"There are a lot of heartbreaking stories that you hear every single day. But when patients come to us, that terrible thing has already happened," says Venessa Lee, MD, University of Utah Health Physical Medicine and Rehabilitation. "And that's where we start with spinal cord injury treatment…to work back towards something positive."
Lee works with spinal cord injury patients at the Craig H. Neilsen Rehabilitation Hospital, the only Commission on Accreditation of Rehabilitation Facilities (CARF) accredited Spinal Cord Specialty Program in Utah and many of the surrounding states. The spinal cord injury program offers many key services, including:
- Ventilator Weaning and Management
- Diaphragmatic Pacing Program
- 1:1 Individualized Education
- Peer Support
- TRAILS Adaptive Sports Program
- Advanced Assistive Technology
- Spasticity management with intrathecal baclofen pumps and Botox
Team members are all experts in spinal cord injury and rehabilitation, from the nurses and respiratory therapists to the speech, physical, and occupational therapists and psychologists. "We also have two educators on our team, and they sit down with our patients and their families every day," says Lee. "To teach them how their body has changed and how patients can return to work, to sexual function, to an active life."
Accepting a New You
Lee says car accidents are often to blame for the spinal cord injuries she sees, and most of those patients are male. Accepting the many changes that come with spinal cord injury is often the biggest challenge. "For some people it's kind of a stigma. They feel like they're going to be looked down on, being disabled," says Lee. "For others, it's the visual part that's hard. They feel like they are going to look different or be seen differently by their friends and family."
Many patients, says Lee, find understanding through a peer program that's been building this past year. "We can tell our patients all day long, we know how you feel, but we don't. The people in our peer program do," says Lee. "They get volunteer training, get HIPAA certified, and they're happy to give back because they feel like they really got a lot out of the program and now they're on the other side."
Caring for Someone with Spinal Cord Injury
Providing care can be overwhelming and hard to understand at times. Depending on the severity of the injury, inpatient treatment wraps up in one to two months, and then outpatient care starts. The latter is with U of U Health at your side. "We follow our patients for the rest of their life, or for as long as they need us," says Lee.
One key reference provided to patients is the Yes, You Can! Manual. "It talks about many resources available, what to expect, and where to turn when you need different things." says Lee. "Our educators often give that to our patients."
Focus on the Small Stuff
"I have so many patients who think 'I'm not getting any better' and I remind them to think about what you could do a week ago or a month ago, and look at what you can do now," says Lee. "A patient the other day was telling me that he transferred by himself for the first time. And he was so emotional and tearful doing that. It's something you'd never think about before you were injured. Getting to see that progress is so rewarding."
To be a spinal cord injury caregiver, Lee thinks you need to appreciate really small gains and be good with delayed gratification, because things do not happen quickly. "We always remind our patients to be patient with themselves - you are getting better. It's about slow steady progress, setting small goals and appreciating when you reach them."
Where to Get Help
For ongoing spinal injury care, the Neilsen Rehabilitation Hospital team provides both primary care and an urgent care clinic to help its own. "If a patient has a bladder infection or a new respiratory infection, we try to take care of that the same day with our great nursing staff in clinic, rather than having our patients go sit in the ER for the day.
If you live locally, the team can also visit your home during the inpatient stay, says Lee, to look for where things like grab bars or ramps might be helpful. "We do try to be very available after they go home because there are a lot of questions that come up. We prepare them as much as possible, but there's always things that are unexpected," says Lee. "And sometimes people forget some of the small details." You can also continue use of the rehabilitation equipment as you continue to recover, and become more active with the U of U Health TRAILS adaptive sports program. "Our sports program also yields a lot of social support and a lot of friendships," says Lee.
The thing to remember, is you're not alone in spinal cord injury care. U of U Health even offers a six-week educational program for individuals with spinal cord injury, personal care providers, and family, focused on physical, emotional, intellectual, social, and spiritual wellness. "
"We hope with you," says Lee. "We want you to get better. We take advantage of the movement and function you have and build on it every day. If someone has more motor return or recovery, we adjust our goals and keep moving forward."