02 : How do we Swallow?
04 : Swallowing Difficulties
05 : Recognising Swallowing Difficulties
05 : Diagnosing the Problem
06 : Managing Swallowing Difficulties
07 : Managing Anxiety
08 : Managing More Severe Swallowing Difficulties
09 : Further Information
10 : MS Society Help and Information
Swallowing difficulties
Multiple sclerosis (MS) can cause swallowing
difficulties – also known as ‘dysphagia’. Between
30% and 40% of people with MS experience
difficulties with swallowing at some time, though
for some people changes are so small that they
are hardly aware of them.
Picking up these small changes to swallowing can
help avoid possible complications. This booklet
points out some of the signs to look for and ways
to manage them. Health professionals including
speech pathologists can help diagnose problems
and find the best treatments, but there are also
techniques that you, your family or carers can learn
to help with swallowing.
Just like any other symptom of MS, swallowing
difficulties may come and go. For example,
temporary changes in swallowing can happen
during a relapse and improve, or disappear
completely, over time.
For others, swallowing can become more difficult
in the long term. But however long symptoms last,
there are practical things that can help you manage
the changes effectively and make swallowing as
comfortable and easy as possible.
MS Essentials Swallowing Difficulties
01
How do we swallow?
When swallowing works perfectly, it is hard to
bolus up and backwards, pushing it hard
imagine the many different processes involved
against the roof of the mouth, so that it
with each swallow – many happen without any
squeezes backwards towards the throat.
conscious thought. From the moment food or drink
goes into the mouth to the time it reaches the
From this point onwards, swallowing becomes an
stomach, the swallowing process involves dozens
automatic action. Rather than being consciously
of muscles and many sensory messages to and
controlled, swallowing is now a series of reflex
from the brain.
actions, responding automatically to messages
from the part of the brain connected to the spinal
After food enters the mouth, the tongue and teeth
cord, known as the ‘brainstem’. There are two
move it backwards, crushing, grinding and mixing
parts to this automatic swallowing process. The
the food with saliva. This creates a ball of food
first is known as the ‘pharyngeal’ stage, named
ready to be swallowed, called a ‘bolus’.
after the medical term for the throat, the ‘pharynx’:
1.
The first action of swallowing is one that we
2a The soft palate is raised to block off the
consciously control. The tongue pushes the
nasal passages that lead upwards to the
soft palate
food bolus
tongue
throat (pharynx)
2a
1
02
MS Essentials Swallowing Difficulties
nose. At the same time, the tongue pushes
the oesophagus. These contract and relax
the bolus backwards, out of the mouth and
in turn to create a wave effect, known as
into the throat.
‘peristalsis’. This wave transports the bolus
to the stomach in the ‘oesophageal’ stage of
2b As soon as the bolus enters the throat, the
swallowing.
epiglottis and voicebox move to close the
airway that leads down to the lungs. This
Once the bolus reaches the stomach, the
stops food going down ‘the wrong way’.
entrance to the stomach opens to let the food
pass through. It closes again once food has gone
3
The second stage of this automatic
down, to prevent the contents of the stomach
swallowing action begins as the throat
from escaping back up into the oesophagus. If
muscles squeeze together to push the bolus
this happens, it can cause the sharp pains often
further down towards the stomach. The tube
known as ‘heartburn’.
that connects the throat and the stomach
is known as the ‘oesophagus’. A complex
arrangement of muscles run all the way down
food bolus
oesophagus
epiglottis
2b
voice box
3
food bolus
MS Essentials Swallowing Difficulties
03
Swallowing difficulties
It is not uncommon to feel worried or anxious
● Malnutrition or dehydration: over time, the body
about swallowing difficulties. Swallowing is such
might not get all the energy and nutrients it
an everyday part of living that any changes can be
needs if difficulties are left unrecognised and
a shock. But if you do notice changes, that does
unmanaged.1
not mean they will inevitably get worse, and with
proper care, problems can be managed effectively
What can cause swallowing difficulties?
and safely.
