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: firstname.lastname@example.org Web: www.mndscotland.org.uk 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 etc. 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”. throat. 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.