Cerebral Palsy

Changes you may experience as you get older


Everyone’s body deteriorates with age. It’s inescapable yet gradual and known as primary ageing. Secondary ageing is the term given to other outside factors known to affect the speed with which we age. These can be lifestyle factors such as diet, or the amount of exercise we take, but it’s now known that living with a lifelong condition like cerebral palsy causes secondary ageing due to the physical and emotional strain the condition puts on the body.

Although we think of ageing as something that is likely to happen in the later decades of our life, adults with cerebral palsy can start noticing differences much earlier. Some people notice additional health problems or changes in their capacity as early as their mid-thirties (or in some cases even earlier), for others it’s likely to be their forties and fifties.

Physical changes

  • Changes in mobility: Altered postures and altered movement patterns can mean physical changes in mobility happen more rapidly. Stiffness, walking and balance issues are common in mid-life.
  • Reduced physical strength: If you don’t use muscles regularly the strength reduces and with that stiffness increases, or if you have lower tone, the muscles get weaker. If pain or other factors are stopping you doing something seek help. If you do nothing your muscle strength will reduce and when you call on those muscles they won’t be ready. It’s true, ‘if you don’t use it you’ll lose it’.
  • Reduced balance: Body alignment is important for balance. Muscle stiffness or loss of strength can change your ability to balance. Walking also depends on a good foot position, or ‘base of support’. Changes in your foot can make a big difference, some people find they need walking aids as they grow older. Make sure your orthotics and aids are working for you and if not, seek advice.
  • Pain: Chronic pain is a much bigger issue for adults and it has knock-on effects. It can stop you doing the things you love. Tensing up to anticipate pain can affect your whole movement and being. However regular therapy and exercise can make a huge difference.
  • Co-ordination: For co-ordination, you need a good range of movement, physical strength and practice. For example, if for some reason you stop putting your own socks on, you may lose the ability to do it for yourself.
  • Fatigue/ physical exhaustion: This can happen as early as mid 20s to early 40s. It is linked to the efficiency of your movement. If the effort for doing something is too high in relation to energy available, it can cause fatigue.
  • Higher risk of osteoporosis: Cerebral palsy can affect bone density making the bones more susceptible to injury as you get older.
  • Sleep disturbance: Changes in adulthood can be physical such as breathing, related to pain or it could be that organs are not quite working in the same way. Sometimes a change in sleeping position can help. Seek advice as knowledge and the ability to make some changes can make all the difference.
  • Orthotics issues: Problems getting the right wheelchair, orthotic splints or assistive equipment.

Mental well-being

Change is an inevitable part of growing older, but if you have cerebral palsy you may have to deal with accelerated ageing at a much younger age, or more complicated physical changes. It’s important to look after the mind as well as the body so that you can continue living life to the full. If you are experiencing frustration, unhappiness or a sense of isolation don’t struggle on your own, talk to someone or find adult support in your local area.

  • Reduced concentration: If your focus is taken up with something else, concentration can be reduced. For example, pain, or greater effort. With the right therapy and support you may be able to reduce the pain or find ways to be happier and more efficient in your working day.
  • Sense of loss: Losing the ability to do something you were once able to do can be incredibly frustrating and upsetting. Don’t assume you can’t recover your capacity, with therapy you may be able to recover some or all of your capacity, or find other ways to do what you’d like to be able to do.
  • Social isolation: If mobility becomes an issue it’s easy to lose the confidence getting out and about in the local community. Talk to someone, find out who can help.

Seek help, stay active

When you know that what you can and can’t do might change, you can be prepared. Monitor your condition using the Annual Self Check and take an active role in looking after your own health and wellbeing. Don’t put up with pain or discomfort, seek out activities, adult services, therapists and support in your area. Knowing how to manage your condition can make a huge difference to staying well.

National Institute for Health and Care Excellence

NICE the National Institute for Health and Care Excellence have created Quality Standards - CP in adults.

NICE quality standards describe high-priority areas for improvement in a defined care or service area. Each standard consists of a prioritised set of specific, consise and measurable statements. NICE quality standards draw on existing NICE or NICE accredited guidance that provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

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