Physiotherapy for people with motor neurone disease (MND)

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Physiotherapy for people with
motor neurone disease (MND)
Physiotherapy aims to promote independence, by improving normal
movement patterns. This means helping you to move with purpose to carry
out daily activities, with the best possible coordination and the most efficient
use of energy. This information sheet explains how physiotherapy can help if
you have been diagnosed with MND and how to access this support.
With MND, we recommend that you seek advice from your general
practitioner (GP) or physiotherapist before embarking on any exercise
programme.
“We use physiotherapy to help individuals achieve their maximum functional
mobility, to promote independence, opportunity, control and dignity within the
limits of their condition.”
Liza Robinson, physiotherapist
How can physiotherapy help with MND?
While physiotherapy cannot reverse damage to muscle groups weakened by
MND, it can help to keep weakened muscles as strong as possible through
exercise (see later heading, How much exercise can I do?).
Physiotherapy can also:
• keep you mobile for as long as possible by preventing muscles from
becoming stiff
• help maintain maximum range of movement (ROM)
• help maintain comfort and reduce problems associated with muscle
weakness
• strengthen muscle groups not yet affected by MND (which can help to
compensate for those that have weakened or wasted)
• help maintain circulation through active muscle movement.

Each person with MND is affected in a unique and unpredictable way. Your
physiotherapist will be able to provide a detailed ongoing assessment of your
physical needs while listening carefully to your views. They will have an
ongoing supportive role and help you to be as independent and comfortable
as possible, at any particular stage of the condition.
How does MND affect muscles?
As the motor neurones begin to stop carrying messages to your muscles,
MND can impact in various ways. Muscle groups may become weak and
unable to make joints move, which affects mobility. When it is difficult to
move a part of the body, associated joints become stiff and muscles may
tighten. Everyday activities such as washing, shaving and dressing can
become increasingly difficult and sometimes painful.
Once the motor neurones that control a particular muscle have degenerated,
the muscle cannot be regenerated by exercise or anything else. However,
muscle elasticity, range of movement for joints and prevention of muscle
shortening can be helped by regular exercises.
How can a physiotherapist help me?
“One of the frustrations of a diagnosis of a disease like MND is the
knowledge that there is currently no cure and that you are powerless to stop
its advance. Physiotherapy has helped me feel proactive rather than a
helpless victim.”
Karen Walker, person with MND
Physiotherapists help by:
• giving advice on posture and positioning
• developing an individual exercise programme suitable for your
particular needs and abilities
• providing diagrams of the exercises to help you remember the
techniques
• advising on different but positive ways to do things to compensate for
any deterioration in movement
• providing guidance on breathing management and how to conserve
energy. Respiratory physiotherapy can also be benefical during a
chest infection, providing techniques to help you clear your chest to
aid breathing and speed up recovery
• explaining what is happening to the body, as it changes with the
progression of the disease (further guidance can be sought from the
wider clinical health team, eg a respiratory consultant can advise on
specific progression of any breathing issues)
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• helping to advise on or arrange for specialist equipment, eg walking
aids or orthoses, (a foot-supporting device or insole, which makes it
easier to move your foot as you walk and gives stability)
• showing your carer how they might help you, with active, assisted and
passive exercises (see later heading What happens after
assessment?)
• advising your carer on safe movement and handling techniques or
how to source appropriate training.
“Physiotherapy should include emotional and psychological support, be
patient focused, working with the individual and carer/family towards realistic
goals.”
Liza Robinson, physiotherapist
What happens during assessment?
It is important that any assessment is carried out by a qualified registered
physiotherapist and that treatment is tailored to your needs. It is also
important to note that any physiotherapy you receive may be different to
someone else with MND, as:
• each individual with MND is affected in different ways
• you may be at a different stage of progression
• you may have other conditions or injuries, unrelated to MND, which
can influence the treatment given.
As MND is progressive, treatment is likely to adapt to continue to meet your
changing needs.
