Mobility issues when living with a terminal illness
Your illness and treatments may affect your body in different ways, including how well you can move around. This could range from feeling unsteady on your feet to not being able to walk.
It can help to understand why you might be having problems with your mobility now. And learning new techniques, including how to use mobility aids, may help you stay mobile. They can also increase your safety and wellbeing.
On this page:
Why do I have reduced mobility now?
There are many reasons why you may have changes in your mobility. These include:
- illness, including conditions like motor neurone disease and multiple sclerosis
- treatments for illness - including surgery
- weakness and fatigue (feeling very tired)
- breathlessness
- pain
- being confused
- having equipment that's connected to you such as syringe drivers, drips or oxygen.
If you have a sudden loss of mobility, tell your doctor or nurse as soon as possible as this could be a sign of a more serious problem.
How will problems with mobility affect me?
You may find it frustrating that you're having problems with your mobility, especially if you're used to being active. And it can have an impact on your quality of life, if you're not able to do things that are important to you. For some people, being less active can also cause additional physical and emotional problems.
The additional physical and emotional problems that some people experience include:
- Putting on weight.
- A loss of appetite and losing weight.
- Constipation.
- Fluid build-up in parts of your body like your feet and legs. See more information about fluid build-up.
- Sensitive skin or pressure ulcers caused by sitting or lying in the same position for long periods of time.
- A loss of muscle strength, which can mean activities become more difficult or tiring.
- Low mood, anxiety, sleep problems and depression. Read about depression.
If you are less mobile, you may also need help with things like washing and dressing. We know that this can be a difficult adjustment. But many people get help with these things as their mobility changes. And there are lots of things that can support you to stay as independent as possible.
How to manage mobility issues
It's important to speak to your doctor or nurse as soon as you notice any changes in your mobility. They can look for specific problems that might be affecting your mobility.
They can also refer you to other health and social care professionals for support.
Health and social care professionals
The health and social care professionals who could support you include:
Occupational therapists
An occupational therapist will first want to find out about you and what's most important to you. They can then give advice and support so you can stay as independent as possible.
Their support might include treatment sessions as well as arranging for equipment or adaptations to your home.
Read more about getting equipment and adaptations to your home.
Physiotherapists
A physiotherapist (physio) will work with you to develop a treatment plan, to support your mobility and safety. This may include exercises that can improve:
- muscle strength
- how much you can move your joints
- balance.
They can also give you:
- advice on managing breathlessness and teaching you breathing control exercises
- mobility advice and advice on the way you walk
- mobility aids like walking sticks or wheelchairs and show you how to use them.
Social workers
A social worker can help with equipment and adaptations to your home and can help you claim financial support and benefits. Being less mobile can make some things more expensive. For example, you may now need to take a taxi rather than drive or take the bus.
A social worker can also signpost you to voluntary organisations and social services in your area that may be able to provide support.
You may not be able to get back to being as mobile as you were before. But your health and social care team can help you to stay as independent as possible. Their support can also help to keep you safe, and to make the most of your energy.
Complementary therapies
Some people find that complementary therapies can help with aching muscles and can support your mental health and wellbeing. These include things like massage, acupuncture or types of mindful movement like yoga or tai chi. Speak to your doctor or nurse about what therapies might work for you.
Read more about complementary therapies.
Getting mobility aids and equipment
If you're having problems with your mobility, contact your local council (or trust). Or you could ask your doctor or nurse about having a community occupational therapist come and assess your needs.
Read our information about how to get social care and support.
The occupational therapist's assessment may suggest occupational therapy or physiotherapy, and may suggest equipment, adaptations and mobility aids.
Physiotherapy and mobility equipment may help you to stay active. They can make a real difference to how you can live each day − and may help you stay more independent. And being able to do activities that are important to you can also be good for your mood and wellbeing.
There are many different types of mobility aids. These include grabrails for doors or bathrooms, wheelchairs, walking frames and stair lifts. Depending on your financial situation, you may be able to get mobility support, including equipment, for free.
Adaptations to your home include things like wider door frames and ramps. You may be able to get a grant to pay for adaptations to your home.
The assessment process for home adaptations can be different depending on whether you live in England, Wales, Scotland or Northern Ireland.
Read about how to get adaptations for your home where you live in the UK.
You might also be eligible for help with travel. Read about getting help with travel costs and the Blue Badge scheme.
There are also national and local charities that help people with things like transport and shopping. You can ask your health and social care team (for example, your GP, district nurse or social worker) or local trust or council. They can tell you what is available in your area.
Getting support
If you would like to speak to someone about how you're feeling or for practical information you can contact the Marie Curie Support Line. You can call for free on 0800 090 2309*. Or you can email us at support@mariecurie.org.uk.
Read more about the Marie Curie Support Line.
If you think it would help to speak to one of our Information and Support Nurses, please let the Support Line know and they can arrange a call back for you.
Useful websites
NHS – home adaptations, help at home from a carer, social care you can get for free and housing
Carers UK − equipment and changes to your home
GOV.UK − disabled facilities grants
gov.scot – equipment and adaptations
gov.wales – housing adaptations
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About this information
This information is not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
