Resources for adults with cerebral palsy, such as research and educational presentations, plus an interactive forum you can join today!

 

Dr. Amy Bailes webinar on what is a learning health network.

What is a Learning Health Network – and why should you care?

Amy Bailes, PT, PhD

Amy Bailes, PT, PhD

On Monday, June 21, at 8 pm ET, we invite you to tune in for our next MyCP Webinar, to discover why the Cerebral Palsy Research Network is working to become a learning health network and how doing so will enhance our efforts to improve health incomes.

The webinar will be presented by Amy Bailes PT PhD, leader of the CP Research Network’s quality improvement initiatives. She will outline how learning networks – that often form a registry at their core – can quickly gather and share data that rapidly improve treatment experiences for patients.

During the 40 minute webinar, Dr. Bailes, a physical therapist and researcher at Cincinnati Children’s Hospital, will also outline the CP Research Network’s efforts to become a learning health network and how that ties in to clinical initiatives we already have underway.

“Taking the most effective practices from the best CP centers across the nation and spreading those practices in a systematic fashion, will have profound impact on the health of people with CP,” says Dr. Bailes. “This is how we should be caring for all people with CP.”

Learning health networks seek to improve outcomes through a combination of research and quality improvement (QI) initiatives. While some research studies can take years to complete and can require more time to affect a change in practice, QI initiatives can drive systemic change and bring results as early as six months.

“While QI cannot answer fundamental questions about treatment effectiveness or discover new therapeutic interventions, it can be used to dramatically improve health outcomes very rapidly,” says Paul Gross, President and Chief Executive Officer of CP Research Network.

Members of the community, clinicians and researchers interested in learning more about the CP Research Network’s drive to become a learning health network can tune in to the June 21 webinar by registering on the sidebar at the top (or on the MyCP Webinar page).

The Shrader children -- triplets to the right with sister Cate on the left.

Preparing for College – Part 3

Carol Shrader, mother of four, two of whom have cerebral palsy.

In the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years…

The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long.

“I know, right?” my husband Wade consoled, observing my nervous disposition. “I have been thinking about this day for 18 years!”

Benjamin, our triplet with spastic quadriplegia, lived at home with us and his younger sister Cate for the first three years of college, but getting around campus independently was still a big deal.

He was only a week and a half into the first semester when we hit our first snag. Benjamin was heading across campus in his wheelchair with a fellow student and following her lead. When she pointed at the curb where they needed to cross the street and asked him if he could make it, he assumed it was flat. Unfortunately, his depth-perception issues prevented him from knowing for sure. It wasn’t flat. He drove right off the curb.

His professor called me, and I rushed to the campus to find my shaken son, clearly in pain and surrounded by college kids, security, and the head of the theatre department. The footplates on his wheelchair were the only thing that prevented him from landing on his face. His feet still took the brunt of the 300-pound weight of him and his wheelchair.

I have never wanted to jerk back control of a situation more – and it was clear I needed to.

Quickly rearranging my schedule, I ensured I could be on campus the rest of the school year. I assisted between classes, shuttling Benjamin between the upper campus and the lower campus where theatre classes were held. I brought him lunch. I took care of his toileting needs. I brought him back to campus for late night events and drove him wherever he needed to go, ensuring he could fulfill his college kid schedule.

At the same time, I worked to find ways to help him achieve independence. I began by phoning the ADA compliance officer and asking for the sidewalks to be revamped on campus. They needed ramps so Benjamin could navigate them safely. When the ramps were consistently blocked by mail delivery vehicles, maintenance, and even professors, I called the dean.

With problems still arising, I called the university president and, in my sweetest Mama Bear voice, told him that Benjamin could not succeed at his college if he could not ever get into the classrooms. A few weeks later, every ramp on campus had been repainted with the words “DO NOT BLOCK” in bold letters.

Meanwhile, Benjamin worked with the ADA office to secure a scribe for tests. The professors assigned a student to copy their notes for him. I was his scribe at home for each assignment. We even burned the midnight oil together, working on a 24-hour theatre assignment to write a play overnight so his team could memorize lines and perform them the next day. Poor Benjamin had to dictate to a scribe who fell asleep between lines.

The triplet’s freshman year continued to be a long year of learning for all of us. Mason was doing well, living a relatively independent life on campus at his college. Claire, my triplet without cerebral palsy, had moved onto campus about half an hour from our home. Throughout her four years, she called, texted, and sent video messages. Sometimes she would share a funny story about life on campus; sometimes, she just needed her mom and emotional support.

