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Factsheet 33 Managing MND


Factsheet 33 Managing MND

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									                                                                  Factsheet 33
                                                                Managing MND
                                                                          Last Updated 23/09/2008

Although there are no known medications              weakened or stiff, your dietician will be
that will cure MND, there are medical                able to help you with how to eat, what to
treatments, therapies, and assistive                 eat, and how to modify food textures to
devices which help people maintain                   make eating easier and safer. If difficulty
active and independent lives for as long             with eating is accompanied by weight
as possible. These disease management                loss, you should talk to your doctor about
and adaptive strategies promote the well-            the possibility of tube feeding.
being of both you and your family.
Communicate openly with your carers,                 Constipation
therapists, and doctors about your                   Constipation may occur as a result of
symptoms and challenges so that you                  inactivity or lack of adequate fibre or
can work together to find solutions that             water in the diet. If you are experiencing
work best for you in a timely manner.                constipation, ask a dietician about ways
Some of the problems associated with                 to add more fibre to your diet. If adding
MND and the strategies for managing                  fibre to your diet doesn't solve the
them are discussed in more detail in other           problem, see a doctor about an
factsheets.                                          appropriate medication.

When you decide you are ready to learn               You should be aware that weakened
more about these topics or you are                   tummy muscles can mean that some
experiencing problems in these areas, the            people with MND are unable to “push”
information will be available for you.               when they go to the toilet, so may have
                                                     problems in going. If this happens you
Common Symptoms that Affect                          should mention it to your GP or MND
Daily Living                                         Care Team Specialist.

Eating                                               Fatigue
Continue to feed yourself as long as                 Some MND patients have extreme
possible. However, if you feel too weak              tiredness (fatigue) which occurs as a
to manage a meal by yourself, or have                result of weakening muscles, and
trouble using cutlery, ask for help from             declining breathing function. One of the
your carer. For instance, your carer could           first ways you can combat fatigue
help a lot just by cutting your food for you.        (tiredness) is to conserve your energy for
An occupational therapist can also help              really important tasks or activities that you
by showing you how to adapt your eating              really enjoy. An occupational therapist
and drinking utensils so they are easier to          can plan a daily routine with you that will
grip, or adjust the height of your eating            help you to adapt to life with MND. Some
surface so you have less distance                    tasks can be done in different ways that
between the plate and your mouth. When               will save your energy. There are a large
swallowing difficulties arise, or jaw                number of aids that can help you to do
muscles involved in chewing are                      the things you might now find difficult. It

MND Scotland is the working name of the Scottish Motor Neurone Disease Association, the only charity
    funding research and providing care and information for those affected by MND in Scotland.

  Company limited by guarantee. Registered in Scotland; Number SC217735. Charity Number SC002662.
     Registered Office 74/76 Firhill Road Glasgow G20 7BA. Tel: 0141 945 1077 Fax: 0141 945 2578
                E-mail:        Web:
                                   Factsheet 33 Managing MND

is essential that you consult your MND                   medications that may help control this
Care Team Specialist before buying any                   problem.
aids as many of these can be loaned or
provided for free.                                       Cognitive and Behavioural Changes
                                                         Until fairly recently, it was assumed that
If you tend to wake up in the morning                    MND did not affect thinking. However,
feeling very fatigued and light headed, or               researchers have found that changes in
are suffering from headaches on                          the way one thinks, perceives, and
wakening and excessive drowsiness                        processes information (cognition), and
during the day, discuss these symptoms                   behaves can occur in some patients with
with your doctor promptly as you may not                 MND and sometimes early in the disease
be breathing well enough in the night.                   before an MND diagnosis has been
                                                         made. This is not to say these changes
Getting to Sleep and Positional                          will occur in all persons with MND and the
Problems                                                 exact nature of the changes can vary
Some people with MND have difficulty                     from person to person. You and your
moving and get very uncomfortable lying                  family can better identify any such
in the same position for several hours.                  changes        and      discuss   effective
There are special beds which help an                     management strategies with your MND
immobile person sleep.                                   care team member.

