Treatments and medication

Why would I need tube feeding?

If you have difficulties eating and drinking, tube feeding enables you to receive liquid feeds and drink through a tube.

Swallowing difficulties can cause coughing when eating and drinking. You may be at risk of repeated chest infections if this happens, as food and drink particles can get into your airways. Tube feeding can help avoid this, and ensure you stay nourished and hydrated. It can also save time and energy if mealtimes are taking longer.

How is tube feeding fitted?

A tube can be passed through your nose and into your stomach, known as nasogastric tubing. This would normally be used for short periods of time.

With a long-term condition like MND, you are more likely to be offered a gastrostomy. This small operation inserts a tube through your abdomen, into the stomach.

Once a tube is in place, you can still eat and drink by mouth and use the tube simply to top up your food and drink. Later, your tube can be used to meet all your eating and drinking needs, if needed.

How do I get advice?

You may wish to ask your health and social care team how tube feeding can help and how it may affect decisions about future care. Whether or not you choose to go ahead, being fully informed can help. Your views may change over time and knowing the facts can help you make timely decisions.  Introduction of tube feeding is recommended before significant weight loss occurs.

Further information

For more details, see information sheet 7B – Tube feeding.

For information about nutrition with MND and easy-swallow recipes, see our Eating and drinking guide.

myTube website

See the myTube website for video content and information about tube feeding. The myTube site was developed by SITraN – the Sheffield Institute for Translational Neuroscience. The personal stories on myTube can help when making your own choice whether to have a feeding tube fitted or not.

If you experience breathing difficulties, there are a number of treatments and therapies to help.

Ask your GP or health and social care team for a referral to a respiratory consultant, for guidance. They will assess your needs and discuss the options available.

Will I need oxygen?

Extra oxygen is not usually recommended with MND, as it can upset the balance in your body between oxygen and carbon dioxide. However, it may be used with caution if your oxygen levels are low.

See Forms to help communicate your needs in our information resources, for details about our MND Alerts and Wristband, which include a warning about oxygen and MND for professionals who may not be aware of the risk.

How does assisted ventilation work?

Assisted ventilation uses a machine to support your breathing. In most cases with MND, this improves the flow of natural air to help you breathe (not oxygen). There are two types:

• non-invasive ventilation (NIV), where a portable machine supports your own breathing by providing extra air through a mask
• tracheostomy ventilation (sometimes called invasive ventilation), where a machine supports your breathing through a tube inserted into the windpipe through the neck.

Your respiratory team can advise on ventilation and how this support is provided in your area.

Ventilation may extend life, but it cannot slow down the disease itself or reverse symptoms. This means other disabilities caused by MND will continue to progress. In time, you are likely to become reliant on either type of ventilation, so being fully informed about this type of support is important.

Further information

See our suite of information sheets for more detail about breathing support and ventilation:

8A – Support for breathing problems
8B – Ventilation for motor neurone disease
8C – Withdrawal of ventilation with MND
8D – Air travel and ventilation

If your ability to cough and clear secretions has weakened, see the video on cough augmentation at the bottom of this web page. This provides guidance on a technique called breath stacking, which can help increase the air in your lungs to support a weak cough.

myBreathing website

See the myBreathing website for video content and information about assisted ventilation. The website has been developed by SITraN – the Sheffield Institute for Translational Neuroscience. Made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life.

In addition to the treatments and medication described on this page, a wide range of other support is available. Some of the main therapy options are listed below, with links to relevant pages and resources.

You may need different help at different stages, depending on your symptoms. All MND support is designed to improve quality of life with the disease.

See our booklet Types of care and our other web pages on:

• Types of care and who provides them
• How can I check if my treatment and care are appropriate?
• Living with MND
• Support for carers

You may come across medical and research terms when reading about MND - see our page on What do all the words and initials mean?

Physiotherapy and exercise

“Physiotherapy has helped me feel proactive.”

Physiotherapy can help you manage certain symptoms, such as fatigue, cramps and stiffness in muscles and joints. Following assessment, you may be advised on appropriate exercise, assisted exercise or passive exercise where someone moves your limbs. Exercise cannot reverse or delay the progress of the disease, but it can ease comfort, improve flexibility in joints and strengthen muscles not yet affected by the disease.

See our page on Mobility and movement and information sheet 6A – Physiotherapy

For information on pain, see information sheet 6C - Managing pain.

Occupational therapy and equipment

“I remain determined to get on with my modified life…my outlook, by necessity, is having to change.”

An occupational therapy assessment looks at your daily living needs, in terms of quality of life. The main aim is to help you maintain independence for as long as possible. This includes looking at how you complete tasks, as assistive equipment and disability aids can help with grip, and movement and mobility. Adaptations to your home environment could make life easier too. Suggestions on different ways to do things can be very helpful for both yourself and your carers.

See our page on Mobility and movement and information sheet 11C – Equipment and wheelchairs.