When April arrived, I noticed a shift in Benjamin. During a course selection meeting with his advisor, he took an assertive new tone.

“I need to arrange my schedule so that I am at the upper campus for three days a week and the theatre campus for two days a week or vice versa,” he said. “I need for my mom to be able to leave me on campus.”

By the time Benjamin began his sophomore year, he had a personal care team trained to assist him. Having a personal care attendant meant he could be independent of me and could organize his study time, extra-curricular activities, and classes the way he wanted. By his senior year, Benjamin felt confident to move into a newly built dorm with accessible units. It was an enormous step.

Initially, Benjamin didn’t love staying in the dorm, but he grew to enjoy his independence. It was empowering for him to be in charge of his schedule, meals, and life. The accessible dorm and the ultimate willingness of the college administration gave him this opportunity. He had a great college experience participating in theatrical productions as both an actor and a dramaturg and was elected to homecoming court twice in four years.

Benjamin Shrader in his second round of being elected to the Homecoming chord.

Benjamin Shrader at a college graduation celebration.

Benjamin graduated Magna Cum Laude with a major in dramatic writing and a minor in political science. When he presented his final script as a read-through performance for his senior project, every single one of his team of PCAs was in the audience because they were so invested in him.

His brother Mason was recently accepted to his second Master’s program in Anthropology, focusing on Bio Archaeology at Texas Tech. Claire is currently in her second semester of Occupational Therapy School at Thomas Jefferson University in Philadelphia.

Claire enjoyed a semester studying abroad in Argentina and founded sibling workshops for the brothers and sisters of differently-abled children worldwide. When she got an internship with an autism foundation, she discovered they had nothing for siblings, so she created a program. She went on to graduate Magna Cum Laude with a major in Spanish, a minor in English, and all her pre-occupational therapy courses.

When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought would place an undue burden on their teachers graduated with honors – lots and lots of honors.

I would like to tell them that when Benjamin rolled across the stage with his diploma, the faculty were the first to stand in what turned into a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day-to-day basis, he encouraged his fellow students, and set the bar high for their performance.

I would like to show them photos of Mason digging in the ancient acropolis in Majorca and receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that his honors project won the Phi Beta Kappa award for best honors project at his school. They missed the chance to list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.

The Shrader children -- triplets to the right with sister Cate on the left.

The Shrader children — triplets to the right with sister Cate on the left.

They also don’t get to brag about our soon-to-be Occupational Therapist Claire who is already changing the world for young people with CP and their families.

College looked different for each of my three. But they each found the school that matched their needs, the path that worked for their personal dreams, and made it not just a possibility but a reality.

College IS possible for young people with CP. They can make their mark and change the world. They can recolor the way society views students with CP. They can affect change. They CAN succeed.

Mason Shrader on an archeological dig in Spain

Preparing for College – Part 2

Carol Shrader, mother of four, two of whom have cerebral palsy.

[In the second installment of her moving three-part story, triplet and CP mom Carol Shrader describes her son Mason’s experience of finding independence as he left home for college for the very first time.]

When you’re a mama bear who has raised four children with very different needs, it’s instinctive to be a helicopter parent. But as I stood on the sidelines watching a college administrator empower my son Mason, I knew the time had come to take a backseat.

“Mason, I’ve heard what your mom thinks you need,” he remarked. “What support do YOU think you need to be successful?”

He may not have made my list of favorite people right then but, as Mason replied with his thoughts, I recognized he was encouraging my son to take charge and have a voice in his own support structure. He was also empowering me to hand over the controls. I could tell by Mason’s face that he was happy. I knew this was the place for him.

Mason was born with spastic diplegic CP, and while he is physically more independent than his brother Benjamin, who has spastic quadriplegia, he has a longer list of medical issues.

When my triplets’ college years arrived, our first hurdle was to find the proper support for our sons to sit for their SATs. I spent hours finding a test site that provided the accessible space we needed for the boys and would allow for scribes to help them write their answers. I filled out multiple forms to ensure the scribes would be permitted and assembled the required medical documentation.

With all the approvals in place, the first test date approached. But even with the best-laid plans, there were obstacles we could not anticipate. My trio was as prepared as I could help them be. They were ready. Then the school called the day before the exam. The scribes had decided they didn’t want to work that Saturday, and the school could not replace them. They would “try” to hire someone for the next test date. Claire took it that day, but Benjamin and Mason had to reschedule. They ended up taking the SAT twice and gained good scores. The relief would carry us through the college application process and all that it entailed.