A satin or silk bottom sheet and nightwear               If you know about them proper
helps turning. Getting to sleep can also                 management may lessen the impact of
be problematic for some people. Talk to                  cognitive and behavioural changes on
your doctor about relaxation exercises or                daily living and coping with MND. The
medication you could use to try to get to                following may indicate changes in
sleep.                                                   thinking:

Use of Alcohol and Medication                                    •   Reduced reasoning, insight,
If you are taking any medications, be very                           and problem-solving ability
careful about drinking alcohol.       The                        •   Reduced word recognition and
combination of alcohol and many                                      word choice.
medications can cause serious problems.
                                                         Some of the following symptoms of
Excessive Emotional Outbursts                            personality and behavioural changes may
Uncontrollable    emotions      such   as                be experienced:
excessive laughing or crying may be
experienced by some people with MND.                             •   Apathy
This is called emotional lability and can                        •   Loss of inhibition
be particularly frustrating because the                          •   Restlessness or overactivity
outburst is often caused by something                            •   Social inappropriateness
very trivial and may be misunderstood by                         •   Mood swings
other people.     This symptom usually
                                                                 •   Compulsive rituals such as
catches people by surprise when it first
                                                                     repeatedly dressing, using the
happens; however, over time, many learn
                                                                     bathroom, eating, hoarding,
how to modify these emotional outbreaks
and how to avoid some of the situations
in which they occur. If this is happening
                                                         For more information about cognitive,
to you, talk to your doctor about

 The information in this leaflet is believed to be accurate at the time of production, MND Scotland cannot
  give detailed medical advice, this leaflet should be regarded only as general background information.
                                   Factsheet 33 Managing MND

personality, or behavioural changes in                   address this problem.
MND, consult with an MND Care Team
Specialist.                                              Muscle Cramping
                                                         Cramps are not uncommon in people with
Mobility                                                 MND. They can be alleviated to some
                                                         extent by keeping the affected muscle
Experience over many years has shown                     warm and by stretching and massaging.
that it is to the advantage of someone                   Severe or frequent cramps should be
with MND to stay as mobile and supple                    discussed with your doctor. There are a
as possible. Despite attempts to this                    number of medications available to
effect mobility can be affected by some of               reduce cramping.
the following topics.
                                                         Changes to Posture
Joint and Muscle Pain                                    If the muscles that maintain your upward
People with MND who lose significant                     posture weaken, you may have
muscle function in areas that involve                    discomfort in your lower back, neck and
joints may end up not using those joints                 shoulder blade region. Special cushions,
to their full capacity. Lack of use can                  chair backs, lower back and neck
cause stiffness and joint pain. Range-of-                supports are available to help you to
motion exercises are designed to prevent                 maintain correct sitting posture. Your
these joint problems. Careful attention to               occupational therapist can assist you in
your exercise regime, whether active                     choosing the right support.
(doing it yourself) or passive (with
assistance), will eliminate much potential               Difficulty Walking
joint pain. However, there are still a                   Weakening of leg and ankle muscles
number of common pains that can                          along with unexpected fatigue, can cause
develop. If your arms are weak and you                   tripping and falling to become problems.
allow them to hang unsupported from the                  If these problems occur you should
shoulder, there is a tendency for the                    contact your Physiotherapist or OT who
shoulder joint to become painful. It is                  might recommend using splint devices
helpful to support weak arms whenever                    that provide added support to weakened
possible on pillows, armrests or on a                    muscles, or a stick, walker or stroller as
table. A shoulder sling may also give the                soon as you experience unexpected falls.
arm some support and decrease strain on                  Some people are self-conscious about
the shoulder joint while you are walking.                having to use walking aids, or see it as an
Hip pain can result from prolonged sitting               announcement that their condition is
in a sagging seat or chair. Speak to an                  worsening. These are completely normal
Occupational Therapist or Physiotherapist                reactions. However, you must also think
for advice on how best to deal with this.                about preventing injuries that will inhibit
                                                         your independence further, or cause
Leg and Foot Swelling                                    serious harm to you such as a head
If your lower limb mobility is reduced, you              injury.
may experience mild leg and foot
swelling, which is best reduced by moving                Difficulty Gripping and Holding
the toes and ankle, if possible, and by                  Some people with MND lose strength in
elevating the leg and/or using an elastic                the hand and wrist muscles, losing the
stocking. Talk to your GP or MND Care                    ability to manage small hand movements
Team Specialist about how best to                        such as holding a pen to write, or cutlery
                                                         to eat, turning a key to start a car, or

 The information in this leaflet is believed to be accurate at the time of production, MND Scotland cannot
  give detailed medical advice, this leaflet should be regarded only as general background information.
                                   Factsheet 33 Managing MND

