Self Management of Multiple Sclerosis
Original Editors - Ruth Telfer, Gilly Higgins, Leona Dunlevy, Chelsey Crandell, Claire Jones, Fiona Turnbull and Martina Henry as part of Queen Margaret University's Current and Emerging Roles in Physiotherapy Practice projectents
- 1 Introduction
- 1.1 Stages of Multiple Sclerosis
- 1.2 Physiotherapy and its role in self management
- 1.3 Etiology
- 1.4 Aetiology
- 1.5 Dealing with pain
- 1.6 Dealing with tiredness
- 1.7 Coping with feelings of depression
- 1.8 Relaxation
- 1.9 Healthy eating
- 1.10 Dietary Interventions in MS:
- 1.11 Communication - Family, Friends and Professionals
- 1.12 Exercise
- 1.13 Planning for the future
- 1.14 Conclusion
- 1.15 References
Multiple sclerosis (MS) is a chronic inflammatory disease in which the myelin sheath surrounding the axons of the brain and spinal chord become damaged, resulting in demyelination and scarring. This demyelination is accompanied by a broad spectrum of signs and symptoms. Onset of this chronic disease typically occurs in early adulthood, more commonly in women and its prevalence ranges between 2 and 150 per 100,000. Due to the destructive nature of multiple sclerosis, the presence of the disease can result in major long term disability. As with all neurological disorders, there are three key stages through which an MS patient will pass. These are 1) investigation, 2) diagnosis and 3) treatment/management.
Stages of Multiple Sclerosis
MS is a continual, progressive disorder. Due to its nature, the management of MS can be an extensive, ever-changing process. The course of MS may be usefully divided into four stages, with the level of disease associated disability increasing as stages progress. It is also important to note that not all cases will pass through the full course. Each stage presents its own management issues. Self management may be largely promoted in stages 1 and 2 while it is only at stages 3 and 4 that major input from health care services is necessary.
The four stages of multiple sclerosis:
1. Initial (diagnosis)
2. Early (little disability)
3. Later (moderate disability)
4. Advanced (severe disability)
The majority of MS patients experience periods of exacerbation known as relapsing/remitting attacks. These attacks can vary in quality and may be followed by the development of progressive disability (Secondary/Progressive). However, a 20-30% of MS patients do not develop major disability even 20 years after diagnosis. There is also a small group of patients (<10%) who suffer progressive disability from outset (Primary/Progressive).
Physiotherapy and its role in self management
As there is currently no known cure for MS, effective long term management to maintain quality of life in those affected by the disease is essential. This lengthy management as will be discussed should begin at diagnosis to best help prevent attacks and disability and maintain physical functioning and mental well-being. Optimal management may be achieved through a multi-disciplinary team approach which focuses on self management. The role of the physiotherapist as an educator amongst this population group is ever advancing and is of particular importance during stages 1 and 2 when self management can play a major role in the life of an MS patient. This Physiopedia page is intended to outline, justify and critique the current and emerging role of the physiotherapist in the self management of multiple sclerosis.
MS is an inflammatory disease of the central nervous system. It is a major cause of neurological disability in young and middle aged adults. The course of disease ranges from a single transient neurological deficit with full recovery to, in its most severe form a permanent disability being established within weeks or months of onset.The inflammation of the central nervous system (CNS) causes damages of plaques / lesions that are predominately, though not exclusively, located in the white matter of the CNS. Demyelination occurs at these lesions which involves the myelin sheath becoming lost. When this occurs it may slow down or stop the transmission of nerve impulses. Myelin sheaths in some instances may be repaired after the inflammation has been resolved. Remyelination is triggered by oligodendrocytes which are present at the site of the lesion. If there are not enough oligodendrocytes available, the nerve may continue to function but in an abnormal way with axon remaining undamaged. Scar tissue may form and replace the myelin giving MS its name: ‘multiple’ many and ‘sclerosis’ scar forming (Reipert, 2004). As the disease progresses the axons will be destroyed alongside oligodendrocytes, which will lead to the conduction failure of the nerve impulses leading to worsening symptoms. Much research into this has shown that the destruction is caused by the body’s own immune system indicating an autoimmune disease.
Different Types of MS
There are three types of MS each with individual characteristics. It is not always clear what type a person with MS has at the beginning of the diagnosis. The three types are: relapsing/remitting multiple sclerosis (RRMS), primary progressive multiple sclerosis (PPMS) and secondary progressive multiple sclerosis (SPMS). http://www.mssociety.org.uk/what-is-ms
Relapsing / Remitting Multiple Sclerosis (RRMS)
Most people who are first diagnosed with MS are diagnosed with RRMS (approx. 80%). Patients experience a series of relapses (also known as exacerbations or attacks) followed by a complete or partial disappearance of symptoms (known as a remission) until another relapse occurs. A relapse is defined by the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more. This is in the absence of a change in core body temperature or infection. Relapses occur when inflammatory cells attack the myelin of specific nerve fibres. A relapse may take a few days to happen but it can last anywhere between a few days to weeks or months and the recovery from these relapses can either be instantaneous or slow and gradual.