An assessment usually includes an evaluation of:
• muscle tone and muscle power
• range of selective movement (that which you can do on your own)
• range of passive movement (that which is controlled externally, eg by
a helper)
• balance and posture
• quality and level of functional mobility (as in your ability to move
around to accomplish daily activities or social interaction)
• respiratory concerns and fatigue
• any existing coping strategies and compensatory techniques that you
have developed and to assess if there are better solutions to avoid
secondary problems, such as pain
• safe moving and handling techniques, if your carer is assisting you
with mobility.
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What happens after assessment?
In the early stages of the disease, you might start with simple maintenance
exercises, which you can do yourself. However, as the disease progresses,
you will probably need to move on to a different regime of less active
exercises. This can still be very helpful to prevent joint stiffness and muscle
shortening.
Each physiotherapist will have a different approach, but within common
themes. This means that individual programmes are likely to include:
ROM exercises: to maintain range of movement in the joints, which helps to
prevent joint deformity and soft tissue shortening. These are usually done
systematically, with the joints of one limb exercised in a particular order
before the next limb is exercised and so on. The object is to move each
affected joint through its full range of motion every day to prevent joint
stiffening.
Massage and soft tissue mobilisation: to increase circulation, mobilise
connective tissue, reduce pain, aid relaxation, assist muscle tone and reduce
spasticity (stiffening and tightening).
Breathing techniques: to facilitate respiratory effort and to aid clearance of
secretions.
Exercises: to achieve the best possible functionality dependent on your
current circumstances. These can be split into three categories:
• Active exercises: when you do not require any assistance to make
your muscles perform their full movement
• Active-assisted exercises: when you can no longer fully move
through a ROM exercise on your own, but a helper can assist the
movement
• Passive exercises and stretches: when the muscles can no longer
perform any of the movement and a helper guides joints through their
range of movement by supporting and moving your limb. Please note
that passive exercises work the joints, but not the muscles. Carers
should be trained by a physiotherapist to do these exercises correctly.
Although MND will continue to progress and cannot be reversed, access to
ROM exercises in the early stages of MND can help to maintain and possibly
improve functional range of movement, for a period of time:
“With gentle persuasion and exercise, my husband regained enough range of
movement for me to wash under his arms again and dress him pain free.”
Wife and carer of someone living with MND
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How much exercise can I do?
“The ‘no pain, no gain’ motto made popular in the fitness community doesn’t
apply to people with neuromuscular diseases. Your goal should be to
maintain functional strength, endurance and independence, and pain won’t
help you get there.”
Mike Haynes, Muscular Dystrophy Association US
No exercise should cause pain. If you do experience pain, the exercise
should be stopped and contact made with your physiotherapist. It may be
that you are not doing the exercise correctly, or perhaps the exercise
programme needs to be modified. With continued pain, please inform your
GP.
“Prior to becoming ill, I was a wee bit of a gym junkie…I was used to
monitoring speeds, endurance, flexibility, muscle tone, weight and the
like…Following diagnosis, I found it difficult to exercise when I could see no
progress. Now, with my mobility affected, I am able to see the benefits of
such limited exercise.”
Person living with MND
Moderation of exercise is important with MND. You can easily over-tire
yourself and should avoid over-vigorous exercises and stretches. This
includes avoiding excessive passive exercise. Extreme resistance exercises
are not advised, as this can lead to muscle weakness and make joints
susceptible to trauma. It is essential to understand your limitations, as fatigue
will only increase weakness and sap your energy, making it harder to carry
out your daily routine.
This is particularly important as the disease progresses, when even gentle
exercise and passive exercise may cause strain if done incorrectly.
Continuous review by your physiotherapist ensures any programme you
follow is monitored and adapts to your changing needs. Treating functional
movement patterns as a whole, such as washing your face or dressing, can
help maintain functional strength for as long as possible.
It is also important to remember that exercise will not strengthen muscles that
have already been weakened by MND. However, strengthening healthy
muscles helps to compensate for muscles that are no longer working
properly.
How do I access physiotherapy services?
Once diagnosed, you may be referred to a qualified registered
physiotherapist as part of a general medical assessment. You can also ask to
be referred. In many areas you can make your own arrangements, through
self-referral.
