Shortly after I was born, my parents noticed I had severe muscle weakness, and I was eventually diagnosed with Central Core Disease, a rare (but thankfully non-progressive) muscle disease that weakens and quickly fatigues just about every muscle in the body, minus the heart. My lungs and legs were particularly impacted—I was never able to stand or walk, and to this day, I use a ventilator at night when I sleep.
But I never let that hamper the life I wanted to live. That started at age 2, driving myself around in my first power wheelchair, and yes, crashing into a few (read: many) walls. Since then, I have had five other wheelchairs, including my most recent version.
My old wheelchair had been more than a sense of comfort. For a decade, it was my set of "legs,” an extension of my body that had been with me since I graduated college. It moved me across the stage as I attempted improv comedy for the first time, took me to shake hands on my first job interviews, and maneuvered me around packed parties as I tried to strike up conversations with women with sweet smiles. It had literally moved me to, and around, a new city: Philadelphia. I didn't mind the wear and tear that came because of that journey: the patina of cracks in the faux-leather seat and the tiny holes lovingly punctured by my pandemic-cat's claws while she jumped up onto me to ask for cuddles.
Romanticizing, and moving on from, a piece of medical equipment
Sure, I was attached to the chair for comfort reasons, but primarily because of the hassle that comes from having to "get" anything you need when you're a person like me who has a physical disability. Other than investing time...lots of time... speaking with doctors, medical and equipment companies, insurance companies, and some other people who perform jobs you didn't even know existed, it takes patience.
In the past, I have received the equipment, repairs, and supplies I need later than I generally expect. It often reminded me of a construction project, where a contractor breezily promises repairs by the spring, and as the calendar turns to fall, it’s still an active job site.
In other words, I had a history of practiced patience. However, after friends and family pestered me with comments like, "when are you going to get a new wheelchair," I decided to finally start the process of ordering a new chair. Since I work at Penn Medicine as a press officer, I like to think I believe in the mission: that Penn and Penn Medicine are superior organizations, put patients first, are comprised of people who truly care about their craft and the people they serve. Every day, I hear and help tell stories that prove Penn’s exceptional care. As always, I was proven right by my personal experience at Good Shepherd Penn Partners (GSPP).
The process begins
I arrived for my appointment in May 2023. Spring, a time of rebirth, and as it turned out, new wheelchairs. Using the patient appointment phone line, I was able to secure an appointment a couple months in advance.
I entered a huge room full of new wheelchairs, ramps, and a plethora of mobility devices. Meeting me was a team of three experts, my “wheelchair guides,” comprised of Diana Duda, DPT, MSCS, a physical therapist for Good Shepherd Penn Partners who has practiced clinically for over 18 years, D. Frank Distel, MD, MBA, an assistant professor of Clinical Physical Medicine and Rehabilitation, and Kevin O’Reilly, a wheelchair technician and assistive technology professional from the company National Seating and Mobility, a vendor of wheelchairs that GSPP uses for its patients.
They sat at little rollie desks in a semi-circle facing me and fired off questions about my medical background: what I’m looking for in a chair, my home and work environment, and questions about everyday tasks and any things I need help with (like getting dressed or transferring in and out of my wheelchair, referred to by the professionals as activities of daily living). However, the team had most of my information since I was and am already a Penn patient.
As anyone who has ever had a complex medical challenge knows, the typical process to see specialists involves separate appointments spread across several days and possibly multiple locations. That was the exact opposite of my experience at GSPP.
Since Good Shepherd Rehabilitation and Penn Medicine joined forces to form GSPP in 2008, GSPP has prided itself on being a hub of care for inpatient and outpatient rehabilitation care as well as long term acute care. Providing both experts in medicine as well as rehabilitation clinicians and therapists, patients can receive care that’s coordinated, individualized, and backed by the latest research. The collaboration isn’t more on display than in the Wheelchair Seating and Mobility Clinic at Rittenhouse.
“About five years ago, my colleagues and I established one day a week for wheelchair and seating assessments,” said Duda. “We found that, in order to assess patients’ needs efficiently, we needed a physical therapist, a medical doctor, and an ATP (assistive technology professional) to meet with patients at the same time. It’s really a novel approach. It’s not done locally, and I really haven’t seen the exact same thing done anywhere else in the country,” said Duda, of the estimated 200 evaluations annually. “It’s all thanks to the unique relationship that GSPP and Penn Medicine have with each other.”
After answering questions from the team, they took measurements of my body so that the new chair, footrests, and armrests would be at appropriate heights for me. We then talked about what I was looking for in a new wheelchair. I was comfortable with my previous wheelchair, a Permobil M300 which has an extra motor and allows users to raise the seat of the chair up a couple feet to be closer to a standing height. It also tilted the seatback and reclines. I selected a new model of the same wheelchair, a Permobil M3.
Luckily, I have good use of my arms and hands, but GSPP can also help patients identify the easiest way for them to drive their wheelchair and what kind of joystick or equipment they need. There are plenty of options on controls and even controls for those who are paralyzed and have no use of their hands, arms, and legs.
“I have patients who drive their wheelchairs using an app, on iPads or tablets, that reads their eye movement,” said Duda. “Every year, the technology improves enabling more people to be independent.”
Seats can also be custom-made to adapt to all body shapes or needs. People who use wheelchairs, especially those who are sitting constantly like me, need seats that won’t become uncomfortable after an hour or two. In my case, the standard adult seat that comes with a Permobil M3 is super supportive and works for my needs, but seats can easily be customized to patients with the help of GSPP.
My appointment ended in less than an hour. Couching the question with, “I know these things take a long time,” I asked when I could expect my new chair. The response from Kevin was, “not as soon as you’d like, probably! What do you think?” I responded, “a year?” This was based on my past experience and an attempt to temper optimism.
“Oh, well you’ll be happy then,” said Kevin and the team. “You’ll probably have it by August or September.” While I still reined in any wishful thinking, they delivered the estimate with confidence that made me feel…well, confident. I felt heard by the team on what my needs were. I felt like the options for new wheelchairs were explained thoroughly, allowing me to make a good decision on what I needed.
Sure enough, the chair was ready for me and a final fitting at GSPP in August 2023. It fit me well, and it turned out the new model could raise my seat even higher than my old chair. I took it for a drive down the hallway and “really opened it up” as a car enthusiast might say, speeding around and making sure my new chair could keep up with me.
The team helped me make a few adjustments to the height of the leg rests and arm rests, and after that, scheduled a delivery of my wheelchair to my home.
There are countless reasons that this process could take a longer for patients depending on their situation, and all I can do is speak from my own experience. It helped having been a long-time wheelchair user and knowing what I need. But, regardless of a patients’ needs, I’d wager that the team at Penn Medicine Physical Medicine and Rehab and Good Shepherd Penn Partners will help them quickly and efficiently receive the mobility support they need.
I thank my old wheelchair like an old friend from whom I’ve grown apart but whose shared memories will always be cherished. Our relationship lasted for a season. But as I write this, I’m sitting comfortably in my new chair. I’m sure my cat will scratch it soon.