Lou and Sue share a home and an email address. The two sisters are twins, as their faces and rhyming names attest. Though the two raised families independently of one another, their grandchildren used to get them confused.
Lou is Sue’s caregiver, waking with each breathing fit in the night and administering a slew of daily medications. “It’s like you had to go to medical school to learn all this,” says Sue, referring to Lou’s knowledge of Sue’s bout with cystic fibrosis and neuropathy.
Sue started her chronic illness with a rough bout of pneumonia in 1999. Since then, she’s had numerous extended stays in nursing homes and hospitals. Describing her neuropathy, Sue said she woke up one night and couldn’t feel her foot and said, “That’s a bummer.” “She’s a great patient; she never complains,” Lou says. Sue and Lou speak almost in tandem when describing Sue’s health journey. Sue’s idiopathic neuropathy causes her no pain, only numbness. The combination with cystic fibrosis, however, leaves her exhausted because of multi-hour long coughing fits in the middle of the night.
Lou is a faithful companion and cheerleader, fielding Sue’s numerous allergies, cooking for the two of them, and helping Sue in and out of her wheelchair. Still, she concedes, “I’m 80 years old and not as strong as I used to be, but I try to pedal every day.” Lou leads the two of them in exercises every morning: “I guess we make a pretty good team.”
The twins used to enjoy going to NATX meetings before Sue’s condition forced them to become mostly homebound, but they continue to support NATX through their membership donations. They have been loyal supporters since 2012.