The Cord Newsletter Winter 2024

JEFFERSON MOSS-MAGEE REHABILITATION

Winter | 2024

Unleashing the Power of Wheels in Motion “Everybody’s journey is different,” says Keith Newerla, community program coordinator at Jefferson Moss-Magee Rehabilitation. “But for some people, just being in a recreation program like ours, meeting other people and getting involved with sports, is a huge catalyst for getting back to life.”

Participating in wheelchair sports provides numerous physical, psychological and social benefits for people with mobility impairments. These sports specifically play a crucial role in the healing process for people with spinal cord injuries by promoting physical rehabilitation, enhancing mental well-being and fostering a sense of community. They also help individuals regain strength, mobility and confidence. continued on next page

Inside the CORD 3 Patient Story: Professor’s Miraculous Recovery Journey 4 Music Fosters Therapeutic Environment for Young SCI Patients 5 Former Patient Educates Clinicians About Limb Loss 7 “Gaining Ground” Increases Strength & Endurance 8 Research, Presentations & Publications

Frank Ganther (#23) and Chris Kile (#42) are fierce competitors on the Wheelchair Basketball team at Jefferson Moss-Magee Rehabilitation Hospital.

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Patient Success Stories

“All of my experiences have put me in a position to share what I’ve learned,” he says. “Recreation changed my life for the better and I know it has changed the lives of other people in our programs, and that is really the goal.”

Dr. Jeanne Doherty, assistant medical director at Jefferson Moss-Magee Rehabilition Hospital, also understands the power of adaptive sports. An avid softball player and runner in her youth, Dr. Doherty was diagnosed in college with chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease related to Guillain-Barré syndrome. CIDP impacted her coordination and balance. Eventually, she began using a wheelchair, walker and power scooter to assist with mobility.

“Through that whole evolution to today, I’ve always tried to do whatever I could from a sports perspective,” says Dr. Doherty. “Through Jefferson MossMagee Rehabilitation Hospital and other communities, like the PA Center for Adaptive Sports (PCAS), I ‘dipped my toe’ in adaptive skiing and have come to love adaptive cycling.”

Rugby player Ben Baker competes at the “Beast of the East” Wheelchair Rugby Tournament, held at RiverWinds Community Center in West Deptford, NJ.

Newerla tells the story of a patient training to be a pilot at the time of his injury. He got involved in wheelchair basketball and was preparing to fly to Phoenix with the team for a tournament.

“He told me he was a bit nervous for the trip and I was thinking, if something with the plane goes wrong, he could land it, with his training,” Newerla recalled. “He said, ‘It’s not about that; how do I even get on the plane?’”

“He had not traveled by airplane since his accident. On the trip, he found wheelchair ramps and other accessibility accommodations on the airplane,” says Newerla. “The tournament ended, he flew back home and said to me ‘I never thought I’d be able to do this, but I think I can go on vacation now.”

Wheelchair Sports Changes Lives Individualized wheelchair sports like tennis, water or snow skiing, adaptive cycling and more, offer a highly personalized, adaptable experience.

“There is a freedom people feel when they play,” says Newerla. “It allows them to forget, even just for a few moments, about the challenges they face every day.”

This is true for patients at Jefferson Moss-Magee Rehabilitation Hospital, but also for staff and physicians. Newerla, a lifelong wheelchair user, has a long history of participating in sports, from playing wheelchair rugby and acting as a ski instructor, to being a two-time paralympian who competed for the United States Equestrian team for 10 years.

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In the realm of wheelchair sports, the transformative impact extends beyond physical activity—it touches lives, fostering resilience, camaraderie, and newfound possibilities. As individuals at Jefferson Moss-Magee Rehabilitation embrace the diverse range of personalized experiences offered by adaptive sports, they rediscover strength and mobility and savor the liberating moments.

The stories of triumph, shared by both participants and dedicated staff like Keith Newerla and Dr. Jeanne Doherty, illuminate the profound healing power inherent in the wheel’s motion—a testament to the enduring spirit of recreation that transcends limitations and empowers individuals to navigate their unique journeys toward a richer and more fulfilling life.

Resilience in Every Brush Stroke: A Professor’s Miraculous Journey of Recovery at Jefferson Moss-Magee Rehabilitation Hospital “I am very glad to stand here to celebrate the staff and the work of Jefferson Moss-Magee Rehabilitation Hospital. Let me rephrase that—I am grateful to be able to stand here at all,” said Suvir Kaul, professor in the Department of English at the University of Pennsylvania and a former patient, at the 36th Annual Humanitarian Award Dinner in November.

