Ageing and cerebral palsy

The concept of ageing and cerebral palsy is now becoming more recognised and research is being undertaken. However, many people, including some professionals, think that because cerebral palsy is a “non-progressive disorder”, physical functioning will remain much the same throughout life. This isn’t necessarily the case. Whilst some people lose no more function than might be expected from the normal ageing process, others do and new physical problems can emerge. This page explains why this might occur and what can be done to limit potential deterioration.

It is a common perception that growing older brings with it poor physical health, mental incapacity and an inability to function independently. Whilst physical abilities do decline with age, this happens more slowly and to a lesser degree than most people think. The impression that older people experience severe physical decline is partly because of confusion between primary ageing (changes brought about by increasing age) and secondary ageing (changes caused by disease and disuse or abuse of our bodies). In fact, many people retain good physical health into their seventies and beyond.

However, for those who have lived a lifetime with a physical impairment, the effects of ageing can become apparent earlier than expected. Cerebral palsy is an example of a developmental disorder in which physical functioning can deteriorate with ageing as a result of poor mechanical efficiency.

Problems people report as they get older

Whilst there is not a wealth of published scientific evidence on the physical effects of ageing and cerebral palsy, surveys have highlighted some of the problems that people encounter. What is clear is that people with cerebral palsy age in the same way as non-disabled people (primary ageing) but some people with cerebral palsy may also experience secondary ageing effects. These are likely to be the long-term effects of the original impairment.

Below are some of the more common problems reported by people in their thirties and forties or, sometimes, a little earlier.

• Increased levels of pain and discomfort
• Osteoarthritis (pain and stiffness in the joints)
• Increase in spasms
• Increase in contractures (shortening of muscles)
• Less efficient motor control (body parts involved in movement)
• Joint problems
• Tight muscles
• Gastro-intestinal (digestive system) problems
• New or increased back pain
• Emergence of or increase in incontinence
• Loss of joint flexibility
• Reduced energy levels and fatigue

Some risk factors associated with loss of function

In many cases the reasons for the emergence of new problems or aggravation of an existing condition is not too difficult to understand. Below are some factors that may contribute to secondary ageing effects.

• Poor wheelchair seating and posture
• Spinal deformities
• Contractures
• Absence of appropriate movement of limbs and joints
• Persistence with walking when it is increases in difficulty
• Exhaustion
• Ending of long-term physical therapy
• Weight gain
• Severe learning disability
• Ignoring the body’s warning signals (such as pain and stiffness)
• Physical injury
• Inappropriate orthopaedic surgery
• Absence of appropriate rehabilitation following surgery

Poor wheelchair seating and posture may mean that there is inadequate support. This can make existing spinal problems worse, causing pain and discomfort and sometimes loss of function in the limbs. Through lack of appropriate exercise, tight muscles may develop into contractures causing deformities in limbs. Persistence in walking when the legs are adversely affected may cause long-term problems elsewhere, such as arthritis in the joints and pain and discomfort in the back, as other muscles try to compensate for the awkward movement. Physical exhaustion may follow from taking too little rest, resulting in an overall decline in physical and mental functioning.

Many people with cerebral palsy push themselves to their physical limit and thus have little in reserve. Consequently, recovery can take much longer following an injury or illness and, unless there is a rehabilitation programme following the injury or illness, recovery to previous levels of functioning may be slow.

Orthopaedic surgery has merit in the treatment of certain aspects of cerebral palsy, such as the prevention of spinal deformities and contractures. However, orthopaedic surgery on people with cerebral palsy requires particular expertise. Inappropriate procedures may be recommended by surgeons who do not have specialist knowledge of cerebral palsy and again, lack of appropriate rehabilitation following surgery may contribute to delays in recovery, or even deterioration in physical functioning.

Ways of maintaining physical functioning

Whilst not everyone with cerebral palsy will lose a significant degree of physical functioning with ageing, some will lose function earlier than might be expected. Below are some ways of maintaining an optimum level of physical functioning.

