A Different Normal

Peter Abaci, MD, is the Medical Director of the nationally recognized Bay Area Pain and Wellness Center, located in Los Gatos, California. A widely respected expert on chronic pain management and a highly successful chronic pain sufferer, he is the author of Take Charge of Your Chronic Pain: The Latest Research, Cutting-Edge Tools, and Alternative Treatments for Feeling Better.

If you suffer from chronic pain, then you are now in the company of 116 million other Americans according to a recent report by the Institute of Medicine. This is by far the largest number that has been assigned to the chronic pain community since I started practicing some fifteen years ago, and with so many now affected this suggests that we are in the middle of a chronic pain epidemic. Chronic pain should now be considered one of the major chronic diseases of our modern society, along with things like heart disease and diabetes.

This brings me to the million dollar question of why? In other words, why is the incidence of chronic pain on the rise and now affecting so many people?

I think we can find some of the answers if we look carefully at the changes that have occurred in our society during this same time period. Such changes, spurred by the evolution of technology, have had a big impact on lifestyle behaviors. For starters, we move less and we move differently than our previous generations. Innovations like cars, computers, and cell phones mean more of us can live and work in a primarily sedentary fashion. As a result, we burn fewer calories each day and we don’t use many of the muscles that we used to need for survival resulting in wholesale changes to our bodies.

Computers were not a regular part of peoples’ lives until the 1990s. Our bodies were not made to sit and work on a keyboard all day long, yet that is precisely what many of us now do. This ultimately has a big impact on the muscles and joints that support our necks, shoulders, and backs, and at the same time requires very little input from our lower halves. This also requires us to be indoors more, which means more of us are now vitamin D deficient (also a risk factor for chronic pain).

Diets have also changed over the last few decades. We eat more processed foods containing products with high-fructose corn syrup and trans fats, while consuming less fruits, vegetables, and whole-grains. Such dietary changes mean consuming more harmful pro-inflammatory food products and an overall increase in calorie consumption compared to past generations.

The end result of all of these changes is that people are getting larger and larger. At one time, the obesity rate in the U.S. was relatively low, but it has recently shot up to 30% and is projected to hit 50% by 2030 according to a recent article in the Lancet. Even small increases in body weight can cause big increases in force exerted onto the spine and knee joints, and that translates into more degeneration and more pain. On top of that, abdominal fat cells have been found to increase the secretion of inflammatory mediators.

A number of recent studies have shown strong correlations between chronic pain and lifestyle factors like obesity and smoking. If people have been smoking for decades, then why would smoking all of a sudden be associated with chronic pain? I think this has to do with our increased longevity. Certain lifestyle habits may not have a big impact on how we feel in middle age, but could have a big impact on our quality of life as we grow older.

As more of us continue to live longer, it becomes imperative that we adopt strategies to diminish the impact pain can have on the quality of our lives. If we want to successfully fight this rise in chronic pain, then we need to look at how technological changes have directly led to lifestyle shifts and find ways to offset or counter-balance these changes so we can all have a better chance of feeling well at any age.

Pat Furlong is President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the US solely focused on Duchenne muscular dystrophy. She lost both of her sons to Duchenne but continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.  She was recently named a World Changer by The New Yorker and a 2010 WebMD Health Hero.

Did you ever play the game Chutes and Ladders? It’s a classic board game that involves navigating up chutes and avoiding ladders that drag you back down. Life is that way. A series of chutes and ladders.

My children absolutely loved this game. They were delighted when they slowly and carefully moved their game piece along the path, holding their breath as they escaped a fall. With one roll of the dice we all knew, we might be sent spiraling down into oblivion. The goal was to avoid the chutes. It’s not easy because there is no control of the dice.   The roll of the dice is random.

