[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.

[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.

[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

[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.

[This post is part of our Knowledge Translation/Education series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series.]

Our home is in Sligo, on the north west coast of Ireland. It’s known for its scenery and also its association with the poet, WB Yeats. Sligo has special mountains–Knocknarea (really only a hill, included in a previous post) and Ben Bulben above (elevation 1,726 feet).

In my last post I gave a typical list of causes of and risk factors for CP. This week I will look at some studies that give us further insight.

• Although any one risk factor, if severe, may be sufficient to cause CP, more often it is the presence of multiple risk factors that leads to CP. One factor may interact with another to cause the brain injury, such as an event (or events) during pregnancy combined with the stress of birth combined with a genetic vulnerability¹.
• The literature suggests that events during pregnancy are more likely to cause CP than events during labor or delivery. More specifically:
• A major US study, called the Collaborative Perinatal Project, conducted between 1959 and 1974 followed approximately 50,000 women and their children from the first prenatal visit until the children were seven years old. It found that events during labor and delivery were not major contributors to the occurrence of CP; most cases had their origins before labor began. A second finding was that intrauterine inflammation was a major cause of adverse pregnancy outcome².
• At least 70 percent of cases of CP have antecedents* during pregnancy, and only 10 to 20 percent of cases are related to the child’s birth³. Neither the routine use of fetal monitoring during labor nor the increased incidence of caesarean births (factors which reduce risk during labor and delivery) have reduced the number of cases of CP³.
• Most brain injuries which cause CP occur in the second half of pregnancy, a period when the rate of brain development is fastest⁴.
• Some risk factors are on the decline, but others are increasing^3,5. Advances in neonatal care have reduced the risk of birth injury. However, with these advances more preterm infants and infants with low birth weight are surviving, some of whom may develop CP. In vitro fertilization has led to more multiple births, and multiple births is a risk factor for CP. The fact that some risk factors are decreasing while others are increasing is leading to a change in the type of CP that develops. For example, an injury to a brain at 24 weeks can have a different effect than one at 28 weeks or 36 weeks. Until recently, babies born at 24 weeks would not have survived. Now, thankfully, many of these babies survive; however, some may develop CP. The most common types of CP differ in different parts of the world, depending on risk factors.
• In approximately 90 percent of cases, CP results from healthy brain tissue becoming damaged rather than from abnormalities in brain development⁵.
• Confirmation of the presence of a brain injury by magnetic resonance imaging (MRI) occurs in many but not all cases. Up to 17 percent of people with CP have normal MRI brain scans⁵. Imaging may also help determine when the brain injury occurred⁵.
• The cause of CP in an individual child is very often unknown⁶.

Though I did not know what caused Tommy’s CP, in the early days I wasted a lot of time feeling guilty. I had worked very hard and was stressed during his pregnancy, and I felt responsible. Today I no longer feel that sense of guilt. I didn’t knowingly do anything wrong: my life circumstances were such that I was very busy, and besides, there are multiple possible causes of brain injury. I encourage parents to waste no time on guilt—we are where we are and we must move forward.

* Things that existed before or that logically preceded another event.