The Medical Community Is Changing the Way It Views Cerebral Palsy
I was fortunate to have the opportunity to attend the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 2018 Annual Meeting. The conference is a series of courses and workshops for medical professionals to discuss the latest scientific research on the causes and effects of cerebral palsy. As a guest of the Cerebral Palsy Foundation, one of The Mighty’s most active nonprofit partners in the disability space, I was excited to discuss the power of storytelling and information sharing to transform the lives of people with disabilities. As a person with cerebral palsy due to a birth injury, it was an opportunity to learn more about the latest advancements in understanding and treating my condition — and also brought back deeply personal memories and emotions from my childhood.
As a child, I went through years of grueling treatments for my cerebral palsy. When I was 18, tired of my life being controlled by my condition and what others wanted for me, I quit physical therapy and cut myself off from virtually everything related to the medical community surrounding CP. I just wanted to live my life without constantly feeling like I needed to be fixed.
I began an ongoing journey towards self-acceptance — and I’m proud of who I’ve become. But as a woman heading into middle age, I’m experiencing the long-term impact of living in a body affected by spasticity and chronic pain, so I’ve taken more of an interest in the latest medical advancements. I realized my problem wasn’t wanting to avoid treatment that might help me, but feeling like I was excluded from conversations about what was best for my body and my life. In the past, I didn’t feel like the medical community cared much about adults with cerebral palsy. I am very pleased to say that is now changing.
I learned so much from attending this conference. Here are six important messages I want to share with the cerebral palsy community about the latest research and what it means for our lives.
1. The medical community cares about the needs of adults with cerebral palsy.
According to several attendees I spoke with, AACPDM has devoted more attention to the needs of adults with cerebral palsy over the last several years. As most of us with CP know, we are often left behind when we turn 21 and “age out” of childhood services. But this is changing as physicians and therapists watch the pediatric patients they care for grow up, and are naturally concerned about their long-term well-being. Researchers and clinicians are beginning to view cerebral palsy from a lifespan perspective and study how people with CP progress through life physically, psychologically and socially. The conference offered a “Lifespan Care Transitions” track — a list of recommended courses for professionals interested in understanding the impact of CP beyond childhood. Most of the courses I chose to attend were on this track.
The AACPDM professionals are in this field because they care about us. If you’re an adult with CP who fell through the cracks and believes medicine can’t offer you anything new, I encourage you to find a specialist and give it another chance. If you’ve had negative experiences in the past as I have, remember you can pursue — or decline — any treatment being offered to you. It’s your choice to make now.
2. Scientific knowledge is for everyone.
The AACPDM presented an award to Rachel Byrne and the Cerebral Palsy Foundation for CP Channel, an app to connect people with cerebral palsy and their families to information and resources. The app features videos from both medical experts and people with CP on various key topics, from diagnosis and treatment to finding friends, relationships and a job. Everything is simple to navigate and easy to understand, regardless of your level of expertise. In addition to its tremendous value as a source of information, the app promotes a new way of viewing science and medicine: as knowledge that should be accessible to all.
In her workshop at AACPDM, Rachel Byrne spoke about the importance of using plain language when writing about medical topics. She offered recommendations for making written and video content easily understandable, such as using active voice rather than passive voice whenever possible and breaking content into short paragraphs with subheadings to make it more organized. The workshop suggested something I have long felt — that there is no benefit to making medical and scientific information overly complicated. Indeed, using plain language can make things more clear for everyone, from a Ph.D. to someone who didn’t finish high school.
The medical community is beginning to get this message, as evidenced by its high level of support for the CP Channel app and other community resources, but there’s still work to be done. Don’t get me wrong, I enjoy a good vocabulary word as much as the next person — like convoluted, which perfectly describes the vast majority of scientific papers. But as someone whose job revolves around creating engaging, shareable content, I also know some words are best used in moderation. Sometimes you need a scientific term to specify a body part or muscle group, but is it necessary to say “etiology” when “cause” or “origin” will do?
3. People with disabilities including cerebral palsy should be involved in research being done about us.
One of the most important principles of the disability rights movement is “nothing about us without us.” This philosophy is often applied to issues such as educational inclusion and accessibility of public buildings, but people with cerebral palsy and other disabilities are frequently left out of the process when researchers study our medical conditions. That’s why I was pleased to see multiple presentations at AACPDM that illustrated how patients and families can be part of the research process.
One workshop I attended discussed how their study used the principles of participatory action research to develop the PEDI-PRO (Pediatric Evaluation of Disability Inventory — Patient-Reported Outcome), an important measurement scale used in physical and occupational therapy. Participatory action research (PAR) is a partnership-based method in which the individuals and/or groups being studied are included as collaborators rather than treated as subjects. PAR treats both researchers and study participants as experts with their own essential perspectives to share, and participants are involved at every step of the process. For example, in this study the research participants, referred to as co-researchers, not only offered their opinions on test questions proposed by the researchers, but also suggested entirely new questions, many of which were actually used in the final product. Although PAR is often considered to be a qualitative research method, it can be used in quantitative research and to develop quantitative measurement tools. Even if your research involves studying a laboratory model of the synapses of the brain, you can still consult with those whose synapses you’re seeking to understand.
