TRANSCRIPT:
Jen Lyman (00:06):
Welcome to the Cerebral Palsy Health podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that could be confusing or controversial and those that offer hope, but might not live up to the hype.
Jen Lyman (00:22):
I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics and try to shed light on how best to maximize and optimize health, participation, and quality of life for those with cerebral palsy.
Jen Lyman (00:41):
Welcome to the Cerebral Palsy Health podcast, conversations that count with experts who care. Until very recently, if you Googled cerebral palsy, the top website that showed up was not a medical provider, a cerebral palsy advocacy organization, or even a government entity. No. Instead, it was a cleverly disguised medical malpractice website. Now don't get me wrong, I have nothing against lawyers. I'm married to one and I love him very much, but I would never ever consider getting health information from him. Currently, that medical malpractice site and others like it still sit in top slots in Google searches. It got me thinking, where are we getting our health information about cerebral palsy when we search the internet? Lawyers? Supplement makers? What about when we search for information on medical marijuana? Now, who are we getting our information from, drug dealers?
Jen Lyman (01:32):
I decided to bring the true experts to you. My passion lies in educating the community about and celebrating the capabilities and abilities of those who have cerebral palsy while promoting their health, acceptance, inclusion, and meaningful participation in any and all of their desired endeavors. I have a unique role in the cerebral palsy research world as a disability advocate, research partner, and most importantly, a parent, all of which have given me the opportunity to get to know and work closely with the amazing clinicians and researchers who have devoted their lives to studying cerebral palsy and treating those with CP. I hope our conversations will shed light on topics that might be of interest to you and that you come away with information and resources that can be of benefit to your life. The inspiration for this podcast is my son Bower, who has quadriplegic cerebral palsy, visual impairments, and communication impairments. We live in New Orleans, Louisiana with my husband and Bower's dad, Chris, where we celebrate the Saints, Mardi Gras and Jazz Fest, food and dressing up in costumes for whatever the season may bring.
Jen Lyman (02:40):
Let me tell you about Bower. Bower was born in early 2005. His specific diagnosis is mixed spastic dystonic quadriplegic cerebral palsy along with optic nerve hypoplasia and cortical visual impairment. He was premature. He was born at 33 weeks. He weighed three pounds, 15 ounces, and he was born with a true knot in his umbilical cord. He was stabilized in the NICU and he did well. He was nursing, he was gaining weight and breathing independently. And then on the 12th day he developed a fever and he began to have episodes of apnea and bradycardia. As that day went on, these episodes grew longer in duration until he stopped breathing completely. The team rushed in to resuscitate him while we watched helplessly as they carried his limp body out to the intensive care wing of the NICU. We soon learned that he had developed necrotizing enterocolitis, an infection in the gut that can easily kill a preemie.
Jen Lyman (03:34):
We were told that we'd have to wait 48 hours to make sure that his stomach wouldn't burst. He made it through this 48 hours, but he spent the next six weeks in the NICU, recovering. After an exhausting stay, he came home on a heart monitor and with a ton of instructions. Over the next three months, Bower had terrible reflux and was very sensitive to his environment. He cried a lot, but he was nursing well, he was gaining weight and his apnea spells gradually went away. He started smiling more and he seemed to be developing a little personality. Around the same time, we started to notice that Bower really wasn't using his left side very well. So we brought him to the developmental pediatrician, and he sent him for an MRI, which showed that Bower had periventricular leukomalacia, which is a fancy word for brain injury to the white matter around his ventricles, and he was diagnosed with cerebral palsy.
Jen Lyman (04:23):
Bower started therapy immediately, and we began learning all we could about CP. When he was about seven months old we were in a mommy and me swim class when I noticed a weird twitching in his arm and eyes. He had developed seizures. The initial diagnosis was myoclonic jerks, but we were told they could rapidly lead to infantile spasms and a quick Google search of those was terrifying. Bower once again was hospitalized and immediately started on injections of ACTH in combination with a bunch of oral medications. We were lucky, and he responded to this treatment over the course of a few months, but he wasn't the same baby, he wasn't responding to us like he had before. On the heels of these seizures, we conducted a vision test and learned that Bower was also likely blind. He was diagnosed with optic nerve hypoplasia. So now he would need to be followed by an endocrinologist to adjust the multitude of endocrine issues associated with this new diagnosis.