Before his accident, Kaul stayed active by walking with his wife, rowing, cycling and taking online yoga classes.

Eleven months ago, Kaul fell while exercising and broke two vertebrae in his neck. He knew something was wrong immediately; he could not feel anything below his neck.

He was rushed to the Emergency Department at Thomas Jefferson University Hospital. After 13 days in the ICU, they transferred Kaul to Jefferson Moss-Magee Rehabilitation – Center City.

to have him stand, then walk and hold a spoon, a toothbrush, or even a paintbrush. While he had no idea how far he would go, with the support of his care team and art and music therapy, he was able to make great progress.

“I’ve painted walls, but I have not used artistic paintbrushes or an easel in the last five decades,” said Kaul. “I could not grasp even the thickest paintbrush in the art therapy studio without tape.

When I managed to hold the brush, the pain in my arm and shoulder was excruciating, and I could only dab blobs of color on the paper.”

Over time, Kaul gained control of the brush and his art became more clearly defined. His painting was a visual marker of improvement in his mobility, while music therapy engaged his body and mind.

“I gave up on music as a 12-year-old who chose woodwork as a hobby rather than the guitar,” he said. “So in music therapy, I kept time on various instruments while standing. And because you are listening, playing along and—in my case—laughing at your musical talents, five minutes turns into 10 minutes and then a half hour passes and you realize you have been on your feet the whole time and feel stronger.

It’s stealth therapy.”

After 13 days in the ICU and three weeks in rehabilitation, Kaul was able to walk out of the hospital with minimal support.

Kaul still experiences tingling in his legs and arms today, but he is extremely proud of his improvement. “I’m very functional. We’ll see if my neuropathy improves, but even if it doesn’t, my recovery has been kind of a miracle.”

“My doctors told my wife and family that they could not predict whether I would recover the use of my hands and legs,” said Kaul.

During one of his first physical therapy sessions, Kaul was surprised to find he could do a few of the exercises immediately. His care team told him that movement meant his injury was neural versus muscular in nature. “They told me that neural recovery can happen surprisingly quickly in some cases. So that was a moment of some hope.”

Kaul’s care team pushed him, working

They told me that neural recovery can happen surprisingly quickly in some cases. So that was a moment of some hope

Former Jefferson Moss-Magee Rehabilitation patient Suvir Kaul addresses the 36th Annual Humanitarian Dinner after his recovery.

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Patient Success Stories Music and Lyrics Serve as Grounding Force for Young Spinal Cord Injury Patients Creative Arts Therapist Allison “Allie” McCrea, MMT, MT-BC, had an idea to gather young patients with spinal cord injury in a room to talk about music and song lyrics with the hope that it would foster a therapeutic environment for building relationships and camaraderie through the shared experiences of injury and rehabilitation.

She held the first SCI Young Music Therapy Support Group on a whim in late October 2023 and 13 men showed up.

“I actually felt a little intimidated – which I never feel – but they all asked me the next day when the next group was so I knew I was onto something,” says McCrea.

She decided to offer it monthly, referring to it as “therapy in disguise.”

“The beautiful thing about song sharing is that it opens up a lot of dialogue through the lens of talking about lyrics and coming up with a collaborative playlist,” she says. “It is more about the love of music and normalizing social interactions, promoting peer

collaboration and learning independent coping skills.” This is beneficial to inclusion, as all the group participants have varying levels of physical ability.

So far, the group has been all men, which Allie attributes to SCI being more prevalent in males. She says they all have strong support systems outside of the outpatient facility. Some have similar injuries but different functions.

One member of the group was injured six years ago and some only a few months ago.

“One patient with tetraplegia – paralysis in the upper and lower body – operates his wheelchair by head control and his cell phone by voice control,” says Allie.

“Before joining the SCI music therapy group, during an individual session he addressed therapy goals by creating his own lyrics, pacing his voice, creating a beat on Garage Band, then speaking his original lyrics over the beat.”

Cohen’s Perceived Stress Scale. This was a collaborative effort with Allie and his speech therapist to better understand the impact of music therapy on his speech and psychoemotional goals. This patient’s experience with music therapy and adapted techniques has inspired other patients.

Another patient said to McCrea at the end of a therapy session, “Are you proud of me? I made myself vulnerable today.”

Creative arts therapies have been instrumental in helping many individuals with disabilities not only increase their function, but also create meaningful social connections, often while learning something new,” says McCrea. “It’s really special to watch.”

