Information Specialist Spotlight: Donna Lowich

Donna Lowich’s days revolve around questions. They wind their way to her desk at the National Paralysis Resource Center (NPRC) from across the United States, a steady stream of phone calls and emails sent from small towns and big cities and everywhere in between. From one hour to the next, their subjects shift, from ventilators and spasticity to the sticky red tape of insurance. Sometimes, the questions are urgent. Sometimes, they are delivered through tears. 

How do I choose the best rehabilitation center for my husband? What should I do about my mother’s pressure injury? Why is Medicare rejecting my claims? How can my son learn to drive again? Will my daughter be able to have children?  

Every injury is different, and so are the answers that Donna, an NPRC Information Specialist (IS), provides. But there is one that never changes, and that anchors the question that lies beneath all the others. 

Who will help my family?  

From the moment people reach out to the NPRC, they have found the answer.  

Since 2002, Information Specialists have helped more than 138,000 people living with paralysis and their families find the resources they need to build independent and healthy lives. Donna, a part of the Information Specialist team since the NPRC opened its doors, has fielded more than 35,000 questions herself, tackling both the crush of concerns that follow an injury or paralysis diagnosis, and the practical and emotional challenges embedded in life thereafter. 

Over the years, she has connected newly injured individuals and caregivers alike with NPRC support groups, peer mentors and its comprehensive digital library comprised of hundreds of free booklets and fact sheets. She’s been a steady voice on the other end of the line for day-to-day life questions – How can I adapt my office workspace? Where can I find a wheelchair basketball league? – but also during emergencies, whether a secondary health crisis or an event like the California wildfires evacuations. 

On a recent fall day, Donna spoke with a woman calling on behalf of her brother-in-law. He had sustained a spinal cord injury in a catastrophic fall that had occurred at an unfortunate moment between insurance plans. Five months had passed, and he still hadn’t received any therapy. 

“Understandably, the family was totally overwhelmed and not sure in which direction they should go,” Donna says. 

More than most, Donna understands what the fear and panic following an injury feels like. She and her family lived through it themselves.  

When her knee first began to bother her, Donna’s life was happily full: she was a corporate librarian, a wife, and a mother of a 4-year-old son. But the cause of the pain was more complicated than expected, and she bounced from one doctor to the next. There were X-rays and suspicions of an inflamed spinal cord, and a misdiagnosis of multiple sclerosis. Finally, an MRI revealed herniated disks in her neck. 

Surgery, the doctor said, was the solution. She would be in the hospital for ten days, and back to work in a couple of months.  

But something went wrong – to this day, Donna is still not sure what – causing a C4-C5-C6 level spinal cord injury. She was 34-years old. 

“When I woke up in the recovery room, all I could do was shrug my shoulders,” she says. “I felt like I was trapped in my body and I didn’t know why.” 

It was 1985 and most doctors still believed there was little to be done for spinal cord injury. There was no internet, no place to turn to for answers about what came next. Trying to imagine what their lives would look like was impossible. Donna wondered how she would get dressed and cook, how she would get Jeffrey ready for school and return to work herself? Her husband Walter had the same questions about how to best care for her.  

“There were so many questions but very few answers,” she says, adding, “It was very difficult. I was not getting a lot of positive feedback. No one was giving me the idea that if I worked hard, I could overcome this. So, a lot of it came from within. It was like, ‘Either I do this on my own or nothing is going to happen.’” 

Donna worked hard to regain her strength. Back home, she and Walter slowly adapted to their newly shaped lives. Using her research skills to answer the questions others had not, she figured out how to get an adaptive driver’s license and to pursue local exercise and therapy programs that helped her regain some function. When Jeffrey began to play baseball, Donna went to every game; when she couldn’t maneuver her wheelchair onto the field, she watched from the parking lot. 

“I always wanted him to know I was there,” she says. 

She returned to work as a corporate librarian until 2002, when a friend told her that the Reeve Foundation was launching a groundbreaking new program dedicated to helping people living with paralysis. Donna immediately applied to become one of the Foundation’s first Information Specialists.  

The urgency of the NPRC’s work was evident from the start.  

“In the early days, the phone rang all day, every day," Donna says. “There was a pent-up need for the PRC. As soon as it opened, everybody wanted to get information. People were calling from everywhere. Indiana, Florida, California. It was amazing.” 

A dozen staffers logged every question and, from there, began to build a place where the community could come for long overdue answers.  

Scouring nursing manuals, academic journals and healthcare newsletters, the team expanded its focus to encompass not only paralysis related to traumatic spinal cord injuries, but those stemming from medical conditions like strokes, spina bifida and multiple sclerosis. Guidelines on how to choose a rehabilitation center and what to expect when first coming home were created alongside fact sheets tackling the deeply personal issues that mattered most in daily life, including bowel and bladder management, and sex after an injury. An ever-changing and comprehensive state-by-state list of local resources helped connect callers with support networks in their own community. 

Nearly 24 years – and more than 35,000 questions – later, Donna remains determined to do all she can to help families. With every packet of NPRC materials she sends to individuals with new injuries, she includes a personal note of encouragement.  

“I always tell people they have to stay positive,” she says. “I know it’s difficult, but I also know how important it is. I always put that in my letters. They have to hear it from somebody.” 

This month marks the 40th anniversary of Donna’s injury. She is now 74-years old, and lucky enough to be living near cherished granddaughters whose schedules keep her busy. But she has no plans to retire. 

“There was nothing for my family,” she says. “We were flying by the seat of our pants, wondering, ‘Where do we go now?’ There were no answers. And that’s why I want to help people now, as much as I can, for as long as I can.” 

 To learn more about the NPRC, please visit our website at https://www.ChristopherReeve.org/ or call an Information Specialist at 1-800-539-7309.