Most folks associate physical rehab with AARP types who are having hips, knees and what all repaired. But on Tuesday, February 9, the Baylor Health Care System Foundation Board luncheon was filled at Charles A. Sammons Cancer Center to learn about the amazing progress being made dealing with the thousands of spinal cord and traumatic brain (TBI) injuries. Each year Baylor Institute for Rehabilitation in partnership with Select Medical Corporation deals with 40,000 patients in their road to recovery.
From the invocation by former Baylor Institute for Rehabilitation patient Patti Foster to Baylor Scott and White CEO Joel Allison hinting at what lay ahead, the program was going to run the gamut of personal and breathtaking stories. As Baylor Health Care System Foundation President Robin Robinson advised one guest, “We’ve got Kleenex available.”
And right he was about the need for tissue. From corporate executives to community volunteers like Margo Goodwin, Pryor Blackwell, Nancy Dedman, Lisa Troutt, Richard Holt, Jill Smith, Steve Lieberman, Trisha Wilson, Pierce Allman, Nancy Carter, Kathy Crow, Barry Andrews, Jeff Staubach, Linda Custard and Mike McGuire, all were amazed at what was presented.
First on the program were members of the BIR medical team including physiatrist Dr. Randi Dubiel and clinical researcher Dr. Simon Driver. Randi revealed that traumatic brain injuries have almost become “a kind of epidemic of sorts” with 2.2M victims in the U.S. each year, and 5.2M live with traumatic brain injuries. The BIR team works with the patient to deal with more than the initial physical damage. They work with the patients to adjust to their long-term care and “not just survive their injuries but thrive” in the years to come.
Surprising some of the guests, it was revealed that spinal cord and traumatic brain patients have greater problems dealing with obesity, heart disease, diabetes and depression.
Simon reported that the research at BIR is “very patient centered.” Involving the patients in the project, he works on the therapy floor with the clinicians to research and develop new techniques to better understand the challenges of the patients. BIR is just one of 16 systems in the country that is recognized as a model system by the National Institute of Disability, Independent Living and Rehabilitation Research.
Simon told of two projects underway at BIR:
- Persons suffering TBI are twice as likely to die from cardiovascular disease and diabetes than the general population. Those suffering from spinal cord injuries also share this likelihood. BIR is creating a modified weight-loss program incorporating nutrition and physical activity for spinal cord injured patients.
- The development of health literacy to provide patients with a better understanding of their health needs. Too often patients may not fully understand or be uncertain of what the doctor said or how they should proceed. This situation is especially true for TBI and spinal cord patients. BIR is placing an emphasis on better communication between the healthcare providers and the patients.
Then the personal testimonies took place, leading off with a young mother who had been on the Orix legal team. In 2010 she and her kids were in a neighbor’s yard pet sitting when a tree fell. Luckily, her children were spared, but the attorney found herself suffering from a devastatingly complete spinal cord injury paralyzing her from the waist down, resulting in her being dependent upon a wheelchair.
Thanks to the BIR team and her bosses at Orix like Jim Thompson, she slowly adapted to this dramatic life-changing development and rejoined the workforce. But the efforts continued and thanks to advancements in technology, the Ekso-skeleton was developed. Assisted by Joanna Weakley and Dr. Chad Swank, Elizabeth Daane entered from the back of the room. All eyes focused on her as she slowly navigated her way through the tables and chairs in her Ekso-skeleton with the assistance of Chad and Joanna and crutches. Thanks to a computer and battery, Elizabeth was able to stand, walk and move around. It was obvious that the skeleton was not an easy device to maneuver. As Elizabeth demonstrated the skeleton walking through the room, she proved that she hadn’t lost her sense of humor. When asked a question, she responded, “I can’t walk and talk.”
But the skeleton does more than allow the patient to be more mobile. Elizabeth explained how in her case the skeleton’s ability to move the limbs also allowed her to exercise and deal with chronic nerve pain. As Elizabeth described it, “It’s not like the pain when you pull a muscle at the gym. It sounds crazy. So I don’t have normal sensation in my legs. But I feel kind of a sensation that is burning, stabbing, scorching pins and needles on steroids. And I feel it all the time. One thing the Ekso-skeleton does is changes the sensation. It doesn’t make them go away, but it moves them. And when you’ve had the same burning sensation in the same spot for five years, just shifting it from the back of your calf to the front of your calf feels like major relief.”
