More than 250,000 people in the United States are estimated to be living with spinal cord injuries (SCI), with approximately 17,000 new cases each year. Those who are dealing with SCI must navigate a variety of challenges to live as normal lives as possible.
“A spinal cord injury alters basically everything, there’s no system that’s untouched by it,” said Hannah Mercier, an assistant professor in the Occupational Therapy Program in the Stony Brook School of Health Professions. “Most people understand the physiological challenges, but there are also emotional ones. There’s a lot to process.”
On July 25, Stony Brook hosted a Technology Innovations Expo aimed at bettering the lives of individuals with spinal cord injuries. The Expo was part of a two-week summer program that ran from July 16-29.
The program was presented by Empower SCI, a non-profit corporation established to enable individuals with spinal cord injuries to lead happier, more meaningful and more independent lives. Empower SCI works to fill the gap in the rehabilitation industry that has been created by a decrease in length of stays at rehabilitation hospitals and outpatient services during the recovery from a spinal cord injury.
Twenty vendors and more than 75 attendees convened in the Alan S. deVries Center to see the latest technology to meet the needs of those who’ve experienced spinal cord injuries and take in live presentations.
“This event was successful in bringing in community members, as well as Stony Brook faculty, students and healthcare providers to learn about life changing tools and skills, from switches to wheelchair maintenance to high tech mobility devices,” said Mercier.
Mercier’s involvement with SCI goes back 16 years, when she met a group of like-minded post-graduates, including Elizabeth Remillard, Jess Goodine, and Carrie Callahan, future co-founders of Empower, at Shake-A-Leg rehabilitation program in Newport, RI.
“It was a summertime residential rehab program for people with SCI or other neurological conditions,” said Mercier. “It was a really wonderful and unique environment that was a short-term post-rehab tune up. We lived together during the short program and were able to address rehab goals and skills to impact quality of life; objectives that were so often neglected while someone is in the traditional health care system because of more pressing survival needs to address after spinal cord injury.”
Mercier continued her efforts in clinical care at Spaulding Rehabilitation Network, and in research first as a PhD student at the Boston-area SCI Model Systems, and then as a post-doc fellow at Harvard Medical School. In 2012, she guided outcomes measurement for Empower SCI and took a more prominent role in spearheading Stony Brook’s efforts to collaborate with Empower SCI upon joining faculty in 2020.
“We started the program as grassroots nonprofit organization,” said Callahan, who was working in a hospital spinal cord inpatient rehab when she saw that a lot of people were learning how to survive, but not necessarily thrive, in traditional rehabilitation models in the US. “Programs like this offer people a chance at rehabilitation at a time where they’re motivated and ready to learn. It can help them get to that next level of enjoying life, get back to the things they love, and really find independence in the things that are meaningful for them.”
People with SCI face challenges that include: loss of movement; loss of or altered sensation, including the ability to feel heat, cold and touch; loss of bowel or bladder control; pain or an intense stinging sensation caused by damage to the nerve fibers in your spinal cord; difficulty breathing, coughing or clearing secretions from your lungs.
Expo participants learned about new products and services that can help them attain more independence and a better quality of life.
“Empower has been like an extended family,” said Michelle Maslanka, another program participant. “Stony Brook has been a great and supportive host.”
Besides providing an opportunity to see the very latest products, the expo also provided an equally valuable chance to address what is still needed.
“We’ve advanced so far, but I’m surprised at some of the things that we haven’t advanced,” she said. “For example, I was talking to someone about standing wheelchairs and how great it is that we can stand, but the functionality needs to be improved. All you can do is stand, and that’s a great thing, but you can’t do any functional activities. So I think we have a ways to go and events like this give companies ideas on how they can improve their products.”
Middletown, NY-based Avoca Solutions displayed a range of therapeutic recreational mobility products, including a product called Zeen that enables users to maneuver with only 40% of their arm strength with a weight support that enables safe walking without using the arms and hands. Another product called the Velochair® enables users to freewheel with only 10% of their strength in one leg and one hand, allowing users to negotiate small paths.
Manchester, NH-based Mobius Mobility, the event’s headline sponsor, displayed a multi-modal personal mobility device called the iBOT® that’s designed to enable users to navigate terrain like stairs, beaches, grass, rocks, and snow, custom fit to its user’s center of gravity.
Not all vendors displayed hi-tech products. Canine Companions, a national non-profit that provides highly trained service dogs at no charge to the recipient, brought several dogs-in-training to the show to interact with attendees.
“Service dogs perform tasks like turning lights on and off, opening and closing refrigerators, picking up and retrieving items, pulling wheelchairs and more,” said Emily Tullo, puppy program administrative assistant at Canine Companions’ northeast training center. “With some people it’s helping them with tasks. For others it’s giving them the confidence to go outside and go shopping or visiting. We have veterans who suffer from nightmares and the dogs will nudge them to wake them up. These dogs can do almost anything.”
More than 1,000 puppies are in the program, and each requires up to 18 months of training. About 50 service dogs are placed with recipients each year.
In addition to the Expo, the two-week program also included physical activities like kayaking, cycling, surfing, and yoga as well as cooking, 1:1 occupational and physical therapy sessions, rehabilitation counseling, and wheelchair assessments. “Life Hacks” featured clinician volunteers and participants sharing information and resources that have enabled greater independence in their daily lives, and specialized educational topics addressed sexuality, advocacy, and vocational skills.
— Robert Emproto