Our college wish list consisted of schools with excellent access, a manageable student population, and programs of interest. We visited campuses all over the country. We toured schools in Philadelphia, Minneapolis, Chicago, and their more expansive geographic areas, and checked out small liberal arts colleges in California, Mississippi, and Arizona.

We saw great colleges with insufficient access and colleges with excellent access but seemingly a million students. In the end, all three of my triplets chose small liberal arts colleges that offered them an intimate learning environment.

Once Mason had secured his favorite college choice, I helped him put everything we thought he needed in place to live independently. While his campus was only 15 miles from our home, we had made a cross-country move just a few weeks before college started. We had to find Mason doctors to manage his cerebral palsy and his related high blood pressure caused by problems with one of his kidneys, as well as his ulcerative colitis. I had equipped him to talk to doctors himself, but I had failed to teach him to talk to pharmacists. We would have more than one tense mother and son discussion about refilling meds BEFORE they ran out. Equipping him to call in his prescription refills in time and pick them up before he missed a dose was a skill I had overlooked as I prepped him for college. The truth is you can’t predict everything, and you will always be problem-solving on the go.

Mason navigated campus with an electric scooter and his power sticks. Like most moms sending her first born to college, I worried a lot and followed all the campus social media, hoping to get a glimpse of him without nagging him to send me photos.

I was nervous about the electric scooter he took to navigate campus. What if it had negative connotations for him? There was no need to worry. It didn’t. When he joined a fraternity, the president made a point of climbing on the back of Mason’s scooter with the official flag. “We’re going in last!” the president enthused. Staff and students together nicknamed that scooter and were disappointed when rain the weekend of graduation prevented “Bocephus” from attending the swiftly organized indoor ceremony.

Mason threw himself into campus life, serving his fellow students as a resident assistant in the dorms. He was elected student body senator.

When Mason called home his needs varied from emotional to physical, to help with an essential decision like which bow tie matched which shirt. My personal favorite phone call was when he needed me to stop by campus to button the little tiny buttons on his dress shirt.

Mason’s college was not perfect from an accessibility standpoint – the sidewalks were in a deteriorated state, and navigating them in the scooter could be hazardous. The beautiful old buildings had elevators that broke down and didn’t work almost as often as they worked, but the administrators were committed to Mason and his needs.

Mason Shrader on an archeological dig in SpainThe professors recognized his abilities far exceeded his limitations and worked to maximize his opportunities. He thrived, even studying abroad on archaeological digs in the Yucatan of Mexico and off the coast of Barcelona, Spain. Mason worked hard and he had chosen a school with the heart necessary for his success.

He graduated Summa Cum Laude in four years with a major in Classics (Greek and Latin), a major in Anthropology, and a minor in Archaeology. His picture hangs on the wall of the student center as one of just four students in his graduating class chosen for the Hall of Fame. Mason earned this accolade because he took the heart his school poured into him and gave it back with dedication.

Today, Mason is finishing up a Master’s in Classics at Texas Tech University. Before the pandemic, he was living alone, on campus a thousand miles from home.

Whatever the problem, Mason has taken it in his stride. Despite living independently, fine motor skills are challenging, but we work out the solutions.

When he started to look like a hairy mountain man with unkempt hair, beard, and nails, we organized a reconnaissance day sending him on Uber rides around the city to find somewhere he could get his hair and beard cut plus a manicure and pedicure. Now Mason knows exactly which strip mall can serve all those needs and heads there every six weeks.

Mason has CP which has thrown some curveballs his way over the course of his life. But when he lectures, cerebral palsy is the last thing on his students’ minds. Recently, I had the opportunity to speak alongside Mason to a class of students working on their masters in special education. We were in fact, lecturing about CP and the impact these students would have as teachers. But when Mason started speaking about his archaeological research, the entire discussion shifted and the previously quiet class began raising their hands to ask questions. Even they, who were there specifically to discuss CP, had completely forgotten that Mason is affected by this challenge.

I can’t help beaming with pride.

(For more information on preparing for college, visit this resource developed by Carol Shrader from her experiences.)

CP Research Network Launches MyCP Fitness Program with Staying Driven

CP Research Network Launches New Fitness Program

We are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members!

Steph 'The Hammer' Roach, Adaptive Fitness CoachStaying Driven - Virtual Adaptive FitnessStaying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer” Roach. An adult with CP and a former CrossFit trainer and gym owner, Steph shifted her business during the pandemic to virtual classes for people with disabilities. She and her staff of adaptive fitness trainers offer multiple classes a week for people with disabilities.

