Editor’s Note: No one ever would have believed that Dr. Dale Hull, after becoming a quadriplegic, would have been a torch bearer for the Winter Olympic Games 2-1/2-years later. Dr. Hull was determined to be defined by more than the fact he was a quadriplegic (see our article about Dr. Hull). With the help of a dedicated physical therapist, Jan Black, and the idea that all he had to do to get maximum function was to do more each week than he had done the previous week, Hull achieved what many thought was an impossible dream. Although Dr. Hull’s story is amazing, he’ll quickly tell you that his self-determination hasn’t been the only reason he’s attained so-much return. “A large part of my recovery is due to the work and the encouragement that I’ve received from my physical therapist, Jan Black.” We wanted you to know who Jan Black is, and how has she helped Dr. Hull become an Olympic torch bearer and set-up the Hull Foundation and a facility known as Neuoworx.
I’m a physical therapist and have been for 22 years, specializing in the treatment and recovery of patients with spinal-cord injuries (SCI) and brain-damage injuries. I’m also the co-founder and clinical director for Neuroworx in charge of the staff and patient care. I also help develop programs for our SCI patients and promote our mission in our community. We currently have nine staff people working with us. When I graduated from physical-therapy school in 1991, I immediately began to work with SCI patients. I’d received a scholarship from the company that I went to work with after graduation. Back in the 1990s, when there was a severe lack of physical therapists, companies and individuals would give grants to physical-therapy students, if they would agree to work for the company or the individual after graduation. I went ahead and committed to a rehab group, Western Rehabilitation Institute, because I needed the scholarship money. Because of this decision, this rehab group had the option to tell me where I’d work and with what type of patients I’d be working. When I walked into the company’s offices after graduating in June that year, I was told that I’d be working with SCI patients, and I haven’t worked with any-other kind of patients, since my first day on the job. I worked with SCI patients from the time of their injuries all the way through their home care.
Back in 1991, the rehabilitation of SCI patients was facilitated by a team, including a physical therapist, an occupational therapist and a speech therapist. So, I was the spinal-cord physical therapist for the center where I worked. From that first day, I was intimidated by having the responsibility of determining the therapy for SCI patients. The SCI and neurogically-injured clients, at that time, were the most-difficult people in the world to work with, due to the lack of information about how to help these people. For about the first 3 months, I came home every night crying and telling my husband, “I can’t do this. It’s just too hard.” Finally, one night my husband, Wayne, said, “Okay, you don’t have to work anymore.” As a new graduate from physical-therapy school, I really hadn’t had any experience working with SCI patients. But I was fortunate that I had a strong neurological faculty at the physical-therapy school I’d attended, since I had zero experience in that area. In physical-therapy school, I’d done a pediatric rotation, a few hospital rotations and a traumatic brain rotation. My first job was with a group of patients that I’d never worked with previously. Because I was the only SCI physical therapist in the company, I had no one from whom I could learn. I only had 2 weeks to work with the person I was replacing, and then I was on my own. When my husband gave me the option of not working anymore, because, I was so upset after work every day, the practical side of me said, “This isn’t fair. My husband has given-up 2 years of his life to work and support me, while I’ve been going through physical-therapy school. We have bills to pay, and my bailing out isn’t fair, after he’s given-up so much.”
I actually really enjoyed working with these patients, but I was scared. I decided to buckle down and try to learn how to help them. I fell in love with this patient population. SCI patients were highly motivated to work hard and to get as much function back as they could. I finally realized that it was okay for me to learn as I began to work with SCI patients. I tapped into all the educational resources that I could find and also learned from the people at my physical-therapy school. I’d been working with SCI patients for 9 years, before I met Dr. Dale Hull.
Jan Black Explains How She Out Toughed the Tough Doctor
Part of the company that I worked for, before I met Dr. Dale Hull, was called Rehab without Walls. Rehab without Walls went into a patient’s home to do his or her rehabilitation and tried to get the patient back into an active life in his or her community. But I didn’t work for this side of the company. I began to learn about Dale before I ever worked with him. Every Tuesday we had team conferences at our company where the teams got together and discussed patients. We all listened to how different therapists were treating their patients, and what type results they were seeing. The team working with Dr. Dale Hull felt he was a difficult patient, a real horse’s rear and an MD who thought he knew everything. The polite way to explain how Dale was viewed at that time by the physical therapist working with him was that he was the know-it-all doctor, who now had a spinal-cord injury.
