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Raising Hope: After a neurologic diagnosis, some people get stuck in despair while others find a way to move on. Try these strategies to rebuild your life.

Paturel, Amy

doi: 10.1097/01.NNN.0000475908.92824.61
Departments: Living Well

At 23 years old, Kevin Pearce was one of the best snowboarders in the world. He earned a fortune in sponsorships and endorsements and was a favorite to win a spot on the 2010 Olympic team. But on December 31, 2009, while performing a cab double cork (a challenging aerial spin) in the half pipe during a training run in Park City, UT, Pearce slammed face first into the snow and sustained a life-altering injury.

To reduce the lethal swelling in his brain and allow it to heal, Pearce was put into a medically induced coma for 10 days. As he was brought back to consciousness, his family anxiously awaited his prognosis. Doctors had warned the family that Pearce might not be able to walk or recognize them.

Pearce escaped paralysis and was able to recognize his family, but he needed to relearn how to walk and talk. His traumatic brain injury also affected his memory, vision, concentration, coordination, and, most profoundly, his sense of self.

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THE ROAD TO RECOVERY

Each year, millions of Americans confront similar difficulties when they or their relatives or friends receive a devastating neurologic diagnosis. For some, the cognitive hit is instantaneous. For others, it's progressive. Still others experience flare-ups in their condition between periods of wellness. The resulting confusion and uncertainty can be paralyzing.

Regardless of the disease or injury, the challenge is the same: how to rebuild your life. The future may look grim—days consumed with sickness, discomfort, and disability. Yet your hopes, dreams, and aspirations may remain the same, says Richard C. Senelick, MD, a neurologist and medical director of the HealthSouth Rehabilitation Institute of San Antonio in Texas. The trick, he says, is reconciling the two.

The path to renewal may be difficult and punctuated by setbacks, but the rewards of a new life are worth it, according to people who've made the journey or helped others through it. We asked them for their best advice.

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PROCESS NEGATIVE EMOTIONS

In the wake of a new diagnosis, it's normal to feel angry or sad, lost or frustrated. The life you've planned—or the one you already had—may seem like a fantasy, as you're plunged into a precarious future. Before you can move forward, you need to acknowledge and process those difficult feelings. Lean on family and friends. Share with your doctor. Seek out counseling.

When Jimmie Wolf was diagnosed with multiple sclerosis (MS) in college and three more progressive disorders over the next few years, she “went through every painful emotion imaginable—fear, anger, sadness, regret,” she says. “When I got into my funk, I asked, ‘Why me, and why at such a young age?'”

Reactions like Wolf's are common after a neurologic diagnosis, says Daniel Potts, MD, FAAN, an attending neurologist at the Tuscaloosa VA Medical Center and an Affiliate of the Alabama Research Institute on Aging at the University of Alabama. “We have to support patients while giving them space to grieve the loss of health and wellness.”

If your doctor is unsupportive or negative, seek out a more sympathetic and caring physician. Not all doctors are equipped to guide their patients through grief to acceptance and reinvention, says Dr. Senelick. To find an appropriate fit, reach out to disease-specific associations and organizations, ask other patients for referrals, and search through condition-specific online chat groups and support forums, suggests Dr. Potts.

CRASH COURSE

CRASH COURSE

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BEWARE OF DENIAL

Some neurologic conditions like traumatic brain injury (TBI) and Alzheimer's disease can affect people's ability to assess their new reality accurately. When Pearce regained consciousness, he wanted to return to training immediately so he could qualify for the Olympics. “I didn't realize I couldn't even walk,” he says.

Pearce's family didn't completely squash his denial. “We weren't going to tell Kevin he would never snowboard again, but we had to convince him to go into it gradually,” says Pearce's brother, Adam. That measure of hope fueled Pearce's recovery. He was able to tap into the same discipline, spirit, and motivation that catapulted him to the top of the snowboarding circuit.

People with dementia and Alzheimer's disease are also vulnerable to denial because symptoms develop slowly. Missing appointments or forgetting important dates are seen as “normal” signs of aging that can be easy to dismiss.

