Description #

Meet Max

Max is an 8-year-old boy who was has been using a wheelchair for most of his life. Max loves super heroes and hockey and he needs assistance to take part in most activities. Max has been going to physical therapy sessions twice a week for the past year. His mom has noticed that since beginning therapy, Max is better at feeding himself (he is more coordinated using his utensils and picking up food, like grilled cheese sandwiches- his favourite!) as well as throwing a ball and playing with his sister. However, Max doesn’t like going to the medical centre for physical therapy and they are looking for a way for him to continue building strength and increasing flexibility in a more fun and community focused setting.

Meet Sarah

Sarah is 12 and she wants to be in the Olympics, or the Paralympics. It doesn’t matter to her, she loves competition and can’t wait to stand on the podium at a track and field event. Sarah’s cerebral palsy affects the right side of her body- including both her right arm and leg. She does not use a mobility device, although her gait looks a little off balance as she has a slight limp when walking. Sarah wants to pursue competitive athletics and is looking for a training program that will help her excel as an elite level athlete (once she finishes middle school!).

What do I need to know? #

Cerebral Palsy (CP) is a motor disorder that occurs due to damage to the developing brain either during pregnancy, birth or after birth. The damage (lesions) in the brain generally does not progress, yet the impact is lifelong. The symptoms vary from person to person, depending on the area of the brain that is damaged and so it is important to consider each person on an individual basis, while acknowledging that there are often commonalities. For example, CP can impact body movement, muscle control, muscle coordination, muscle tone, reflexes, posture and balance.

How does CP effect someone’s movements?

• Their movements may be uncontrolled or unpredictable and they may have stiff, weak or tight muscles. This can lead to shaky movements or tremors.
• They might also have difficulty swallowing, breathing and speaking or experience excessive salivation (this might cause drooling)
• The difficulties with body movement might cause impaired head and neck control or bladder and bowel control and they may have difficulty eating on their own
• Some of the secondary conditions that someone might experience include chronic pain and fatigue

Did you know? #

These are different types of cerebral palsy:

1. Spastic CP – 80% of people with CP experience spasticity, which means that muscles are stiff and tight so as the participant tries to move and pull, certain muscles contract. This usually affects posture and hand function. If the participant is taking medication for this, see the notes below. Normally muscles work in pairs (agonist-antagonist pairs), when one muscle is contracted the opposing muscle is relaxed. When someone has spasticity, this balance is disrupted and certain muscles become tight (usually arm and leg muscles), causing pain, reduced range of motion, contractures and/or reduced walking capacity. Spasticity is individual and can range from mild to severe.
2. Dyskinetic CP (sometimes called athetoid CP) – This type of CP affects body movements through unintentional, uncontrollable extra movements which is often increased with excitement or nervousness. This is caused by damage to the basal ganglia (the part of the brain which acts like a switchboard transmitting messages between the body and the brain via the spinal cord). There are three types of dyskinetic CP:

• Dystonia – Triggered by an attempt to move and increases when the individual is tired, stressed, or emotional. Movement is slow, twisting, repetitive and sometimes painful.
• Athetosis – Fluctuation of muscle tone triggers a range of experiences for the participant between slow, continuous involuntary movements and a loss of muscle tone causing their muscles to go ‘floppy’. Relaxation decreases these movements and they completely subside during sleep.
• Chorea – Short, unpredictable movements that may sometimes appear like dancing. Relaxation decreases these movements and they completely subside during sleep.

3. Ataxic CP – The least common type of CP (5-10%) is characterised by shaky movements. It affects balance and sense of positioning in space. People with ataxia usually have difficulty walking and making controlled movements with their hands and/or feet. Movement for participants with this type of CP can appear awkward and uncoordinated.

These types of CP can occur in various combinations (spastic CP and dyskinetic CP often occur together) and can also affect various parts of the body.

• Quadriplegia affects movement of both arms and legs, and usually the muscles of the trunk, mouth and face.
• Diplegia affects movement of legs, and to a lesser extent the arms
• Hemiplegia impacts the arm and leg on one side of the body.