The CP Research Network has arranged for MyCP members to be able to attend up to two classes per week, free of charge!

To be eligible, you need to complete these registration requirements:

  1. Be a current member of MyCP (joining is free). Parents of teens under 18 need to be the active member.
  2. Participate in at least one MyCP survey (a list of available surveys can be seen here).
  3. Sign up for a free Zoom account for class registration.
  4. Read and sign the waiver for Staying Driven and the CP Research Network on the sign-up page

Are you ready? Go sign up!

How it works:  MyCP members who follow the steps above will receive an email from the CP Research Network with the link to the Zoom Registration for the fitness class with Staying Driven. Steph, or one of her other coaches, will run the class. The participant uses the link to register for each class.

When? Saturdays at noon ET/9 am PT or Tuesdays at 7 pm ET/4 pm PT

What should you bring? A water bottle, a hand towel and a positive attitude.

What about resistance or weights?  Classes are adapted for people of all ages and abilities. Steph will encourage you to gather items from around your house or apartment to participate. If you have a personal care attendant or a caregiver that wants to be involved, they are welcome to attend to assist.

What if I cannot make these times or I want to work out more often? The MyCP Fitness program only supports these two days and times. Staying Driven has monthly memberships that will allow you access to all of the regular programming if you are interested.

Do I need a note from my doctor? A doctor’s approval is up to your discretion. Think of it as joining a gym — the gym doesn’t require a note from the doctor, but the waiver makes clear that you are responsible for making the appropriate health choices for yourself.

Join us for this new and exciting program made possible through your generous donations to the CP Research Network!

Exercise and Physical Education Part 4

Exercise and physical activity in spastic diplegia – older children, adolescents, and adults – part 4

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

In the last post I included links to the guides Fit for Life, Fit for Sport, and exercise and physical activity tips for the younger child. This post will address exercise and physical activity tips for the older child, adolescent, and adult. I wrote them with therapists at Gillette.

  • For all types of exercise, a referral to either a PT or OT is recommended, even for just one or two sessions. There are also wonderful athletic trainers who have advanced training in working with people with physical limitations. Trainers who lack this specialized training, however, may advise overexercising, which can lead to injuries. Consider calling the fitness centers or gyms in your area to check if any of their staff have training in adapting exercise programs for people with physical challenges.
  • If you’re working with weights, consider getting expert guidance on how much weight is safe to work with and how many repetitions to perform.
  • Fast walking can achieve many of the same benefits as running and may be safer for some people.
  • You have many options when it comes to cycling, including outdoor and indoor (static) bikes. Three-wheeled bikes may be ideal for those with balance issues. You can purchase blocks (trainers) to convert an outdoor bike to an indoor bike when the weather doesn’t allow for outdoor mobility.
  • A therapist can offer guidance on the appropriate size and type of sports wheelchair to use and can check to see if you are eligible for any funding aid to purchase one.
  • A few tips for swimming:
    • Consider scheduling a few sessions with a pool PT or OT to develop an appropriate swimming program.
    • If you use a wheelchair, call around to find a pool with PVC pool chairs and a ramp.
    • A pool temperature of 88–94 degrees Fahrenheit can be very therapeutic and can help reduce pain and stiffness.
    • Nonskid pool shoes are recommended for walking from the changing room to the pool and back to avoid falls on wet pool decks.
    • Swim paddles, kickboards, flippers, etc. can be used to increase resistance for muscle strengthening.
  • You can find many excellent videos online to guide you through adaptive yoga, tai chi, and other such programs. The National Center on Health, Physical Activity and Disability (NCHPAD) has some.
  • Incorporate as much exercise as you can into the normal day (for example, cycling to school, after-school activities, or work).
  • Most school programs include at least a weekly session of physical education. Try to ensure that the program includes the child or adolescent’s needs as much as possible so that they can participate in the sport, even if this means adapting the rules, the equipment, or the mindset of the teacher or coach. Forcing the child or adolescent to sit out their school physical education period is a missed opportunity both in terms of the benefits of exercise and the camaraderie and social experience of teamwork. Research has shown that school-based exercise programs are beneficial for children and adolescents with CP.

I’m very respectful of the fact that the people who live with physical disability will have other tips. Your comments are very welcome over at MyCP.