And family members can perpetuate the denial, says Dr. Potts. He himself failed to recognize some of the early symptoms of Alzheimer's in his father. The senior Potts worked as a valet at a medical office building when he began locking keys in cars, forgetting where he parked them, and wandering around the deck confused about where he was. He told no one about these frequent hiccups. It wasn't until a colleague told Dr. Potts that his father was having problems at work that he allowed himself to believe his father might have the disease.

“My father was seemingly larger than life, and I was trying to reconcile that with the shell of a person I saw in front of me,” says Dr. Potts.

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CONFIRM A DIAGNOSIS

Avoiding doctors and ignoring symptoms are both part of denial, but even though it may be painful to hear a diagnosis, it almost always opens the door to healing, especially if you have a rare degenerative disorder.

“Even when I explain that a condition has no cure, that only 30 to 40 percent of patients can be treated, people feel a sense of relief—not about the diagnosis, but that their symptoms are not all in their head,” says Kamal Raymond Chémali, MD, an associate professor of clinical neurology at the Eastern Virginia Medical School and director of the Neuromuscular and Autonomic Center and the Music and Medicine Center at Sentara Healthcare in Woodbridge, VA.

That was true for Wolf, who started getting migraines following a neck injury during childhood. By the time she was in high school, the head pain became so debilitating she couldn't take care of herself. In college, she experienced severe joint pain, fatigue, and visual distortion. She was eventually diagnosed with MS. But even MS couldn't explain all her symptoms. Additional testing revealed she had lupus, a chronic autoimmune disease that damages the skin, joints, and organs, and Sjögren's syndrome, an autoimmune condition in which white blood cells attack moisture-producing glands. Two years later, she was diagnosed with Irlen syndrome, a disorder in which the brain has trouble processing visual information, resulting in eye strain, fatigue, and difficulty with reading comprehension.

Knowing her symptoms were connected to a real disease (or, in her case, several diseases) gave Wolf some relief and a game plan. She began educating herself and setting goals. A severe MS attack in 2011 that left her temporarily paralyzed from the neck down sharpened her resolve to improve her overall health.

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AIM FOR ACCEPTANCE

Clearing out negative emotions, letting go of denial, and confirming a diagnosis puts you several steps closer to acceptance. And the sooner you accept your diagnosis, the sooner you can create a satisfying life, says Dr. Potts—even if it's different from the one you had before.

Acceptance can also put an end to the nagging questions—the “what-ifs, why mes, and if-onlys”—and allow you to consider what's next. That helped Wolf. “I finally started asking, ‘Why not me?'” she says. “Everyone gets dealt a hand of cards in life. I can choose to fixate on the things that have been taken from me, or I can live the best life I possibly can with the cards I've been dealt.”

For Pearce, acceptance was all about conserving resources. Releasing negative thoughts allowed him to channel that energy into healing his brain, he says.

FIT FOR LIFE

FIT FOR LIFE

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CULTIVATE ALLIES

Managing a chronic degenerative disease or recovering from a sudden life-changing brain or spinal cord injury is a complex process that requires a team of supporters and people who will hold you accountable. Weed out the naysayers, even if they are medical personnel. “Doctors and nurses consistently predict worse outcomes than what patients achieve,” says Dr. Senelick.

And studies confirm that physicians' thoughts and beliefs and what they communicate about a person's ability to get well can affect outcomes. That's why Kristen Dams-O'Connor, PhD, an associate professor and co-director of the Brain Injury Research Center at the Icahn School of Medicine at Mount Sinai in New York, doesn't forecast for her patients.

“You won't hear me say to a patient, ‘You'll never do x, y, or z.' Some clinicians feel those statements facilitate acceptance, but I don't think it's necessary. Instead, I share my concerns and say, ‘I would love to help you prove me wrong,'” she says.

To achieve her goals, Wolf sought out a neurologist, a rheumatologist, a chiropractor, a nutritionist, and a personal trainer. To help her stay focused on exercise after ballooning to 200 pounds, she reached out to a group of women who also wanted to lose weight and were managing similar chronic conditions. “With the help of my medical team and motivation from fitness competitions, I was able to drop 80 pounds,” says Wolf. She credits her improved nutrition, healthy lifestyle changes, weight loss, and positive attitude with reducing her flare-ups. “For more than 10 years I had exacerbations every three or four months. Now I have had only one in the last three years.”

