When country crooner Clay Walker got a multiple sclerosis (MS) diagnosis, his doctor said he wouldn’t survive. Now, 19 years later, he’s managing with treatment, lifestyle choices and his wife’s support. Find out his secrets to staying healthy with symptoms of multiple sclerosis…
In country music star Clay Walker’s household, managing his symptoms of multiple sclerosis is a family affair.
Walker, an award-winning singer with hits like “Rumor Has It” and “Fall,” was diagnosed with multiple sclerosis in 1996. But with encouragement – and even a little nagging – from his wife and caregiver, Jessica, he manages to stay on top of the debilitating neurological condition.
“Having a person beside you is very valuable psychologically,” says Walker, 46. “I don’t feel that I would be doing as well, had I not had the love, care, support and patience from someone like Jess.”
Jessica keeps him motivated to manage his symptoms of multiple sclerosis, Walker tells Lifescript.
“I can see when her first thought is, ‘Have you exercised today?’” he says. “I see this relief come over her, just knowing that I did that much.”
Caregivers play an important role in helping patients manage multiple sclerosis, an autoimmune disease that damages the fatty myelin sheaths surrounding the axons – or fibers – of brain and spinal cord cells.
Once these cells are injured, they can’t communicate properly, explains Nancy Sicotte, M.D., director of the Multiple Sclerosis Program and the Neurology Residency Training Program at Cedars-Sinai Medical Center in Los Angeles. That triggers neurological symptoms, such as numbness and blurry vision, as well as physical and cognitive disabilities such as improper balance and speech.
Clay: We were in extreme cold weather in the Rocky Mountains in Calgary, Alberta, and had been outside snowmobiling. [We] came in to play basketball, [and] I remember walking into the gym, [thinking], My legs feel like they’re asleep – like I couldn’t wake them up.
[Then], I started tripping and falling down, and lost my coordination. My equilibrium seemed to be very off, and I started developing double vision. That was the scariest thing. [When] I fell on the floor in the basketball game, I knew something was definitely not right.
[Later] I developed a spasm on the right side of my face that lasted eight weeks. I couldn’t hold a guitar pick between my thumb and forefinger, and had hardly any mobility in my legs. I thought I had a pinched nerve in my neck.
I can tell you from experience: Do not self-diagnose. When you have something going on – anything neurologically – get that checked as soon as possible. You have a much better chance of managing the disease if you know about it quickly.
Clay: They told me that in four years I’d be in a wheelchair and, in eight years, ‘most likely be facing death.’ But that wasn’t the case. I immediately started trying to find a therapy.The doctor gave you a death sentence?
Clay: To his credit, when I was diagnosed [with symptoms of multiple sclerosis], there wasn’t a lot of data to show that we could do anything. There weren’t many medications, and a lot of information showed rapid decline [in health].At that time, if you had relapsing/remitting, after seven years you were automatically put in the secondary progressive category [a more progressive form of MS] – which means you were going to be in a wheelchair.
What’s changed since then?
Clay: These days, there are about nine medications [available]. I fortunately found one that really worked for me and helped me manage this disease. Looking back to where we were, and where we are now, [there’s] a big difference.
Clay: You have a chance of relapsing and then it going into remission. I haven’t had a relapse in 15 years. [But] I don’t know how Jess dealt with the fear and wondering.Jessica, how do you cope with the uncertainty about the future and whether Clay could have a relapse of his symptoms of multiple sclerosis?
Jessica: I’m not afraid – nor do we think about it every day. There are good and bad days, just like in everyone’s life.When we met [in 2005], I knew that this was something we’d focus on daily. By keeping up our daily routine, I feel we’re doing everything we can to keep him healthy. We really try to maintain our [positive] attitude, and it seems to help us a lot.
How can you both be so proactive and positive in dealing with the symptoms of multiple sclerosis?
Clay: When Jess got in this with me seven years ago, I think she had some idea – but not totally – of what she was taking on. She did research on the Internet and found out everything she could about MS.
Once she made the commitment to dive in – a leap of faith to be with me – she dug her heels in, and she has been a blessing and godsend as a caregiver.
Jessica: On our website, we have the Share How You Care campaign, where you can read our story [as well as] other people’s stories.That has also helped me a lot – just communicating with other people, hearing what they have to say. I think it’s a two-way street.
How does that help you manage symptoms of multiple sclerosis?
Clay: Being able to speak about MS and share our story helps us feel good.
There are stories of debilitation, especially with MS. [Many] people don’t have the simple answers that they wish they had, and some find some solace in seeing someone like Jess and me share [our struggles].
Anytime you’re dealing with a debilitating disease, there’s always a little fear that comes along with it.
Clay: I live with multiple sclerosis, and other people are living with other diseases. But the caregivers can’t [experience it directly], so they have more anxiety than even we [patients] have.The best thing we can do is to recognize [a caretaker’s] efforts in trying to care for us, and do our part.How has caring for Clay affected your life, Jessica? Describe a typical day for you when Clay isn’t feeling 100%.
Jessica: He’s stubborn sometimes, and if he’s having a ‘lazy day,’ it gets a bit difficult.
I try my best to be positive, but that’s not always easy. We have [3 young children], and there are days when they’re going crazy. If things are happening with Clay on top of that, it can get really difficult. On days like those, I hope he’s doing his part [to take care of himself] – that lifts a lot of pressure off me.
Talking to other people helps me too. I’ll call someone I consider a support system and maybe vent to them.
Also, if I can go exercise for maybe 20 minutes, or do something for myself – just 20 minutes of being alone and able to escape – that also helps
.Why do you call the bad days ‘lazy days’?
How did Jessica learn to motivate you to take care of yourself?
Clay: When she quit feeling sorry for me, that’s when she got good – or better – at motivation.
People who have chronic illnesses tend to weasel out of exercise or doing what they need to do.
[For example], with eating [the wrong foods], she finally cornered me and said, ‘No more of that. I’ve already talked to enough people and know what’s going on with you, and you’re going to do this, this and this.’
Jessica: A healthy diet and exercise really helps us out. We even tell our children this: ‘If you do good things, then you feel good’ – and we use that in our lives too.
Clay: My daughter [Mary] knows that I take my shot [of an immune-stimulating medication] every day. She also knows that her mother will stand there while I take this shot to, number 1, make sure I’m taking it and, number 2, to say, ‘I love you. I love you, I love you.’ My little girl will say it along with her now.My son [William] is just rough and tough. He’s like, ‘Get over it!’It’s a family effort, though. The best thing any person living with a chronic illness [can do] is to do your part. When you do, you take as much stress off them as you possibly can.
Whenever you start making strides – quit worrying so much about the actual illness and start making some healthy choices – pieces start to come together.
How have your fans reacted since you revealed your MS diagnosis?
Jessica: People are thankful because they think that we’re an inspiration, but what they don’t know is they’re also an inspiration to us.
Clay: Jess is a very shy person. Whenever you talk about something this personal, it’s not easy. It has taken a lot of years of dealing with this illness to be able to talk about it this openly and clearly.
I’m proud of Jess for being the caregiver that she is. And I’m very honored to honor her, along with all the many caregivers out there.
A balanced lifestyle means that no aspect of life overshadows the others. Health, career and relationships are all important and need to be maintained. Are you maintaining a balanced lifestyle, or is one aspect of your life taking over the rest? Take this quiz and find out!