REAL PEOPLE, REAL STORIES

How Lucille’s* Determination Helps Her Travel the World, Even With CIDP

Despite living with CIDP (chronic inflammatory demyelinating polyneuropathy) for about a decade, Lucille’s can-do attitude and deep determination have helped her continue to live life on her own terms. She continues to stay busy, active, and positive about what her life can be, even with CIDP.

When Lucille posed for a photo atop the Machu Picchu ruins in Peru, it was yet another in a series of victories. Although she literally needed a boost from some fellow hikers to make it to the top, there she was, smiling proudly for the camera. Her neurologist had playfully said that he would need to see pictures in order to believe the things she was doing after being diagnosed with CIDP.

Lucille’s accomplishments may be hard to believe for some people who are familiar with the numbness, weakness, and loss of balance that CIDP may cause. But people who truly know Lucille are not surprised. “I’ve always been a rebel,” she expressed, “and I’m certainly not giving in to CIDP.” Her positive outlook can serve as an inspiration to others living with CIDP, regardless of where they are in their journey.

Watch the video to hear Lucille share her CIDP experience.

A long path to diagnosis

At first, Lucille’s doctor thought her numbness and balance issues were being caused by her diabetes. As they continued to get worse, however, they both knew something else was going on. “The doctor would hold on to me and tell me to close my eyes,” she said, “and I just couldn’t stay standing. I’d fall down if he wasn’t holding me up.”

Her doctor wasn’t familiar with CIDP, and he couldn’t figure out what was wrong. So for 5 years, Lucille’s symptoms continued to worsen. Eventually, he referred her to a colleague who happened to be familiar with CIDP and was able to help Lucille finally get the right diagnosis.

“I wish I would have gotten a diagnosis sooner,” she said. Seeing more than one doctor is sometimes necessary to get a CIDP diagnosis. Not all doctors are familiar enough with CIDP to suggest the needed testing.

I’ve always been a rebel, and I’m certainly not giving in to CIDP.

-Lucille, living with CIDP

Diagnosis received, challenge accepted

Being a very determined person, Lucille made the conscious decision to face her diagnosis head-on. Instead of focusing on the condition and how it could limit her, she focused on the many things she wanted to do and how she could limit the impact of CIDP on her lifestyle. She committed to a schedule of regular, ongoing treatments that have enabled her to continue doing the things that give her joy. “CIDP’s not going to get me down, until it actually takes me down,” she said.

Lucille loves to travel. She has a very adventurous spirit, and her travels are not for the faint of heart. Not only has she made it to the top of Machu Picchu since being diagnosed, but she’s also visited Morocco, climbed the Great Pyramid in Giza, Egypt, and flew in a hot air balloon in Turkey, among many other exotic places.

Unlike many people’s vacations, when Lucille travels, there’s no sitting around and taking it easy. That’s not to say CIDP hasn’t affected her abilities. These days, whenever she walks for a distance, she uses walking sticks for balance and support. She also has trouble walking down stairs, due to unsteadiness in her legs.

These CIDP symptoms may have slowed her down, but they haven’t defeated her. Lucille has been able to manage her symptoms and keep moving with the help of caregivers, which include her children and her siblings.

While traveling with her son in England, the two walked over 49 miles, despite Lucille falling on day 2. “My son helps me a lot. He knows that I can get tired. He knows that if I'm walking down stairs, to be in front of me so that I don't fall down the stairs.”

Lucille recognizes the importance of a good support system. In addition to her son and siblings, with whom she’s very close, she also has a group of longtime friends and a loving support dog she can depend on for help and comfort.

CIDP’s not going to get me down until it actually takes me down.

-Lucille, living with CIDP

Because she’s so focused on doing what she loves, though, she often forgets about CIDP and the fact that her legs are weaker than they used to be. “I need to remind myself that, even though I’m not letting CIDP stop me, I still need to be careful and take my walking sticks or a cane with me,” she said.

When hiking, “I may be the last person in the group to make it to the destination,” she said, “but I’m never far behind.” Hiking down a mountain in Peru was a difficult and scary adventure, but she set her sights on the goal and forged ahead. “I wasn’t going to give in to fear.”

CIDP can affect people differently. It’s important to pay attention to your own body and talk to your healthcare team before taking a trip or performing physical activities. 

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Lucille’s active approach to life doesn’t stop at wandering the world. After all, she needs to fund her many adventures. Now that she’s retired from her decades-long career as an insurance agent, she works concessions at major sporting events, big concerts, and baseball spring training.

When CIDP symptoms start to get her down, Lucille’s confidence helps her get through. “To live with CIDP, I have to push through each day—bad days as well as good ones.”

Lucille sums up her experience by saying, “As much as I can, I try to keep doing the things I love to do, even though I have CIDP.” She knows that’s not always possible, but that doesn’t stop her from living life on her terms. She already has several more adventures planned, including a canoe trip down the Amazon River.

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