• Ensure appropriate wheelchair seating and posture.
• Spend time in various positions outside the wheelchair.
• Adopt stretching exercises to stop muscles becoming tight.
• Seek early, appropriate medical advice if new problems emerge.
• Avoid excessive weight gain.
• Avoid high levels of sustained pressure and stress.
• Take regular and appropriate exercise, for example, swimming.
• Consider occasionally using a wheelchair/motorised vehicle if walking is becoming difficult or physically demanding.
• Seek regular reviews of physical functioning.
• Seek advice on an exercise programme for joints and limbs from a physiotherapist with an interest/specialism in cerebral palsy.
• Consider carefully the implications of any proposed surgery.
• Seek a surgeon who has an acknowledged expertise in cerebral palsy.
• Have a programme of rehabilitation in place following surgery.

NOTE: Please seek medical advice before commencing a programme of any physical exercise such as swimming or exercise routines.

Ways in which to seek help

Family Doctor (GP)

Although there are a range of NHS services available for children with cerebral palsy, unfortunately, a similar range of services for adults is not in place. It would, therefore, be beneficial to seek an annual check-up with your family doctor. In this way it may be possible to anticipate problems. Your family doctor may be able to refer you to therapy services, or to a medical consultant with an interest or expertise in cerebral palsy. However, your GP may have a limited knowledge of cerebral palsy and indeed you could be the only patient on his register with this condition. In view of this, it will help if you can be well informed about your own condition. If you are dissatisfied with the input from your doctor, you may ask for a second opinion or contact any of the organisations below.

Alternative Therapies

There is limited scientific information on the benefits of alternative therapies for adults with cerebral palsy. However, many people find real benefit from complementary therapies including acupuncture, massage, aromatherapy and reflexology.

There are a number of books on the market that describe various alternative therapies. Unfortunately very few will relate specifically to disability or cerebral palsy but, as with such therapies, it is a case of discussing your needs with the therapist and finding out what helps you. The book “Health Options – Complementary Therapies for Cerebral Palsy and Related Conditions” by A. Vickers is now out of print but you may be able to find a copy in a library. It may also be possible to access some of these therapies through your family doctor. Always consult a qualified and insured complementary therapist. For details of therapists in your area, look at the Federation of Holistic Therapists website www.fht.org.uk

All therapists listed are qualified to nationally recognised standards, insured, governed by a Code of Ethics and must undertake regular professional development and training.

Therapy Services

If you would like to know more about therapy services such as physiotherapy, occupational therapy and speech and language therapy please talk to your GP or contact the following organisations directly.

Further information

The Chartered Society of Physiotherapy
Tel: 020 7306 6666
Fax: 020 7306 6611
Website: www.csp.org.uk

British Association of Occupational Therapists and College of Occupational Therapists
Tel: 020 7357 6480
Fax: 020 7450 2299
Email: cot@cot.org.uk
Website: www.cot.org.uk

Royal College of Speech and Language Therapy
Tel: 020 7378 1200
Fax: 020 7403 7254
Email: postmaster@rcslt.org
Website: www.rcslt.org

Further reading

Cerebral palsy and ageing: A systematic review
By Dr Diane Cox, Clare Veze and Chris Lewis
2005, 81 pages
ISBN 0946828334
A systematic review commissioned by Scope and carried out by St Martin's College, Lancaster. The aim of the review is to consider current knowledge on cerebral palsy, life expectancy, health and functional ability in adults with cerebral palsy and to start to explore some of the issues related to ageing effects.
£3.30 to individuals/£12.75 to organisations. Copies available from Scope Response.

For more information on Scope

Contact Scope Response for information, advice and support on cerebral palsy and disability issues. Copies of all our factsheets can be downloaded from our website or obtained from Scope Response.

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Closed weekends and Bank Holidays.

Scope Response
PO Box 833
Milton Keynes
MK12 5NY

Tel: 0808 800 3333 (freephone Helpline)

Fax: 01908 321051

SMS Text: Type SCOPE plus your message to 80039

Email: response@scope.org.uk

Scope acknowledges the help and support of everyone who has been involved in the production of this information. Although we have taken care to ensure the accuracy of this information, Scope cannot accept responsibility for errors or omissions. We always recommend getting independent advice from a professional before embarking on any process, therapy or medical intervention.

We have information about Scope and cerebral palsy available in some languages on CD-ROM. We also offer a telephone interpreting service to people whose preferred language is not English. Please contact Scope Response for more details of these services.

This factsheet was last reviewed March 2010.

© We are happy for you to make photocopies of any part of this document. However, we would be grateful if you would attach an acknowledgement of the source to any copies.