My children developed some techniques for luck. They would blow on the dice, kiss the dice, hold the dice up to their forehead trying to transfer positive thoughts or luck to the roll. But we knew. Whether it was luck or fate, one roll of the dice could change everything. It wasn’t exactly something you could plan for. It just happened. Life is the same, hardly a game, but filled with chutes and ladders.

The word Duchenne muscular dystrophy (Duchenne) walked in our home unannounced. It arrived the day my sons were born. We lived with it for some time, at times having hints of its presence – delays in motor function, complaints of ‘tired legs’, a strange way of running we once thought cute, falls, but we prepared excuses and went on with our peaceful existence.

And then one day, we could no longer avoid the obvious weakness.

Several physicians dismissed us as worried parents until we landed in the office of an orthopedic surgeon. He noticed the enlarged calf muscles — pseudohypertrophic, he called it. He watched the gait, asked each of them to sit on the floor and then, stand up. “Gowers’ maneuver,” he said to himself, but loud enough for us to hear.

I closed my eyes and felt our lives falling down the chute into oblivion.

Duchenne muscular dystrophy (Duchenne) knows no discrimination, affecting all races and all cultures uniformly. The genetic basis of Duchenne is well characterized. In fact, the Dystrophin gene was identified in 1986 and the protein product in 1987.  Ladder.

In the ’80s and ’90s, the CIDD (Clinical Investigators Duchenne Dystrophy) conducted trials, testing approved drugs.  All failed except prednisone, which increases strength but has significant side effects. Additional trials were conducted, testing drugs approved for other indications as well as supplements without significant results. Chutes.

In 2001, the MD-CARE Act was signed into law. The effect of this legislation has been monumental. In the last ten years, an estimated $200 million NIH dollars have been invested in muscular dystrophy and with it a, ripple effect throughout the community. Therapeutic nihilism (no hope and no help) diminished. Physicians joined parents in hope.

Twenty years of basic science into the pathology of Duchenne started paying off, yielding possibilities. Biotechs formed. Big pharma joined forces. Today, promising trials in antisense oligonucleotides (repairing the gene), muscle regulators (improving size and quality of muscle), protecting and preserving heart function (the heart is a muscle too!), and improvements in care have changed the landscape of Duchenne. The investment in Duchenne muscular dystrophy now exceeds $4 billion dollars. There is a partnership:  advocacy, academia (research and clinical), government, industry. Ladder.

Duchenne is now at the tipping point. People diagnosed with Duchenne and everyone who loves them are positive, hopeful. Trials are underway. Expectations are high. Duchenne is on the grid, each potential therapy moving forward systematically and carefully. Individuals and families learning about the process, drug development, outcomes research (how to measure benefit), and regulatory concerns. And the conversation has changed.

From hopeless to hopeful, from if to when, from then to now.

While the diagnosis continues to feel like a chute on life’s journey, there is a ladder under construction. And the conversation is changing – now it’s about access to care, new research, and ways to live a quality life in spite the Duchenne diagnosis. Ladder.

Richard C. Senelick, MD is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He is the Medical Director of HealthSouth RIOSA, The Rehabilitation Institute of San Antonio, and an associate clinical professor in the Department of Neurology at the University of Texas Health Science Center in San Antonio. He has authored several books on stroke, spinal cord injuries, and brain injuries. Dr. Senelick is an expert in the WebMD Stroke Community.

Did you go see the movie Tropic Thunder?  Have you rented the movie, There’s Something About Mary? Both movies have scenes that generate laughs at the expense of the disabled. It may seem like “nit picking,” but had a different minority been similarly stereotyped, the outcry would have been much louder.  The disabled are a minority who still have a significant barrier to overcome. People rarely understand the simple fact that the disabled have the same desires, dreams and aspirations of able-bodied people.

I work every day with people who have disabilities.  I am the medical director of a rehabilitation hospital where I am surrounded by patients with brain injuries, missing limbs, severe deformities and impairments. This is my “normal” environment— one in which I am totally at ease and comfortable.  In fact, I have been doing this for so many years that I frequently don’t notice the alarm or discomfort of first time visitors.