NOTE

Due to speech difficulties, many people often assume that someone with CP also has an intellectual disability- Do not make this assumption! If you are having trouble understanding the individual: Be patient. Try again. Ask someone for help (e.g., a parent or support worker). Don’t pretend to understand if you don’t. It’s ok if you’re not sure what they said, you’ll get to know their speech and become better at understanding as you work together!

Why Exercise? Why is it important? #

Exercise is important for everyone! For people with CP, the benefits of regular exercise include:

• Improve mobility (e.g., walking, or use of a wheelchair or other mobility aid)
• Improve fitness outcomes (e.g., cardiovascular endurance, strength & flexibility)
• Lower levels of pain and fatigue
• Improve functional abilities & independence
• Enhance mood & mental well-being
• Improve quality of life
• Lessen fatigue & improve sleep quality
• Increase strength & flexibility

Where do I start? Getting to know Someone with CP #

When someone with CP comes in for their consultation you may (or may not!) notice the following:

• The may come in on their own or with someone else (most likely a parent if it’s a youth)
• Their speech may be difficult to understand or they may speak clearly
• They may use a mobility aid (e.g., wheelchair- manual or power, walker, cane)
• Their movements may seem shaky or unbalanced and they may have difficulty with fine motor tasks (e.g., grasping a pen to sign something)

What are you going to do?

• Direct your questions to the person with CP, not their parent (but the parent may want to be involved!)
• Be patient
• Don’t try to guess what the person is saying before they finish. Wait for them to finish speaking. You can then repeat back what they have said as a question to make sure you understood. For example, if you’re talking about goal setting, ‘so you would like to do some exercises to get stronger?’
• It’s ok to say, ‘I didn’t get that, could you please say that again?’.
• It’s important to build a relationship with the individual at this stage- don’t worry about saying exactly the right thing. Just be yourself. Be patient. Think about how you would like to be treated.
• It’s ok to ask about the kind of assistance they might need- for example- do they want a hand to pick up a piece of equipment? Do they need you to hold the paper steady while they sign? If not, let them do it themselves. Again, be patient. If this is something they are working on then you need to give them the space to do so.

The Consultation #

Use the consultation as an opportunity to get to know the participant. Gather relevant medical information and fitness/ physical activity experience and spend some time focusing on goal setting and learning about participant preferences. In addition to discussing the exercises themselves, ask the participant about how they will get to the fitness centre, and the level of support they need to access the locker room, and prepare for exercise.

You want to support the participant to be as independent as possible. Depending on the individual, this may change over time as they become more familiar with the setting and feel more confident and capable. Some participants may choose to include task-specific training as part of their goal setting (e.g., movements to help with picking up dropped items from the floor or moving around small spaces) or maybe they want to work towards increased community participation (e.g., for youth this might being able to take part in a PE class or keep up with their friends in the school yard).

Implications for Exercise #

Exercise (especially a new program!) can be exhausting for anyone. People who have more severe spasticity, weak muscles and impaired motor control will require more energy for movement and activities. This leads to increased heart rates and blood pressure which can decrease aerobic and anaerobic capacity as the body’s rate of oxygen uptake is reduced. This means they’ll get tired quickly- especially at the beginning!

Exercise (both strength training and aerobic activity) is important (see all of the reasons listed above!), however, low fitness levels are common among people with CP and impaired fine motor skills can result in difficulty performing skilled movements.

There are lots of reasons why someone might think that strength training is not suitable for people with CP. They may have muscle imbalances, poor functional strength and reduced range of motion due to spasticity or contractures. Strength training alone is not enough to improve mobility (ACSM), however, combining regular aerobic exercise with strength training is important to avoid the downward spiral that is associated with physical inactivity.

Recommendation: Exercise in the water!