He reported experiencing moderate to high levels of stress before this endeavor and after several months – a low level of stress as measured by

Members of the Young SCI Music Group (from left): Tyrone Smith, Jashon Hart, Casey Watson and Alex Rossius share a love of music together. Facility Dog Oona looks on.

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Creative Arts Therapist Allison McCrea with Jefferson Moss-Magee Rehabilitation outpatient Patrick Hoey at the Humanitarian Dinner last November.

How to Educate Clinicians about Limb Loss: Show Them the World Through Your Eyes by Rebecca Levenberg Reprinted and edited with permission from an original story featured in Amplitude magazine

On an August afternoon, I sat around a horseshoe-shaped table with a dozen first-year medical students. Their short white coats were freshly pressed. Their ID tags dangled proudly, minted just days ago. Their faces were open and welcoming, eager to learn what I would teach them.

It was their third day of medical school.

“Before I became a patient,” I began, “this was just a place I rode past on my bike.”

The place was Thomas Jefferson University Hospital, a Level 1 Trauma Center, where I had my left leg amputated above the knee after I was hit by a truck while bicycling to work.

I told them about the surgeon who paused, in the heart of all that chaos, to lean in and listen to me. And how, in that one moment of connection, I knew I could trust this team.

“The smallest interactions can make the

biggest difference,” I told the students.

I gazed around the table. I tried to look past the white coats and ID tags to see the individuals behind them. They had years of training ahead of them. Would my story matter?

After class, the students talked with me – asking insightful questions and sharing snippets of their own stories.

They told me their fears about the future: that they might say the wrong thing to a distressed family, or not know how to help a patient.

The course was called Introduction to Clinical Medicine, but it was the subtitle that caught my attention: Caring for patients begins with understanding the stories they tell.

After my accident, I spent my first two days in the operating room. On Day 3, I lay on a bed in a glass cubicle of the Critical Care ICU, heavily sedated, breathing through a ventilator, covered with bandages, and swollen with fluid.

I looked nothing like myself. The medical team asked my family to bring in photos of me from before the

Rebecca Levenberg enjoyed biking at the Jersey Shore before her accident.

accident. At first, we thought those photos were for our own benefit. But that’s not why the care team requested them.

It was Day 3 for me, but not for my doctors. They were already experts, highly trained trauma surgeons with years of knowledge and skill. In just two days, they had learned my problems inside and out. They knew everything about my injuries. But they didn’t know me. Yet.

Putting Limb Loss into Words Over time, the medical team learned I was a special education teacher, a rollerblader, the oldest of six siblings, and a writer who loved to travel. They learned that I liked eating bacon and hated drinking hospital-prescribed Boost®. They learned that I had flashbacks from the accident, especially at night.

“We’ll get through this,” my doctors told me, even on the most difficult days. I trusted them. We knew each other. We had become a team.

Learning wasn’t as simple as it sounds.

Rebecca photographed with the Thomas Jefferson University Hospital trauma team surgeons who cared for her.

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Rebecca (center) shares her story with first-year students at Sidney Kimmel Medical College.

When my rehab doctor tried to teach me about wound care, I broke down in tears. In the two months since my amputation, I had not summoned the courage to look at my residual limb.

“You have to love your leg,” she told me. She said it was still part of me, a special part that needed tenderness and love to heal. I cried that day for all my body had been through.

Thirteen years later, I carry these lessons into every interaction with my healthcare team.

When I meet a new doctor, I introduce myself beyond what I look like physically. “I live independently,” I tell them. “I need to carry grocery bags. Go to work. Take care of myself when I’m sick, even in the middle of the night.” I explain that my ability to walk varies from day to day—not all doctors realize this—so I need to know about accessibility, parking, and whether I’ll have to take off my prosthesis in the exam room.

The challenges of living with limb loss are easily overlooked, even by medical professionals. When we’re at our most functional, there’s an illusion of ability.

We may walk with a natural gait, climb stairs, and navigate crooked sidewalks.

We learn new ways to dress ourselves,

work in the kitchen, and carry our own luggage. At a doctor’s office, I can walk into the waiting room and take a seat. I can hoist myself onto the exam table without complaint. To the untrained eye, I could be a nondisabled person with an extra-cool leg.

But that functionality changes from day to day. If I’m uncomfortable in my prosthesis, I cancel dates with friends. I leave dirty dishes in the sink to preserve precious leg time. I stay indoors when it snows. Some nights, my residual limb wakes me with shocks of nerve pain.

