New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

A screen capture of the CP Research Network's new website main page

Here’s a sneak peek at our new website!

Thanks to our merger with CP NOW and new research studies already off the ground, it’s been an exciting year so far for the CP Research Network. So, what’s next? Our new website!   

 Since our January merger, our team has been busy integrating four websites into one to create a new online home – cprn.org – a place where we will bring together our community, research efforts, education, and wellbeing programs.   

Here’s a sneak peek of what’s to come!   

To make things easier to navigate, our one platform, CPRN.org, will feature the four cornerstones of the combined organization:  

1) Community  
Join a committed group of community members on the MyCP platform at CPRN.org. All are welcome, including adults with CP, parents, and caregivers, clinicians, researchers, and advocates shaping impactful research to improve the lives of people with CP.  

2) Research  
The Cerebral Palsy Research pages of our soon-to-be-released site will fill you in on our active studies and highlight opportunities to participate in ongoing research to improve healthcare outcomes for people with CP.  

3) Education  
Please take advantage of our educational resources and programs to help navigate CP from diagnosis to therapies, treatments, and interventions to maintaining mental and physical health and transitioning to life as an adult with CP. You’ll find many toolkits, guides, and resources all ready to download on our education webpages.   

4) Health and wellbeing  
Log on for programs to maintain and improve physical health and wellbeing. We are working with our trusted partners to implement regular opportunities for community members to participate in healthy activities in their communities.  

Excited? We are too! We’ll reveal our launch date soon, but for now, please keep swinging by cpdailyliving.com, cpnowfoundation.org, cprn.org, and mycp.org for everything you need to know about the CP community.    

An infographic showing illustrations, statistics, and symptoms that adults with cerebral palsy may have or develop with age.

Neurologic Care for Adults with CP

Bhooma Aravamuthan, MD, DPhil
Bhooma Aravamuthan, MD, DPhil

Most people living with cerebral palsy today are adults, yet there is a disconnect about how childhood neurological care should transition into adulthood. Today, Dr. Bhooma Aravamuthan, MD, DPhil, shares her efforts to bridge that gap…

As a pediatric neurologist, the bulk of my practice is caring for children with cerebral palsy, yet I did not receive training in the unique needs and concerns of adults with the condition.

As my patients make the often-difficult transition away from pediatric care to adult care, what medical symptoms and red flags do I tell them to watch out for? How can I help them advocate for their medical needs? How do I convince my adult neurologist colleagues that CP is not just something that happens to kids? These kids become adults, and they still need us. 

Last year, I was elected as Vice-Chair of the American Academy of Neurology (AAN) Adults with Intellectual and Developmental Disabilities Section. My election was bolstered after I sounded the alarm that neurologists who care for adults should increase their focus on patients with CP. I am not alone in my passion for this topic, and there is a growing consensus that we need more expertise. 

As I investigated this issue, I turned to the Cerebral Palsy Research Network and engaged with The Adults with Cerebral Palsy Workgroup within the network.

The workgroup features clinicians across specialties (including physiatry, physical therapy, developmental pediatrics, and orthopedics) who have long worked to increase awareness of the many changing needs faced by adults with CP.

I came to them asking, “Where do I start?” Together, we established what we knew, what we thought we knew, and what we needed to learn more about regarding the neurologic care of adults with CP. Along with a talented MD-PhD student at my home institution, Washington University School of Medicine, we conducted a comprehensive systematic review of the available literature on neurologic concerns faced by adults with CP. 

The results were informative but also sobering. Adults with CP have twice the risk of stroke and eight times the risk of myelopathy (spinal cord compression and injury) than adults without CP. A third of adults with CP lose mobility as they age, and the majority suffer from increasing pain and fatigue. These are all concerns that require neurologic surveillance, which, by and large, is not occurring. We also established how much we still need to learn about the neurologic problems faced by adults with CP. As you may have guessed, there is still a lot we do not know. 

Together with my neurologist colleagues, members of the AAN section, and members of the CP Research Network workgroup, we published our findings. Our article, Adults with cerebral palsy require ongoing neurologic care: A systematic review, was printed in this month’s Annals of Neurology, one of the flagship journals in our field.

In the article, we include recommendations for clinicians, researchers, and adults with CP about the kinds of neurologic symptoms to look for and what symptoms we need to learn more about.

We believe that resources of this type are an essential step toward ensuring adult medical practitioners are more aware of the issues facing adults with CP. Our findings highlight the critical need for ongoing neurologic surveillance of adults with CP.

At the least, we hope that including specific recommendations for adults with CP will empower patients to self-advocate until we, as clinicians, can bridge the wider knowledge gap we have regarding their care. 

As word spreads of our recommendations, we have been encouraged by the positive feedback but are eagerly awaiting to see if this changes practice as well. While we are hopeful, we are not naïve. We will keep sounding the alarm until ongoing neurologic surveillance of adults with CP is the norm. 

