Tackle MS with Positive Thought
Health Activist Nancy Davis Takes On Multiple Sclerosis
Fourteen years ago, a highly regarded doctor told Nancy Davis that she was lucky she could operate a remote control and that she didn’t have a brain tumor.
What she had was multiple sclerosis (MS), a progressive and degenerative neurological condition, and she didn’t feel that lucky. At the time, she was a 33-year-old mother of three trapped in a rapidly deteriorating marriage and recovering from a painful ski injury.
But that was then. Now, Davis, 47, the founder of The Nancy Davis Foundation for Multiple Sclerosis, remains an avid skier and tennis player, is a black belt in karate, an author, and just gave birth to twin girls. “I am not living up to a negative prognosis and I feel amazingly fortunate,” she tells WebMD.
Her secret? Positive thinking, education, and a steadfast determination to live her life to the fullest. This can-do philosophy is now the basis of Davis’ new book Lean on Me: 10 Powerful Steps to Moving Beyond Your Diagnosis and Taking Back Your Life. The book provides an easy-to-follow 10-step roadmap to accepting illness, facing fears, and thriving in the face of chronic disease.
From Concern to Courage
The Los Angeles-based jewelry designer’s diagnosis came shortly after she sustained a knee injury during a ski trip in Aspen, Colo. Days later, she felt numbness that spread from her fingers and hands to her abdomen. Her orthopaedist said these symptoms were not related to her knee and that she should consult a neurologist. Magnetic resonance imaging (MRI) revealed plaques on her brain and spinal cord, which are the hallmarks of MS.
Though exactly what causes it is unknown, MS is thought to be an autoimmune disease that affects the central nervous system (CNS), which comprises the brain, spinal cord, and nerves, including the optic nerves. A fatty tissue called myelin surrounds and protects the nerve fibers of the CNS, helping them conduct electrical impulses.
In MS, however, the myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Symptoms vary from person to person, but they can include abnormal fatigue, vision problems, loss of balance and muscle coordination, slurred speech, tremors, stiffness, or bladder problems.
Like Davis, most people with MS are diagnosed between the ages of 20 and 50. Worldwide, MS may affect 2.5 million individuals, according to statistics from the National Multiple Sclerosis Society.
What sets Davis, the daughter of the late oilman-turned-Hollywood-mogul Marvin Davis, apart from the fray is her attitude.
Sure, “my first reaction was to hide under my covers, cry, and feel sorry for myself,” she admits. But “people who do that don’t do well. The people who do well get really educated and don’t have time to be sick.”
Davis is definitely on to something with her philosophy, says Judith Orloff, MD, a professor of psychiatry at the University of California at Los Angeles and author of Positive Energy.
“As a psychiatrist and a physician, one of the most important factors in whether a person heals is their positive energy and sense of empowerment,” she tells WebMD. “Positive thinking primes our biochemistry so we are ready to heal.”
Start by letting it all out, she says. “Just scream wildly, cry, wail, and let every emotion out because it’s not realistic to be too Pollyannaish from the start,” she says. “The patients that do the best are the ones that are fighting for themselves with a positive attitude.”
And that is Davis. “You can always make a choice to make it better,” Davis says. “It’s easy to get depressed, and I am not saying you don’t have the right to feel sorry for yourself, but at the end of the day that’s not going to help you. If there are things you can do today to make the quality of your life better, there is no reason not to do them.”
Make Your Health Your Job
Making your health your job involves owning your diagnosis, becoming an expert on your disease, and finding the best doctor for you. Whether MS, Parkinson’s disease, cancer, or AIDS, “it’s about making the effort to really do your homework and learn every detail you can about your disease,” she says. “If you walk away, your fear level will go up, but if you deal with things head-on, have conversations with family members, friends, other patients, and make lists, you are going to feel a lot better. Get educated, ask questions, write everything down, and just sit down and take inventory of your life and realize that everything bad can have a good side.”
Education can be tricky, she says. “You need to stay up in the latest, but there is some strange information out there so you have to go to respectable sources.” In her book, she highlights reliable web sites for health information.
“Listen, learn, and don’t give into the negativity,” she says. “Look for the light at end of the tunnel and know you know their body better than anyone else and you have a right to a great life.”
While admitting this can be easier said than done, Davis says it’s important to be honest with yourself. “It’s about admitting you have a disease and not putting off going to a doctor,” she says.
“One doctor may not be as thoroughly educated on your disease as you think he is,” she says. “Medicine is so finite and specialized in different areas. It’s your job when you get diagnosed to become the expert on your disease.”
