly improve their long-term outcomes."

DMD is caused by a defective muscle protein. It is marked by progressive loss of muscle strength and function and, eventually, inability to walk at all. In its advanced forms, the condition can also compromise the function of the heart and breathing muscles. DMD, which almost exclusively affects males, is estimated to occur in one out of 3,500 boys.

Current guidelines from the American Academy of Neurology and the Child Neurology Society do not include DMD on the suspected diagnoses list for boys with developmental delays. While neither cognitive delays nor delayed walking by themselves are necessarily caused by DMD, when the two occur in tandem they should raise the index of suspicion and seriously narrow the range of diagnostic possibilities, the team says.

"The bottom line is that any delay in walking should lead to further probing, or at least vigilant monitoring, and when late walking occurs in the context of other developmental delays, it should put DMD on every pediatrician's radar as a possible cause," says study author Tom Crawford, M.D., a pediatric neurologist and muscular dystrophy expert at the Johns Hopkins Children's Center.

Once a physician suspects DMD, a child can be screened further with a cheap and widely available test that measures the blood levels of creatinine kinase (CK), a protein released as a result of muscle damage or muscle cell death. Normal CK levels rule out DMD.

Once diagnosis is made, treatment with steroids and physical therapy can halt or slow muscle damage and help preserve mobility and function, the researchers say. In addition, because most cases of DMD are inherited, earlier diagnosis would allow families to consult a genetic counselor who can help them make informed decisions about subsequent pregnancies.

DMD can be easily missed during the infant and toddler years, even among children with developmental delays, Crawford notes. The condition's characteristic muscle weakness does not present at such an early age, and the absence of the disease's defining symptom can easily throw off pediatricians. This is why, Crawford says, any developmental delay should prompt pediatricians to probe deeper.

In addition, while most cases of DMD stem from inherited genetic defects, some genetic mutations can arise spontaneously in families without history of the disorder. In those cases, diagnosis can be delayed even further, until a child is 5 or 6 years old, the researchers say.

For the study, the investigators examined the clinical records of 107 children with DMD referred to the Johns Hopkins Children's Center between 1989 and 2012 for diagnosis or treatment. Nearly half (42 percent) had a history of delayed walking (age 16 months or later). Toddlers who started walking late were three times as likely to have cognitive delays as those who began walking on time. The link between the time of a child's first steps and cognitive delay persisted even when investigators eliminated other factors such as the speed and severity of muscle degeneration or age of diagnosis. The study also revealed that DMD patients who started walking late were not referred for diagnostic work-up any earlier than their counterparts who started walking at what is deemed a typical age. In other words, delayed walking did not emerge as the red flag it should have been, the investigators say.

The Age Game

This article by Nancy Travers puts the problems of older people with HIV in the spotlight. In an age where the over 55s are seen as a financial burden on society; it's not easy being grey!

People living with HIV today are in a different world than those who were diagnosed even 15 years ago. Although infection with the HIV virus is still very serious, thanks to a healthy life style and proper medication, people who are HIV-positive can now lead largely normal lives for a much longer time. The combinations of drugs available today have allowed many people with HIV to fight infections and stay relatively healthy into old age. Being HIV positive isn't a death sentence anymore. There's a plethora of information out there on how to live well with HIV.

The same rules for longevity apply to people with HIV:

Cultivate healthy eating habits
Reduce stress
Obey physicians' recommendations
Quit smoking, drinking to excess and using drugs not prescribed by your doctor
Keep immunizations current. They can help prevent infections
Get adequate exercise, relaxation and sleep
Ask your physician for further recommendations and additional help

There are a lot of people living with HIV today who are 60 and older. Unfortunately, they may feel older than their stated age because they are dealing with some of the same problems people much older would suffer. A survey of around 1,000 HIV-positive men and women ages 50 and above living in New York City determined that more than half had symptoms of depression, a much higher rate than others their age without HIV.
In addition, most of them had other chronic medical conditions such as arthritis (31 percent), hepatitis (31 percent), neuropathy (30 percent) and high blood pressure (27 percent). Some 77 percent had two or more other conditions. About half had already progressed to AIDS before they'd even received the HIV diagnosis, the report found.Currently, about 27 percent of people with HIV are over 50. More than half will be over 50 by 2015, said the report. Due to the special needs of HIV-positive individuals, challenges are on the horizon for public health systems and organizations that serve seniors and people with HIV.

