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MND Care Centre Website

Treatments

Unfortunately there is at present no known cure for MND but treatments are used to improve symptoms.

Riluzole is a medication which has been shown to have a small effect in slowing down the progression of MND. It is taken in tablet form twice each day.  A small number of people do develop side effects. These may include nausea, vomiting, tiredness and dizziness. Again in a small number of people the medication can also cause problems with liver function and therefore blood tests need to be done on a regular basis. It can also make people more prone to getting infections and therefore you should see your GP if you have any signs of infection. The majority of people do not experience any side effects but if they do, it is usually best to stop the drug.

Support is available with managing any symptoms or difficulties a person living with MND may experience. This may involve

A number of healthcare professionals can help you with symptom management.

Physiotherapists

Dependent on your needs, we can offer advice/treatment in a number of areas, including such things as:

           Initial assessment is very important to highlight any developing problems.

           It is important that you know which kind of exercises to do and when

          They may include active exercises, stretches or assisted exercises. Strenuous exercises are usually avoided.

          Appropriate exercises can help optimise working muscles,maintain balance, reduce muscle stiffness and preserve flexibility of muscles and joints.

          It is better to do a few exercises well, and not overtire yourself. We will regularly review and update exercise programmes with you.

         e.g. foot drop splints, simple wrist/hand supports, shoulder braces, collars to support the head if you experience neck weakness, walking aids etc.

          This may include advice regarding sitting or sleeping positions

          It may also address specific parts of the body e.g. hands, where customised resting splints may be helpful.

          e.g. dressing, turning over in bed, showering, carrying.

          e.g. riser recliner chairs, profiling beds, aids to assist eating/drinking, wheelchairs.

          Other professionals will also be involved in providing specialist equipment, and we liaise closely with Occupational Therapists and other members of the team.

See MNDA information sheet  movement and mobility

Dietitian

People with MND may have difficulties eating because the muscles of the mouth and throat are weakened, or because arm muscles are affected making eating physically difficult, or simply through fatigue or a lack of appetite. Early food fortification (increasing calories in your food) and oral supplementation is important when appetite or weight begins to decline. If symptoms progress people may find it increasingly difficult to meet their nutritional requirements from food and drink alone. As a result people may consider feeding through a tube (enteral feeding). – see link to information sheet 11 PEG feeding making the decision). The Dietitian helps to determine whether enteral feeding is required. For those people who undergo Percutaneous Endoscopic Gastrostomy (PEG) or Radiologic-Inserted Gastrostomy (RIG), the dietitian selects an enteral feeding formula based on the person’s daily calorie, protein, and fluid requirements before the procedure, immediately afterward, and for the remainder of the disease course. The Dietitian and Speech and Language Therapist work closely to determine the degree of dysphagia (swallowing difficulty), recommends strategies to modify swallowing and alternative methods to prepare food to maximise nutrition.

The dietitian monitors the person’s nutritional status at each clinic visit.

Support the Dietitian can offer:

See booklet  Soft Foods

See MNDA information sheet Eating and Drinking

See MNDA information sheet PEG feeding making the decision and eating and drinking

Speech and language therapist

A speech and language therapist can assess for any changes in your ability to swallow or any changes in your speech and can advice on how to manage this.  As noted above the muscles of the mouth and throat may become weak which can make speaking and swallowing more difficult. It is important you maintain enjoy eating foods and try to maintain a stable weight. The dietitian and speech and language therapist work together to help you do this. The speech and language therapist will assess for any weakness in the muscles which are involved in swallowing and advise yu on the types of foods which may be easier and safer for you to eat.

See link to diet booklet

If the muscles concerned with speaking are affected it may be more difficult for you to talk especially in crowded places or at the end of the day when you may be more tired. The speech and langauge therapist can also advise you on how to manage this and even provide equipment that will make speaking less effortful.

Support the speech and language can offer:

See link to MNDA information Speech and Communication

MND specialist nurse

A specialist nurse can help by assessing  your symptoms on a regular basis. As changes occur the specialist nurse will co-ordinate your care by speaking with other professionals who can provide their expertise. It is important to discuss changes regularly and plan how to manage these practically. It may also be difficult to come terms with how the condition is changing and it often helps to discuss this with a nurse.

Support the specilaist nurse can offer:

Occupational therapist

Occupational therapists work with people to maintain their independance as much as possible. They can advise on providing aids, equipment or adaptations within the home to help manage your symptom. If you are finding difficulty performing a specific everyday task the occupational therapist will assess how best to manage this

Support the occupational therapist can offer:

Social worker

As your needs change you may find it is more difficult to manage well at home or within the work environment. Social workers can help with issues around housing, care, work related issues and benefits

Support the social worker can offer:

Respiratory physiotherapist

One of the symptoms of MND is weakness of the breathing muscles and it may be useful to know if changes are occuring early and this can be identified by performing breathing tests. The respiratory physiotherapist can help by offering information and advice on all issues regarding breathing and secretion managment.

Support the respiratory physiotherapist can offer:

Respiratory specialist nurse

If changes in breathing mean you start to feel unwell it may be helpfulto manage symtpms by using a ventilator (NIV). the respiratory specialist nurse can advise whether this is apporpriate and if so the typpe of machine which may be best for you to use.

Support the respiratory specialist nurse can offer:

See link to MNDA information sheet  Understanding how MND might affect your breathing

Local branch of the Motor Neurone Disease Association

The local branch is there to offer you, your family, friends and carers help and advice in lving with MND

Support the group can offer

The Motor Neurone Disease Association

The MNDA is the only charity which supports people with MND. It aim is to ensure that people affected by MND receive the care and support they need and want. The MNDA also provides and support research into a cause and cure

Support the MNDA can offer:

See link to MNDA website

 

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