By virtue of this familiarity, the assumption is that I have either learned or intuitively know how to interact appropriately with someone with a disability. In my world, it is the rare occasion where someone actually receives criticism or a comment related to something they said or did while interacting with a disabled individual.  But, the wars in Iraq and Afghanistan have produced large numbers of “wounded warriors” who have no qualms telling us what they want and how they want to be treated.  While caring for these young men and women, it has become apparent that it is time to “test” our own disability awareness and examine whether we act in an appropriate manner.

The difficulty here is that many people are simply not aware that even though their intentions are good, their words can come across as patronizing or insensitive. Below are a couple of common missteps in our interactions with the disabled.  See if these ring true and whether you need to reassess your approach.

Greetings: It is second nature to offer your arm and shake the hand of someone you have just met.  However, I have seen many people hesitate to shake the hand of a disabled person out of fear that the person is paralyzed or missing a limb.   Greetings come in a wide variety these days, from a fist bump to a high five.  Extend an arm in greeting and an individual will respond.  However, do not invade their personal space by assuming you can rub a shoulder or pat a knee without permission. Even in our increasingly casual society, it is not acceptable to call someone honey, sweetie, baby, sugar or – my least favorite current greeting — “dude.” A few years ago, I was a patient in the hospital and an aide asked me, “How you doin’, dude?”  If not for my wife’s restraining “not now” stare, I would have come unglued.

“You are so courageous”: I recently spoke with a young woman who told me, “I always make sure to tell people with disabilities whom I meet how courageous they are.”  The definition of courage is, “the mental or moral strength to withstand danger, fear or difficulty.” Yes, a soldier’s courageous act may have resulted in their injury, but now, they may feel afraid, anxious and depressed, and need someone to acknowledge and empathize with these emotions. It is not helpful for us to tell them they are courageous, for that sets an expectation that they must check their emotions at the door and show an “expected” strength at a time when they are barely coping.

“It could have been worse”: Don’t tell a disabled person how “lucky” they are or that it could have been worse.  It diminishes the importance of the event or illness.  Statements like this come off as judgmental about the impact of the injury on that individual.  If you had a stroke that left you with the ability to walk but you still had a paralyzed arm, would you feel lucky?

“I know how you feel”: You should avoid the use of phrases such as, “I know how you feel” or, “I can imagine what it must feel like.”  Unless you have the same or similar disability, you do not know how they feel.  It is better to say, “I have never had to sit in your chair nor walk in your shoes.  I hope that I never have to, but I will be here to help you get through this difficult time.” Empathy without sympathy.  Assistance without patronization.

We recently watched moving memorials for those who died on September 11, 2001.  Ten years later we have tens of thousands of soldiers who have unfortunately joined the 5.6 million Americans who have to live in wheelchairs.   Will we honor their “new normal” with appropriate social interactions and greetings? You may say, “Of course, I will.”  But I challenge you to go a step further and become a disability etiquette educator.  Spread awareness among your co-workers, your associates and your family. And, from time to time, it never hurts to look in the mirror.

One Mom’s Creative Solutions for Her Limitations

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

Imagine being given a limit to how long you can lift and carry your baby.  What if you were restricted to lifting your child only until he/she reached 20 lbs? How would you manage the myriad of responsibilities that are part of caring for a toddler?

I’m all too familiar with this scenario, because I have Marfan syndrome. Marfan syndrome is a genetic disorder that affects the connective tissue: the glue that holds your body together. It can impact most major body systems, but particularly the cardiovascular system. In people with this condition, the aorta, the large artery that carries blood away from the heart, can grow to be too large and may develop weak spots that can lead to an  aneurysm or  tear (dissection). Limiting how much we lift decreases the work that the aorta has to do and therefore helps protect it.