[If you want to participate in our adult study of personal wellbeing, please join MyCP!]

About Dr Bhooma Aravamuthan

Dr. Aravamuthan is an Assistant Professor of Neurology and pediatric movement disorders specialist in the Cerebral Palsy Center at the Washington University School of Medicine in St. Louis.

A white speech bubble against a green background with the words ‘Let’s talk about CP’ linking to blog post ‘Don’t miss our 2021 MyCP Webinar Series!’

Don’t miss our 2021 MyCP Webinar Series!

Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST. 

Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community.  It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network.  In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP

The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.

To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.

Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research.  We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.

We encourage all who have participated in this important ongoing process to attend. We hope to see you there!

White Scrabble game tiles in a dark green rack spelling the words: ‘EX AND PA PART FOUR’.

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.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

Webinar: Body Composition and Strength in Cerebral Palsy

Ed Hurvitz, MD, Chair of Physical Medicine and Rehabilitation, University of Michigan

Ed Hurvitz, MD, Chair of Physical Medicine and Rehabilitation, University of Michigan

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP webinar series would be about importance of body composition and strength in cerebral palsy (CP) on Monday, December 7, at 8 pm ET. Dr. Edward Hurvitz, Chairman of the Department of Physical Medicine and Rehabilitation at the University of Michigan will discuss his research into new measurements of strength for people with CP and role that strength plays in long term health. Dr. Hurvitz, also a member of the CPRN Executive Committee, will present for approximately 20 minutes and be available for Q&A after the presentation. Dr. Hurvitz’s research was recently funded by the Foundation for Physical Medicine & Rehabilitation Gabriella Molnar grant. This study is important because it may enable new standardized ways to measure strength in the CP population that can be easily added to routine care.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

White Scrabble game tiles on a table spelling the words: ‘EXERCISE AND PHYSICAL ACTIVITY’.

Exercise and physical activity in spastic diplegia – younger children — part 3

[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 wrote about Verschuren and colleagues (2016) recommendations for exercise and physical activity for people with cerebral palsy (CP). For older children, adolescents, and adults with CP, the Peter Harrison Centre for Disability Sport at Loughborough University in the UK has published two excellent guides. The first, Fit for Life, is for people with CP who are new to exercise. The second, Fit for Sport, is for people who want to take their exercise to a more advanced level. These are excellent resources that I would strongly encourage readers to check out.

Other useful online resources include:
➡ American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) We Can All PLAY: Participation in Adapted Sports and Recreation for Children and Youth with Disabilities.
➡ American College of Sports Medicine Health-Related Fitness for Children and Adults with CP.
➡ The National Center on Health, Physical Activity and Disability (NCHPAD) is a public health practice and resource center for people with disabilities. It has a selection of informative videos.

The following are some tips on exercise and physical activity for the younger child, and the next post will address the older child, adolescent, and adult. The tips were gleaned from my own experience, but with additional pointers from therapists at Gillette Children’s Speciality Healthcare. Your PT or OT can help you develop a targeted and safe exercise program. They will also be able to offer advice on which types of exercise are best for joint preservation. There’s a balance to be struck between preserving joints and playing sports you most enjoy. For example, if playing soccer with friends is what you most enjoy, it is a good sport for you. Swimming is a particularly good sport because of its low impact on the joints.

Exercise and physical activity tips for the younger child
➡ The typically developing toddler gets their muscle stretching and strengthening exercises through everyday movement: running, climbing, jumping, etc. Since the goal in spastic diplegia is to follow normal development as much as possible (to get normal forces acting on the bones), we need to ensure the young child with spastic diplegia gets their required amount of exercise and physical activity. Movement is essential for the child with spastic diplegia, including moving joints through the entire range of motion (ROM) of which they are capable.
➡ Incorporating muscle stretching and strengthening into play and other activities the child really enjoys is enormously helpful. For the young child, learning to play and learning through play are very important. Incorporating exercise and stretching into the normal day as much as possible—for example, encouraging the child to use a tricycle to travel short distances—also helps.
➡ Playgrounds (both outdoor and indoor) are great places for all children to play, but they are especially important for the child with spastic diplegia. Here the child has the opportunity to move in a variety of ways. Playgrounds are also great because they are normal family settings. Parents of children with limited mobility tend not to bring their children to venues that require lots of movement as often, but in fact the child with spastic diplegia needs such opportunities to move and play even more than the typically developing child. Safety must be a concern, of course, but we cannot be so overzealous about safety that our child misses out on great opportunities for movement.
➡ Swimming is also great for the young child with spastic diplegia.
➡ Parents may be reluctant to use adaptive equipment (such as a recumbent bicycle) because they worry it will make the child stand out more. I would advise parents to weigh the perceived costs against the benefits for the child. (I’m not talking about financial costs.) I have also found that children can be very accepting of others; often the prejudice lies with us adults, not with our children.