Exercise and physical activity in spastic diplegia – part 2

Exercise and physical activity in spastic diplegia – part 2

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

Thankfully, with our lockdown here in Ireland COVID case numbers are decreasing. The 5km restriction here means that both my photo and I have to stay local! The photo this week is of an old mooring buoy for ships (dating from 1908) that sits forlorn on the headland.

Last week I looked at exercise and physical activity in children and adolescents with cerebral palsy (CP) but what about in adulthood? Consistently strong evidence demonstrates that people with CP participate in less physical activity and spend more time engaged in sedentary behavior than their able-bodied peers throughout the life span [1]. Studies have shown that:

  • Adults with CP who reported preserved mobility throughout adulthood attributed it to regular physical activity, participation, and maintenance of strength, balance, and overall fitness [2].
  • Adults with CP who engaged in regular physical activity were at lower risk of decline in mobility. Deterioration in gait was strongly associated with inactivity [3].
  • “What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan?” was the number one research topic identified in a collaboration between stakeholders, to set a patient-centered research agenda for CP (Research CP) [4].

The World Health Organization (WHO) notes that participating in regular physical activity reduces the risk of many health conditions, including coronary heart disease and stroke, diabetes, hypertension, colon cancer, breast cancer, and depression. Additionally, physical activity is a key determinant of energy expenditure and thus is fundamental to energy balance and weight control [5].

Verschuren and colleagues (2016) published a set of exercise and physical activity recommendations for people with CP under the following headings [6]:

  • Cardiorespiratory (aerobic) exercise
  • Resistance (muscle strengthening) exercise
  • Daily moderate to vigorous physical activity
  • Avoiding sedentary behavior (i.e., not being physically inactive)

The following table details their recommendations. Note that these are lifetime recommendations; it may take at least eight to 16 consecutive weeks of exercise to see the benefit. Their recommendations are similar to (and based on) the WHO’s guidelines for able-bodied people [5]. Though these recommendations are relatively recent, the concept that “exercise is medicine” is not new [7].

Verschuren and colleagues (2016) Verschuren and colleagues (2016) My notes
Type of exercise/physical activity Recommendations for people with CP  
Cardiorespiratory (aerobic) exercise ➡3 times per week
➡> 60% of peak heart rate*
➡Minimum time of 20 min per session
➡Regular, purposeful exercise that involves major muscle groups and is continuous and rhythmic in nature
This is the type of exercise that gets the heart pumping and the lungs working.
Resistance (muscle strengthening) exercise 2–4 times per week on non-consecutive days Muscle strengthening is especially important for people with spastic diplegia because muscle weakness is a feature of the condition. It is important for all muscles but particularly the antigravity muscles: the hip extensors (gluteus maximus) and the ankle plantar flexors (gastrocnemius and soleus). Other muscles to be considered include the hip abductors, the ankle dorsiflexors, the core muscles, and the upper limb muscles, if there is upper limb involvement.
Daily moderate to vigorous physical activity 60 minutes ≥ 5 days per week This is the ordinary movement we do in our everyday lives. Physical activity counts as long as it is moderate to vigorous. It is less taxing than cardiorespiratory exercise but is more vigorous than gentle movement. Walking, going up stairs, and household chores are all included in this category.
Avoiding sedentary behavior (not being physically inactive) Sit for less than 2 hours/day or break up sitting for 2 minutes every 30–60 minutes One can be physically active but still sedentary; they are separately measured. For example, if the person meets the recommendation for moderate to vigorous physical activity but sits for long periods watching TV or playing computer games, then they are physically active but sedentary. Prolonged sitting in one position, particularly with bad posture, is not good for any person, but it is particularly ill-advised in spastic diplegia.
*Peak heart rate can be approximated as 220 minus age. For example, at age 15, peak heart rate is 205 (220 –15). 60 percent of peak heart rate is approximately 120 beats/minute (205 x 0.6).

Note that there is no lower (or upper) age limit on the exercise and physical activity recommendations for people with CP. There is no denying these recommendations are very high. However, research has found that typically developing infants can take up to 9,000 steps in a given day and travel the equivalent of 29 football fields [8]. It is important to be aware of the recommendations and aim to meet them as much as possible. And remember, any activity is better than no activity.

References

Prevalence of Cerebral Palsy

Prevalence of Cerebral Palsy

[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].

The sculpture above “Waiting on shore” is located in our village (Rosses Point) on the Atlantic coast. It reflects the age-old anguish of seafaring people who watched and waited for the safe return of loved ones. It’s a gentle reminder to future generations to remember a proud history of courage and survival, of loss and grief.

