Chronic Inflammatory Demyelinating Polyneuropathy: A Patient’s Perspective

IN JULY 2020, Angye Hawkins was a fit and active 67-year-old who kept in shape by walking up to five miles a day. It was during one of those walks that she noticed her posture had become slumped and she had a hard time standing up straight. The following week while enjoying another walk, she recalls feeling unusually fatigued, with a pronounced weakness in her legs. “I called my daughter and said I didn’t think I could make it home on my own,” explains Angye. “She had to get the car and come pick me up, which was very concerning. I immediately scheduled an appointment with my primary care doctor for the following week to find out what might be wrong.”

Angye underwent a battery of tests, including X-rays and a CAT scan, but results were inconclusive. Meanwhile, her condition continued to deteriorate and within weeks, she was unable to lift her arms, lost more feeling and function in her legs and began using a walker to get around. Soon, she says, her feet and ankles became completely numb. “It was devastating, and I was scared — I didn’t know what was going on with me and I thought I was going to keep declining,” she recalls. “I went from being very independent to being unable to drive, feed or even toilet myself. It felt like my body was caving in on itself.”

Alarmed by Angye’s sudden lack of mobility, her doctor referred her to a neurologist where she underwent a thorough exam, including an electromyogram to test her nerve function and response. Ten days later, she was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), three months after the onset
of her initial symptoms.

Immediately following Angye’s diagnosis, she was admitted to the hospital for a five-day course of intravenous immune globulin (IVIG) and both physical and occupational therapy. Although thankful for the attentive care, Angye recalls one big challenge was the COVID-19 protocols in place at the time that kept her from having visitors. “The nurse encouraged my daughter to come around the side of the hospital near my window. She would call me on the phone, and we could at least see each other while we talked. It was a very strange time.”

Thankfully, the IVIG treatment plan quickly began restoring some of Angye’s mobility and function, but she says it was the additional two weeks of rigorous therapy that really made a difference. She spent as much as four hours each day relearning how to climb stairs, roll over in bed, safely get into and out of the shower and even fold laundry. Her treatment plan continued at home for an additional six weeks as she navigated the long road toward recovery.

As part of her ongoing treatment plan, Angye receives IVIG every three weeks at home, and once her insurance approved it, she was prescribed the immunosuppressant mycophenolate (CellCept), which she credits with greatly restoring her quality of life.

In terms of her formerly active lifestyle, Angye is back to walking most days (she’s proud to be clocking a quarter of a mile without her walker and a mile and a half when using it). Angye also joined a CIDP Facebook support group to meet others who share her diagnosis. “I credit the early diagnosis and intervention and the emphasis on physical and occupational therapy that helped me regain a measure of my independence,” says Angye. “I recently turned 70, and my condition is manageable. My goal is to encourage others not to give up and to keep seeking support and answers.”