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Archive for Knowledge Translation

Exercise and Physical Activity for Adolescents with Spastic Diplegia

Exercise and physical activity for adolescents with spastic diplegia

Posted on December 8, 2020
by Paul Gross
13 Comments

[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.

Education, Knowledge Translation
Exercise and Physical Activity for Younger Children with Cerebral Palsy

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

Posted on November 24, 2020
by Paul Gross
No Comments

[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.

Education, Knowledge Translation
Bouy in Ireland

Exercise and physical activity in spastic diplegia – part 2

Posted on November 10, 2020
by Paul Gross
No Comments

[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 activityRecommendations 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) exercise2–4 times per week on non-consecutive daysMuscle 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 activity60 minutes ≥ 5 days per weekThis 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 minutesOne 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

Education, Knowledge Translation, Research CP
Trees in Ireland

Exercise and physical activity in spastic diplegia – part 1

Posted on October 27, 2020
by Paul Gross
15 Comments

[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

Education, Knowledge Translation
Waiting on Shore, Rosses Point

Prevalence of Cerebral Palsy

Posted on October 13, 2020
by Paul Gross
No Comments

[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.

Education, Knowledge Translation
Ben Bulben, Sligo

Cerebral Palsy Causes and Risk Factors – Part 2

Posted on October 5, 2020
by Paul Gross
No Comments

[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 increasing3,5. 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.

1Nelson KB (2008) Causative factors in cerebral palsy. Clin Obstet Gynecol 51: 749–762.
2Klebanoff MA (2009) The collaborative perinatal project: a 50-year prospective. Pediatr Perinat Epidemiol 23: 2–8.
3Graham 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.
4Hadders-Algra M (2014) Early diagnosis and early intervention in cerebral palsy. Front Neurol 5(185): 1–13.
5Graham HK, Rosenbaum P, Paneth N, et al. (2016) Cerebral palsy. Nat Rev Dis Primers 2: 1–24.
6Rosenbaum P, Rosenbloom L (2012) Cerebral Palsy: From Diagnosis to Adulthood. London: Mac Keith Press.

Education, Knowledge Translation
Knocknarea

Cerebral Palsy Causes and Risk Factors

Posted on September 15, 2020
by Paul Gross
No Comments

[This post is part of our Knowledge Translation Tuesday series. Guest author Lily Collison, author of Spastic Diplegia — Bilateral Cerebral Palsy, continues the series on her journey with her son and cerebral palsy (CP). Author note: The is the view out over the Atlantic on Sunday as we climbed Knocknarea–the hill I pointed out in last week’s post.]

In coming to terms with our child’s CP diagnosis, we almost always ask the question why? This week I will write about cerebral palsy causes and risk factors. As we will see below, very often no specific cause is identified. This was the case with our son.

The term cause is self-explanatory. The term risk factor can be defined as any attribute, characteristic, or exposure of an individual that increases the likelihood of developing a disease or injury. Causes thus have a stronger relationship with CP than risk factors. Significant deprivation of oxygen to the infant’s brain, for example, is a cause of CP. Preterm birth is a risk factor but not a cause of CP—in other words, not every preterm baby is found to have CP. There are many possible causes of brain injury, including events before and during pregnancy, during birth, or in early infant life. Much is known about the causes and risk factors for CP, but much remains unknown as well. Depending on what you read, you may come across different lists of causes and risk factors for CP.

Causes of CP
Developing fetuses and infants (up to age two to three) can develop CP if they experience brain injury or disruptions in brain development caused by1:

  • Bleeding in the brain before, during, or after birth.
  • Infections of the brain, including meningitis or encephalitis.
  • Shock—a state in which organs and tissues do not receive adequate blood flow.
  • Traumatic brain injuries, such as from a serious car accident.
  • Seizures at birth or in the first month following birth.
  • Certain genetic conditions.

Risk factors for CP
Risk factors for CP include1:

  • Preterm birth and low birth weight. A typical pregnancy lasts 40 weeks. Babies born before 37 weeks have a greater risk of having CP. The risk increases the earlier a baby is born and the lower the baby’s birth weight. Twins and other multiple-birth siblings are at particular risk because they tend to be born earlier and at lower birth weights.
  • Serious illness, stroke, or infection in the mother. CP is more common in children whose mothers:
    – Experience certain viral and bacterial infections and/or high fevers during pregnancy.
    – Have coagulation (clotting) disorders or experience blood clots during pregnancy.
    – Receive excessive exposure to harmful substances during pregnancy.
    – Have thyroid problems, seizure disorders, or other serious health concerns.
  • Serious illness, stroke, or infection in the baby. Infants who experience serious illnesses, strokes, or seizures around the time of birth are at greater risk of having CP. Such illnesses might include:
    – Severe jaundice. (Kernicterus is a rare kind of preventable brain damage that can happen in newborns with jaundice.)
    – Seizures during the first 48 hours after birth.
    – Infections of the brain, such as meningitis or encephalitis.
    – Strokes caused by broken or clogged blood vessels or abnormal blood cells.
  • Pregnancy and birth complications. For example, not enough nutrition through the placenta or a lack of oxygen during labor and birth. Incompatible blood types between mother and baby.
  • Genetic issues.

