Mobility

This page covers:
– How you might expect mobility to decline
– How your doctor can help
– What is the Gross Motor Function Classification System, and why does it matter?
– Some early warning signs to look out for
– Practical ways to improve your muscle strength and balance
– A look at AFOs and other orthotics
– What mobility aids might help

What is the problem?

Mobility decline

If you are experiencing changing in function you may be thinking that your CP is getting worse. However, Cerebral Palsy doesn’t get worse, although it might feel like it.

The original site of brain injury that caused your CP hasn’t changed but the effects on the body of ageing with CP may be causing the problem. There may be differences in the way your bones and muscles develop. Your reduced mobility and low level of activity may also be a contributing factor.

As you get older, you might start to feel unsteady on your feet or just feel you are slowing down a little. For some people, changes in muscle strength are more noticeable than others.

We know that people with CP fall more often than others and are at increased risk of osteoporosis (weak bones) and arthritis (pain and swelling in joints). This might increase the risk of serious injuries.

Please contact your doctor if you experience declines in mobility, increased pain, reduced balance and increase in falling. Your doctor can check your balance and how you walk to see if improvements can be made. They may be able to refer you for a falls risk assessment or to a falls prevention service. This is run by specialist health professionals who give people advice and support to improve and maintain their strength and balance. Your doctor may also run additional tests to check your calcium, vitamin D and bone density (DEXA scan) to check for osteoporosis.

If you are experiencing changing in function you may be thinking that your CP is getting worse. However, Cerebral Palsy doesn’t get worse, although it might feel like it.

Everybody ages:

Some people with CP find their physical fitness, mobility and balance start to slow down earlier than other people. After the age of 40, everyone begins to lose muscle mass. This starts at 1% per year and increases as we age. Understandably this has a more profound effect on someone living with CP who has less muscle mass to begin with.

This can quickly impact mobility and functional independence. We know that staying more active can help to slow this mobility in unction. The good news is that even from a young age you can begin to build up your muscle bulk.

Facts and figures:

• At least 25%of adults with CP report deterioration in walking
• Many report decline begins at 20-30 years-old
• There is a higher rate of decline among adults with bilateral CP
• Adults with CP experience 6 times as many falls as adults without (of those that report it to their GP)
• People with CP participate in lower levels of physical activity throughout their life
• Over 40% of adults with CP report severe fatigue
• A lack of activity can contribute to our mental health wellbeing, along with diet and good quality sleep

The responsibility to stay active should be self-driven with the support of your physio, GP and other health care providers.

Gross Motor Function Classification System (GMFCS)

Traditionally we have described Cerebral Palsy by the type of CP you have and the limbs and side of the body that has been affected. There is now a move within the adult community to adopt the Gross Motor Function Classification System (GMFCS) more commonly used with children.

The Gross Motor Function Classification System (GMFCS).  looks at movements such as sitting and walking.  It can be categorised into 5 different levels.

It is helpful because it provides

• a clear description of motor function, and
• an idea of what equipment or mobility aids that may be useful e.g. crutches, walking frames or wheelchairs.

If you notice that balance (both sitting and standing), walking and activities of daily life are changing, please talk to your GP. It is often useful to ask yourself the question: Are there things that I used to be able to do that have become more difficult?

GMFCS descriptors

Signs that things might be changing:

It is important to begin to realise when your movement or mobility changes. This might be when you are walking, moving around transferring from one position to another or carrying out your daily tasks.

• You rely more on mobility aids
• Walking is more effortful
• Your walking is slower
• You feel more tired after walking somewhere
• You feel off balance
• You notice an increase in falls
• You feel pain during or after walking that is unusual.

How do we manage it?

There are many reasons for losing muscle strength, feeling unsteady or falling more often.

A less sedentary lifestyle

• Increasing your level of daily activity and reducing sedentary behaviour is key
• Make sure you are being as active as you can. Increasing activities of daily life e.g. shopping, household chores and gardening can help you stay mobile.
• Making sure you don’t sit for too long, and take regular movement breaks.
• There is a clear relationship between diet, activity, and good quality sleep

The government recommendation is to be taking part in a moderate level of activity 3 times per week. This includes people with disabilities.

• Moderate levels of activity will be different for everybody.
• For some it might mean a brisk walk, others a 5k run but for some it can mean increasing daily life activities, like putting shopping away, spending time in the garden or increasing the number of transfers you do in the day.
• Your level of activity can be viewed across a week with the understanding that the way you feel in terms of fatigue and pain can fluctuate, so you can do more one day and less on others.
• For some people, they find it easier to be active in the morning, for others it takes a while to get going and they are better later in the day. It is important to recognise your own preferences.

Exercise

• Exercise and physical fitness are vitality important for people with Cerebral Palsy to improve quality of life and help prevent a decline in mobility, cardiovascular health, and mental health.
• Exercise programs can be designed with you by a physiotherapist or by a personal trainer with additional training to work with people with disabilities.
• Exercise programs can include
  • Strength and conditioning training to building up specific muscles
  • Cardiovascular training to build up your fitness level
  • Walking and balance training
  • Hydrotherapy – an activity or exercise that is performed in warm water. This can be enjoyable way to experience freedom of movement not easily achieved elsewhere.

Benefits of exercise

• Improve muscle strength
• Prevent some long-term conditions like arthritis from getting worse
• Reduce the risk of falls and bone fractures
• Maintain a healthy weight
• Improve heart health
• Reduce the risk of diseases like diabetes and cancer
• Improve sleep
• Support your mental health

AFO’s and other orthotics – These alter the position of your foot for standing and walking. Making small changes to your foot positioning can help with balance and the efficiency of your walking pattern. This can help to reduce pain and discomfort and reduce the effort of walking that intern can reduce fatigue. A referral to an Orthotist will help you to decide whether an AFO or another orthotic might benefit you.

Mobility aids – some people use equipment to help: walking frames, crutches, sticks, wheelchairs, and hoists. People use different equipment for different activities.

Using walking aids can support your mobility and balance and give you confidence to remain independent or continue your daily activities. Sometimes using a walking aid will help with energy conservation as well as mobility. This means you can participate more in the activities you love. Choosing to use a walking aid will depend on the activity. Some people have a range of mobility aids they can use, and this will differ from activity to activity and from day to day.

The use of mobility aids is not binary. Many people in the Cerebral Palsy community are selective wheelchair users and use them to support them in daily life when they need them.

• “I use my wheelchair around the gym from equipment to equipment so I can save energy for the exercises.”
• “I always ask for wheelchair assistance at large venues and airports so that I can conserve my energy to enjoy days out with my family and friends.”
• “Using a mobility aid has given me the confidence to go out by myself without fear of falling.”