Pearce, too, sought out professionals supportive of his goal to regain full brain function. Every few months he spends 10 hours a day for five days at a center in Oregon, working with doctors to strengthen areas of his brain damaged by his injury, especially as they relate to his vision and his sense of himself in space.

ON TOP OF THE WORLD

ON TOP OF THE WORLD

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TAP IN TO YOUR BRAIN

Scientists originally thought that we were born with a fixed number of neurons, and that if we lost them to disease, aging, or destructive habits, they were gone forever. Now they're learning that brain cells constantly regenerate, says Dr. Chémali.

“It's not uncommon that a person [with a TBI] will come to me years later and ask, ‘Has too much time passed? Am I going to get any better?'” says Dr. Dams-O'Connor. “Very confidently I can say there is rarely any point at which further recovery is not possible.”

For people with degenerative diseases, it's possible to recruit different parts of the brain to compensate for areas that are diminished or dysfunctional. When Dr. Potts' father became increasingly aggressive, disinhibited, and socially awkward, a volunteer at a senior care facility got him involved in watercolor painting. Creative arts can help people channel impulsive and aggressive feelings in more appropriate ways, says Dr. Potts.

For three years, the senior Potts painted more than 100 watercolors. “Painting gave him a new lease on life,” says Dr. Potts. “It kept his spirits up, improved his concentration, and calmed him down when he was anxious or afraid.”

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SET ATTAINABLE GOALS

Small, measurable goals are the way forward, says Dr. Dams-O'Connor. Taking things slowly allows you to build on success rather than rebuild after failure. “Rehab and recovery are more like a marathon than a sprint, and patients do best when they comply with restrictions at the outset,” she says.

Pearce had a tough time following that advice, at least initially. When he finally got back on his snowboard two years after his injury, the reality of his limitations came crashing down on him. “For a brief instant, I felt a rush of excitement. My brain was telling me everyone's management of my expectations had been misguided,” he recalls. But as soon as he began moving on the board, he could barely see. “I wasn't willing to live my life that way,” says Pearce. “The rush wasn't worth the risk of a second injury taking me out.”

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REINVENT YOURSELF

Once Pearce let go of returning to Olympic-level snowboarding, he was free to create a new life. In the six years since his injury, he's established the LoveYourBrain Foundation (http://loveyourbrain.com), a nonprofit dedicated to empowering, educating, and inspiring people affected by TBI. He has also become a powerful and inspiring motivational speaker. “I had to let go of my dream and who I was and realize the new me is more powerful, more impactful, and more helpful,” he says.

Before a spinal cord injury at age 25, Michael Tabata was an insurance broker who worked long hours and traveled to client meetings. After his injury, he decided to pursue a career where clients come to him. Seven years later, he manages his own law practice. “I had to get out of my comfort zone and not see my injury as a limitation,” says Tabata.

It didn't come easily or overnight. Tabata spent eight hours a day undergoing rehabilitation. He tapped into online resources to get the best wheelchair, learn what to expect when traveling, and find ways to adapt his chair so he could participate in activities on rough terrain with greater ease. “I didn't want to get stuck in a place where my wheelchair defined me,” he says. He has since skied Mount Hood and traveled to Mexico and Japan.

By reframing her outlook, Wolf transformed herself into a fitness model and actress. Now 39, she regularly competes in Muscle Mania competitions.

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PROTECT YOUR HEALTH

Wolf, Pearce, and Tabata agree that staying healthy helps them thrive. “Learning to listen to your body while still pushing yourself in the functional arena is critical,” says Tabata. “I learned I had to work harder than an able-bodied person to compensate for my deficits.”

In addition to the physical benefits, research consistently links exercise with neurologic health. A study published in the journal Neuroscience in 2011 reported that physical activity boosts brain function in regions associated with executive function, such as planning, scheduling, and working memory. Other studies have found that exercise increases the size of the hippocampus, the memory center of the brain.