Then once I met Dale, I understood why he was branded like this by his therapist. To go to the root of the problem of Dale being so difficult to work with, the therapists treating him thought that because he had an MD behind his name, he should know what type of treatment he needed. I found out later that the reason Dale was so difficult was because, when a therapist came in to work with him, he or she would ask, “What do you need to do today?” In Dale’s mind, when he heard those words, he immediately became defensive and thought, “You’re the therapist. You should know what I need to do. I don’t know what I need to do.” He would get very frustrated and aggravated, because in Dale’s mind, the therapists were saying, “Physician, heal thyself.” Dale realized he didn’t know how to heal himself.
Something else that frustrated Dale was that if he didn’t tell the physical therapist what he needed, the therapist didn’t seem to have a plan for him. That really made him angry. I didn’t know all this about Dale, until after I met him. I met Dale as a fill-in for his physical therapist who was on vacation for a week. I remembered all the horror stories I’d been told about Dale.
When my company asked me to work with him that week, I rolled my eyes and said, “Okay, this is only for a week. I can do this.”
I really wasn’t looking forward to being Dale’s physical therapist. Anyone who ever has had to take care of a physician will tell you quickly that physicians are horrible patients. I’d worked with doctors before, and they often felt like they had to give me an anatomy lesson before I even touched them. They usually had a list of questions they wanted answered, also, before they’d let you treat them. Doctors are a separate breed, when it comes to being treated. However, in my 9 years of working with SCI patients at that time, I’d never been intimidated by the initials MD. So, I was ready to take Dr. Hull on and thought, “Dr. Dale Hull is an OB/GYN doctor. What can he possibly know about SCI injuries, other than the fact that he has one?”
The first day I met Dale was probably one of the saddest days of my career. When I went in to meet Dr. Hull, the first thing I said was, “I understand that you have a routine. What do you usually do on Monday?” That was so opposite of any way that I’ve ever approached Dale since that day. Dale gave me an attitude that I hope to never see again. Then we marched down to his exercise room. Now don’t get me wrong. Dale was very nice and very respectful, but Dale had a piece of equipment that he was accustomed to getting on for his therapy every day. I’m not really big on equipment. I’m a hands-on therapist. So, the entire 50 minutes that I spent with Dale was very awkward for me, but I was saved by an accident. Oftentimes, patients with SCI have issues with their bladder functions. Part of the way through his treatment, Dale had a bladder accident, and I was able to leave early. Once I got home, I called Dale’s case manager and said, “I’m not doing that again with that equipment. He’ll have to put-up with me for 4 days, just like I have to put-up with him. I’m going to do what I know I need to do to help Dale, no matter what he thinks.”
Although, I was confident that I could help Dale, I was still nervous going in on Tuesday. The first thing I did when I saw him for the second time was give him a long speech. “I realize that every therapist is different, and we all have different types of tools with which we work. So, just bear with me, since I’m not okay with your current therapy program. Your regular therapist will be back next Monday, but we’re going to work my therapy program for the next 4 days.” Dale told me later that he knew within 30 minutes of my working with him that I would become his therapist. I not only took charge but also explained to him what I wanted to do with him. I guess the best way to describe that second meeting with Dale was that I explained to him that I would take charge, be in charge and would give him the physical therapy I thought would help him get the most function back the quickest. Dale told me later that was exactly what he wanted, a physical therapist who knew what he needed to be doing and who had a plan of action to help him regain as much function as possible.
The Future that Physical Therapist Jan Black Saw in Dr. Dale Hull
I was really concerned about how Dr. Dale Hull would react to the fact that I was taking over his plan of care. Dale finally told me, “I want someone to take charge. I’m not a physical therapist. I don’t know what I need to do to get better.” Later Dale told me, “Jan, if you tell me to put my finger against a wall that’s about to fall on me, I’ll do it. I know you’re taking care of me, and you won’t ask me to do something that will hurt me or won’t be good for me.” I think Dale was saying, “You’re in charge, and I trust you.”