The medical name for swallowing difficulties is
‘dysphagia’. MS can cause dysphagia if there
What problems can occur?
is damage to any part of the brain that controls
Ways to manage swallowing difficulties may be
swallowing, or damage to the connections between
more effective if the problem is picked up early.
2
the brain and the spinal cord (the ‘brainstem’).3
So, even if problems are not serious, let your
doctor or MS health professional know if you are
Messages in the brainstem control the movements
aware of one or more of these signs:
of the body, so damage to this area can lead to
a combination of symptoms affecting muscles,
● Problems chewing
including the muscles used in swallowing.1
● Food sticking in the throat
● Food or drink coming back up
Because of the role the brainstem plays in
● Sluggish movement of food going down,
swallowing and mobility, people with MS who
or difficulty moving food back through the mouth
are more physically impaired are more likely to
● Coughing and spluttering during and after eating
experience swallowing difficulties, but they can
● Excessive saliva, which may cause dribbling
happen at any time in MS.1 For example, some
people have swallowing difficulties during a
Monitoring and managing these signs could help
relapse, which disappear as they recover.
you avoid more serious problems that might
develop if left unchecked:
Symptoms may vary through the day. Heat, fatigue
and stress might all have an effect in making
● Aspiration: when food or drink trickles down the
swallowing more difficult and could be influenced
windpipe into the lungs – when it ‘goes down the
by other MS symptoms, such as fatigue or pain.
wrong way’. This can be very subtle and you may
But swallowing might also become more difficult
not even be aware it is happening (this is known
because of other aspects of daily life, such as
as ‘silent aspiration’). However, aspiration can
stress and anxiety, or rushed mealtimes.
lead to chest infections.1 If you get several
04
chest infections, it is important that the causes
Finding the causes of difficulties and factors which
are investigated fully, so that aspiration and
make problems worse can help find the best ways
swallowing difficulties are not overlooked.
to manage your difficulties.
MS Essentials Swallowing Difficulties
Recognising swallowing difficulties
Recognising the problem early can help with finding effective ways to manage swallowing
difficulties and help avoid possible complications4. You might be aware of problems yourself, or
it may be friends and family who notice the first changes. It could be your doctor or MS health
professional. Some of the signs will be obvious, others may be more subtle – and you may have
developed ways of coping with minor changes almost without realising.
Diagnosing the problem
Your doctor or MS health professional may
food passes from the mouth and down to the
refer you to a speech pathologist to help
stomach, problems happening inside the body can
diagnose the problem.
be seen.
As well as asking questions, a speech pathologist
Managing swallowing problems needs to
may watch you eating and drinking to discover the
be tailored to your own needs and situation,
exact difficulties you are having. Through this, they
which might change over time. MS is an
might notice issues in the early stage of swallowing
unpredictable condition, so a speech pathologist
– in the mouth – or later, as food or drink goes
may need to reassess your needs several times,
down the throat.
to see if your situation has changed, and if
techniques are still effective. If you feel your
If it is difficult to tell what is happening with your
needs have changed, ask for a new assessment.
swallowing, they might also suggest a referral to a
If you do not have the details of your speech
radiologist for a ‘video-fluroscopy’. This is a moving
pathologist, your GP or MS health professional
x-ray of the swallowing process. By watching how
can refer you.
MS Essentials Swallowing Difficulties
05
Managing swallowing difficulties
Once the type of difficulty has been identified, the
a good consistency for swallowing by mixing it
speech pathologist or dietitian can work with you
well with the saliva.
to find the best ways to manage it. This will be an
individual thing and it is important that you can find
● Alternate liquid with solid. For some people,
techniques that work for you. For example, there
swallowing problems mean that food gets stuck,
may be certain causes, such as fatigue or stress,
or travels only very slowly towards the stomach.
that act as ‘triggers’ to make swallowing more
Drinking between mouthfuls can help to keep
difficult. Controlling these triggers could help to
the food moist and wash it down.
reduce the difficulties you experience.