See also our page on Needs assessment, home care and home adaptations.

For information on pain, see information sheet 6C - Managing pain.

Speech and communication support 

“If I cannot say as much as I used to say, I have to say it better. So the choice of words becomes crucial.”

For assessment of your needs, and guidance on speech therapies, techniques, voice banking and communication aids, ask your GP for a referral to a speech and language therapist who has experience of working with MND.

Our Communication Aids Service can also offer guidance and selected aids on loan. The service also works with professionals to help them understand the needs of people with MND, and provide appropriate speech and communication support. Contact MND Connect for contact details of the service.

“Now I know there is help out there about voice banking and communication aids, with people willing to do all they can. This is very comforting. Thank you.”

For more details, see our page on Speech and communication and information sheet 7C – Speech and communication support.

Complementary therapies

“A reflexologist kindly massages my feet, hands and arms, which helps with circulation and generally feels good. These appointments were facilitated by the local hospital.”

Complementary therapies do not replace conventional medicine and treatments, but work alongside them. These therapies include a wide range of options, such as massage, acupuncture, reflexology and others.

Some people find this type of support helps to ease symptoms, and reduce stress or anxiety. In most cases, these services will charge a fee.

See the video at the bottom of this page for an example of music therapy, a type of complementary therapy.

For more details, see information sheet 6B – Complementary therapies.

For information on pain, see information sheet 6C - Managing pain.

Counselling and psychological support

“Anyone in my position or similar will have fears, but not all the fears will be the same.”

If needed, your GP can refer you to a counsellor, psychologist or appropriate other service for emotional and psychological support. There may be a waiting list, but a local hospice, specialist palliative care team or social worker may also offer counselling as part of their palliative service.

Some people with MND experience changes to thinking and behaviour. These changes are usually mild, but can be more severe. A small number may develop frontotemporal dementia, which needs additional support. A screening test from a trained professional, such as a neuro-psychologist or neurological consultant, can help work out if any changes are happening and whether they are likely to affect your daily routines.

“I need someone to help me decide about choices at the moment.”

See our page on Emotions, thinking and behaviour and the following guides:

• Telling people about MND
• Emotional and psychological support
• Changes to thinking and behaviour with MND

Riluzole is the only drug currently licensed for the treatment of MND in the UK and approved for use by the NHS.

How does riluzole work?

It is not a cure for MND, but clinical trials showed a modest impact on survival for people with MND, where use was suitable. Glutamate (a chemical messenger in the central nervous system) can cause nerve damage if produced in excess. Riluzole is thought to work by reducing glutamate activity.

How do I get riluzole?

Ask your GP for a referral. In most cases, a hospital consultant such as a neurologist will assess a person’s suitability for riluzole and prescribe the first course of the drug. After this, the GP and specialist should agree a shared-care protocol, under which the GP issues repeat prescriptions. In a few areas however, the prescribing and dispensing of riluzole is undertaken by the specialised centre throughout the patient’s illness.

How is Riluzole monitored?

Normal baseline blood test should be undertaken initially, then monthly full blood count and liver function test for three months, followed by three-monthly for the fist year, and annually thereafter. Responsibility for prescribing and monitoring should be made clear in the protocol.

Further information

See more details and how to access this drug in information sheet 5A – Riluzole.

A technology appraisal is an assessment of whether a medicine or therapy is effective by NICE (the National Institute for Health and Care Excellence). Technology appraisal Riluzole (TA20) recommends that riluzole should be used with MND. The recommendation covers England and Wales, but NICE recommendations are often taken into account in Northern Ireland and elsewhere.

Researchers continue to investigate other drugs in the laboratory and through clinical trials, with the help of people living with MND.

MND and Kennedy's disease are complex diseases, with a range of possible symptoms. See What is MND? or What is Kennedy's disease?

No individual has exactly the same experience as another. This means symptom control needs to be constantly reviewed, including the need for any medication.

If you have any health problems, ask your GP for guidance. Depending on your symptoms, you may need to be referred to a specialist. Medication may be advised where suitable, to ease symptoms and improve quality of life.
You may not experience every symptom, but medication may help if needed. For example, with:

• cramps
• pain from stiff joints
• emotional wellbeing
• constipation
• thick or thin saliva
• breathlessness
• anxiety.

There may be other types of medication available, depending on your needs.
For information on pain, see information sheet 6C - Managing pain.

The Department of Health advises getting a flu jab if you live with a chronic disease, including motor neurone disease (MND). You may also qualify if you are caring for someone with MND, who may be at risk if you fall ill.

For those most at risk, flu can lead to more serious illnesses including bronchitis and pneumonia. It only takes a minute to get the flu jab each year, but this will protect you for 12 months.

Contact your GP surgery to arrange an appointment. The flu jab is available from the beginning of October every year.

If you would like more advice, contact MND Connect.