HIV can be a lonely road. According to one report, 70 percent of older Americans with HIV live alone. That's more than twice the rate of others their age. Only 15 percent live with a partner.One possible explanation is that many men and women conceal their condition from loved ones for fear of shame or rejection, whether real or imagined. AIDS- and HIV- related stigma and discrimination refer to intolerance, negative feelings, abuse and mistreatment directed at people living with either disease. This can result in being rejected by family, peers and the wider community; inferior treatment in healthcare and education situations; psychological deterioration; and can negatively impact testing and treatment. The lack of any social or family support increases the chances of requiring expensive outside care, such as home health aides or nursing homes, as HIV patients age.

Many older Americans with HIV are still sexually active, though, and should continue to practice safe sex. While 57 percent of older Americans with HIV said they revealed their HIV status to sexual partners, about 16 percent admitted that they didn't, the report found.

HIV treatment has come a long way in the past 25 years. Today, people with HIV can live long, relatively healthy lives. HIV treatment must now focus on controlling the virus as well as dealing with other health problems that can come with living longer with HIV (such as high blood pressure or diabetes-i.e. normal diseases of aging) and helping people have the best possible overall health. With the right treatment, anyone suffering from HIV can lead a full and long life. Living, and living well, with HIV means understanding all you can about your disease and treatment.

Nancy Travers, a Licensed Clinical Social Worker, specializes in all types of relationships; dating, existing relationships, family relationships, and relationships with friends and business relationships. She also helps her clients overcome anxiety and depression through talk therapy as well as through hypnosis. What sets her apart from many other counselors is that she has counseled in the gay/lesbian community for over 10 years. She also has experience counseling families with elder care issues. Nancy has been in practice for over 15 years and can provide you with the tools you need to approach dating and relationships with confidence. Visit her website at http://www.nancyscounselingcorner.com.

http://hivsymptom.blogspot.com/2011/06/living-with-hiv-for-older-americans.html

Can Neuropathic Pain Prematurely Age the Brain

Another interesting article from conquerchiari.org (see link below) talks about the long term effect of chronic pain on the brain. Logical really but not something which we normally think of first when considering neuropathy side effects. The fact that long-term HIV-patients are often confronted with brain-aging, related diseases, is a little disconcerting when you realise that consistent neuropathic pain may just be enabling that process a little more. Yet another thing to discuss with your HIV-specialist, especially if you are beginning to notice changes in your own brain behaviour.

Chronic Pain Is Hard On The Brain...
--Rick Labuda

Chronic pain prematurely ages the brain. That was the most significant - and disturbing - finding of a group of researchers from Northwestern University. Scientists have known for some time that chronic pain alters neurons in the spine, but Dr. Apkarian, a neuroscience researcher, and his colleagues wanted to know if and how chronic pain effected the structure of the brain.

In order to study this, Dr. Apkarian and his team used MRI's to measure the volume and density of the brains of 26 people with chronic back pain (CBP) and compared them to the brains of 26 healthy volunteers. They published their results in the November 17, 2004 issue of the Journal of Neuroscience.

Each of the 26 members of the pain group had experienced unrelenting pain for more than a year in their lower back. In some, the pain radiated down into the legs, in others it didn't. In addition to the brain MRI's the CBP subjects reported their pain intensity and how long they had been in pain. To aid in the analysis, members of the pain group were also classified as having neuropathic pain - due to nerve damage - or non-neuropathic pain. The 26 volunteers that composed the control group were recruited to match the age and gender makeup of the CBP group as closely as possible.

The researchers used two different techniques to measure the volume of the neocortical gray matter (the part of the brain responsible for most higher order functions) from the MRI's. They found that overall, the subjects in the pain group had 5%-11% less gray matter volume than the control subjects, a statistically significant finding. People normally lose about 0.5% of their gray matter each year as they age, so this result translates to the pain patients experiencing 10-20 years of aging compared to the control group.