I will continue with part 2 next week.

1Gillette Children’s Specialty Healthcare (2019) What Is Cerebral Palsy? [online].

Knowledge Translation
Rosses Point

Defining Cerebral Palsy

Posted on September 8, 2020
by Paul Gross
No Comments

[This post is the continuation of our Knowledge Translation Tuesday. Guest author Lily Collison, author of Spastic Diplegia — Bilateral Cerebral Palsy, continues the series on her journey with her son and cerebral palsy (CP).]

For a multitude of reasons, I believe it is very important for parents of young children and adolescents and adults with CP to fully understand the condition. I was that mom who didn’t understand my son’s diagnosis and therefore didn’t know how best to help him. My adult son now needs to have a good understanding to best help himself. When I was invited to write for CPRN to expand its knowledge translation objective, Paul (Gross) asked me to first write about SDR in adulthood because my son, Tommy had just undergone this procedure. Once I’d finished that series of posts, I debated whether it was best to work back to childhood or start from childhood. I was also conscious of recent data which showed that people who themselves have CP–adolescents/adults with CP are the biggest single group (58%) in MyCP. In the end, I decided to go back to the start and follow a logical sequence of subjects from childhood to adulthood. Issues in adulthood to some extent build on issues in childhood. It’s like the Wordsworth quotation “The Child is father of the Man.“

Let’s start with the actual definition of CP. Over the years there has been much discussion of the definition of CP, and different definitions have been adopted and later discarded. The most recently adopted definition, published in 2007, is as follows:1

Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

(Here is a link to a table explaining each term in that definition.)

CP is a lifelong condition and there is currently no cure, nor is one imminent, but good management and treatment can help alleviate some or many of the effects of the brain injury. When the brain injury occurs is important. The consequences of a brain injury to a fetus developing in the womb are generally different from those of a brain injury sustained at birth, which in turn are different from those of a brain injury acquired during infancy. It is generally accepted that only brain injuries occurring before the age of two or three fit the definition of CP. A brain injury occurring after that age is called an acquired brain injury. This cutoff is due to the differences in brain maturity when the injury occurs. In my son’s case I’m not certain when his brain injury occurred–he was born after an uneventful pregnancy and delivery–most likely it occurred during pregnancy.

Returning to the definition of CP, although this definition is very useful, I’m not sure it sufficiently alerts us to the secondary conditions that may arise in adulthood. As O’Brien, Bass, and Rosenbloom (2009) explained, the definition was developed to be used in childhood—it was not intended to infer that progressive problems might not appear in adult life.2

(The photo is one I took yesterday evening at Rosses Point, Sligo, Ireland, where I live. Yeats had close connections with Sligo. The hill in the left background is Knocknarea at 1,073 ft. Tommy was very proud when he first climbed it as a child.)

1Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M (2007) A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol 49 Suppl 2: 8–14.

2O’Brien G, Bass A, Rosenbloom L (2009) Cerebral palsy and aging. In: O’Brien G, Rosenbloom L, editors, Developmental Disability and Aging. London: Mac Keith Press, pp 39–52.

Knowledge Translation

Five Months After SDR: Tommy’s Perspective

Posted on August 25, 2020
by Paul Gross
15 Comments

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:

  • Broadly, everything is great — zero complaints, except that gyms/pools/physical therapists are closed.
  • Challah breadGenerally 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.
  • My Amazing BikeDoing 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.
  • 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://mycp.org/ by posting a question with “Tommy” in the subject.

Knowledge Translation

SDR and Early Rehabilitation

Posted on August 18, 2020
by Paul Gross
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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.

Day 1 post-op.

Day 1 post-op. Note–little details like the iPad stand (provided by the hospital) make a big difference for Tommy when he was confined to lying on his back.

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 additional photos:

Three days post-op

Tommy turned on his side to check the wound. –the pattern on his skin in the middle photo is just the imprint of fabric from constant lying on his back.

Day 4 -- Leaving the hospital.

Day 4 — Leaving the hospital.

Knowledge Translation
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University of Utah
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