Personal care

Tasks like washing, using the toilet and getting dressed can become more difficult and tiring with MND. Support with personal care is available to help you maintain independence for as long as possible. There are aids and equipment that can help and an occupational therapist (OT) can assess your needs and advise.

There may come a point when you need more support. Who provides personal care is your choice and you may want someone close to you to be involved. However, the challenges of MND increase over time. At some point, you and your carer may need help from care workers or other services.

“We need to think about how to make life easier for our carers too.”

Professional help not only reduces the workload for your main carer, but may help maintain relationships more as they have always been.

See the drop down section below on How do I get my needs assessed? for more details about how to get support.

You may also find our web pages about Health and social care services for MND helpful, with guidance on types of care and who can provide support.

You can find shared tips and support from other people with or affected by MND through our Online Forum.

Further information

For more detail, see the following resources and information sheets:

• Living with motor neurone disease
• Living alone with motor neurone disease or Kennedy's disease
• Caring and MND: support for you
• MND Checklist
• Personal care
• 6A – Physiotherapy
• 6B – Complementary therapies
• 6C – Managing pain
• 10B - What is social care?
• 11C – Equipment and wheelchairs

Adult social services can provide a needs assessment if you have MND, or a carer’s assessment if you are providing support. The assessment will work out your needs, including any support for personal care. You will also be able to explore which support services could assist and find out how to plan for emergencies.

Some external support may be necessary, as personal care needs will increase with MND. To arrange an assessment, contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland.

“You need to be as well informed as possible about how to access services.”

Benefits and financial support

You may also be entitled to a range of benefits and financial support. When making a claim or being assessed, always provide lots of detail about how long things take and any help needed to complete tasks. This is more likely to result in more appropriate support.

Find out more on our page about Benefits, financial support and cost of living.

Contact our Benefits Advice Service for personal guidance.

Further information

For government information, look on www.gov.uk for England and Wales, or www.nidirect.gov.uk for Northern Ireland.

See also our web pages about Health and social care services for MND 

You may find our page on Getting the right treatment or care with MND helpful. This explains how the NICE guideline on motor neurone disease can help.

For more information, see:

• What you should expect from your care
• 6C – Managing pain
• 10A – Benefits and entitlements
• 10B - What is social care?
• 10D – NHS continuing healthcare
• 10E – Work and MND
• 10F – Personal health budgets
• Caring and MND: support for you
• Caring and MND: quick guide

With MND, personal care can feel tiring. Activities such as getting washed and ready for the day become more difficult as muscles weaken. A range of equipment, aids and installations can help you, but MND symptoms can change rapidly. If you order equipment, it may no longer be suitable when it arrives. This can be costly and frustrating, so an expert assessment of your needs is important.

Ask your GP for a referral to an occupational therapist (OT), who can advise on your current needs and help you plan ahead. An OT can also provide guidance on home adaptations and possible funding.

What do I need to think about?

When being assessed, think about what would help you:

• Do you need a level access shower or grab rails?
• Would a bath board help you transfer into your bath more easily?
• With mouth care, would non-foaming toothpaste or a long handled toothbrush help?
• Are there any helpful gadgets to wash, dry and brush your hair?
• Is there anything that could support you if you wish to apply make-up?

There are lots of ways to maintain your independence for as long as possible and make it easier for your main carer to provide support.

Find more detail in the following resources and information sheets:

• Living with motor neurone disease
• Living alone with motor neurone disease or Kennedy's disease
• Personal care
• 10B - What is social care?
• 11C – Equipment and wheelchairs

If your limbs and hands weaken with MND, it can take longer to get dressed and undressed. In time, you are likely to need support.

As with getting washed and ready, support is available, but expert assessment of your needs is important. 

Ask your GP for a referral to an occupational therapist (OT), who can advise on equipment and aids that will suit your current and future needs for personal care.

What do I need to think about?

When being assessed, think about what would help you:

• Do you need help with fastenings?
• Are there other types of fastening?
• What other ways you can adapt your clothing?
• Are there gadgets to assist with getting dressed? 

You may also need to think about other aspects with clothing, such as temperature control.

There are lots of ways to maintain your independence for as long as possible and make it easier for your main carer to provide support.

Find more detail in the following resources and information sheets:

• Living with motor neurone disease
• Living alone with motor neurone disease or Kennedy's disease
• Personal care
• 6A – Physiotherapy
• 10B - What is social care?

With MND, your bladder and bowel are not usually affected. However, if your mobility is reduced, it may be more difficult to get to the toilet. Sometimes it's tempting to drink less as a result, but that can leave you dehydrated and lead to constipation.

You may also feel constipated if you're not moving around as much (as movement helps to stimulate the bowel). And if your breathing is affected, you may find you don't have as much 'push' when trying to clear the bowel.

Wearing clothes which are easy to unfasten can help with access to the toilet. There are also ways to make your bathroom or toilet more accessible for personal care. 

Ask your GP for a referral to an occupational therapist (OT), who can advise on your personal needs, including guidance on home adaptation and possible funding.

What do I need to think about?

When being assessed, think about what would help you:

• Do you need grab rails or a raised toilet seat?
• Would a washer dryer toilet help?
• Are there any helpful gadgets or fastenings for clothes?

Your GP may also be able to advise if you need any form of medication, for example, with repeated constipation.

Find more detail in the following resources and information sheets:

• Living with motor neurone disease (section 7)
• 6A – Physiotherapy
• 10B - What is social care?
• 11C – Equipment and wheelchairs

Access around your home, daily routines and controlling your environment for your personal care and needs can get more difficult as MND progresses.

A range of equipment, aids and installations can help you, but MND symptoms can change rapidly. If you order equipment, it may no longer be suitable when it arrives. This can be costly and frustrating, so an expert assessment of your needs is important.

Who can help me?

See the drop down above about How can I get my needs assessed? for assessment by adult social care services. You may qualify for various types of support.

Also ask your GP for a referral to an occupational therapist (OT), who can advise on your current needs and help you plan ahead. An OT can also provide guidance on home adaptations and possible funding.

What do I need to think about?

When being assessed, think about what would help you:

• Do you need doors widened or grab rails?
• Would environment controls help you manage more easily, for example, if you could operate things remotely, like turning lights on and off?
• Do you need support from a care worker at certain times of day?
• Are there any helpful gadgets?
• Do you need to think about equipment such as hoists, stairlifts or a through floor lift?

There are lots of ways to maintain your independence for as long as possible and make it easier for your main carer to provide support. You may find our pages on Mobility and movement helpful.

Further information

Find more detail in the following resources and information sheets:

• Living with motor neurone disease
• Living alone with motor neurone disease or Kennedy's disease
• MND Checklist
• Personal care
• 10B - What is social care?
• 10C – Disabled Facilities Grants and home accessibility
• 11C – Equipment and wheelchairs