turning a handle to open a door. There                   Build-up of Saliva and Drooling
are a variety of products designed to                    People with Bulbar MND often develop an
assist you with weakened grip strength.                  excessive drooling problem as they have
For example, some tubular foam around                    difficulty   swallowing     the     normal
the handles of cutlery can “thicken” them                production of saliva.      Sometimes an
up to make them graspable in a hand that                 increase in the actual production of saliva
can no longer close fully. See factsheet                 may occur as a side-effect of tube feeding
5A Assistive Equipment for further                       diets. Your doctor can offer various
suggestions.                                             medications to limit saliva production to
                                                         reduce this problem.        More specific
Speaking and Swallowing                                  advice is also given in the parts of this
For those who do lose their ability to                   manual dealing with the following topics,
speak, there is now a wide range of                      Adapting to Swallowing Problems and
communication aids available from low-                   Maintaining Good Nutrition, Maintaining
cost low-tech to very high cost high-tech.               Oral Health and Adapting to Changes in
Suggested strategies vary from using                     Speech and Maintaining Communication.
signalling systems and “Magic Slates” to
eye-gaze controlled computers. See                       Excessive Saliva and Mucus
factsheet 30, “Communication Strategies”                 Should muscles involved in breathing
for further information.                                 (diaphragm) and coughing (abdominal
                                                         and intercostal muscles) weaken, it can
Swallowing difficulties can arise from                   become difficult to cough up mucus. If
several different causes. Weakened jaw                   you are having this problem, see your
muscles can cause problems when food                     doctor or MND Care Team Specialist as
is not properly chewed and too lumpy to                  soon as possible. There are several
be swallowed easily. Loss of reflexes can                “assisted coughing” techniques for freeing
cause food to stick in the throat while “on              mucus from the throat and lungs that can
the way down” and can also prevent the                   be taught.
muscular flap, called the epiglottis, from
covering the wind-pipe during swallowing,                A small suction unit can help remove
so allowing food or liquid to enter causing              saliva from the mouth and prevent it from
choking.                                                 flowing back into the lungs.

Although it can be very distressing,                     Coughing
choking is common in people with MND                     People with MND may develop weak
and is a manageable symptom of                           coughs due to breathing muscle
swallowing difficulties.        If choking               weakness which makes it difficult to
becomes a problem it should be                           effectively clear airways that may be
mentioned to your health care team as                    blocked.      Talk to your doctor or
there are things you can do regarding                    physiotherapist about techniques to
how you eat and what you eat that can                    produce an effective cough.       See
lower the risk of getting food stuck in your             Factsheet 35 “Breathing Matters”.
                                                         Sexual Concerns
Difficulties with swallowing are discussed
in factsheet 34 “Adapting to Swallowing                  Sexuality and intimacy are basic aspects
Problems.”                                               of human life.      Sexual desires and
                                                         abilities may not be affected by the

 The information in this leaflet is believed to be accurate at the time of production, MND Scotland cannot
  give detailed medical advice, this leaflet should be regarded only as general background information.
                                   Factsheet 33 Managing MND

disease process, except for the physical                         accommodate increasing muscle
limitations    imposed    by    physical                         weakness and other symptoms of
discomfort, muscle weakness, fatigue or                          MND
low energy levels, or medication side-                       •   Identifying     techniques       and
effects. A person with MND may worry                             assistive devices that enable you
about not being able to please a healthy                         to maintain good grooming and
partner. For men, anxiety may cause                              personal cleanliness
erectile dysfunction. Other factors that                     •   Maintaining communication (the
may contribute to unsatisfactory sexual                          open expression of affection and
relations are:                                                   need is important.)
                                                             •   Respecting the boundaries of the
   •   Adjustment to assistive devices or                        other partner
       support systems                                       •   Altering the living environment to
   •   Dealing with everyday survival                            provide adequate privacy and
   •   Negative self-image                                       reduce embarrassment
   •   Reduced independence with self-                       •   Scheduling of "adult time" if there
       grooming                                                  are young children in the family
   •   Reduced communication ability                         •   Wearing street clothes rather than
   •   Limited mobility                                          night attire whenever possible
   •   Changes in physical appearance                            during the day to emphasise
   •   Altered role                                              normality and reduce playing the
   •   Emotional state                                           sick role
   •   Functional level                                      •   Re-focusing interests and energies
                                                                 into other areas
You and your partner may want
counselling      with     an    empathetic               Partners should realise that touching is as
professional to openly deal with mutual                  important as sexual performance in
concerns and expectations. If you are                    reducing      tension   and    maintaining
both willing, you could explore different                emotional intimacy.       Preservation of
sexual techniques, role flexibility, and                 personal integrity should be an overriding
alternative methods of sexual expression.                concern. If you have any questions or
The following suggestions may prove                      concerns, speak with your doctor and
helpful in dealing with sexual concerns:                 request a referral to a sexual health
                                                         clinician in your area.
   •   Using    techniques,     assistive
       devices,   and   positioning    to

Further Information:

Factsheet 5A           Assistive Equipment
Factsheet 6            Feeding Tubes
Factsheet 27           Coping with MND
Factsheet 34           Adapting to Swallowing Problems
Factsheet 35           Breathing Matters
Factsheet 36           Oral Health

 The information in this leaflet is believed to be accurate at the time of production, MND Scotland cannot
  give detailed medical advice, this leaflet should be regarded only as general background information.

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