Coping without a Cure

Diane Hardison, 64, was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, in November 2008 after living with mysterious symptoms for two years. Because ALS gradually stops muscle function, including the muscles that control breathing, Diane sleeps with a BiPAP breathing machine to ensure maximum oxygen flow to her lungs.

Diane moved into Brighton Gardens, an assisted living facility in Raleigh, NC, in March 2009. With the help of several family members, she consolidated belongings from each of her three homes into a two-room apartment. She also traded in her Lexus for a $30,000 power wheelchair, which has become her primary mode of transportation.

Diane shares her apartment with her mother, 93-year-old Hazel Sorrell, with whom she has lived for the past 15 years. “I really helped to take care of her, and now, she’s having to take care of me,” Diane said. Hazel assists her daughter with several everyday tasks, although her doctors and her family have advised against helping too actively because of her age.

Muscle spasticity often affects the coordination of people with ALS. Diane spends almost an hour each morning applying her makeup. Brighton Gardens staff members help her with many other activities, including changing her clothes, washing her hair, and using the bathroom. “I can’t dress myself but can feed myself,” Diane said. “It takes twice as long for me to eat my meals.”

One result of Diane’s lack of mobility is a buildup of edema, or pockets of fluid, on her legs. Physical therapists at Wellness One in Raleigh help to relieve the uncomfortable pressure by breaking up the fluid with deep massages and fitting Diane for compression hose. Diane’s mother, Hazel and sister, Martha accompany her to an appointment, where a therapist measures her legs.

While Diane’s power wheelchair has made her more mobile since she lost muscle function in her legs, it has made travel more difficult and expensive. Diane’s five sisters and two brothers rent handicapped-accessible vans or hire drivers for doctor appointments and other outings. In October 2009, this made it possible for Diane to go on her family’s annual trip to the NC State Fair.

“I was afraid that maybe I wouldn’t get to go this year because I was in this very nice wheelchair,” Diane said. “My sisters took care of everything—rented a van, and we went to the fair and had a blast.” While at the fair, Diane ate all her traditional favorite foods (such as funnel cake) and sampled some new ones, including a fried Snickers bar and chocolate covered bacon.

Diane’s sister, Marilyn helps her cut her food on Thanksgiving Day 2009. Because Diane has lost some of the dexterity in her hands due to ALS, she uses specially-made eating utensils and often requires assistance with ordinary knives and forks. Some of Diane’s family gathered in the activities room at Brighton Gardens for Thanksgiving, sparing Diane and her mother the difficulty of holiday travel.

Diane’s 29-year-old nephew, Joshua greets her with a nuzzle at the fair. Before her diagnosis with ALS, Diane worked as the Director of Exceptional Children for Wilson County Schools. Her experience with neurodivergent children made her an especially strong candidate to look after Joshua, who has autism, during his childhood.

Diane’s two-year-old nephew, Carson tries his hand at steering her power wheelchair. While Diane was once as inexperienced a driver as Carson, she quickly became an expert on all of the chair’s functions. She is now learning to use a DynaVox, a device that helps people with ALS communicate. As the loss of muscle mobility increasingly slurs Diane’s speech, the DynaVox speaks typed phrases aloud in a computerized voice.

Despite the many struggles of living with ALS, Diane still has fun with her family thanks to their constant help and support. “I could say, ‘Why me?’ but I really think, ‘Why not me?’ I’ve had a wonderful life,” Diane said. “But I could’ve not done this without all my family. There’s nothing that they wouldn’t do for me, and I love them.”