Pain-Free Living

One2One: Interview with Wendy Booker

By Cheryl A. Rosenfeld

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Wendy Booker was an interior decorator and former teacher when she was diagnosed with Relapsing-Remitting Multiple Sclerosis in 1998 at age 44. Since then, she has run the Boston Marathon, climbed the seven summits of the world, including two attempts at Everest, mushed to the North Pole and skied to the South Pole. Now she has changed careers again, launching the Climb On! Foundation to educate, motivate and challenge newly diagnosed MS patients. She speaks at corporate conferences, schools, universities, fund-raisers and athletic events, both individually and as a National Ambassador for the National Multiple Sclerosis Society, tying her adventures to what it takes to face a challenge. She is facing her challenge head on.

PFL: How much did you know about Multiple Sclerosis prior to your diagnosis? What was your first reaction?

WB: I knew nothing about the illness. Like most of us with Multiple Sclerosis, I had many symptoms sporadically for 20 years before a diagnosis was made. It’s often a diagnosis of exclusion. And MS is different in everybody.

My story is similar to others’ stories. You know little pieces about MS. Your very first picture in your mind is of someone who has MS and doesn’t look very good. I thought of Annette Funicello, who at the time was not doing well.

Everyone thinks that way. Everyone starts from that spot. That’s where my advocacy work starts from. That is my mission—to change that perception.

The first three disease-modifying therapies came out in the 1990s—now there are 12, with many more in the pipeline. Those have been real game changers for MS. They reduce relapses, thereby slowing the progression.

Before then, there was nothing you could take. I came along just at that time—I’m the recipient of good medicine, good R&D, that has changed the face of MS. Now, when you hear that diagnosis, you don’t have to make that leap to a wheelchair, to total disability.

PFL: Were you athletic before your diagnosis? If not, what led to such a drastic lifestyle change?

WB: I was not an athletic person at all—in fact, I’m the least likely candidate to be doing what I do. Before MS, I did athletic activities only because we were told we had to, to stay healthy. I wasn’t dedicated.

My friend Carol and I actually were thrown out of our gym for talking too much during aerobics class. We started running, right around the time I was diagnosed. I blamed my symptoms on the running, but it was the MS. At the same time I was diagnosed with MS, Carol was diagnosed with breast cancer, almost to the day. It stops you in your tracks; it takes your breath away.

So we had each other. She called me and said, “Why don’t we run the Boston Marathon?” Both of us had something in our gut to push back; neither of us were runners. So this lifestyle change is her fault really.

I have been guided, directed by three principles: self-discovery, serendipity and stubbornness. When you are diagnosed with a chronic illness, you develop stubbornness. Serendipity is the good stuff that happens, the unexpected. Self-discovery is how we figure out who and what we are.

ABOVE: Wendy Booker on her North Pole expedition.

PFL: What led to the launch of the Climb On! Foundation?

WB: I was chatting with some physicians about 18 months ago, and I already had identified a real need for the newly diagnosed. They come home bogged down with literature, pamphlets and bags of stuff. Most are young women ages 20 to 40. They throw the stuff in the closet and don’t want to think about the prospect of taking medication for the rest of their lives. So they wait until their symptoms get worse.

The foundation aims to provide clarity in their first year based on their interests—to get them to learn what they need to know to get on a good therapy, to make a relationship with a good neurologist. And not just throw information at them.

The second part is scholarships for people who don’t have access to an MS center. The third part is to help the doctors who treat newly diagnosed patients, who work within insurance provider restraints and are not given the amount of time they need and want to spend with each patient.

I see Climb On! as the guide to all things MS, to give newly diagnosed patients choices, education and, most importantly, hope.

About 85% of MS patients are relapsing-remitting. I want them to know they can be like me. It’s all a matter of choice, of living smart. The other 15% are primary-progressive, who unfortunately go downhill very quickly. It’s almost a different illness. There used to be no medications for them; now there are three in the pipeline.

A few years ago I was speaking, and a woman in her sixties came in, dressed beautifully head to toe, in a wheelchair. She asked, “What can I do?” I said, “Write a blog, or a book, on how to stay elegant in a wheelchair.” Another woman asked me if she should do Kilimanjaro. She was unsure. I say, what’s the worst that can happen? You have to go home? You don’t make it to the top? Just by making it there you’re a winner.

PFL: How do you handle the flare-ups, the chronic pain, and not let it prevent you from reaching your goals?

 WB: It’s different for everybody. I’ve done very well. I had flare-ups twice on Everest.

In early diagnosis, you blame everything on MS, until you get confidence back in your body. With me, it takes me a minute to say: Is this MS, or am I getting old? It stays with you and lasts a few days. I haven’t had any new symptoms, but more aggravated symptoms that I already had. The medication to relieve flare-ups has side effects, so I want to make sure it’s really a flare-up. It’s something you have to evaluate. You have to have a really good relationship with your neurologist—you are with him for the rest of your life. You have to make sure he likes treating MS patients.

You want to make good choices and have good health. The people I know have done well with keeping the status quo. The therapies have done a lot to manage the illness.

Anecdotally, the first time I spoke publicly was in 2000 in Hartford, Connecticut, and about a third of the audience had an aggressive disability—a walker, a cane, a wheelchair. Now when I speak, less than 10% are highly disabled from the illness. People are managing their disease really well, because of the choices they have.

PFL: What advice would you give someone newly diagnosed with Multiple Sclerosis?

WB: Be careful what you read on the internet, and be careful what people tell you. You will be bombarded with information and misinformation. When I was diagnosed, I was told not to exercise or get overheated. I was told to maybe go into a pool with a Styrofoam noodle. Today, the sky’s the limit. Everybody’s out there. That’s exactly what we want.

You are going to get confused and probably close down. You just can’t stay there.

After seeing a general practitioner, or an eye doctor, most patients are referred to a neurologist, who makes a final diagnosis. You have to find the right neurologist. Hopefully you will get to an MS center and contact the MS Foundation or the MS Society. I’m trying to make that path clearer.

Why climb mountains? I always did it as a metaphor to what life with MS is like. Those mountains defined my purpose. I say, come climb with me. Your mountain is MS. What are you going to do with it?

And I always end with: The view from the top is incredible.

For more interviews with people who live life to the fullest despite chronic pain, subscribe to Pain-Free Living magazine by clicking here.

Last Reviewed 02/24/16

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