“Even if you have severe disabilities, you can work with a therapist to identify activities you can do safely,” says Dr. Chémali. “Swimming, water jogging, and rowing are good examples. You can even exercise lying in bed if you have the right tools.”

For Wolf, the benefits are enormous. “The time I put into my health today helps me function better in all aspects of my life, including my job, relationships, productivity, and hobbies,” she says.

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EMBRACE YOUR NEW LIFE

When you're in the throes of a new diagnosis or a recent injury, you may find it hard to imagine anything positive ahead. But as you recognize that you are more than what your condition stole from you, you realize you're still worthy of love, dignity, and respect. Your new life becomes meaningful not in spite of your deficits but alongside them, says Dr. Dams-O'Connor.

“I'm a totally different person than I was before the crash because of how my brain has changed, but in no way am I less of a person,” says Pearce. “I can honestly say I wouldn't change my life today for the one I had before my injury.”

The 900 high school students who attended the Spectacular sports and leadership camp in Des Moines, IA, last summer, seemed to agree. After viewing The Crash Reel, a documentary about Pearce's snowboarding accident, the campers leapt to their feet when he took the stage. “They didn't know I was coming,” says Pearce. “I walked out and for about five minutes the kids went absolutely wild.”

That roaring applause hasn't stopped. And while it no longer happens on the heels of a death-defying trick, it's equally motivating, says Pearce, who continues to push for a full recovery. “It's not going to happen fast, and it's not going to be easy, but I believe if you love your brain anything is possible. Why wouldn't you believe in that?”

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Your Move-on Checklist

Living with a chronic neurologic condition can feel like body surfing in rough waters—just when you think you're safe, another wave takes you out. But it's never too late to develop new tools to navigate choppy seas. Consider this advice from our experts.

Talk It Out. For a fresh perspective and emotional comfort, share your feelings with family and friends. If you feel isolated, write down your thoughts in a journal, join a support group, or get connected online.

Get Help. There's no shame in asking for help, especially if you're feeling stuck. Seek assistance from a therapist, counselor, or clergy member.

Eat Well. Stick to a healthy, balanced diet, including lots of fresh vegetables and fruits, whole grains, fish, nuts, legumes, and a daily cup of green tea to maintain optimal energy and well-being.

Watch Your Meds. Each person reacts to drugs differently. Work with your doctor to determine the most effective dose for each medication you're taking—and be sure to watch for side effects and interactions with other drugs.

Stay Engaged. Connecting with others, especially those in similar situations, may help you feel less alone and stave off depression.

Enjoy the Moment. Making the most of each moment makes for a better life. “They won't all be good. There will be some terrible ones. But if you can stay in the moment and not be resentful, you'll do better,” says Daniel Potts, MD, FAAN, of the Tuscaloosa VA Medical Center.

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How Trauma Fuels Growth

Research suggests that experiencing trauma results in personal growth more often than it leads to psychological disorders.

The idea that suffering can lead to powerful transformation is at least as old as the ancient texts of tragedy and catharsis. Next to sobering statistics about the toll of neurologic injury, these may seem like sappy clichés. But in studies reviewing hundreds of trauma cases, researchers report that when people endure experiences that shake their world, they often gain profound insights. Psychologists have dubbed the phenomenon posttraumatic growth.

“Many patients, unclouded by their deficits, firmly believe their lives are better after a devastating diagnosis,” says Kristen Dams-O'Connor, PhD, of the Brain Injury Research Center at Icahn School of Medicine at Mount Sinai. Maybe they lived recklessly. Maybe they spent too much time working. Or maybe they just discovered their mortality. Whatever the reason, people can and do thrive after trauma.

Unlike resilience, posttraumatic growth isn't about bouncing back so much as finding and sticking with a new direction. And the payoff, says Dr. Dams-O'Connor, can be astonishing. Research shows that people who experience posttraumatic growth report a greater appreciation of life and personal strength, a positive shift in priorities, more intimate personal relationships, and spiritual renewal.

To ensure you grow from trauma rather than shrink from it, foster a sense of optimism, extraversion, and openness to new experience. Seek out situations you may find enjoyable and rewarding, even if you have to force yourself to get there, says Dr. Dams-O'Connor.

© 2015 American Academy of Neurology