I was diagnosed with Marfan when I was 8 years old, so I’ve known about my 20 lb limit for years. Prior to parenting, it was always pretty easy to manage. In school, I used a rolling backpack and had double sets of my textbooks so I never had to carry them. I came to terms with the fact that I’d never be a professional weightlifter (which, coincidentally, was never on my bucket list anyway). When my first son, M, was born, I realized I loved “baby-wearing.” As he got larger, I dreaded every pediatrician appointment, lest he hit the 20 lb limit. When at 12 months of age M finally did, I mourned the end of our baby-wearing days.

It was about that time that I became pregnant again. M was walking, but still needed to be lifted quite a bit. What to do? My husband, Mark, and I thought outside the box a bit.

We put a lot of emphasis on M being self-sufficient. He learned to get himself into the car at an early age. I do get him in and out of his high chair, but on days when my pain was bad due to the pregnancy, we had picnic lunches on paper plates in the living room: no lifting required! I bought a step ladder and used that to get M in and out of his crib.

Once Baby J was born, we purchased a toddler bed so we could retire the ladder. I still have a little changing station set up on the living room floor so I don’t need to lift either boy onto the changing table. Baby J will most likely hit 20 lbs before he starts walking. We plan to put our lightweight umbrella stroller to good use to take him to and from the car.

From the perspective of an outsider looking in, parenting with a weight lifting restriction might sound extremely limiting, but it’s not. Parenting with a chronic illness just requires a good dose of creativity at times. Networking with other parents in similar situations aides in problem solving as well. If you’re a parent with Marfan syndrome, you can start that networking via the National Marfan Foundation’s main website, as well as their social networking site NMF Connect.

Myrl Weinberg is president of the National Health Council (NHC), the only organization of its kind that brings together all segments of the health care community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. The NHC is made up of more than 100 national health-related organizations.

On behalf of the National Health Council (NHC), I would like to thank WebMD for providing this space for patients, their advocacy organizations, and various experts to share their thoughts and advice about living with chronic diseases and disabilities.

The NHC is a unique organization that brings together all segments of the health care community to provide a united voice for the more than 130 million people with chronic diseases and disabilities and their family caregivers.

We hope this new blog will give rise to a stronger patient voice with people and their family caregivers engaged as active participants in discussions and decisions about their health care. It is when an individual’s rights, preferences, and predicaments are heard, understood, and taken into consideration that we have health care that meets the unique needs of patients with chronic conditions.

To give you an example, think about the medicines that we take every day. A person living with a chronic disease and the average consumer are likely to have very different perspectives about the appropriate level of risk for taking medications.

Many people with chronic conditions are dependent on prescribed drugs to live better and healthier lives. These patients realize there may be side effects to taking their medications, but they often have a high tolerance for “riskier” drugs in order to better manage their daily lives. Consumers, on the other hand, pass in and out of the health care system depending on their day-to-day circumstances. Since they don’t rely on daily medicines, they have an understandably lower risk tolerance.

Shouldn’t there be a way to judge the benefit/risk of new drugs that acknowledges the different perspectives of patients and consumers? Such a decision-making process could consider how many people are living with a specific condition, the range of existing treatment alternatives (or lack of treatments) available to these individuals, and the potential impact the new drug may have on their quality of life.

Patients, better than most, understand that every person is different. A treatment plan that works for one person might not work for another. Life for someone with a chronic condition is a constant balancing act, and a person’s individual situation needs to be part of the health care conversation. Ultimately, who is to say how much a person is willing to risk in order to live a healthier life? Here are two websites that address the issue of benefit-risk and treatment options.

• Food and Drug Administration – Think It Through: Managing the Benefits and Risks of Medicines
• Agency for Healthcare Research and Quality – Explore Your Treatment Options

I’d be interested in your thoughts on this topic, and I look forward to reading the opinions of people with chronic diseases and disabilities and their family caregivers as we continue to grow this new blog.

Myrl Weinberg
President, National Health Council