In looking at neuropathic versus non-neuropathic pain, the team found that in the neuropathic pain group, the volume loss was related to pain duration. In fact, in the neuropathic group, each year of pain equated to a 0.2% loss in gray matter (1.3cm3). In the non-neuropathic group, pain duration was not related to volume loss.

The neuropathic pain group also fared worse when the team measured the density of the gray matter in specific regions of the brain. In the prefrontal cortex - responsible for high level functions - they found that people in neuropathic pain had gray matter that was 27% less dense than the control group, and people with non-neuropathic pain had gray matter that was 14% less dense. They also found that the thalamus - a region of the brain which relays pain and other sensations - was significantly less dense in the pain group as compared to the control group.

Although this study can not prove it conclusively, the authors believe the results mean that the chronic back pain is causing brain tissue to atrophy in certain areas. If proven to be true, this would mean that chronic pain not only alters the neurons of the spine, but has a structural effect all the way to the brain as well. While it is a significant finding, it is also important to keep in mind that this study looked at chronic back pain specifically and the results may be different for other types of chronic pain.

Still, with millions of people in the US alone suffering from chronic pain, and with neuropathic pain an all too common problem for CM/SM patients, this area of research is definitely worth paying attention to..

--Rick Labuda

http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203(1)/Chronic%20Pain%20Brain%203(1).asp

Mindfulness The New Age Pain Relief For The Consumerist

Today's post from nytimes.com (see link below) is one the cynics among you will love! More and more people living with chronic pain such as neuropathy, are turning to so-called 'mindfulness' to try to mentally ease their pain and other symptoms but how much is hype, aimed to part you from your money and how much has genuine potential? Unfortunately, the market has got hold of mindfulness and this excellent article shows what happens then.

The Hidden Price of Mindfulness Inc. By DAVID GELLES MARCH 19, 2016

THE other morning, I woke up and brewed a cup of Mindful Lotus tea ($6 for 20 bags). On the subway, I loaded the Headspace app on my iPhone and followed a guided mindfulness exercise ($13 a month for premium content). Later in the day, I dropped by Mndfl, a meditation studio in Greenwich Village ($20 for a 45-minute class).

These days it seems as if everyone is peddling mindfulness, a popular form of meditation. The Golden State Warriors, the Seattle Seahawks and the Boston Red Sox are now practicing mindfulness in the locker room. After Google began teaching the practice to its employees, stuffy companies like McKinsey and BlackRock started doing the same.

Consumer offerings are prolific, too. There are more than two dozen mindfulness apps for smartphones, some offering $400 lifetime subscriptions. The Great Courses has two mindfulness packages, each with a couple of dozen DVDs for $250. For an enterprising contemplative, it’s never been easier to make a buck.

On the face of it, that should be good news all around. After all, where’s the harm in having folks slow down, get in touch with their feelings and be kind? As a sporadic meditator myself, I know firsthand that mindfulness can relieve stress, improve focus and promote well-being. And during this charged election season, couldn’t we all use a bit more peace, love and understanding?

But with so many cashing in on the meditation craze, it’s hard not to wonder whether something essential is being lost. If mindfulness can be bought as easily as a pair of Lululemon yoga pants, can it truly be a transformative practice that eases the troubled mind? It’s a question as slippery as a Zen koan.

There’s no doubt that as mindfulness has gone mainstream, plenty of people have used the technique to achieve peace of mind, greater self-awareness, perhaps even more compassion. Yet at the same time, a race to the bottom seems to be underway.

Never mind all the companies glomming on to the “mindful” moniker. (There are Mindful Meats, Mindful Mints and the Mindful Supply Company, which makes T-shirts. A friend recently painted her daughter’s bedroom “Mindful Gray.”) More troubling is the rush to make mindfulness something that fits neatly into lives lived at the speed of the web. 

Increasingly, mindfulness is being packaged as a one-minute reprieve, an interlude between checking Instagram and starting the next episode of “House of Cards.” One company proclaims it has found the “minimum effective dose” of meditation that will change your life. On Amazon, you can pick up “One-Minute Mindfulness: 50 Simple Ways to Find Peace, Clarity, and New Possibilities in a Stressed-Out World.” Dubious courses promise to help people “master mindfulness” in a few weeks.