Happy Thanksgiving to all those who celebrate this great holiday.

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Cerebral Palsy Diagnoses Webinar

Cerebral Palsy Diagnoses Webinar

Bhooma Aravamuthan, MD, DPhil

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on family attitudes toward a cerebral palsy diagnoses on Wednesday, November 18 at 8 pm ET. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist from St. Louis Children’s Hospital, will share her objectives and preliminary data for this research. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Aravamuthan is a leader in numerous initiatives for cerebral palsy (CP) in CPRN and the field with her recent appointment to the American Academy of Neurology Child Neurology Quality Measures Standing Workgroup. In conjunction with this study, Dr. Aravamuthan has been surveying clinicians who diagnose cerebral palsy in an effort to change the field’s understanding of CP with the advent of more genetic discoveries in conjunction with CP. In this webinar, she will talk about her recent study of clinicians and how she hopes to marry that with the feedback from families and individuals with CP to improve diagnoses and clinician / patient dialogue in support of families.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

An old conical metal buoy standing on a windswept headland overlooking the ocean under a cloudy blue sky in the fading daylight

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

A view of the blue sky and treetops from the ground, with the leaves turning from green to the yellow and orange hues of autumn

Exercise and physical activity in spastic diplegia – part 1

[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 natural beauty surrounding us, helps during another lockdown here in Ireland. COVID case numbers have recently increased thus further restrictions were necessary.

Since staring to write for CPRN, I have addressed Selective Dorsal Rhizotomy in adulthood, then a series on the definition, causes & risk factors, and prevalence of cerebral palsy. Over the next few posts I will write about exercise and physical activity in cerebral palsy (CP).

Exercise and physical activity is important for everyone. The goal of exercise and physical activity for the person with spastic diplegia is the same as for their able-bodied peers–having a physical disability does not confer any exemption from needing to exercise and stay physically active.

Just so there is no ambiguity, let us clarify what is meant by these terms:
➡ Exercise is planned, structured, repetitive, and intentional movement intended to improve or maintain physical fitness [1]. Exercise is a subtype of physical activity. Examples of exercise include running, cycling, or attending a gym class.
➡ Physical activity is movement carried out by the skeletal muscles that requires energy expenditure, thus any movement is physical activity [1]. Physical activity varies from light to moderate to vigorous. Examples of each include:
– Light physical activity: slow walking
– Moderate physical activity: brisk walking, jogging, climbing stairs
– Vigorous physical activity: fast running, fast cycling

It follows that energy expenditure is lowest while doing light physical activity and highest while doing vigorous physical activity. Recent advancements in wearable monitoring devices allow better measurement of physical activity levels. (I like being able to track my daily activity level.)

Do children and adolescents with spastic diplegia take part in enough physical activity?
No. Studies have shown that children with CP walk significantly less [2] and spend more time being sedentary [3] than typically developing children. A further study [4] found that children aged 3 to 12 showed a decrease in amount and intensity of physical activity with increasing GMFCS level and increasing age.

Does this reduced physical activity have health consequences?
Yes. Reduced physical activity was associated with higher energy cost of walking in adolescents with mild spastic CP [5] and elevated blood pressure in children and adolescents with mild or moderate spastic CP [6].

Do studies show exercise and physical activity is beneficial for children and adolescents with CP?
Again, yes. Studies have found benefits across a range of measures, including fitness, body composition, quality of life, and happiness [7–9]. A physical therapy research summit sponsored by the American Physical Therapy Association emphasized the need to promote and maintain physical fitness in children with CP to improve health, reduce secondary conditions, and enhance quality of life [10].

Over the next posts I’ll write about the importance of exercise and physical activity in adulthood, exercise and physical activity recommendations for people with CP, and more.

References

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Surgical Spasticity Treatments in Children who are not Ambulatory

Surgical Spasticity Treatments in Children who  are not Ambulatory

Sruthi Thomas, MD, PhD Pediatric Physical Medicine and Rehabilitation

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on surgical spasticity treatments for children who are not ambulatory on Monday, October 26 at 8 pm ET. Sruthi Thomas, MD, PhD, a pediatric physical medicine and rehabilitation physician from Texas Children’s Hospital, will share her formative work in this topic identified by Research CP. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Thomas has initiated a number of lines of study on spasticity management for cerebral palsy (CP) to build preliminary data in support of a large multi-center comparative effectiveness research (CER) grant application. Spasticity interventions have been studied more in children with CP who are ambulatory so a CER study that helps determine which interventions work best in children who are not ambulatory is needed. Parents are increasingly faced with very difficult choices between surgical spasticity interventions to address pain, care and other activities for these children.  In this webinar, Dr. Thomas will talk about the state of the evidence, the importance of research and the studies she is planning to answer critical questions for this population.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!