Referrals through a health professional will usually be directed to the relevant
area of physiotherapy, eg to a neurological physiotherapist or to a domiciliary
physiotherapist (who makes home visits).
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Not all physiotherapists will have worked with MND before. The specialist
skills and experience of a neurological physiotherapist, either from the NHS
or an independent practice, can provide a more in depth approach to specific
movement disorders, as with MND. When being referred, try to discuss what
type of physiotherapist would be best suited to help:
A referral from your GP
Depending on where you live, make an appointment with your GP and ask to
be referred to a physiotherapist who has knowledge and experience of
working with MND.
Referral from your MND Care Centre or local neurological centre
Many people living with MND are linked to an MND Care Centre or a local
neurological centre. Both offer co-ordinated care to people with MND in a
multi-disciplinary team (MDT) setting, where you can receive assessments
and treatment from a wide range of health and social care specialists,
including referral to specialist physiotherapy services.
Please contact MND Connect for further information about MND Care
Centres and locations. We also provide information sheet 16 – MND Care
Centre Programme (see Further information at the end of this sheet for
details on how to access other publications).
Local hospices
Physiotherapists are sometimes available through your local hospice, as part
of their palliative care provision. You can self-refer to a hospice.
Self-referral
It is becoming easier to refer yourself for NHS treatment. This includes
physiotherapy and a whole range of other health services. Some regions
already allow people to bypass their GP and go straight to physiotherapists
for NHS treatment. Your GP or local NHS hospital will be able to tell you if
self-referral is available in your area.
Paying privately
If you are in a position to pay for your treatment, there are a large number of
physiotherapists across the UK. If you decide to pay privately, check that
your physiotherapist is registered with the Health and Care Professions
Council (HCPC), (see Other organisations towards the end of this sheet for
contact details).
Occupational health schemes
Some large employers run occupational health schemes for their employees
and may include provision for physiotherapy treatment. If you are employed,
check to see if a scheme is available and if you are eligible.
Private medical insurance
Private medical insurance schemes often include physiotherapy. If you have
private medical cover, check to see if you are eligible.
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How often do I need to see a physiotherapist?
This will change with the progression of the disease and service provision
also varies across the UK. However, a physiotherapist usually prefers an
ongoing supportive role, reviewing your needs at regular intervals. Monitoring
by telephone can be helpful, enabling the physiotherapist to respond to your
queries or those of your carer.
You will be encouraged to do your physiotherapy plan as independently as
possible. Sometimes it is not possible for exercises to be performed without
assistance and your physiotherapist is likely to want to meet and give
guidance to your main carer (whether this is your partner, a member of your
family or a friend).
Where can I receive physiotherapy?
Appointments with your physiotherapist may take place in a hospital, GP
surgery, a health centre or even a local hospice. Some physiotherapists will
visit you at home if it is particularly difficult for you to travel.
Is physiotherapy linked to occupational therapy?
Physiotherapy has much in common with occupational therapy and the two
disciplines often work together to provide support.
Physiotherapists deal primarily with physical injury or specific disorders that
affect muscles and limbs. They provide physical treatment, to help maintain
or improve functional movement. They can prescribe a few medicines and
recommend or make arrangements for certain types of equipment or aids.
An occupational therapist does not provide treatment or prescribe any
medicine, but looks instead at the person’s overall well-being, regarding both
physical and mental health. This includes assessment of the immediate
environment, whether at home or at work, to help the person function to the
best of their ability. They can recommend a wide range of equipment or aids,
alternative ways of doing tasks or advise on aspects such as home
adaptations.
With MND, you are likely to meet both. A coordinated approach between
them can be particularly beneficial, as the combination of physical therapy
and environmental support can help to prolong independence and improve
quality of life. If you have not yet seen an occupational therapist and feel it
would be helpful, ask your GP or wider health and social care team about
referral.
Will I still need assistive aids and equipment if I have physiotherapy?