• Participants with more severe symptoms (spasticity and ataxia) and lower levels of motor capacity will generally find movement in the water easier than on land
• They can improve flexibility, cardiovascular functioning, strength and motor coordination.
• Exercising in warmer water (30-35°C/98-95°F) is very beneficial. It can help the muscles to relax which may reduce the need for antispasmodic medication
• Ensure there is adequate supervision in the pool- especially if a participant also experiences seizures and/or the startle reflex and they should learn to recognise the triggers and be aware of when a seizure is likely to occur.

Gross Motor Functioning Classification System (GMFCS) #

This framework is used primarily to describe meaningful functioning in daily life for people with CP. The system is in alignment with the International Classification of Functioning, Disability and Health (WHO, ICF), however the focus is on the participant’s typical ability (performance) rather than their best possible performance (capability). The GMFCS is most often used by rehabilitation professionals (e.g., physiotherapists or occupational therapists) and they may use these classifications to tell you about an individual’s abilities.

The GMFCS can be useful as a starting point, however, it is important to consider environmental and personal factors (check out the ICF for more details about this classification system) to help you get to know the participant. Some examples of personal factors include readiness (stage of change), motivation, behaviour, likes and dislikes, past experiences, gross and fine motor functioning, goals etc. Environmental factors can include but are not limited to accessibility of the physical environment, transport, use of mobility equipment, social support etc.

Don’t forget:

Every person is like every other person, like some other person, and like no other person.

Monitoring Exertion & Exercise Intensity #

It’s really important that people who are new to exercise learn how to monitor and describe how they are feeling or their response to exercise. One helpful way to do this is to introduce the Rate of Perceived Exertion (RPE) scale.  The smiley face RPE Scale or the OMNI scale (see below for examples of both) may be more suitable for participants with various disabilities than the age-predicted maximal heart rate (220 – age) (Stanish & Aucoin, 2007).

In the beginning, it is also recommended that participants measure their heart rate (using wearable technology such as a heart rate monitor may make this easier!). This information will help the trainer and participant to work together to learn about how the participant perceives their exertion during exercise and may help to inform programming strategies. For example, a trainer may encourage the participant to work towards a specific level of RPE, which can be complemented with information from the HR monitor to measure exercise intensity. Monitoring HR may also be useful in the event that participants are exercising at a level beyond the recommended intensity, which may happen if the participant is very engaged in the activity or trying to make a positive impression on the trainer.

OMNI Scale

Smiley Face Relative Perceived Exertion Scale

Medication & Exercise #

Individuals with CP will most likely be taking regular medications. Similar to the variability you will find across individuals, you will find that different people are taking different medications to manage secondary impairments and limitations (e.g., antispasmodics to help manage spasticity). It is recommended that you talk about this during the consultation to see if there are any side effects that you should be aware of. You may also want to check in with them each time they come in to work out to see if there are any changes or any new information that you should know. It is also important to ensure the individual has the go ahead from their health care provider prior to beginning a new exercise program. You can read about specific medications in (ACSM)

Inclusive TIMES: Tips & Strategies for Individuals with Cerebral Palsy #

The tips and strategies found within the inclusive TIMES section will help you to create an environment that will support your participant’s participation in physical activity as independently as possible. It is important that you involve the participant whenever possible, along the way to ensure the program that you design will meet their needs physically, as well as emotionally and socially. Introducing a few simple strategies such as offering visual images of the participant’s program will help them to be more independent in completing their fitness programme. Ultimately, they will gain confidence and belief in their abilities (increasing self-efficacy) and experience self-determination (sense of control over their own destiny). This is key to establishing healthy habits that will be adopted for the long term.

Time #

• Activities may take longer than usual to complete due to spasticity and impaired muscle control so always allow adequate time and be patient.
• Encourage a participant to do as much as they can by themselves.
• Introduce shorter sessions, longer rest periods, less repetitions or alternating different activities to help manage fatigue as energy expenditure can be greater for individuals who are less mechanically efficient
• Recommend shorter sessions if an individual is getting cold or experiences fatigue due to side-effects of prescribed medication.
• Plan fitness sessions at a time of the day when they are most energetic. They may also try exercising gently when they feel fatigue to explore whether exercise energises them.