In the last two posts, I addressed causes of and risk factors for CP. This week I’ll cover the prevalence of CP. The prevalence of a condition is how many people in a defined population have the condition at a specific point in time. Prevalence rates can vary geographically. A 2013 worldwide review found that the overall prevalence of CP was 2.11 per 1,000 live births*1. A recent (2019) study, however, reported that the birth prevalence** of CP declined across Australian states between 1995 and 20092. The percentage of children with CP whose disability was moderate to severe also decreased. A 2020 report on collaborative research between the European and Australian Surveillance Networks found similar decreasing prevalence of CP in Europe3. This is encouraging.

Some further points to note:

  • CP is the most common cause of physical disability in children4.
  • Males are at higher risk of CP than females. Data from Australia found that 57 percent of those with CP were male, while males represented 51 percent of all births5. This may be because males have certain nerve cell vulnerabilities that may result in CP6. It is noteworthy that there are frequently more male than female participants in CP studies.
  • Relative to its prevalence and its impact on the life span of those with the condition, funding for CP research is very low. The NIH reports research funding by condition. Although the reported prevalence of CP is twice as high as that of Down syndrome (0.2 percent versus 0.1 percent), funding allocated to CP research in 2019 ($28 million) was significantly lower than that of Down syndrome research ($86 million)7. Funding estimates for 2020 and 2021 are $29 and $26 million, respectively, for CP and $113 and $105 million for Down syndrome.
  • An analysis of National Institutes of Health (NIH) funding for CP research from 2001 to 2013 found that only 4 percent went toward studies of CP in adulthood8. Thus research on CP in adulthood receives only a small percentage of an already small budget.

*Births up to 2004.
**This was formerly referred to as “incidence,” but the term “birth prevalence” is now felt to be more accurate2.

1Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T (2013) An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol 55: 509–519.
2Galea C, Mcintyre S, Smithers-Sheedy H, et al. (2019) Cerebral palsy trends in Australia (1995–2009): a population-based observational study. Dev Med Child Neurol 61: 186–193.
3Sellier E, McIntyre S, Smithers-Sheedy H, Platt MJ, SCPE and ACPR Groups (2020) European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research. Neuropediatrics 51(2): 105-112.
4Graham HK, Rosenbaum P, Paneth N, et al. (2016) Cerebral palsy. Nat Rev Dis Primers 2: 1–24.
5Australian Cerebral Palsy Register (ACPR) Group (2013) Australian Cerebral Palsy Register Report 2013. [pdf] Available at: .
6Graham HK, Thomason P, Novacheck TF (2014) Cerebral palsy. In: Weinstein SL, Flynn JM, editors, Lovell and Winter’s Pediatric Orthopedics, Level 1 and 2. Philadelphia: Lippincott Williams & Wilkins, pp 484–554.
7National Institutes of Health (NIH) (2020) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). [online] Available at: .
8Wu YW, Mehravari AS, Numis AL, Gross P (2015) Cerebral palsy research funding from the National Institutes of Health, 2001 to 2013. Dev Med Child Neurol 57: 936–941.

Adult SDR: update on my progress

This is the last in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood as part of Knowledge Translation Tuesday (KTT). Tommy Collison wrote this update at the recent five months post-op point. KTT will continue on CPRN on September 8, 2020.

Quickfire round:

Adult SDR: update on my progress

Challah Bread

  • Broadly, everything is great — zero complaints, except that gyms/pools/physical therapists are closed.
  • Generally feeling pretty solid on my feet. I had a fall a few weeks ago, but no ill-effects beyond some scrapes to my hand. I’ve been testing my standing endurance by cooking more — to the right is a pic of some challah I made last weekend. (Had the wrong kind of flour, it didn’t turn out just right. Reattempting right now with the correct flour: writing while it proves.)
  • I think it’s still a little bit early to try and guess at effects of the surgery, especially since it’s an apples-to-oranges comparison of my life pre- and post-surgery, but some things I’ve noticed:
    • More flexibility than before in certain muscles: imagine sitting on a chair and bringing your heel up onto the chair, as if you’re putting on a sock. I’m pretty sure I wouldn’t have been able to do that before.
    • General fatigue — this is the one I’m really excited about. Before surgery, if I had a big/ long day (gym → work for 8-10 hours → dinner with friends → home), I would feel it in my legs. Not pain so much as a… heaviness. Just a dog-tiredness. Not sure the right phrasing. I think that’s lessened or gone now. Yesterday, I hung out with friends in the backyard, went for a 6 mile cycle, and then walked downtown and back, getting back just after 10pm. I got into bed and it wasn’t the same sort of “whew, glad today is over” fatigue, where I feel grateful to be lying down and not having to do anything. There was general tiredness, but less muscle tiredness.