While Chad admitted that the Ekso-skeleton price ($175,000) is prohibitive for many, the future of such technology holds even greater opportunities for patients. He explained that it can also be used for stroke victims and anybody with a neurologic injury can potentially benefit from this type of technology.
As Elizabeth left the room, Robin returned to the podium and explained that they were going to switch gears to a TBI case. He introduced Julie Self, who had been a victim of a dramatic car accident. No, Julie had not been in the accident, but outgoing, bright daughter Audrey had been. In November 2013, the SMU coed had just celebrated her 20th birthday. She had been awarded a full academic scholarship and was studying at the Cox School of Business majoring in accounting. On November 21, the entire family including her father Mike and brother Avery undertook saving Audrey’s life and her recovery along with the medical staff. She remained in a coma for 30 days. Coming out of the coma, she was eventually moved to BIR, where “breathing was literally the only thing she could do.” For four months, the team worked with her. Despite her being physically dependent and having very limited short-term memory, the decision was to move her home in April 2014. Still she continued her therapy including occupational therapy at the Tom Landry Center for her hand. She connected with her therapist and talked about him when she got home. “This was a huge step for Audrey. It proved her short-term memory was finally beginning to improve.”
After two years, the Self family feels that the team of therapists and doctors are like family bringing Audrey through this journey.
Julie then introduced Audrey, who was seated at a nearby table. The 22-year-old looked nothing like the photos of the patient in the hospital bed that had been shown on the screen. She had a beautiful smile and a twinkle in her eye.
Audrey told the room of executives, philanthropists and community leaders: “Life is hard for everyone. We make the choice every day whether or not to make the best of what we have in front of us. I have always been someone who likes to set goals and plan ahead. But life is not like writing a book. We cannot plan for the unexpected. And we cannot control our outcome in everything we do. The little things, the baby steps add up to be the big steps. This impacts every aspect of our lives from recovery, relationships and overall life. With hard work, patience, perseverance and time, each baby step adds up and suddenly we realize we are making significant strides.”
She feels that she is the voice for those who cannot speak for themselves, and that “Hope means nothing is impossible.”
After the applause settled down, Robin told how last fall the Foundation team arranged for Don Wills and Don Jackson of the Ginger Murchison Foundation to meet Audrey. Then he asked her what her future plans were. She said that she’s going back to SMU in the fall.
Robin said, “Let me stop you right there.” He told her how 46 years ago he had been a student in Don Jackson’s finance class at SMU. Robin then let Julie pick up the connection between Don Jackson and Audrey. It seems that due to the accident, there had been some issues dealing with Audrey’s full scholarship and her returning as a part-time student.
Learning of the situation, Don got the situation straightened out and the next day the Selfs received a call saying that her scholarship had been adjusted to meet her needs.
Surprising all, Don presented Audrey with a SMU cap and told how SMU, like Baylor, would “be ready in every way possible to make her life easy. We are going to find her the best faculty. We’re going to find her the best ways to get around with our special people who work with students with special needs. Her scholarship can be for one hour at a time or one course at a time and she can take 20 years, if she needs to … like some guys. But she’s so clever, I expect her to be threw quickly…. I’m going to watch over her and make sure that she gets the best classes she can get. We’re gonna see her walk across that stage one day.”
Robin then made one request of Audrey: that when she gets her degree, she’ll return to tell of her journey at SMU. Without hesitation, she said, “Absolutely!”
As a follow up, Robin then asked Lauren Rachal to stand up. He told that when he met with the two Dons, they talked with Lauren, who had been Audrey’s physical therapist. When they saw a patient who was struggling just to stand with the help of three therapists, someone said, “How sad.” Lauren told them that, “If you walk through BIR one day, it would probably be depressing. But come back the next day and come back the next week and to see the progress that people make and the many things people do turning tragedy into triumph. It is one of the most motivating and inspiring places they could be.”