Jodie Hook

Jodie Hook

For five years, Jodie Hook's life was dominated by pain so severe that she often stayed in bed 20 hours a day. About a year and a half ago, Jodie was treated at the Pain Rehabilitation Center at Mayo Clinic in Rochester, Minn. There, she learned how to live a joyful, full life despite her pain. No more bed rest for Jodie.

"I live with chronic pain," says Jodie. "But the most important word in that sentence is 'live' not 'pain.'"

Today Jodie keeps busy organizing a support group, helping to run a hospitality house, spending time with her family, and using her talents and gifts to serve others. Jodie says, "I don't live regretting what I couldn't do yesterday. I don't worry about what I might not be able to do tomorrow. I'm too busy today to think of either."

Headaches All Her Life
Jodie has had chronic headaches all her life, but they got worse in recent years. She was diagnosed with Meniere's disease (an inner ear disorder) and Chiari malformation (a brain abnormality). She was also diagnosed with a genetic disorder that causes membranes in the spinal column to become fragile and leak cerebrospinal fluid intermittently. Bed rest was the only treatment that seemed to relieve her symptoms.

Jodie's physicians tried a number of experimental treatments to relieve her pain, including Botox injections to the face, neck, head, and shoulders. The goal was to interrupt the pain transmission from her nerve endings to her brain.

In July 2007, Jodie's neurologist, David Black, M.D., suggested she try the Mayo Pain Rehabilitation Center (PRC), which offers a program for patients with chronic pain. "Dr. Black wasn't sure if it would help me. But, he said I could try it and see," she says.

"The PRC helped me find ways to experience hope and joy each day."

The End of Bed Rest
The day before entering the three-week program at the Pain Rehabilitation Center, Jodie was still on bed rest. The first day of the program, "I could only ride the exercise bike for five minutes," Jodie says "For the first three days, I had severe pain." Then her condition began to stabilize. "At the end of three weeks, I could ride the exercise bike for 35 minutes. And I haven't returned to bed rest since. I was up on my feet when I got home. I was joyful and enthusiastic about life again."

"My son drew this picture two months after I completed the PRC program. Everyone is smiling. I'm on my feet and wearing a party hat!"

One week after Jodie completed the PRC program, her 7-year-old daughter said, "Mom, it's almost like you don't have pain anymore at all."

"The PRC helped me find ways to have hope and joy each day, and how to manage my pain in different situations," says Jodie.

"One thing the PRC taught was to not say I can't do something but to find a different way to do it so I can still experience life," she says. Once, instead of dancing and jumping with her kids, which aggravates her condition, Jodie sat on her piano bench kicking up her feet and "dancing" with the kids. They sat and joined her, laughing as their slippers flew off their feet. Or, she joins her family at the end of a bike ride with a picnic lunch. She can't ride with them, but she can participate in the picnic.

About the Pain Management Program, Jodie says, "If you cooperate with the program, you will improve. You may never be like you were before chronic pain, but you will improve your quality of life."

"If I could give one piece of advice to someone starting in the PRC, I would tell them, 'Go in being open to listening to and doing what the PRC staff say, even if it doesn't make any sense, even if pain feels worse. It gets better.'"

Support and Supporting
Jodie found the relationships she made with other patients in the PRC very helpful. "The support of other patients was crucial," she says. "I email at least one fellow patient daily, and we keep each other accountable."

Jodie and a friend, also a former PRC patient, decided to begin a Chronic Pain Anonymous support group in Rochester. It meets weekly, and includes a Web page and online discussion board, so patients who do not live in Rochester can still find support after they leave Mayo.

"In the PRC, they wanted me to find a goal, a way to use my talents," she says. "A friend and I had the idea of starting a hospitality house for Mayo patients needing extended medical treatment. We wanted it to be an affordable place where patients could heal with their families." They founded Serenity House in a residential neighborhood in Rochester.

"I went through a serious illness for an extended period of time. I did it with a wonderful support system while living here in Rochester. I want to reach out to families going through similar medical challenges, but who lack a support system due to their being away from their home. I want to pass on the countless blessings that were showered on me and my family to other families who are strangers in our community."

Living a Full Life
Every day, Jodie performs one hour of self-care steps she learned in the PRC. These include stretching, 30 minutes of aerobic activity, balance ball exercises, and resistance and strength training.

Jodie enjoys writing, scrapbooking, photography and music. She hadn't been able to play her guitar for years because she had lost partial use of her left hand. Now, she plays guitar and piano daily.

"Chronic pain and bed rest seem so long ago," says Jodie. "I've come so far. I still live with chronic pain, Chiari malformation, and spinal headache, 24 hours a day, but I live a full life."