Always get a second opinion, she stresses. Also, she says, always bring someone to the doctor’s visits and the hospital with you. “It’s really important to have someone there for you because when you are sick you don’t hear things correctly. Sometimes, you always hear the best and sometimes you always hear the worst.”
For Davis, her support team comprises a variety of people. “Sometimes it’s my husband and sometimes it’s my few best friends who are always there for me,” she says.
Another helpful strategy about living with chronic illness is to always carry a medical identification card. “Every time I would go out at night, I would take my credit card, driver’s license, AAA card, and my insurance card, but I never had a card that said 'I am allergic to this,’ 'I have this,’ and/or 'If I die I want to be an organ donor,’” she says.
“You can’t speak for yourself in a medical crisis,” she says. “I think everyone should have one so that the emergency medical services know who to contact in case of an emergency.” Options include bracelets, pendants, and ID cards that can be customized with your specific health information.
Diagnosis as a Wake-Up Call
Another way to move forward after receiving a diagnosis of a chronic illness is to embrace change and face fear, she says. “Life before disease is a different story,” she says. “The things that mattered before don’t matter anymore. Nothing matters when you don’t have your health.”
Davis says her diagnosis made her turn her life inside out and upside down. She divorced her husband because he was “incredibly negative” and her deteriorating marriage was one of the biggest stressors in her life. Stress can exacerbate MS and other chronic diseases.
But she has now been remarried for 12 years to an extremely supportive man and recently gave birth to twin girls, Isabella and Miranda. Her oldest three sons, now ages 21, 23, and 25, are also extremely supportive.
“I didn’t set out to have MS. No one picks a disease, it picks you,” she says. But “MS gave me a very different level of appreciation. I took a lot of things for granted before MS; I didn’t realize how full my glass was.” Now, “when I get out of bed and put my feet on the ground and can feel them, I think, 'this is unbelievable. I am really lucky at least for today.’”
Meeting Flares Head-On
MS tends to involve periods of low to no disease activity known as remissions and periods of exacerbations of disease called flares.
“The second I feel things coming on, I take charge very quickly,” Davis says. “I don’t kid myself and think things will just go away. You have to know your body. No doctor knows you as well as you know yourself, so you must take action as soon as something happened. Sometimes I sail along with no attacks for years and when I have one I am insulted, but it is a wake-up call, and it makes me realize if I am not good to myself, I am not good to anyone else.”
She says being good to herself involves leading a semi-puritan lifestyle.
“I believe the best thing that I do for myself is that I never drink or smoke; I don’t drink caffeine; I take lots of vitamins, exercise, and lead a healthy lifestyle,” she says. “I can’t afford to get a flu or a fever because it kicks off an attack that can last for five months. I get the proper amount of rest and try not to take on things I can’t handle.”
Luckily, she can handle a lot as Davis’ charitable work has raised $22 million for MS research. As the director of the The Nancy Davis Foundation for MS, Davis holds an annual Race to Erase MS gala, which raises more than $2.7 million in a single evening.
“Charity work is the most gratifying thing that I can do,” she says. “Giving people the ability to help find cures, educative themselves, [and] put them with the right doctor is the final step in making health come full circle.”
The 'Aha’ Moment
Davis also spearheads the Center Without Walls, a selected network of the nation’s top seven MS research centers, which supports collaboration on the cutting-edge of innovative research programs and therapeutic approaches to eradicate MS.
“When I was first diagnosed, I got many second opinions and I found that all these doctors were doing similar research, yet they thought they were the only ones doing it,” she says. “That’s when a lightbulb went off in my head.”
Her brainchild was the Center Without Walls. “We never spent money on mortar and bricks,” she says. “It’s all about doctors collaborating via a database so they never duplicate each other’s research.”
They also learn from what is going on in each other’s lab. For example, “maybe a drug is being given in doses that are too high or too low or has a terrible side effect if it’s given with something else,” she says. Such collaboration can nip such issues in the bud.
Work such as Davis’ has helped changed the landscape of treatment for MS. When she was first diagnosed, there were no treatments for MS. Now, there are five drugs to help reduce future disease activity. The FDA is currently considering reintroducing a sixth drug, Tysabri. The drug was pulled last year after it was linked to a rare brain disease that caused the death of two patients.
“For the person being diagnosed today, it is such a different landscape,” she says. “So much is happening and there are things to do to treat various symptoms. There has got to be a cure in my lifetime. I really feel it coming.”
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