● Avoid speaking whilst eating. The two different
Different techniques help with different problems,
processes can interfere with each other and
which is why it is important to have the advice of
could increase the chance of choking.
a health professional to help find what suits you.
They may suggest some of the following techniques
for you, your family or carers:
● Adapt the food you choose so it suits you
better – but remember to keep it appetising.
Some people find that very thin liquids are
● Keeping a good, upright posture when eating
more likely to go down the wrong way, so use
and remaining upright for at least 30 minutes
thickeners to make them easier to swallow.
after the meal. A physiotherapist can help with
You might benefit from eating softened foods
posture. There may be other changes to posture
or from moistening dry foods with gravy
or movement techniques suggested by a speech
or custard.
pathologist, tailored to your own needs.
Speech pathologists can suggest appropriate
● Eating in a relaxed atmosphere. Swallowing can
changes to your food and drink to get the right
sometimes be easier if you are relaxed. Being
consistency for you. If you do need to adapt
relaxed might help you concentrate on your
the foods you eat, it is important to still have
swallowing, or help the muscles involved to work
things you like. See page 9 for easy-to-swallow
to the best of their ability. Some find it best to
recipe books.
eat in a quiet atmosphere, without radio, TV or
conversation for distraction.
● To ensure you are getting the nutrition you
need, a dietitian can help you plan what you eat.
● Not rushing a meal. If the swallowing process is
For example, small, more frequent meals and
not in perfect working order, allowing it the time
milky drinks might help you get enough calories
to deal with each swallow in turn can be helpful.
if you find it uncomfortable to eat larger meals.
Nutritional supplements are helpful for
● Chewing well. This helps make the bolus of food
06
MS Essentials Swallowing Difficulties
some people.
Dental hygiene
Dental problems can make it harder to chew or swallow, so it is important to have regular check
ups with your dentist. If you have an ongoing problem with a dry mouth, this can affect the health
of your teeth and gums. Some drug treatments can cause a dry mouth, so making adjustments
to medication may improve things. Your dentist may recommend a mouthwash or fluoride gel to
help avoid problems and can give advice on the easiest ways to brush effectively.
Managing anxiety
Any new symptom can cause worry and requires
and Emotions has further information on
some adjustment, and this may be particularly
managing anxiety.
true when an everyday activity like swallowing
is affected.
A particular cause of anxiety for some people is
the thought of choking whilst eating or drinking.
Left untreated, anxiety about swallowing can
With proper care and a good awareness of the
become a vicious circle – swallowing problems
issue, choking can be avoided.
and anxiety can each make the other worse.
But there are ways to manage and treat both
Simple techniques such as those mentioned
issues and break the cycle. The next chapter of
above can help prevent it. As a precaution, people
this booklet looks at ways to manage more severe
involved in the care of someone with swallowing
swallowing difficulties. If you experience ongoing
difficulties can be trained in first aid techniques to
anxiety, support is available from a number
prevent choking. St John Ambulance can arrange
of health care professionals and your GP or MS
this training. Your nearest contact will be listed in
health professional can make suitable referrals.
the local phone book.
The MS Essentials publication Mood, Depression
MS Essentials Swallowing Difficulties
07
Managing more severe swallowing difficulties
Sometimes, swallowing or chewing is so
to eat a little by mouth, so they don’t lose the
difficult that a person experiences weight loss
chance to enjoy their favourite foods. The PEG
or dehydration. If softening food, thickening
tube is usually fitted under local anaesthetic
drinks and eating smaller meals doesn’t stop
and the process is fully reversible if no longer
these problems, the use of a direct liquid feed
needed. Even so, it can still be a major change
may be appropriate. In the short term (usually
for a person with MS, their family and carers.
no longer than three or four weeks) some
Some adjustments to a person’s lifestyle are
people can benefit from ‘nasogastric tube
inevitable and carers will need to learn to care
feeding’. Liquid food passes through a very thin
for the PEG tube.
tube through the nose and into the stomach,
avoiding the need for chewing or swallowing.