It’s been over a decade since my first conversation with those medical students. Since then, I’ve shared my story with many other groups in the healthcare community, including doctors, nurses, physical and occupational therapists, and pastoral care teams.

Each time I sweep my eyes across a sea of white coats and ID tags, I try to see the individual people beneath. I imagine my story sprinkling down, word by word, and rippling outward to impact future patients and families.

Being an amputee is not only a balancing act, but a struggle to put into words. It’s hard for an outsider to imagine, so we need to explain our perspective and experience.

When I finish, it’s my turn to listen. And those caring, compassionate people— so dedicated to making a difference— ask their questions, share their own stories, and leave their impact on me.

Why Are We Here?

Any interaction can be another Day 3—a chance to listen, share, and understand. When we open a window into our lives, we reveal our ability, our disability, and the extraordinary space between.

According to The New York Times, approximately 80 percent of U.S. medical schools provide training in “narrative medicine,” a discipline that includes listening to and understanding patient stories.

We are more than just patients. Our doctors are more than just doctors.

We’re all individuals with full, complex lives. To work together, we need to educate and learn from one another.

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That is where learning begins.

Gaining Ground

Gaining Ground Program Increases Strength and Endurance Recovery following a neurological injury does not follow a set timeframe and is different for each person. It may be a long, slow process, and is often about more than just walking.

Recovery is about regaining function and improving your overall quality of life.

Gaining Ground is a four-week specialized exercise program specifically tailored to the individual with a focus on improving function while taking into account the client’s goals and abilities. The program includes an evaluation by a physical therapist and a fitness assessment by an activity-based trainer, a customized exercise prescription program and one-on-one training.

Participants use a variety of specialized equipment, including: • electrical stimulation cycles • the Lokomat • robotic exoskeletons • standing frames • weight training equipment • adapted cardio equipment.

Gaining Ground offers one-on-one sessions with a therapist and trainer, as well as self-paced group sessions,

art and music therapy, massage therapy, recreation therapy and various educational topics.

Positive results may include: • improved health and well being • increase in central nervous system activity • increased sensation, including changes in bowel and bladder sensations • increased muscle mass • increased function below the level of injury

“I would do the program every session if I was able to!”

Gaining Ground is a private pay program and is not covered by insurance. Please note that participant slots are limited and on a first-come, first-serve basis. Contact us at eric.beck@jefferson.edu for information on program cost.

Upcoming sessions: • February 26 – March 21, 2024 • April 8 – May 2, 2024

• improved posture and trunk control

• July 8 – August 2, 2024

• decreased pain

• October 14 – November 7, 2024

• decreased medication use.

For additional information, including more patient testimonials, photos and videos, please visit our website:

Previous participants report: “The one-to-one training helped me get more function out of my right arm which helped me with transfers.”

“The group sessions were a great work out, and we all motivated each other.”

“The weight lifting was great – I was able to go up 10 pounds on my weights by the end of the program.

The increased strength allowed me to stand more easily.”

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• September 9 – October 14, 2024

MageeRehab.org/Gaining-Ground

Research Research/Publications/Conferences American Occupational Therapy Association’s National Specialty Conference

“Promoting Skin Protection and Pressure Injury Prevention for the Complex Neurologic Patient”

Jefferson Moss-Magee Rehabilitation

Caroline Palantino PT, DPT, CWS, CLT Kiley Cruit, PT, DPT, NCS

Hospital Elizabeth Stokes, MD, OTR/L, an occupational advanced clinician in the stroke program, presented at the American Occupational Therapy Association’s national specialty conference on adult rehabilitation held October 22, 2023 in Baltimore. The title of the presentation was “Occupational Therapy’s Role for Diabetic Management in Acute Rehabilitation.”

Elizabeth Watson, DPT, presented “Therapeutic Technology in Stroke Rehabilitation” at the 13th Annual Regional Neuroscience Conference & State of the Art Stroke Summit. This conference was held in Atlantic City on Sept. 29-23, 2023.