After that first week of therapy with drill sergeant Black, I was really surprised, when Dale asked me to become his permanent physical therapist. The reason I take charge, with the SCI patients with whom I work, is that each of them presents a different challenge. I saw an awful lot of potential in Dale to gain a lot of function, even though he was a quadriplegic, when I first started working with him. I saw in Dale a person who was willing to do whatever he had to do to regain as much function as possible. Also, during those first 4 days, I’d gotten to know Dale better and learned how he went through medical school and why. I could tell Dale was a very-driven person but also was very realistic in the goals he set for his recovery and was confident he could accomplish them. So-many patients started off with unrealistic goals and then became disappointed when they couldn’t reach their goals. Then once he reached that goal, he’d set another goal that he felt he could reach. For instance, when I first met Dale, his first goal was, “I can use my arm. Now, if I can just drive a power chair, I will be okay.” Dale wasn’t expecting total recovery but instead set very-achievable goals and then worked hard to reach those goals. Dale s attitude was, “I want to be the very best I can possibly be – whatever that is.”
When Dale finally told me that he wanted me to be his therapist, I was very excited. After 5 days, I realized that I really did want to work with Dale. I knew he had tremendous potential that wasn’t being tapped. When I first came in, I had the plan of care that had been prescribed for Dale. After the second day, I decided to do my own evaluation and then develop a new plan of care. Working with SCI patients was all I’d ever done, so I was very specialized in the treatment and care of SCI patients. During that first week, I knew that Dale could reach a higher level than the first assessment had indicated. I felt that after 5 days of working with Dale, that at some point he could be independent using some type of device. My diagnosis was, “I believe that I can get him functionally ambulatory with an assisted device. I believe he will be able to get around in his house, get in and out of his car and do short walks in the community. Any more than that, he’ll probably, have to have a wheelchair.”
Dr. Dale Hull Goes from Being a Patient to Partnering with Jan Black
Dale and I worked together for 2-1/2-years. One of the reasons that we could work together that long was because we convinced the insurance company that I could do Dale’s occupational therapy as well as his physical therapy. He and I worked together 4-plus hours a day, 5 days a week for about 18 months. Since I was an advocate for water therapy, I’d been putting patients in a community swimming pool. In the summer of 2002, I discovered a pool that was being put into a building. I had a very-affluent patient I was working with, and I put her and Dale in this new HydroWorx swimming pool. These pools really intrigued me, since they had treadmills and cameras in the pools and were mainly designed to rehabilitate top-level athletes. I thought they had huge neurological benefits, especially, for SCI individuals and talked HydroWorx about how these pools could be used to rehabilitate SCI and brain-injury patients. At that time, HydroWorx was looking for someone to promote the use of these pools in the medical profession. I gave-up my job with the company I’d been working with and went to work with HydroWorx, taking a decrease in pay. However, I was convinced that these new pools could have a tremendous benefit for SCI patients and became the director of the aquatic program for HydroWorx pools. To learn more about these kinds of pools, click on www.hydroworx.com.
When I left the rehabilitation company I’d been working for a number of years, I had 10 or 12 patients, who agreed to let me continue their home physical therapy, while I worked for HydroWorx. I worked with HydroWorx until May, 2004, when the company decided it wasn’t making the kind of money that they wanted to with these pools, and they ceased operations. Dale moved over to outpatient treatment. Dale and I had started traveling together. I’d made presentations for HydroWorx all over the country, and I’d taken Dale with me to demonstrate what could be achieved by SCI individuals by using these pools. On these trips, Dale and I began to talk about the possibility of opening-up our own clinic, and what we would do. We knew that someone would need to do therapy for the SCI patients that would give them the opportunities similar to what Dale had experienced. By 2003, we decided to form a nonprofit company, to able to accept donations to pay for: additional physical therapy for individuals who wanted to try to regain more function after their insurance no longer would pay for physical therapy; and physical therapy for people not having any insurance. Then when the pool company ceased operations, we decided the time had come for us to start our own clinic. We got a business license in 8 days and rented a room in the same building where the pools were. Since the pools weren’t being used, we negotiated to rent them.
