Since the mid-1990s, Clay Walker has achieved an incredible amount of success as a country music artist. His songs have run to the top of the Billboard charts on six separate occasions. In all, he’s sung and songcrafted his way onto the Billboard singles chart 31 times during a stretch that has garnered four platinum albums and two others that hit gold. His latest album, She Won’t Be Lonely Long, released this past June, is off to a strong start, having hit number five on the top country album charts.
Through all of Walker’s commercial success over the past decade and a half, he has had to manage a disease that hit him suddenly in 1996 as he was fresh off of establishing a name for himself, a disease that affects hundreds of thousands of Americans. The country music star has multiple sclerosis. Like many others who were diagnosed during the dark days of the decade past, when the neurological disease was on few providers’ radar screens, Walker had his share of trouble acquiring a legitimate diagnosis.
“I was very concerned in the beginning because the doctor that diagnosed me, a neurosurgeon, told me that I’d be in a wheelchair in four years and probably dead in eight,” says Walker. It took him three doctors over a long span of time to find someone who could share enough information to provide him a level of medical ease of mind and start him off on the road to disease management. In the meantime, he started to conduct his own research and he found out more about the disease, its progression and possible treatments. But it was two years before he started on a formal regimen of daily injections (Walker takes Copaxone®, made by Teva Pharmaceuticals) to try to prevent his relapsing-remitting form of MS from affecting him further. To this day, Walker experiences few symptoms—most notably, stiffness in his right ankle, which his doctor feels immediate medication would have been prevented—and continues to lead an active and successful lifestyle.
“Fourteen years later I’m still walking around and riding horses and playing golf and doing physical things with my family,” he says. But this isn’t some one-in-a-million case study.
“I’m not an anomaly. I’m not some miracle,” he says. “There’s a lot of people like me who have had the disease for 10 years or more who are doing just fine.”
Active disease management, combined with strong caregiver support, have been vital elements in his route to success.
On the flip side, of course, are those who struggle with the management of their disease. There are some 400,000 people in the U.S. who are living with MS, according to the National Multiple Sclerosis Society (NMSS), with the prevalence rate affecting two to three more women than men. Of those 400,000, it is estimated that somewhere around half are receiving suboptimal disease management, or none at all. This could be because MS is an obscure disease, hewing to no known course, that follows an inscrutable and unpredictable progression. In addition, the treatment regimen historically has been arduous, centering around a handful of injectable medications. (Auspiciously, in June an FDA advisory committee recommended approval of Novartis’ fingolimod, which would become the first oral medication for the treatment of relapsing MS.)
Unlike other diseases that result or redound in a limited range of lifestyle inhibitions or functional restrictions, MS can have an impact on a wide breadth of patient outcomes, from cognitive states and emotional health to mobility needs and financial concerns. As part of an initiative to raise awareness about MS and to provide both patients and caregivers with educational resources, Walker formed the nonprofit organization Band Against MS in 2003. BAMS, as it’s known, organizes charity events to help fund research to eventually secure a cure for the disease. At the Third Annual Clay Walker Charity Classic, an event at Pebble Beach Golf Club in July, BAMS announced its donation of $50,000 to help fund research into pediatric MS at Stony Brook University Medical Center in New York. In another recent event, Walker held a benefit concert to raise funds for Vanderbilt University Medical Center in coordination with local radio station 98 WSIX and a group of other musicians, including Chuck Wicks, Lee Brice, SheDaisy and Chris Cagle. To date, BAMS’ efforts have raised more than $2 million for MS research and education.
“We wanted people to have a place to come where they realize, ‘I’m not the only one dealing with this,’” says Walker about BAMS. “Our mission also encompasses helping encourage people to find a treatment and take care of themselves.”
According to a report from NMSS, the most challenging issue that case mangers face when working with patients with MS is treatment adherence. “Other concerns they help patients manage are emotions, fatigue, costs of medications, cognitive changes, transportation, and limitations in activities of daily living,” according to The Multiple Sclerosis Trend Report: Perspectives from Managed Care, Providers, and Patients. Below we examine some of these areas of difficulty.
One of the challenges of determining whether a patient with MS is suffering from depression is being able to gauge the cause of the person’s physical symptoms. Some symptoms of depression, like fatigue and difficulty concentrating, are also signs of MS. In addition, certain therapies that treat MS, including beta-interferon medication, decrease levels of serotonin in the brain, which can affect mood.
Best-practice guidelines call for caregivers and providers to urge patients with MS to seek help immediately should signs of depression be present. MS is a complex disease that can cause stress from a multitude of angles.
Overcoming Cognitive Deficits
Approximately 10 percent of those with MS will experience serious cognitive difficulties, according to the Multiple Sclerosis International Foundation (MSIF). In some of the worst-case scenarios, dementia can occur in those suffering from MS long term. Perhaps more alarming are the rates of minor defects in cognition, which the MSIF estimates to affect 70 percent of patients. The first task of a care provider is to determine if a cognitive problem exists and to what extent it is present.
For patient with MS, according to MSIF, the following strategies can prove helpful in managing cognitive problems:
- Make lists. From shopping and reminders to action items and dates.
- Use a calendar. This will help patients keep track of appointments and other important days.
- Keep a “memory notebook.” This will keep track of events, reminders and communication with family and friends.
- Keep things familiar. Maintaining a familiar environment will help someone keep track of things.
- Talk in quiet. Having conversations in quiet areas will help limit distractions.
Putting Assistive Devices to Work
For those suffering from limitations of daily activities due to MS, assistive devices can help ease functions and mobility. The NMSS recommends several areas where these devices can help:
- Bathing and showering. Grab bars can help balance and promote independence.
- Grooming and dressing. Hooks on buttons and zippers can make them easier to use. Velcro can help with clothes and shoes. And regularly used products like combs and toothbrushes can take wider or more adaptable handles.
- Cooking and housekeeping. Electric devices like mechanical can openers and specially designed cookware can help those with limitations. For housekeeping, using a wheeled device for supplies will limit bending and lifting.
- Writing and reading. Vision is a top concern for MI patients, and special lenses or magnifying glasses can help. Also, special grips on pens can aid in writing.
- Mobility. If necessary, canes and walkers can assist those who need help moving around. In more extreme cases, wheelchairs and scooters are recommended.
- Driving. State-of-the-art driving aids, like hand controls and low-energy steering wheels, help those with limited ability.
Focusing on Prevention
Of course, the best way to circumvent the need for some of the measures above is to faithfully manage the disease from the time of diagnosis. Clay Walker continues to put out music as living proof of this roadmap to healthy living.
“This disease is not something to be taken lightly,” Walker says. “If you manage it, then I think you can take it lighter. And I do. I don’t want to seem arrogant in any way to the people who are suffering from this disease in a great way. I just want to encourage the ones who are not trying to manage it to do so.”
Walker visits his doctor every year for an annual exam to measure his progress and to see if the disease is resulting in any damage. Since the time he started his daily medication regimen 12 years ago, those yearly MRIs have returned an incredible image—they depict zero disease progression.
While Walker is steadfast in his commitment to his medication regime, in addition to eating well and staying in good overall health, he attributes a great parcel of his success to his most ardent supporter—his wife, Jessica. “The most important thing that happens to me is her encouragement to take my shot every day,” says Walker, who delivered a keynote presentation at the Fearless Caregiver Conference earlier this year in an event that celebrates the often unsung work of those who help patients navigate their health and healthcare.
“If she didn’t do that,” Walker says about his wife’s support, ”I probably wouldn’t take my shot every day. I want to give a lot of credit to the caregivers out there.”