APTA Pennsylvania - Move PA Annual Conference “Bridging the Gap to Independence: Use of Assistive Technology, 3D printing, and Comprehensive Wellness Programs to Improve Quality of Life and Function in People with Neurologic Diagnoses” Jaclyn Schwartz, CTRS Brian Comly, MS OTR/L Carol Owens, PT, DPT, GCS Elizabeth Watson, PT, DPT, NCS “Balancing functional mobility training while promoting neuro-recovery in the complex neurologic patient”

“Interdisciplinary Approaches to Optimizing Cancer Care in Inpatient Rehabilitation” presented by Benjamin Ayzenberg, PT, DPT, NCS; Colleen Dowd, PT, DPT

Academy of Neurologic Physical Therapy – Annual National Conference Erika Dixon, PT, DPT, NCS, and Elizabeth Marcy, PT, DPT, NCS, MRMC, copresented a poster titled “High Intensity Gait Training with Robotic Assisted Gait Training in the Subacute Stroke Population: A Case Series.”

Andy Packel, PT, NCS, presented “Enhancing Clinical Reasoning: Introduction to the Rehabilitation Treatment Specification System” and was on the planning committee for the conference.

“Do I Do the ISNCSCI Correctly?

– Pitfalls and common mistakes performing the ISNCSCI exam and classification”

By Mary Schmidt Read, PT, DPT, MS, FASIA At the 62nd International Spinal Cord Society Annual Scientific Meeting, ISCoS 2023 Edinburgh, Scotland, October 2023

Erin Freimuth, PT, DPT, NCS Erin Trudell, PT, DPT, NCS Susan Detwiler, PT, DPT, NCS Elizabeth Watson, PT, DPT, NCS “Just Do It: Collect and Standardize Your Outcome Measures. Lessons Learned from a Rehab Setting” Erin Freimuth, PT, DPT, NCS Erin Trudell, PT, DPT, NCS

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Virtual Support Groups All support groups are currently meeting virtually, via Zoom.

For dates and details, contact the individuals listed or visit JeffersonHealth.org/MageeSupportGroups.

• Amputee Peer Mentoring: Rebecca.Levenberg@jefferson.edu or 215-587-3205

• Stroke Family Care Group: Vilma.Mazziol@jefferson.edu or 215-587-3024

• Amputation Support Group: Rebecca.Levenberg@jefferson.edu or 215-587-3411

• Stroke Peer Mentoring: Rebecca.Levenberg@jefferson.edu or 215-587-3411

• Aphasia Support Group: Svjetlana.Vitor@jefferson.edu or 215-218-3909 Sarah.Lantz@jefferson.edu Sarah.Troy@jefferson.edu

• Wendkos Stroke Club: Fritz.Louisjean@jefferson.edu or 215-587-3180

• Brain Injury Peer Mentoring: Rebecca.Levenberg@jefferson.edu or 215-587-3411

• Young Adult SCI Social Group: The group meets virtually every other week and in-person for a community outing six times a year.

Katie.Eckert@jefferson.edu or 215-218-3911 Colleen.McAllister@jefferson.edu or 215-218-3900

• MS Healthy Living: Colleen.McAllister@jefferson.edu or 215-218-3900

• Young Adult Brain Injury Social Group: Keith.Newerla@jefferson.edu or 215-587-3412

• Brain Injury Family Care Group: Madison.Burrows@jefferson.edu

• SCI Family Peer Support Group: Ruth.Black@jefferson.edu or 215-587-3030 • SCI Peer Mentoring: Marie.Protesto@jefferson.edu or 215-587-3174 Keira.Aviles-Rivera@jefferson.edu or 215-587-3174 • SCI Resource & Support Group: Marie.Protesto@jefferson.edu or 215-587-3174

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Jefferson Moss-Magee Rehabilitation Address Service Requested

Non-Profit Organization U.S. Postage PAID Philadelphia, PA Permit No. 2269

1513 Race Street Philadelphia, PA 19102-1177 1-800-96-MAGEE JeffersonHealth.org/Rehab

Our New Name Magee Rehabilitation Hospital and MossRehab have come together under the umbrella of Jefferson Health as Jefferson Moss-Magee Rehabilitation, which includes our six inpatient locations and more than 40 outpatient rehab sites across the Philadelphia region and South Jersey. Collectively, we are the largest and highest ranked provider of acute inpatient and outpatient physical and cognitive rehabilitation in the Philadelphia region.

Notably, our two flagship inpatient locations in Elkins Park, PA and Center City Philadelphia, are both nationally ranked by U.S. News & World Report, with Elkins Park holding the highest rank in Pennsylvania. Together, and with the experienced clinicians at Jefferson Health, we help individuals with the most complex rehabilitation needs recover from injury and illness and return to their best possible way of life.

MOSSREHAB and

M A G E E R E H A B I L I TAT I O N H O S P I TA L CS 24-1361