Jefferson Moss Rehabilitation Research Institute is grateful for all of the individuals who have shared their time, energy, and insights with us over the years by participating in our research to support our mission. During Brain Injury Awareness Month this year, we are excited to highlight Lynnette Bailey, one of our remarkable participants who has contributed to our research on traumatic brain injury. She recently completed our GetUp&Go study, a randomized clinical trial led by Amanda Rabinowitz, PhD. The goal of the study is to evaluate whether a remotely delivered program increases physical activity and improves participants’ mental and physical health after brain injury. The program includes one-on-one sessions with a therapist as well as a mobile health application (RehaBot). In this interview, Lynnette provides insights into her background, her lived experience after brain injury, and her involvement in research at our Institute.
Can you tell us more about yourself?
I am a 46-year-old woman, born and raised in Philadelphia. I have two adult daughters, aged 22 and 26. I am the oldest of my mother’s seven children, but I am one of 16 in my family. I have 13 nieces, 13 nephews, five great-nieces, and two great-nephews – I keep in contact with all of them, and I make sure to talk with each of them on their birthdays. I was the first on my mother’s side of the family to graduate high school (in 1997). English and Math were my favorite subjects – I have always loved reading and numbers. I was a first-time homeowner at the age of 27, and I worked as a bookkeeper until my brain injury. My favorite foods are fried chicken and baked macaroni and cheese. I enjoy reading and completing do-it-yourself projects around the house, but my favorite thing to do is watch TV shows and movies. I love true crime, but I also enjoy comedy and drama. My favorite show is Law and Order SVU.
What led to your brain injury, and what happened afterwards?
Unfortunately, my brain injury was caused by domestic violence. On my third wedding anniversary (05/30/2016), my [second] husband struck me in the head with a hammer. After his attack, I was in a coma. I sustained a traumatic brain injury, and I experienced transient cerebral ischemic attacks, chronic post-traumatic headaches, dizziness, difficulty concentrating, and major depressive disorder. I was in the hospital (Einstein/Jefferson Health) for about one month. Upon discharge, I went to Jefferson Moss-Magee Rehabilitation for about one month, where I received physical, occupational, and speech therapy. I also underwent a cranioplasty to repair my fractured skull, and I had to wear a helmet for about three months while it healed. I was depressed after I was discharged from inpatient rehabilitation. I attended individual and group therapy for almost three years, which was helpful. Because of my injury, I now wear a hearing aid and reading glasses, and I was diagnosed with overactive bladder. I also have numbness from my right elbow to fingertips, and I am right-handed, so I have a caregiver who comes every day to help me with cooking, cleaning, laundry, and transportation to appointments. I still live in the house where I was attacked. Early on, I didn’t want to be there; I often had someone stay the night with me, but I’m more comfortable there now. I don’t let my brain injury define me, but I know that it’s a part of me. I’m not uncomfortable talking about it – I’m okay with it.
How did you decide to participate in brain injury research studies?
I always felt welcomed and respected as a patient at Jefferson Moss-Magee Rehabilitation, so I asked to be contacted to participate in research, as a way to make me feel useful. I’ve always loved solving problems, and I would have participated even without being compensated.
What has your experience been like as a participant in our research studies?
A positive one! Rather than just answering questions on the phone, the GetUp&Go study made me feel like I was an active participant. I would have never thought about a program like GetUp&Go, but it gave me something to look forward to … a goal to reach. It awakened something in me that I didn’t even know I had. After my brain injury, I became very introverted, and it didn’t bother me to stay in the house all day with my caregiver. After participating in the GetUp&Go study, I love going outside and exploring my neighborhood.
What have you enjoyed most about being part of our research studies?
I’m just grateful! The GetUp&Go study gave me a reason to be more active, and it reignited my weight loss journey. My goal when I first started the program was to walk 20 minutes per day for three days each week, but I quickly realized that I enjoyed walking. I ended up walking daily for 162 days straight! I even joined a gym because of this program, which is something that I never would have considered if I hadn’t enrolled in this study. Participating in the GetUp&Go study motivated me – it gave me new goals to work on.
What would you say to someone who is considering getting involved in research studies at our Research Institute?
I would encourage them to go for it! It definitely won’t be a waste of their time. They will benefit from the experience physically, mentally, or emotionally. It will give them the opportunity to have new experiences and meet new people.
Everyone’s brain injury journey is different, and for many, brain injury can have long-lasting impacts. Raising awareness of the longer-term needs of individuals with brain injury is an important part of Brain Injury Awareness Month, and ongoing research at our Institute is dedicated to better understanding outcomes after traumatic brain injury and developing new treatments. We appreciate Lynnette sharing her story and allowing our Institute to be part of her path to recovery.