Lisa and Dan Hughes

Partners in Pain

By Christie Cox

On a recent date night, Lisa and Dan Hughes spontaneously decided to go out to dinner more than 70 miles away from their home in Beaumont, California. Dan dropped Lisa off directly at the restaurant entrance so she didn’t have to walk far on feet that were throbbing with pain from diabetic peripheral neuropathy (DPN). Then Dan, who had undergone the amputation of half of his foot, found a faraway parking spot and walked to join Lisa at the entrance, despite his own pain. Rather than driving them apart, pain has brought Lisa, 62, and Dan, 65, together over their 30-plus-year marriage. When they both were diagnosed with type 2 diabetes and began dealing with complications and pain, their rooted partnership meant that neither was walking that path alone.

SPREADING SYMPTOMS AND NEW PAIN

After raising four children, Lisa enjoyed her role as an active grandmother, regularly getting on the floor to play and building blanket forts with her six grandchildren. In hindsight, she realizes the headaches and lack of energy she sometimes experienced may have been early warning signs of diabetes. During a routine blood test and check-up, her doctor noticed high blood sugar levels, and she was diagnosed with diabetes at the age of 60.

“I took it seriously, because I do not want to give myself injections,” she shares. She followed doctors’ suggestions related to diet, exercise, and other lifestyle changes, reducing her daily routine of sugary sodas she says she used to “drink like water.” She has significantly lowered her A1C since her diagnosis—a feat she is proud of.

Initially, the onset of diabetes didn’t slow her down much. In fact, the metformin prescribed to manage her blood sugar levels also helped with other symptoms, like her tiredness.

It wasn’t until pain from DPN—nerve damage caused by high blood sugar levels—set in within a year of her diabetes diagnosis that Lisa’s pace slowed. It started as tingling, then numbness, and ultimately developed into a constant intense pain she describes as feeling like “walking on nails.”

Her DPN symptoms are mostly in her feet, but she is noticing more pain moving through her legs as well. She describes her average daily pain as a 7 out of 10, but says that it can shoot up when she walks too much, or sometimes without warning.

Lisa always wears shoes, even in the house, because the reduced sensation from DPN makes it less likely for foot injuries to be noticed and immediately addressed. She regularly has her feet checked and has worked closely with her podiatrist to try to find ways to manage her diabetes and pain.

She’s worn custom diabetic shoes that unfortunately increased her pain, and tried nerve pain medication, weight-loss drugs, topical treatments, and a transcutaneous electrical nerve stimulation (TENS) unit—none of which helped. Sitting down and resting is one of the only ways she currently is able to ease her pain.

“I lost the ability to be able to get on the ground and play with my grandkids, and that part sucks, because that’s where my heart is,” Lisa shares. “The fact that I can’t walk very far and can’t be with my grandchildren like I want to, or run around the yard with them—when that got taken away, it hurt me so much.”

TAKING NEW STEPS

As nerve pain was creeping through Lisa’s feet, Dan was managing his own foot pain and learning to live with only half a foot.

Dan does have a family history of diabetes, but prior to his diagnosis of diabetes in 2022—not long after Lisa’s diagnosis—his focus was pulled by other health issues.

After a surgery that tried to leverage veins from his legs for his heart following a heart attack years before, he developed circulation problems in his left leg and foot that led to numbness, pain, and a long-term infection that would not heal. Two years of “excruciating pain every day” reached a breaking point as he was in and out of doctors’ offices with no improvement. He could no longer golf or bowl. At one point, he told Lisa, “Go to our garage and get an ax. I can’t handle the pain anymore.”

His infection turned to gangrene, and Dan learned he would need half of his foot amputated. He began to piece together a new life with half his foot missing and post-amputation pain—all the while continuing to manage his newly diagnosed diabetes by watching what he eats and taking medication to lower his blood sugar.

“Just because something happens to you, you can’t lay in your bed and die,” he says. “You’ve got to fight through some of this stuff. If you don’t, you’re not getting any better.”

He learned to golf and bowl again. He plays fewer holes now and spends more time in the golf cart. Instead of running up to the bowling lane like he used to, he takes a step or two and throws the ball. Today, his bowling average is almost back to his pre-amputation high of 190.

Bowling had long been an activity Dan and Lisa enjoyed together, both serving as officers in a weekly league. Lisa still joins him on bowling nights to see their friends and fulfill her officer responsibilities, but her foot pain means she can no longer join in the game. “Dan still bowls,” she says. “Even though he has half a foot, he still bowls. He’s my hero.”

PAYING IT FORWARD

Despite the pain Dan and Lisa are living with, they push on to enjoy date nights and casino outings, where they play games, people-watch, and laugh together.

Dan volunteers at the University of Southern California’s medical school, where he’s been invited to speak to limb preservation doctors and other patients, advocating for alternative methods to amputation. He recently spoke during the American Limb Preservation Society’s 2023 Diabetic Foot Conference, sharing his experiences with managing multiple conditions and struggling to find effective care.

Both Dan and Lisa recently got scooters, which improve their mobility so they can spend quality time with family, including on a recent trip with their grandkids to Disneyland. But the heavy equipment can be a logistical burden, so they are both continuing to search for effective treatment options so that they can not just roll but also walk with their grandkids.

Having unsuccessfully tried less-invasive treatments for her DPN, Lisa is hopeful about the possibility of relief from a spinal cord stimulator, which is implanted in the spine and uses electricity to block pain signals. She recently underwent a successful trial to test the treatment’s effectiveness for her and said she was able to feel her toes for the first time in a year and a half. She was scheduled for surgery to have a permanent stimulator implanted in the spring of 2024 and hopes that relief from the treatment will allow her to once again walk, run, and dance with her grandchildren.

Improved pain management for Lisa would also mean that the couple can get back to traveling. They want to return to Alaska to enjoy the sights together—on their first cruise there, Dan was in so much pain that he couldn’t leave his cabin.

Reduced pain would mean Dan and Lisa could bowl together again. It would mean they could once again explore the nooks and crannies of their backyard with their grandchildren.

Looking back at the years before her diabetes diagnosis, Lisa admits that she didn’t seek preventative care, only seeing a doctor when she was sick.

“I tell people all the time: ‘Take care of yourself now, because you don’t want to live with what I’m dealing with,’” she says.

Despite that struggle and pain, or perhaps because of it, Lisa and Dan now have a greater understanding of the value of life and living it to the fullest. Picturing the dates listed on a tombstone, Dan observes: “What’s in the dash in the middle between those years is life.”