IBISWorld, a research company, estimates that meditation-related businesses in the United States last year generated $984 million in revenue. With so many mindful goods and services for sale, it can be easy to forget that mindfulness is a quality of being, not a piece of merchandise.

“It’s not enough to purchase the right product to be mindful,” said Dan Harris, an ABC news anchor who chronicled his grudging embrace of meditation in a book, “10 Percent Happier.” “Mindfulness is a practice, and it’s worth doing.”

That is, you can’t simply buy mindfulness. In its historical context, mindfulness is just one aspect of a lifelong journey to become more accepting, less judgmental and kinder to oneself and others. Even in its modern incarnation, mindfulness is best understood as a skill, one acquired through hours of sometimes uncomfortable contemplation.

Alas, that may be asking too much in an age of crash diets and instant abs.

When considering the fate of mindfulness in the American marketplace, it’s instructive to look at the evolution of yoga. Like mindfulness, yoga has its roots in the spiritual traditions of India, and was practiced for decades by enthusiasts before it went mainstream. But as yoga grew more popular, it mutated in strange ways. Today there is naked yoga, paddleboard yoga, and doga — that is, yoga done while holding your dog. Yoga also became a multibillion-dollar business, spawning apparel companies like Lululemon, a vast cottage industry of studios and teacher trainings, and a kaleidoscope of yogi bric-a-brac.

Kaitlin Quistgaard chronicled yoga’s often bizarre ascendance as the former editor of Yoga Journal. She said that while purists sometimes wrung their hands about its commercialization, their lamentations were in vain. Let loose in the American marketplace, yoga took on a life of its own. Now, she said, the same thing is happening with mindfulness.

“No one gets to decide who can sell mindfulness, or use mindfulness to sell a product,” said Ms. Quistgaard.

Though this may result in less signal and more noise, it doesn’t mean mindfulness can’t still be beneficial. Yoga may have changed over the years, but plenty of authentic teachers and ashrams can still be found. The same dynamic will most likely play out with mindfulness, too. Strange variations on mindfulness will proliferate, while pockets of traditional teachings endure.

Even seemingly superficial interventions can be useful, or at least benign. Joe Burton, chief executive of Whil, which offers a popular meditation app, is adamant that just because mindfulness is streaming online at ever-higher price points, that doesn’t make it ineffective or inauthentic. “No one can come do our training being a greedy, selfish jerk and expect to become a better greedy, selfish jerk,” he said.

He’s probably right. In recent years, I’ve interviewed hundreds of meditators, and many entrepreneurs behind Mindfulness Inc. To be sure, some seemed more interested in cruising the blossoming meditation social circuit than in actually doing the hard work of self-reflection.

More often than not, however, the people I know who take time to meditate — carefully observing thoughts, emotions and sensations — are sincere in their aspirations to become less stressed, more accepting and at least a little happier.

And still, temptations to indulge in spiritual materialism abound. On a recent trip to Whole Foods, near the kombucha, I came across a new product from the health food maker Earth Balance: a dairy-free mayonnaise substitute called Mindful Mayo ($4.50 a jar). Then, in line, I picked up a copy of Mindful magazine ($6).

I paid for both and headed for the exit. There’s nothing wrong with buying products labeled mindful. We live in a consumerist culture, and I’d rather spend my money on health food and self-help guides than junk food and gossip rags.

But when I got home, I resolved to do more than simply support mindfulness with my wallet. I found a quiet moment, put away my iPhone, and closed my eyes to meditate. It’s not enough to buy into mindfulness. You have to practice it, too.

Correction: April 3, 2016

A news analysis on March 20 about mindfulness misstated the rate for a meditation class at Mndfl, aNew York studio. It is $20 for a 45-minute class, not for a 30-minute class.

David Gelles is a reporter for The New York Times and the author of “Mindful Work: How Meditation Is Changing Business from the Inside Out.”

http://www.nytimes.com/2016/03/20/opinion/sunday/the-hidden-price-of-mindfulness-inc.html