When Walter Lowich said goodbye to his wife before her spinal surgery, he thought he knew what to expect. An operation. A recovery. And, soon enough, her return to regular life.
Donna Lowich had developed a stiff knee a few months earlier, a common enough condition that turned unexpectedly complicated. There were X-rays and puzzled doctors, suspicions of an inflamed spinal cord, and a misdiagnosis of multiple sclerosis. Finally, an MRI revealed herniated discs in her neck. The surgery wasn’t simple, but the doctor assured them he’d never had a bad outcome. It was early December 1985. The holidays were on the horizon, and their son Jeffrey was four years old.
“She was supposed to be in the hospital for 10 days,” Walter says.
Instead, Donna woke up unable to move her body beneath her shoulders; something had gone wrong, and she was paralyzed. Her life – their lives – were changed in a way neither could’ve imagined.
Walter didn’t know anyone with a spinal cord injury. He had so many questions, but there was no internet to search for information, no one to call for guidance. Over the next six months, he took care of Jeffrey, went to work, and visited Donna at the hospital twice a day; he fought hard to keep her spirits up but, privately, his fears were overwhelming.
“I was never talked to by a doctor or a nurse or a counselor or a social worker,” he says. “It was so difficult. There was no information anywhere about how I could take care of her better. ‘Is there some group who can help me with something? Is there some resource that I can get?’ There was just nothing out there.”
Until Dana Reeve founded the National Paralysis Resource Center (PRC) in 2002, families like the Lowichs were left to grapple with the upheaval caused by spinal cord injuries on their own, searching in vain for support, for answers to endless questions, for a much-needed roadmap for living with – not simply surviving – paralysis.
Dana understood firsthand the frustrations and fears faced by these families; her family had experienced them, too.
Christopher Reeve sustained his spinal cord injury in 1995, ten years after Donna Lowich became paralyzed. But little had changed, and the Reeves struggled to find the information they needed to understand and adapt to their new lives.
“It didn’t seem like there was one place where we could call and ask five different questions that seemingly had nothing to do with one another,” Dana said.
What families, and especially caregivers, so desperately needed – that one place to not only find answers and support, but community, too – didn't exist. So, Dana decided to build it.
From the moment the NPRC opened its doors, the pent-up need for its services was clear. The phones rang all day, every day; the calls – along with a steady stream of faxes and old-fashioned snail mail – not only arrived from across the country, but around the world. That first year, nearly 8,500 questions poured into the small office in New Jersey.
Scouring nursing manuals, academic journals and healthcare newsletters, NPRC Information Specialists logged every question and answer, slowly building a centralized database of knowledge about paralysis that hadn’t existed until then.
The NPRC’s new library became an anchor for countless caregivers. There were guidelines on how to choose a rehabilitation center and what to expect when first coming home from the hospital. There were fact sheets about spasticity, bowel and bladder management, pressure injuries, and autonomic dysreflexia. Within a year, the NPRC published the Paralysis Resource Guide, the first and still the only comprehensive guidebook tackling every aspect of life with paralysis, from secondary conditions and assistive technology to mental health and disability benefits.
As the scope of its publications grew, so did the expertise of the NPRC’s extraordinary Information Specialists. These staffers, some of whom lived with spinal cord injury themselves, served as a lifeline for caregivers at a time when hospitals provided little guidance for life after discharge.
Through calls with the IS team, caregivers found crucial help navigating complicated insurance claims, understanding frightening secondary health conditions, and connecting with local resources in their community. But alongside that information, they offered a steady voice on the other end of the line – proof that someone cared enough to not only help, but listen.
In the decades to come, the NPRC embedded an array of caregiving supports throughout its programs, ranging from Nurse Linda’s Q&A webinars and educational blogs to Quality of Life Grants awarded to non-profits across the country working to mitigate the emotional, financial and physical challenges that often accompany caregiving.
But it was through the Peer & Family Support Program (PFSP), launched in 2012, and its one-on-one peer mentoring that thousands of caregivers discovered the much-needed support network that Dana Reeve had envisioned. In 2021, responding to requests for increased community, the NPRC launched a free, biweekly virtual support group to provide caregivers with regular connection and conversation.
For one early member named Sarah, whose husband had sustained a complete C3 injury in 2017, the existence of the group felt like a miracle.
“You can find cancer support groups,” she says. “You can find ALS support groups. But just try to find a spinal cord injury caregiver support group that is moderated by a licensed social worker and not a group of people on Facebook.”
When her husband first returned home from rehab, Sarah was terrified.
“It was just constant worry, 24/7, for the first two years,” she says. “Am I going to insert the suprapubic tube wrong? Am I going to pierce the bladder? Is he going to die in his sleep?”
Unable to find a support group – when one local hospital advertised a meeting for caregivers, she was the only person to show up – Sarah struggled with a profound sense of isolation.
“I wanted, and needed, other people who were in the trenches, who were doing the daily caregiving, who I could talk to about supplies— about everything,” she says. “I was looking for an outlet because I’m on an island.”
At the end of the first PFSP meeting, Sarah felt a single emotion: “Relief,” she says.
She was not alone. And that was the point. Then and now, the NPRC continues to help caregivers chart a path through the most difficult moments of their lives and toward brighter days to come.
It has been nearly forty years since Walter Lowich said goodbye to his wife before the operation that changed both of their lives. Thinking back to that day, and the years that followed, his voice breaks; it was not easy.
“I was clueless,” he says. “I basically stumbled around from year to year, just trying to keep things together – to keep the house running, to keep working, to take care of Donna as best I could.”
He marvels at the breadth of resources now available to families navigating the shock of new injuries. Peer mentors. Comprehensive booklets covering every question he’d had and more. A community to help carry one another forward.
“Boy, I wish I had had that,” he says. “It would have been nice to have a support group. It would have been nice to have people to talk to who had gone through the same experience.”
The earliest years were the hardest. Walter had to teach himself everything: how to transfer Donna from the bed, from the car, from the bathroom. He helped with her catheter and carried her up and down the stairs of their home. He cooked and went to work and did the laundry and the groceries and focused on Jeffrey. Life was exhausting, but he kept telling Donna they would figure it out the way they always did. Together.
And they did. Support from Donna’s mother and sister helped, along with Donna’s own determination. She worked hard to regain her strength and, a year after the surgery, returned to work as a corporate librarian. Many years after that, she heard that the National Paralysis Resource Center, a groundbreaking new Reeve Foundation program dedicated to helping people with paralysis, was looking for Information Specialists; she applied and nabbed her dream job providing help to families like her own.
Life carried on, reshaped. There were health challenges and weddings and anniversaries and grandchildren. It was happy, but also hard. The worries Walter felt in the hospital, the sense of not knowing how best to care for Donna, never quite went away.
“I tried to do the best job I could,” he says. “Sometimes, I don’t think it was good enough.”
He is proud of Donna, a mother who never missed a baseball game, an Information Specialist who has fielded more than 35,000 questions across 23 years for people in the midst of their toughest moments. He knows those families are lucky to have her, and the NPRC, on the other end of the line. He hopes they continue to call.
“The best advice I can give a caregiver is to stay grounded,” he says. “And don’t be afraid to ask for help. I didn’t have anybody to talk to. But there are resources available today. Don’t hesitate to take advantage of them.”