A range of community health professionals,
including speech pathologists, dietitians and
If severe swallowing difficulties persist, a
nurses can help when considering PEG feeding,
PEG (percutaneous endoscopic gastrostomy)
or if issues arise once a PEG system is fitted.
system is more common. This allows
Most manufacturers of PEG systems also have
nourishing liquid food to go directly through a
24-hour helplines and employ specialist health
tube into the stomach and can be a relief to
professionals to help PEG users, their family
those who have severe chewing or swallowing
and carers.
difficulties. People can sometimes continue
08
MS Essentials Swallowing Difficulties
Further reading and useful websites
www.easytoswallow.co.uk
Easy-to-swallow, Easy-to-chew Cookbook. Over
This website contains recipes for soups, main
150 tasty and nutritious recipes for people
courses and desserts that people find easier to
who have difficulty swallowing.
swallow.
By Donna L. Weihofen, JoAnne Robbins, and
Paula A. Sullivan. Published by John Wiley
I-Can’t-Chew-Cookbook.
& Sons Inc. (2002), ISBN: 0471200743.
Delicious soft-food recipes for people with
These American books contain recipes for a
chewing, swallowing and dry-mouth disorders.
wide variety of meals and include nutritional
by J Randy Wilson. Published by Hunter House
information for each one. Measurements for
Publishers (2003), ISBN: 0897934008.
recipes may differ from Australian scales.
Useful organisations
● Independent Living Centre
Email: [email protected]
Provides information and advice on equipment to
enhance independence. www.ilcaustralia.org
● Speech Pathology Australia
Provides information about how to find a speech
There are offices and display rooms in all
pathologist (advanced search: progressive
Australian states and territories.
neurological disorders)
www.speechpathologyaustralia.org.au
● Gastrostomy Information
and Support Society (GISS)
This non-profit, community based self-help
Tel: (03) 9642 4899, Fax: (03) 9642 4922
Email: use the email form on the ‘Contact Us’ page
group advocates for the rights of people with
gastrostomies, and liaises with government
● Dietitians Association Australia (DAA)
regarding funding. Their website provides helpful
Provides information about how to find an
information about choosing and living with a
Accredited Practising Dietitian (search area
PEG system.
of practice: disability). Branches are located
www.scopevic.org.au/therapy_advisory_giss.html
throughout Australia. www.daa.asn.au
There are offices in Queensland, New South Wales,
National Office
Victoria and South Australia.
1/8 Phipps Close
Deakin ACT 2600
National Office (Box Hill, VIC)
Tel: (02) 6282 9555, Fax: (02) 6282 9888
Tel: (03) 9843 2000, Fax: (03) 9843 2033
Email: nationaloffi[email protected]
MS Essentials Swallowing Difficulties
09
MS Society help and information
● MS Society publications
● MS telephone support
The MS Society has publications on a wide
The MS Society provides telephone services in
variety of topics, such as information for people
each state that offer information and support
newly diagnosed with MS, health and wellbeing,
to people with MS, their families, friends and
managing relapses, and support services. For a
carers. Trained staff can answer questions
publications list and order form visit the website
about MS and related personal issues. All calls
www.msaustralia.org.au or telephone the MS
are treated in complete confidence.
Society in your state.
For telephone numbers please see next page.
● MS Australia Resource
Centre Online Catalogue
● Interpreter services
For up-to-date information and resources
Some printed information is available in other
about MS you can search the Resource
languages and advice on MS is also available
Centre catalogue on the MS Australia website
in other languages by speaking to a telephone
www.msaustralia.org.au. This catalogue
support worker via an interpreter. If you require
includes the combined holdings of the MS
an interpreter please arrange someone to
Society libraries throughout Australia and you
contact the MS Society in your state.
can email your request directly from the website.
● MS Society network across Australia
● MS Australia websites
Keep up-to-date with MS news, events and
offices, local branches and local auxiliaries
services by visiting both the national MS
across Australia. For more information check
Australia website www.msaustralia.org.au
the MS Australia website or call the MS Society
and the website for your state. The state
in your state.
websites are accessible through the MS
Australia website (or, see next page). Each
state also produces a magazine which is usually
available on their website.