Although physiotherapy can help you to remain independent for as long as
possible, MND is progressive and you are likely to use assistive aids and
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equipment at some point in your progression. These can be sourced though
a physiotherapist, an occupational therapist, other health and social care
professionals or through private purchase.
Assistive aids and equipment can help to prolong or improve:
• independence with daily tasks and routines (eg adapted tools and
utensils)
• personal mobility (eg from ankle and foot supports, known as
orthoses, to walking frames and wheelchairs)
• comfort and positioning (eg recliner chairs and proforma beds)
• physical well-being (eg head supports, should you experience muscle
weakness in the neck, shoulder girdle, and long back extensor
muscles).
Please note: Before buying equipment always seek advice from your
physiotherapist and/or occupational therapist. A community/district nurse can
also advise on suitable equipment in the home, such as adapted seating and
profiling beds. Not all aids are suitable for every individual and mistakes can
be costly.
You may have to try things to see if they work. Or try them again later if your
needs change. Something may work for a short while, then no longer be
suitable. Assessment of your needs should take into account your likely
future needs.
“The initial orthoses which were offered were stiff plastic devices which were
no help. I was then offered ‘foot ups’ which were made of fabric and offered
much more flexibility.”
Person living with MND
Some items will be available free through statutory services (those provided
by health services or social services), so it is worth seeking assessment of
your needs to find out what is available.
Pain relief and other therapies
You may experience twinges, aches, cramps and muscle stiffness, which can
be uncomfortable at times. Inactivity or sitting for long periods of time can
make this worse.
Your physiotherapist or GP may be able to offer, or give advice about,
various methods of pain relief, including:
• transcutaneous electrical nerve stimulation (TENS), where a small
machine uses electrical pulses to stimulate the body’s natural pain
defenses
• local application of heat or ice
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• pain-relieving medication.
Complementary therapies: Some people with MND find complementary
therapies can relieve certain symptoms. A wide range of therapies can be
accessed, such as massage, acupuncture and reflexology (see Further
information at the end of this sheet for details about Information sheet 13 –
Complementary therapies).
Water therapy (hydrotherapy): The use of water therapy (known as
hydrotherapy), can also provide a supportive environment for exercise,
particularly for assisted and passive exercise. The buoyancy of water can
have a stress-relieving effect on joints, which may also improve breathing,
circulation, digestion and promote a sense of well being.
“Utilising the buoyancy of the human body in water, the participant can be
handled easily by the physiotherapist. Away from the pull of gravity the
individual can achieve a feeling of weightlessness and freedom not
accessible on dry land. As a result they may be able to move weak or painful
limbs that are too difficult on land.”
Heather Taylor, physiotherapist
Programmes using hydrotherapy for neurological conditions may not be
available in all areas, but it is worth asking your GP and health team if a
referral is possible. Your physiotherapist can advise about which therapies
and exercise routines would be appropriate for specific needs.
Music therapy: Some people with MND have reported that music therapy
has been a calming process, helping to reduce stress levels. Music therapy
can also enable emotional and creative expression. Again, ask your GP,
physiotherapist or health team if any qualified therapists exist in your region
and if a referral is possible. If not, they may be able to advise on how best to
search for this type of therapy should you wish to make enquiries further
afield.
Other organisations
Please note: the MND Association does not necessarily endorse any of the
services listed here. They are included to give you an idea of the
organisations available.
The British Association of Occupational Therapists
The professional body for all occupational therapy staff in the United
Kingdom with information on how to find an OT.
College of Occupational Therapists
106-114 Borough High Street, Southwark, London SE1 1LB
Telephone: 020 7357 6480
Email: Reception@cot.co.uk
Website: www.cot.co.uk
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Chartered Society of Physiotherapy (CSP)
A professional body working with its members and external bodies to achieve
and promote excellence in physiotherapy. They have a section for the public
with information on services and a search engine for you to find a local
physiotherapist.