Instruction #

• Screening will clarify whether the participant requires any communication considerations.
• Some participants may communicate non-verbally e.g., facial expressions or a structured system (e.g., blink once for yes, twice for no). If a participant has 1 to 1 direct support staff and you are asking the participant a question their staff may answer on their behalf in some situations. Always ensure that the participant is and remains the centre of the conversation.
• Don’t assume someone with CP has an intellectual impairment because they are difficult to understand. Clarify in the consultation phase how best to communicate and if there are any secondary conditions or impairments to be aware of
• Do not pretend to understand if you do not.
• It may help to write down the sequence of an activity or have visual cue cards ready.
• Plan for lack of motivation that may sometimes be evident, remember that establishing a regular routine is the initial priority.
• All participants should be encouraged to become familiar with the RPE Scale, teaching them to learn their body’s response to various intensities so that they can learn to know what intensity is appropriate for the body on any given day.

Movement #

• Most people with CP will benefit from a balanced programme of muscular strength, flexibility and aerobic endurance.
• Participants who experience more severe physical impairments and motor function often find water-based physical activities ideal as movement is easier, experience improved flexibility, cardiovascular functioning, strength, motor coordination, improved muscle tone and spasticity from the properties of water, in particular in warmer hydrotherapy pools (temperature: 30-35°C/86-95°F).
• Intensity should be low in the beginning, with a gradual progression as very high intensity exercise can increase spasticity and incoordination.
• Strength training improves motor activity and self-perception. Correct technique is necessary so machines are recommended before progressing to free weights.
• Capacity to engage in aerobic activities at recommended intensities depends on the participant’s level of motor capacity.
• Upper limb exercises mostly focus on fine motor skills, unilateral exercises (one arm) and coordination of both arms. Repetitive movements create neural pathways that allow for specific movements to be developed and progressed.
• Lower limb exercises mostly focus on gross motor activities consisting of repetitive, coordinated movements of both legs, improving gait and gross movement patterns.
• Balance can be effected so ensure the individual can safely use equipment such as bikes, treadmills, steps etc when indoors and that they can navigate rough terrain outside.
• Range of motion is usually affected and stretching is an essential component of a regular exercise plan. Be sure to stretch only to the point where the participants feels a good stretch.
• Exercise should maximise the use of functional movement that the person has. Focusing on weaker, less flexible areas of the body is important so function is not lost.

Environment #

• Cold temperatures can increase muscle spasticity so warmer air and water temperatures (hydrotherapy pool temperature: 30-35°C/86-95°F) are desirable or alternatively thermal clothing can be utilised.
• Equipment supports and adaptations can assist greatly in the inclusion of an individual with CP. For example:
• Grip gloves, straps and wraps can support participants in keeping their hands and feet secure (eg. holding paddles, handles, rackets; securing feet in bicycles etc)
• Guide rails or staff support will support participants with mobility impairments in balancing.
• Participants may use a walking cane, walker, manual or powered wheelchair. In these cases, an audit of the environment should identify whether the participant has access to all facilities. Some participants may use different mobility equipment in different settings.
• Seats for resting should be available for participants who need regular rest periods.
• If a participant needs assistance with personal care and toileting and is taking diuretics (which increase urination), they should be encouraged to use the toilet before exercising to ensure that their exercise session doesn’t have to be interrupted by a bathroom break.
• If the participant’s verbal communication has been affected they may use another form of communication, for example picto-charts, a communication device or equipment, or a personalised system that may be known by their family, friends and support staff.
• Many people with CP experience ‘hyper-reflexia’, consisting of involuntary movements which can be triggered by certain stimuli. For example, the ‘startle reflex’ can be triggered by sudden loud noises causing the participants arms to suddenly move rapidly in reaction.