When we started-up, we had very-little equipment. My desk was an egg crate. We opened our doors in June, 2004, with the 12 patients I already had. Right now, we’ve done our statistics for 2011 and 2012 and know that at any given time we’ll have about 40 SCI patients with whom we’re working. In 2011, we treated more than 100 patients. One of the goals Dale and I have set for Neuroworx is to let the patients we treat decide when they think they’ve gotten the most function they possibly can regain and not let the decision be made by an insurance company or someone else. Dale and I decided that SCI and brain-injured patients are the only injuries that when patients go into the hospital, they don’t come out better than they’ve been before they go into the hospital. SCI patients have to learn to be different and that they won’t be what they once were. As far as Dale has progressed, he’ll never be the person he once was, although he’s one of the lucky ones and has gotten a tremendous amount of functionality back. We’ve learned that with SCI patients, in most cases, someone else decides for them how-much function they’ll get back, and what type of life they’ll have. As a result, SCI patients often become very, very angry and very, very frustrated, when they can’t decide for themselves how-much function is enough for them.
One of the major principles that Neuroworx was founded on was the idea of letting the patient decide and be able to accept the amount of function at which they wanted to stop their own therapy. We have patients who will come to me at 6 months and say, “I’m happy about the function I have right now. I’m ready to return to school and get on with my life.” Then, there are other people who have been in therapy for 5 years, before they say, “Okay, I’ve got everything back that I think I possibly can get, and I’m okay with that.”
See the following video that shares one of Neuroworx’s patient experiences:
We feel our patients need to work as hard as they can work, for as long as they are willing to work, to get as much function back with which they’re comfortable. Medical science, today, has no way of looking at a SCI patient and determining what functions will and won’t come back. We can see how you present on the outside, but we can’t look at your spinal cord and determine what you’ll be able to get back in the future. There’s no objective tool available that I can use to tell a patient, “This is all the function you’re going to get back.”
Dale is a classic example of that. No one ever would have believed that a quadriplegic would be a torch bearer in the Olympics, only 2-1/2-years after his injury. No one in medicine can accurately predict how much function any patient ever will regain. Because of that fact, we continue to treat our patients, until they determine how-much function is the most they’ll ever regain. I can’t say to any person with SCI, “You’re probably not going to progress any further.”
We feel like Neuroworx has established a reputation through word of mouth that’s very good. I think we’re at a stage where we can grow and take more patients. We feel we’re doing something no one else is doing. I think we are at the level where we can show that the type of physical therapy we’re providing may have more benefit to patients, than the kind of physical therapy that was given in the past. Of course, we know that we have much more to learn. I feel we’re now ready to show outcomes and research, using the methods that we use to help SCI patients regain more function. We, also, believe that we can open more Neuroworx clinics around the country to provide the same type care elsewhere that we provide here for our patients. Our next goal is to be able to demonstrate the way we do spinal-cord rehab at Neuroworx actually provides more benefit for the patient, than rehab has been done in the past.
To learn more about Neuroworx, visit www.neuroworx.org. For more information about the Hull Foundation, click on www.neuroworx.org/foundation.php.
More Fundraising Help from Wheel:Life
In this book, you’ll review 10 brainstorming ideas for different types of fundraiser events to benefit an individual with a disability who needs assistance for medical equipment, physical rehabilitation, adaptive sports equipment or daily medical needs.
Throughout the book, author Lisa Wells shares real-life examples and success stories from her interactions with disability advocates, non-profit supporters and Wheel:Life members throughout a healthcare marketing career that spans more than 20 years on three continents.
10 Fundraising Ideas to Help People with Disabilities features interviews from:
• Paralympian Bert Burns on how he raised support to begin his career in wheelchair racing
• Project Walk Atlanta participant Leslie Ostrander on how she raised money for additional rehab
• The founders of 100 Songs for Kids on their annual music event to benefit children’s medical charities
• Rolling Inspiration creator Chris Salas on how he lined up sponsors for his SCI peer support group
and power soccer team
• The creators of Hunter’s Torch Daylily Garden, a fundraising resource for a child with special needs.
• The Independence Fund – a little known source of financial support for disabled US veterans.
About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at www.johninthewild.com.