Women Aging with Spinal Cord Injury Part 2 - Reeve Foundation

Over the last few years, the challenges of aging with a T6 spinal cord injury have crept toward the center of Linda Norah-Davis's life. The 64-year-old Houston attorney fell five times between 2018 and 2019 as her strength declined, once breaking her leg in three places. The toll wasn’t just physical; as she lost confidence in her ability to transfer safely, Norah-Davis found herself limiting many of the normal activities, including bathing and driving, that she’d done independently for decades unless she had assistance.

This past fall, her husband of 41-years died. Now, even as she grieves, Norah-Davis must navigate the realities of aging that had already begun to reshape her life alongside his absence. The house, always so accessible, seems less so now. The bowel and bladder routine that took an hour with his help, takes twice that on her own. She is looking for a caregiver, but the pandemic has complicated her search.

“I can tell you, I’m struggling a little bit,” she says.

For women living with spinal cord injuries, the physical challenges of aging are frequently compounded by emotional ones. Secondary conditions such as chronic pain and osteoporosis can cause physical limitations that require more assistance from others, frustrating women who’ve long built fiercely independent lives. The costs of aging, whether from equipment modifications, medical bills or no longer being able to work, can add an additional layer of financial stress to health concerns. And the death of a partner, or close family members and friends, can increase feelings of loneliness.

“I never thought about aging—I just went day to day to day,” says Norah-Davis. “But I think we do need to have these conversations as early as possible, to create an atmosphere and a willingness to be open and mindful that this is what you may expect down the road.”

Preparing for and adapting to the physical challenges of aging with an injury is critical for managing emotional health. Proactively responding to a changing body with lifestyle tweaks or equipment modifications can help women avoid costly medical bills and secondary conditions down the road and preserve independence; ignoring age-related challenges can lead to isolation, anxiety or depression —and ultimately create more health problems.

Maggie McNiece, an inpatient therapy manager for the spinal cord injury unit at Kessler Institute forRehabilitation, works with many older patients as they recover from broken bones sustained in falls. Sometimes it becomes clear that even before the injury that brought them to Kessler, a patient had already been quietly struggling with daily care.

“Some people hide new realities,” she says, adding, “It’s very hard for patients to cope with the idea of becoming dependent.”

But whether adapting a bowel and bladder program to deal with increased pain, moving to more accessible housing or accepting the need for increased caregiving, McNiece emphasizes to patients that although aging requires equipment and lifestyle changes, it doesn’t erase a woman’s ability to make choices for herself.

Establishing a strong support network of family, friends and especially other women living with spinal cord injuries is an important aspect of aging happily. Social media and rehabilitative hospitals are good places to look for online and in-person support groups. Libraries can provide meeting space for women interested in starting informal meetups, while the Reeve Foundation’s Peer and Family Support Program can connect women one-on-one to share experiences.

Alissa Feldman, a 53-year-old graphic designer, felt the first effects of aging with her C6 injury in her 40’s when she began developing bladder stones and her bowel management routine became less effective. Lately, her feet and ankles regularly swell, and increasing pain makes it harder and harder for her body to get comfortable. She would love to talk more to women experiencing similar challenges, but the conversations in the spinal cord injury-related Facebook groups she’s joined tend to be more general or target new injuries.

“These support groups are helpful for women at any age,” she says. “But I’ve definitely been hoping to come across something specifically related to women aging with spinal cord injuries because people just don’t talk about it enough.”

Preliminary results from a recent study conducted by the Spinal Cord Injury and Disability Research Center (SCIDRC) at TIRR Memorial Hermann indicate the importance of creating community among women living with spinal cord injuries.

The study, called ZEST, promoted psychological health through structured 10-week group sessions that took place on the virtual platform Second Life. Moderated conversations among women living with spinal cord injuries, who ranged in age from 21 to 79, tackled a diverse array of topics, including self-care, healthy relationships, and grief and loss.

“Women with spinal cord injuries are a bit unique in that they are only 20 percent of the population, so they just don’t have the opportunities to talk in-depth and meet other women with injuries,” says Susan Robinson-Whelen, a SCIDRC research scientist who is also affiliated with the Center for Research on Women with Disabilities at Baylor College of Medicine. “It was shocking how many women in ZEST said that the most important thing they learned from the experience was, ‘I am not alone.’”

Discussions and advice about aging, including resource sharing and stressing social connections, came up naturally as women compared notes on their pasts and futures.

For Linda Norah-Davis, who served as a ZEST moderator throughout the study, hearing stories about aging challenges that mirrored her own provided a boost and reaffirmed her belief that to age well, women need to talk earlier and more often about it.

“Aging is an ongoing process, not something that suddenly happens when you hit 65,” she says. “You need to always be ready to embrace adaptation and change as needed, so you are not setting yourself back and making things harder for yourself as you get older.”

To request a peer mentor, contact the Reeve Foundation here or by calling 1-800-539-7309.

Read Women Aging with Spinal Cord Injury Part 1.