Chartered Society of Physiotherapy (CSP)
14 Bedford Row, London, WC1R 4ED
Telephone: 020 7306 6666
Email: enquiries@csp.org.uk
Website: www.csp.org.uk
Health and Care Professions Council (HCPC)
A regulatory body who keep a register of health professionals who meet their
standards of practice. 15 health professions are registered, including
physiotherapists, occupational therapists and speech and language
therapists.
Health and Care Professions Council,
Park House, 184 Kennington Park Road, London, SE11 4BU
Telephone: 0845 300 4472
Email: publications@hpc-uk.org (for enquiries about published information)
Website: www.hpc-uk.org
MND Scotland
They have published a leaflet called Getting the Best from Physiotherapy.
MND Scotland
Unit 4
74-76 Firhill Road, Glasgow G20 7BA
Tel: 0141 945 1077
Email: info@mndscotland.org.uk
Website: www.mndscotland.org.uk search for physiotherapy
Muscular Dystrophy Association - USA
The MDA website shows a range of exercises, for people to do if able, or
passive ones where carers can assist, that may provide a starting point for
discussion with your physiotherapist. These are not necessarily devised for
your specific symptoms, so always consult your own physiotherapist or GP
before embarking on any exercise programme to ensure it will be appropriate
for your needs.
Muscular Dystrophy Association - USA
National Headquarters, 3300 E. Sunrise Drive, Tucson, AZ 85718, USA
Email: mda@mdausa.org
Website: www.als-mda.org search for exercises
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References
Addy LM, Occupational therapy evidence in practice for physical
rehabilitation, 2006, Oxford: Blackwell
Blatzheim K, Interdisciplinary palliative care, including massage, in treatment
of amyotrophic lateral sclerosis, 2009, Journal of Bodywork andMovement
Therapies, Science Direct, Vol 13 pages 328-335
Burkitt J, et al, Quality of Life for People with Motor Neurone Disease: a
Consideration for Occupational Therapists, 2004, British Journal of
Occupational Therapy Vol 67 page 12
Dal Bello-Has V, et al, A randomized controlled trial of resistance exercise in
individuals with ALS, 2007, Neurology, Vol 68 pages 2003-2007
Dal Bello-Has V, et al, Therapeutic exercise for people with amyotrophic
lateral sclerosis or motor neuron disease, 2008, The Cochrane Collaboration
Morris ME, et al, Outcomes of Physical Therapy, Speech Pathology and
Occupational Therapy for People with Motor Neuron Disease: A Systematic
Review, 2006, Physiotherapy Vol 20 (3) pages 424-434
Talbot K, et al, Motor Neuron Disease: a practical manual, 2010, Oxford
University Press, pages 150-151
Talbot K and Marsden R, Motor Neuron Disease: The Facts, 2008, Oxford
University Press
Acknowledgements
Thanks to Liza Robinson, physiotherapist and Karen Walker, person with
MND, for their valuable contribution in developing the original version of this
information sheet.
Further thanks to the following for their expert guidance at revision:
Heather Taylor, neurological physiotherapist, Lucy Aird, neurological
physiotherapist and Heather Preston, occupational therapist, at Susan
Pattison Chartered Neurological Physiotherapists Ltd, Bury
Further information
If you have any questions about the information on this sheet, please contact
the MND Connect team.
Downloads of all our information sheets and most of our publications are
available from our website. You can also order our publications direct from
the MND Connect team, who will also be able to advise on individual needs:
MND Connect
MND Association, PO Box 246, Northampton NN1 2PR
Telephone: 08457 626262
Fax: (01604) 638289
Email: mndconnect@mndassociation.org
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MND Association website and online forum
Website: www.mndassociation.org
Online forum: http://forum.mndassociation.org/ or through the website
We welcome your views
Your feedback is really important to us, as it helps improve our information
for the benefit of people living with MND and those who care for them.
If you would like to provide feedback on any of our information sheets, you
can access an online form at: www.surveymonkey.com/s/infosheets_1-25
Or request a paper version by email: infofeedback@mndassociation.org
Or write to:
Information feedback
MND Association
PO Box 246
Northampton NN1 2PR
Last revised: 06/13
Next review: 06/15
Version: 1.0
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