First appeared in Crain’s Cleveland Business
But Perkins was determined to prevent his life from changing, except in one way: his wheels.
“I wanted to get back to being a 20-year-old as soon as possible,” he says. “My dad had spent an exorbitant amount of money renovating our basement. He wanted a functional place where I could live as long as I wanted. As grateful as I was, I didn’t want to be there. I wanted to live life like any other 20-year-old.”
Little did he know that rebuilding lives would become his life’s work as he added another change: PT, DPT, ATP after his name — indicating advanced training with a doctorate in physical therapy and as a certified assistive technology professional.
“People living with spinal cord injury still can be contributing members of the community and workforce,” Perkins shares.
From patient to producer
Perkins, a clinical physical therapist and research investigator, heads up the Adaptive Life Technologies (ALT) Lab at the MetroHealth Rehabilitation Institute — the only U.S. lab of its kind led by someone living with spinal cord injury (SCI). The ALT Lab incorporates technology into rehabilitative care for those living with life-altering injuries or illnesses, such as SCI, stroke, muscular dystrophy, ALS, Parkinson’s disease and more.
The technologies enable home automation, environmental control, computer access, mobility and other real-life applications. Perkins and his team leverage existing technologies — computers, smartphones and smart-wear — to make devices more affordable. Recent ALT Lab technologies include TempMe to regulate body temperature; Snap and Go to help hold a baby carrier; and Freedom Close to open and close hinged doors.
“Our devices not only allow people living with spinal cord injury or other disabilities to interact more easily within their home but also reduce their reliance on caregivers,” Perkins says. “With greater autonomy, someone can pay for fewer hours of home care, lessen dependence on state-funded programs, reduce the burden on family and, ultimately, become more self-sufficient.”
Now in its second year, the ALT Lab — a rehab technologies provider credentialed through Opportunities for Ohioans with Disabilities/Bureau of Vocational Rehabilitation (OOD/BVR)— has connected nearly 150 people with assistive technologies to improve function and, in some cases, return to work.
“The work being done at the ALT Lab is life-transforming and helps individuals regain parts of their lives or adjust to their situation with greater ease,” says Richard Wilson, M.D., chair of the Department of Physical Medicine and Rehabilitation at MetroHealth.
Lived experience, real-life resource
In addition to helping people like him, Perkins wants to be an asset to local employers.
“Employers are not always sure how to work with someone who has an injury or disability, and the ALT Lab can be a resource,” Perkins says. “We can review access points, design desk set-up and identify efficiencies so employers can benefit from people with unique talents and knowledge despite their injury.”
Jacob Schueller is helping in this endeavor. He received care on the sixth floor of the MetroHealth Rehabilitation Institute — the specialized spinal cord injury unit that is one of only 18 Spinal Cord Injury Model Systems in the U.S. Schueller continued his care with MetroHealth once discharged and met Perkins while he was at the wheelchair clinic, where Perkins helps people get a wheelchair that best meets their needs.
“I saw Blake, who is in a wheelchair due to a spinal cord injury, doing his job well,” Schueller recalls. “And I met Steve Polakowski, who is a quadriplegic like me and who has his own IT company, and I thought, ‘How can I make a difference and do something meaningful, too?’”
At the ALT Lab, Schueller was evaluated for equipment that would allow him to contribute and work. (Funding for his devices is in process with OOD/BVR.) He also began discussing with Perkins how he could give back.
“This is the type of lived experience you only have if you end up in this situation. I want to use it to help others, whether their life has only recently dramatically changed or they’ve been living with spinal cord injury for a long time,” Schueller says. “Adaptive technologies can be what gets someone from feeling defeated in life to getting over the threshold and realizing they can still have a meaningful life.”
Schueller set up his own company, LernSCI, and began working on a contract basis for MetroHealth. He works with patients, case workers and the Cleveland State University SCI Volunteer Corps to coordinate the procurement and installation of the technologies.
Additionally, Schueller is one of seven grant writers for a large grant being pursued by MetroHealth and research partner Case Western Reserve University.
“Research grants today require lived experience,” he explains. “This is an opportunity for me to use my experience as a guided force for research.”
Schueller — who completed a fellowship through Praxis Spinal Cord Institute in Canada — traveled to Washington, D.C., in October to sit on a panel for the U.S. Department of Defense’s Congressionally Directed Medical Research Programs, which is deciding how to allocate federal dollars to research institutions.
A lot has changed since Schueller visited the wheelchair clinic last year.
“My work with the ALT Lab is the most meaningful thing I have been involved in post-injury,” he shares. “It helped solidify my purpose in life. I find a lot of satisfaction helping ease the turbulence of those who have similarly found themselves in what seems like a paddleless canoe at first.”