Jen Lyman (05:18):
Shortly after that, Bower decided that he was no longer going to drink his cocktail of seizure meds. He clearly hated the taste, and we couldn't force them down his throat. The feeding specialist recommended a G-tube with a Nissen fundoplication for his reflux. So on his first birthday, Bower had his first surgery. Around his second birthday, he had strabismus surgery. And a few years later, he had a Baclofen pump placed. At the age of 10 he had bilateral hip and pelvic reconstruction followed by two months in a body cast. Then a few months later, he had bilateral foot reconstruction. He spent the following summer in physical rehabilitation in Baltimore. Since he was six months old, Bower's had extensive physical, occupational, and speech therapies. Hippotherapy, hydrotherapy, you name it. We tried and spent a ton of money on alternatives like acupuncture, craniosacral, [inaudible 00:06:11] method, Feldenkrais, and conductive education.
Jen Lyman (06:14):
We've cut back in the past few years, and he now has his therapies through school with check-ins with outpatient therapists for equipment needs. And we have chosen community-based activities instead that keep him strong and fit. He loves working out with his personal trainer several days a week. He swims as much as possible, and he rides his bike at school almost daily for cardio.
Jen Lyman (06:36):
Over the years, he's had to have growth hormone injections, he has taken Artane and Sinemet, oral Baclofen, Neurontin, and tizanidine to treat his spasticity and dystonia. Currently, he has regular Dysport injections, and recently he had his Baclofen pump removed. He has been seizure-free for over 14 years. He no longer has a G-tube and a few years back, he participated in the first FDA approved stem cell trial for CP, a topic we'll discuss in a later episode.
Jen Lyman (07:05):
He currently has an amazing medical team led by a neurologist, which includes a neurodevelopmental pediatrician, an orthopedic surgeon, and a physiatrist. In the past, he has been seen by specialists in endocrinology, genetics, pulmonology, cardiology, urology, gastroenterology, and so many more. I'm sure I'm forgetting a few. That's the clinical picture.
Jen Lyman (07:27):
Now let's get to know Bower. We call him monkey and his friends call him B. What you don't see in his medical history is the healthy, vibrant, stubborn, funny, obnoxious, smart eighth-grader who loves school and has many friends. With the help of his friends, he's been on the school soccer team and the school band. And he serves as the class DJ. He goes by the name DJ Bubbles. He enjoys swimming and he can hold his breath under water for so long that we call him Jacques Cousteau.
Jen Lyman (07:56):
He loves to go to music festivals. These days, he's into EDM and hip hop. Currently, his favorite artists are Macklemore, Pitbull, and Flo Rida. And his favorite song is "Shorty Got Low". He dresses up as Elvis on Halloween and his adjuster for Mardi Gras. His favorite food is sushi. He likes marching with the bands during the Mardi Gras parades, but he doesn't like it when the parade riders throw stuff at him. He's not very good at catching anything. He doesn't like it when people talk into microphones, and he has a fear of falling. Bower communicates using both words and technology. He loves to iChat with his grandma Mimi, and to hang out with his best buddy, Mr. Eric. He drives a power wheelchair, but not real well. He loves riding on our boat and hanging out on the beach. He likes to sleep in on the weekends and to watch the Saints on Sundays.
Jen Lyman (08:43):
He's been skiing in the Rockies and surfing in Costa Rica. Those who get to know him describe him as sarcastic and perceptive. I like to say he doesn't miss a beat. He has a great memory and has a gift for math. He likes Shel Silverstein poetry. And for his eighth grade community project, he chose handicapped parking enforcement, something I'm sure we can all get behind. He's in an inclusive classroom and is learning alongside children of all abilities, including those who are gifted and talented. He attends overnight camps each summer. He lives in a handicap accessible home in a city that embraces his differences. He laughs a lot. That's Bower. He's my monkey. And he's the reason I started this podcast.