  • I’m staying down in Menlo Park, which is nice because it’s within walking distance (about a mile — 25 mins walk) to downtown, where I can get a takeaway coffee. I’ve had success with that sort of habit-stacking (need caffeine, also need to walk) and am walking downtown ~5 times a week.
  • Doing stretching and stretching in the interim. Probably not as much as I should, but PT and I are seeing progress, especially in the squats, and I’m sending her videos. Another interesting bit of progress: we used to practice sit-to-stands and they were SO difficult. The other day, I got out of a chair hands-free without thinking about it. Those little steps forward are so nice.

My Amazing Bike
  • Using two crutches + AFOs outside, and one crutch inside.
  • Got an AMAZING three-wheel bike that’s much safer, because three wheels mean that basically all balance considerations are taken care of. I have a nice 6 mile route that I’m doing 2-3 times a week, and I ordered a Peloton, so lots more cycling in my future.

Want to ask Tommy questions about his SDR? You can find him on the forum at https://cprn.org/ by posting a question with “Tommy” in the subject.

SDR surgery and early rehabilitation

This is the fourth of five in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by Lily Collison — the inaugural author for Knowledge Translation Tuesday for the Cerebral Palsy Research Network (CPRN).  You can comment and discuss the article with Lily on MyCP.org.

Today I will explain a little more about selective dorsal rhizotomy (SDR) and then describe Tommy’s experience of SDR and early rehabilitation.

SDR only reduces spasticity, not other types of high tone. Of the various tone-reducing treatments (oral medications, botulinum neurotoxin injection, phenol injection, intrathecal baclofen, and SDR), SDR is the only irreversible tone-reducing treatment. What do the three words –“selective dorsal rhizotomy” mean?

  • Selective: Only certain abnormal nerve rootlets are cut.
  • Dorsal: “Dorsal” refers to the sensory nerve rootlets–it the sensory nerve rootlets that are cut. (The sensory nerve rootlets are termed “dorsal” because they are located toward the back of the body. The motor nerve rootlets are termed “ventral” because they are toward the front.)
  • Rhizotomy: “Rhizo” means “root,” and “otomy” means “to cut into.”

Putting it all together, “selective dorsal rhizotomy” means that certain abnormal, dorsal nerve rootlets are cut. SDR is a major operation, and the better the rehabilitation, the better the outcome is likely to be. Just as the operation itself varies between institutions, different institutions have different rehabilitation protocols post-SDR. Typically patients undergo intensive physical therapy lasting approximately one year starting in the first days after surgery.

Tommy travelled to St. Paul on Wednesday February 5, 2020 for tests on Thursday followed by his SDR surgery on Friday. The plan was that he would spend four weeks in St. Paul for the initial intensive rehabilitation and then return to work/continue his rehabilitation back in San Francisco, where he lives. My husband and I travelled to St. Paul to support him there. Tommy was admitted on the morning of surgery and wasn’t unduly nervous. (He even pitched the idea of a career change to the anesthesiologist–“Hey come to Lambda School–lots of people are changing career and learning to code” [Tommy works at Lambda School, an online coding school] ?.)

There are two SDR techniques, the cauda and conus, named after the level of the spinal cord at which each procedure is performed. The choice of technique is provider-specific but also depends on the patient. The cauda technique was used in Tommy’s case. Dr. Kim (neurosurgeon) performed the surgery with Dr. Ward (Physical Medicine and Rehabilitation physician) monitoring. The surgery involved removal of the back of the vertebrae (the lamina) in order to access the spinal cord. The dorsal nerve roots were dissected into rootlets, and the rootlets were individually electrically stimulated to determine whether they triggered a normal or abnormal (spastic) response. If a rootlet triggered an abnormal response, it was cut. If not, it was left alone. 30% of dorsal nerve rootlets from L2 to S1 were cut during Tommy’s six hour surgery.