10
The MS Society has a network of regional
MS Essentials Swallowing Difficulties
References
1 Prosiegel, M. et al. (2004) Dysphagia and multiple sclerosis. The International MS Journal,
11, 22-31.
2 Hartelius, L. and Svensson, P. (1994) Speech and swallowing symptoms associated with
Parkinson’s disease and multiple sclerosis. Folia Phoniatrica et Logopaedica, 46, 9-17.
3 Logemann, J. A. (2000) Dysphagia. In: J. S. Burks and K. P. Johnson (eds.) Multiple sclerosis:
diagnosis, medical management and rehabilitation. New York, Demos Medical Publishing.
p.485-90.
4 National Institute for Health and Clinical Excellence (2003) NICE clinical guideline 8. Multiple
sclerosis: management of multiple sclerosis in primary and secondary care. London, NICE.
MS Essentials Swallowing Difficulties
11
State MS Societies
MS Society of NSW/VIC
NSW
MS Society of SA & NT
Studdy MS Centre
274 North East Road
Joseph Street
Klemzig SA 5087
Lidcombe NSW 2141
Tel: (08) 8360 0800
Tel: (02) 9646 0600
Fax: (08) 8360 0899
Fax: (02) 9643 1486
Email: [email protected]
Email: [email protected]
Web: www.ms.asn.au
Web: www.mssociety.org.au
MS Information Line: 1800 812 311
MS Connect: 1800 042 138
MS Society of Western Australia
Victoria
29 Parkhill Way
The Nerve Centre
Wilson WA 6107
54 Railway Road
Tel: (08) 9365 4888
Blackburn VIC 3130
Fax: (08) 9451 4453
Tel: (03) 9845 2700
Email: [email protected]
Fax: (03) 9845 2777
Web: www.multiple-wa.asn.au
Email: [email protected]
MS Information Line: 1800 287 367
Web: www.mssociety.org.au
Information & Intake Service: 1800 287 367
MS Society of ACT
Gloria McKerrow House
MS Society of Tasmania
117 Denison Street
15 Princes Street
Deakin ACT 2600
Sandy Bay TAS 7005
Tel: (02) 6285 2999
Tel: (03) 6220 1111
Fax: (02) 6281 0817
Fax: (03) 6224 4222
Email: [email protected]
Email: [email protected]
Web: www.ms.org.au
Web: www.msaustralia.org.au/tas
MS Information Line: 1800 356 354
MS Information Line: 1800 676 721
Multiple Sclerosis Research Australia (MSRA)
MS Society of Queensland
293 Mowbray Road
286 Gladstone Road
Chatswood NSW 2067
Dutton Park QLD 4102
Tel: (02) 9468 8390
Tel: (07) 3840 0888
Fax: (02) 9411 7456
Fax: (07) 3840 0813
Email: [email protected]
Email: [email protected]
Web: www.msra.org.au
Web: www.msaustralia.org.au/qld
MS Information Line: 1800 177 591
12
MS Essentials Swallowing Difficulties
Disclaimer:
We have made every effort to ensure that the
information in this publication is correct. We do not
accept liability for any errors or omissions. The law and
government regulations may change. Be sure to seek
local advice from the sources listed. Suggestions for
improvement in future editions are welcomed. Please
send them to [email protected]
Adapted from the UK resource
‘MS Essentials – Swallowing difficulties’
with kind permission of the UK MS Society.
Edited by Lynn Guilhaus
With thanks to Jackie Brown
Australian copyright © Multiple Sclerosis Limited
Printed February 2008
Original article written by James Bailey
With thanks to Professor Mike Barnes, Kathryn
Bellshaw, Vicki Gutteridge, Kirsty Harrison, Kate
Richardson and all the people affected by MS who
contributed to this publication.
Original copyright
© Multiple Sclerosis Society 2006
First published December 2006
www.msaustralia.org.au