The medical community is moving beyond past prejudices and recognizing there are many people with cerebral palsy who are highly educated and capable of being reviewers, consultants and full-fledged researchers. Several professionals at the conference spoke to me about having or wanting a professional with cerebral palsy to review their research papers, offer feedback and alert them to outdated language and other problematic content. My background includes a Master’s degree in psychology and years of community involvement as a disability rights advocate, public speaker and editor, so I’d be able and willing to help — and I’m far from alone. There are hundreds if not thousands of other similarly qualified people who can bring both lived experience with disability and professional expertise to the table. With that said, it’s important to remember that no individual can speak for an entire group. Experts of all backgrounds must be conscious of other viewpoints in our community that may differ from our own. We must recognize the limitations of our knowledge, and not be afraid to seek out other diverse perspectives.
The first step towards more inclusiveness in research is recognizing and respecting the competence of people with cerebral palsy and our families. I participated in multiple discussions during the conference about how and even whether to share the results of some studies with patients and their families. Underlying this debate was the unspoken question: can non-scientists understand this material? Can they be trusted with this knowledge? I believe the answer is yes, and any other answer would be unethical. People with cerebral palsy and our families have the right to know what science can tell us about why we have CP, how it affects us and what the future may hold. But even more importantly, we should be involved in deciding which questions scientists should investigate next, and help ensure the results are presented in a way which is accessible, relevant and empowering.
4. People with cerebral palsy can succeed in life.
Researchers are studying how adults with cerebral palsy fare in life, and the results are promising. I attended a presentation by Dutch researchers who have been following the progress of teens and young adults with CP as they pursue independent living, employment, develop friendships and more. They used GMFCS levels to examine the effects of CP severity, which I felt was important as I have fairly severe CP. (I’m a GMFCS IV, I discovered.) They found that most young adults with CP and no intellectual disability were able to live independently. Although those with a higher GMFCS level faced more challenges, most were still able to live independently with support. Most importantly, having severe CP did not limit a person’s ability to form strong friendships.
During this workshop, there was considerable discussion about sharing the results with patients and families, and, of course, I advocated for transparency. Most of the medical professionals present agreed, but there was debate on how to discuss negative information. I pointed out that sometimes it’s all about perspective and how you frame results. For example, although one of the studies found that people with cerebral palsy who also have intellectual disabilities are less likely to live independently and have strong friendships as adults than people without ID, that doesn’t mean it’s impossible for them. It means they face additional challenges which need to be addressed. Knowing this statistic gives clinicians an opportunity to change it by working more closely with patients who have combined CP and ID and their families.
5. Chronic pain is a major issue for people with cerebral palsy.
People with cerebral palsy, family members and researchers alike are very concerned about the prevalence of chronic pain in adults with CP. According to the AACPDM, up to 75 percent of adults with cerebral palsy live with chronic pain. There were multiple workshops on chronic pain; the one I attended discussed research investigating the origins of chronic pain in CP. Researchers now believe the brain damage that causes cerebral palsy also disrupts and permanently changes the wiring of the brain’s pain circuits, making people with CP more sensitive to pain and more likely to develop chronic pain. Since our pain circuits don’t function properly, people with cerebral palsy can become sensitized to pain after repeated painful experiences in infancy and beyond. Researchers believe in the future, they may be able to minimize the hypersensitivity of pain circuits by using certain non-opioid pain management medications to treat babies who are born prematurely, as well as others at risk of developing cerebral palsy.
Unfortunately, the research on managing pain in adults with cerebral palsy is still very limited. Both researchers and attendees were deeply concerned about this, and it led to considerable discussion. So far, the recommendation is for doctors to use current spasticity management techniques, plus the same methods for treating chronic pain as they would for people without CP. However, since our brains and pain circuits are wired differently, it seems likely that specific research on treating pain in cerebral palsy would lead to better recommendations for medication and therapies. Based on the research, the presenters do not believe opioids are appropriate for managing cerebral palsy related pain in the vast majority of cases. In fact, they may increase the likelihood of chronic pain. Several attendees, including myself, expressed an interest in studying CBD oil as a treatment for spasticity and chronic pain in cerebral palsy. Attendees also discussed vaginismus (painful vaginal penetration) and cerebral palsy, which seems to be common and related to spasticity, but has not been scientifically studied.
As an adult with cerebral palsy who lives with multiple forms of chronic pain, I was encouraged by how much researchers and clinicians care about addressing this issue. Even though we don’t have the answers yet, I encourage you to find a cerebral palsy specialist and be honest about your pain. Many doctors are trying different treatments and studying what works in their patients, even in the absence of a scientific consensus. There is hope.
6. Advocacy is the most important “treatment” for cerebral palsy.
Research is a slow process, and it may take years before science has the answers to questions people with CP and our families are seeking answers for right now. But as Cerebral Palsy Foundation CEO Richard Ellenson said, “The spirit does not soar incrementally. It soars by changing its belief system.” Regardless of how long it takes medicine to prevent brain damage in infants or relieve chronic pain in adults, transforming society’s attitudes towards people with cerebral palsy and other disabilities will improve our lives today. Our stories are a powerful remedy for the ills of ignorance, prejudice and fear. Talking openly about our lives as so many of us do here on The Mighty can help scientists and the general public understand how we move through the world, the joy we experience and the challenges we face. People with cerebral palsy will benefit from new scientific developments, but we aren’t broken and we can live full, happy lives in a society that understands and respects us. Let’s keep fighting to make that treatment universal.
Getty image by Demaerre.