Jen Lyman (09:23):
So I'll tell you a little bit about me. I'm a fitness fanatic. I love to work out. I love Pilates, running, snow skiing, water skiing, kayaking, surfing, and I'm a yoga instructor, all of which have definitely helped me stay sane and I hope stay present through the ups and downs we've experienced over the years. We love to entertain, and though it can be difficult here in new Orleans, I care about what my family eats and what we serve. We prefer organic, free range, meats and veggies, and we really don't eat sugary foods. I love making costumes, architecture of all sorts, clean and well-organized spaces. And I love adventure travel. I studied both psychology and dance in college. I gravitated towards dance and movement because I love the technique and discipline in combination with the creativity and self-expression offered through the choreography. Early on, I knew I wanted to work with people with disabilities in some capacity.
Jen Lyman (10:14):
And while I was in college, I began teaching dance to university students with disabilities and to hospitalized children, including those with cerebral palsy, which led me to go to graduate school for recreation therapy. My primary interest was, and still is, giving individuals with disabilities the ability to participate in experiences that promote self-expression, friendships, and socialization, or a challenging, fun, inclusive, and demonstrate to others that those with disabilities should not be excluded. I've worked as a recreation therapist in a variety of settings with adults and children with developmental and psychiatric disabilities. These include inpatient and outpatient rehab, inpatient, acute, and longterm psychiatric units, summer camps, group homes, even on the ski slopes of Colorado. I went on and to become a case manager for children and adolescents with significant disabilities in therapeutic foster care. In this role, I coordinated care for children across all settings, making sure that their needs were met in the schools, in the foster homes, with their outpatient therapies, and within the legal system. I often found myself fighting a system that created huge barriers to participation and inclusion for the kids I worked with.
Jen Lyman (11:23):
The agency I worked for knew my background was in recreation therapy, and after a while they asked me if I could create something different for the kids that could improve upon the respite program we had in place. So I created Adventure Respite, a therapeutic respite program that took kids on weekend camping trips and outdoor adventures. The program managed to effectively use Medicaid respite funding while truly giving the kids experiences they could never have imagined. The program is still up and running today, some 20 years later or so.
Jen Lyman (11:53):
After Bower was born, I was completely consumed with his care. But, one of his doctors knew I was interested in research and developmental disabilities and recommended I attend the American Academy for Cerebral Palsy and Developmental Medicines professional meetings. Through this organization and others like it, I've seen firsthand the dedication and commitment to excellent research and patient-centered care of the clinicians and researchers in this field. I've worked on research initiatives, books and presented educational seminars with some of their members and serve on the CP Academy's Community Council.
Jen Lyman (12:26):
Once Bower started preschool and had a good schedule, I went back to school and got certifications in Conductive Education, Seating, and Powered Mobility, all of which have helped me work with the school system to develop ways to best include him while also challenging him and encouraging him to be an active participant in the classroom. In 2014, I presented at the NIH's State-of-Science in Cerebral Palsy, an international symposium where organizations and researchers were reporting on and planning for the future of research in cerebral palsy. There were important initiatives that came from this meeting. But one thing I saw that I could help with was to create a unified voice of all the national cerebral palsy nonprofits and professional organizations for the purpose of research, advocacy, education, collaboration, and awareness.
Jen Lyman (13:11):
So later that year we pulled together and started the Cerebral Palsy Collaborative, and I've been coordinating it ever since. I also serve as a board member for CP NOW, a fantastic nonprofit that created the award-winning Cerebral Palsy Tool Kit, which was another initiative that came from that NIH meeting. Last year, I once again decided to go back to school in health education so that I could better hone my skills to fill the gaps between the medical management of cerebral palsy and how people are educated and receive health information about cerebral palsy in the community. I sincerely hope that this podcast will be something that can help do just that. Thank you for listening.
Jen Lyman (13:50):
Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcasts and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at jblyman@mac, that's "m-a-c" dot com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and or any other medical concerns with their personal medical team.