For the first three days post-op, Tommy was confined to lying on his back to allow healing of the dura–the cover of the spinal cord. His pain level was manageable; he did have some stiffness in his back and some unusual sensations in his feet–numbness and hypersensitivity (likely due to the handling of nerve rootlets which would have caused temporary nerve damage). Wound healing progressed well. Three days post-op he was gradually brought to a sitting position and closely monitored for headache (to ensure that the dura was fully healed–no cerebrospinal fluid leakage). He received physical and occupational therapies as an in-patient. He wore knee immobilizers 50% of the time as per plan. He left hospital using a rented wheelchair four days post-op, a day earlier than scheduled. (Indeed, he was well enough to have dinner that evening in the restaurant of our hotel–a goal of Tommy’s.) Over the next three weeks, he attended twice daily out-patient physical therapy and did exercises at home. Posterior leaf-spring AFOs (PLOs) were prescribed and manufactured. During that time he progressed from using a wheelchair to walking with a walker and then to walking with two crutches. The altered sensations he felt in the immediate post-op period, diminished with time. Four weeks post-op (March 4th)–he returned home to San Francisco. Little did we know what was to unfold with COVID-19.

Here are some photos.

SDR surgery and early rehabilitation Day 4- Post op

Day 4 post-op: Leaving hospital.

Day 4 post-op: Leaving hospital.
Image of the ocean in Ireland

Surgical decision-making

This is the third in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by Lily Collison — the inaugural author for Knowledge Translation Tuesday for the Cerebral Palsy Research Network (CPRN).  You can comment and discuss the article with Lily on MyCP.org.

We hear a lot about evidence-based medicine. Evidence-based medicine combines the best available external clinical evidence from research with the clinical expertise of the professional. When Tommy was undergoing Single Event Multi-Level Surgery (SEMLS) at age nine in 2004, there were a number of outcome studies from different international centers supporting SEMLS. These outcome studies together with the expertise clearly evident at Gillette, gave my husband and me the confidence to take our nine year old abroad for surgery. This year, sixteen years later–whilst there are a large number of studies from many centers supporting SDR in childhood (including long-term outcome studies)–there is a dearth of research evidence supporting SDR in adulthood. I could find just two studies from one center. Research conducted by CPRN has shown that 5% of individuals who underwent SDR, were aged over 18 years. There is a need for more outcome studies evaluating SDR in adulthood.

Decision-making for undergoing surgical procedures such as SEMLS and SDR is interesting. Parents of young children and later the adolescent and adult themselves are co-decision makers with the clinician in the medical process. We, Tommy’s parents, were largely the decision makers for Tommy’s SEMLS at age nine. (He and I clearly recall discussing the proposed surgery on a long car journey–he was happy to proceed if we felt it was the right thing to do.) The decision to proceed with SDR this year was totally Tommy’s. Whilst it’s easy to understand that parents largely make the decision for children undergoing procedures and adults make the decision for themselves, there is a “grey area” when it comes to adolescents. Thomason and Graham (2013) made the very interesting point that adolescents must be given the freedom to make their own informed decisions about surgery and rehabilitation. They added that an adolescent who feels they have been forced into surgery against their will or without their full consent is likely to be resentful and may develop depression and struggle with rehabilitation. I fully support this view.

For Tommy’s surgery this year, he asked if as a “fly on the wall”, I would accompany him to the multidisciplinary appointment to decide if he was a suitable SDR candidate. Watching from that vantage point, a few thoughts struck me:

  • The evaluation truly was multidisciplinary. The three consultants discussed the surgery in detail together and with Tommy–it was a robust four-way discussion. The clinicians’ decision, that Tommy was a good SDR candidate was unanimous.
  • I was happy to observe that Tommy fully understood what was involved. When the possibility of SDR was first raised, he told me that he read that section in my book and felt it explained SDR very clearly for him (positive endorsement–our offspring are often our harshest critics!) Tommy was making an informed decision to proceed with the surgery–he was an effective co–decision maker in the medical process.
  • The fact that Gillette offers continuity of care for individuals with CP–from childhood right through to adulthood–is hugely important. Tommy has been receiving care at Gillette since he was nine. This continuity of care has benefits on so many levels. It also makes “handing over the baton for healthcare management” from parent to adolescent, so much easier.
  • As a parent, changing role from being an active participant in the medical process, to being a “fly on the wall” (and only then by invitation), takes discipline, but is so worth it.

Thomason P, Graham HK (2013) Rehabilitation of children with cerebral palsy after single-event multilevel surgery. In: Robert Iansek R, Morris ME, editors, Rehabilitation in Movement Disorders. Cambridge: Cambridge University Press, pp 203–217.

Author note: The photo was taken off the northern Californian coast. It was also there that I took last week’s photo of pelicans flying in V-shaped formation. One of the goals of SDR surgery is to reduce the energy cost of walking. Flying in a V-shaped formation is one of the tricks birds use to reduce the energy cost of flying.