Support #

• People with CP are often physically inactive. Guiding them in identifying the barriers and associated facilitators will support the participant. For example, low motivation and self-confidence are common barriers and exploring ways of increasing these characteristics will facilitate participation.
• The individual may require 1 to 1 support; this may be a family member or support staff depending on the person
• Focus on participation, independence, and choice making when planning activities
• Spend some time getting to know your participant to improve communication and enhance the overall experience of the fitness sessions
• Encourage the participant to get to know their body and how it responds to various exercise modalities and intensities
• Involve the participant as much as possible to adapt exercises as needed to increase independence, enjoyment, and motivation
• Finding enjoyable activities for these modes of fitness is the key to adherence.
• Working with rehabilitation team (allied professionals) is beneficial as neuromotor gains can be assessed before and during the programme.
• Introduce a reward system (tracking progress, healthy reward) to help with motivation

References #

• Cerebral Palsy Alliance, available at: cerebralpalsy.org.au [accessed 20 August 2016]
• Cerebral Palsy Foundation, ‘Medication and Drug Therapy’, available at: http://www.cerebralpalsy.org/about-cerebral-palsy/treatment/medication [accessed 20th August 2016]
• Cerebral Palsy, ‘What is Cerebral Palsy?’, available at: https://www.cerebralpalsy.org.au/what-is-cerebral-palsy/how-cerebral-palsy-affects-people/ [accessed 12^th July 2016]
• DASH diet, available at: http://dashdiet.org/default.asp [accessed 3^rd April 2016]
• Exercise is Medicine, ‘Your Prescription for Health Series’, available at: http://exerciseismedicine.org/assets/page_documents/YPH_All.pdf [accessed 6th April 2016]
• ‘Fit for Life: a guide for adults with Cerebral Palsy’, Peter Harrison Centre for Disability Sport, available at: http://www.lboro.ac.uk/media/wwwlboroacuk/content/peterharrisoncentre/downloads/brochures/pdfs/Cerebral%20Palsy%20guide_Fit_for_Life.pdf , [accessed 20^th August 2016]
• Harvard School of Public Health, ‘Healthy Eating Plate & Healthy Eating Pyramid’, available at: https://www.hsph.harvard.edu/nutritionsource/healthy-eating-plate/ [accessed 9^th May 2016]
• Mandal, A., (2012), ‘Cerebral Palsy Prevalence’ available at: http://www.news-medical.net/health/Cerebral-Palsy-Prevalence.aspx [accessed 14th July 2016]
• Moore, G., Durstine, L., and Painter, P., eds. (2016) American College of Sports Medicine: Exercise Management for Persons with Chronic Diseases and Disabilities, 5^th Edition, Human Kinetics, Champaign
• Noorbhai, H., Gabriels, G., and Noorbhai, A., (2014), ‘the effects of common medications in response to exercise and training’, Adv Pharmacoepidemiol Drug Saf, 3, 1, 146
• Palisano, R., Rosenbaum, P., Bartlett, D., Livingston, M., (2007) ‘The Gross Motor Functioning Classification System – Expanded & Revised for children’, available at: https://canchild.ca/system/tenon/assets/attachments/000/000/058/original/GMFCS-ER_English.pdf, [accessed 20^th August 2016]
• Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., Galuppi, B., (1997), ‘The Gross Motor Functioning Classification System’, Dev Med Child Neurol, 39, 214-223
• Pescatello, L., Arena, R., Riebe, D., Thompson, P., eds. (2014), ACSM’s guidelines for exercise testing and prescription, 9^th Edition, Baltimore: Lippincott Williams & Wilkins
• Swain, D., Brawner, C., Chambliss, H., Nagelkirk, P., Paternostro Bayles, M. and Swank, A., eds. (2014), ACSM’s Resource Manual for Guidelines for Exercise Testing and Prescription, 7^th Edition, Baltimore: Lippincott Williams & Wilkins
• WHO Global Action Plan 2013-2020, available at: http://apps.who.int/iris/bitstream/10665/94384/1/9789241506236_eng.pdf [accessed 12th July 2016]

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