As times of relapse and remission occur the recovery may take longer. The person may also only make a partial recovery. RRMS also has a female predominance of 2:1 (Reipert, 2004)
Primary Progressive Multiple Sclerosis (PPMS)
PPMS is seen in about 10 – 20% of MS sufferers. It is characterised by a gradual progression of the disease. It comprises of a decline in the patients abilities with only short periods where there is some minor relief from the decline. Symptoms may level off at anytime but also may continue to worsen.
Secondary progressive multiple sclerosis (SPMS)
Most people who start as RRMS will develop SPMS within 10 years of their diagnosis (approx. 50%). It is characterised by a steady progression of clinical neurological damage with/without superimposed relapses and minor remissions and plateaus. The burden of the disease is progressive believed to be because of higher axonal loss.
Symptoms of MS
Symptoms of MS vary from person to person. Demyelination can occur anywhere throughout the white matter of the CNS and as a result of this the initial presentation of MS can vary greatly. Individuals with MS can either experience a partial or complete loss of any function that is controlled by the CNS.
The most common symptoms include:
- loss of vision
- double vision
- loss of co-ordination
- problems with bladder and bowel control
- speech and swallowing disorders
- sexual difficulties emotional changes
- intellectual impairment
Details of all the above symptoms can be found at http://www.mstrust.org.uk/atoz/symptoms.jsp
The cause of MS is still unknown (Khana et al, 2010). It is a disease where there have been implications of genetics, environmental and immuniological factors. It is complex and has many levels with so far no single gene or environmental factor being identified as the causative agent, rather it is seen as a cumulative effect.
Milo & Khana have presented the following factors that may have a role in MS – geography, genetics, environmental factors – vitamin D and Epstein barr
The total number of people living with MS is estimated at 2.5 million worldwide.It is not an evenly distributed disease with the prevalence varying between each region, in tropical areas there is >5 / 100,00 and >100 – 200 / 100,000 in temperate areas including US, Canada, New Zealand and US. It also does not fully follow this trend as Inuit people in Canada where it is extremely cold have a low frequency of MS whereas those living in Sardinia have a high frequency of MS where it is a warm region. These irregular factors of prevalence have implied the influence of environmental and genetic factors.
One speculation of Milo & Khana states that MS follows the distribution of Scandinavians in Europe and US where MS is seen in Caucasians from Scandinavia and Scotland who are extremely susceptible and rare in the Mongolian, Japanese, Chinese and American Indians and also less frequent in African Blacks and Aboriginals. Yet genetic susceptibility cannot singularly explain this as migrants who move from an area that MS is common to an area where it is less common, a decrease is shown in the rate of MS and those moving in the opposite direction tend to also retain the low risk of MS.
One of the strongest correlations of latitude is sunlight intensity and UV radiation. High exposure to sunlight when aged between 6 -15 was associated with a decreased risk of MS. Exposure to sunlight is a major source of Vitamin D. Studies investigating vitamin D supplementation in MS patients has illustrated a noticeable improvement in the course of the disease.
Another area in the aetiology of MS looked at the cause of infection. The most accepted poliomyelitis-hygiene hypothesis postulates that contact or infection with the causative agent in childhood protects against MS but late contact with the same agent can cause the disease. Many viruses have been blamed for causing the disease with the first one as measles. Epstein – Barr virus as also been implicated. It is a common and usually asymptomatic in the first years of life when young children share saliva by sharing food and toys with saliva becoming more direct during adolescence. By adulthood, more than 90% of the general population is EBV seropositive. Due to the EBV life-long latent infection of B cells, promoting their proliferation and activation, and due to its periodical reactivation with consecutive repetitive antigenic challenge to the immune system, it is a plausible candidate to trigger a chronic inflammatory immune response of the type seen in MS.
Improved understanding of both the susceptibility genes and the environmental factors involved in MS should facilitate the identification of those in risk, provide targets for MS therapy and suggest preventive strategies.
Dealing with pain
Over 50% of people with MS experience pain associated with the disease. The pain experienced by people with MS is likely to be chronic or difficult to control (MSRC,2002). The pain can be associated with MS symptoms, such as pins and needles, burning sensations, numbness or sensitive skin, or can be the result of musculoskeletal problems. An example of this may be poor posture associated with MS or the consequences of needing to be wheelchair bound (BPS, 2008). The pain may be continuous but of low intensity, or severe but may come and go with no warning signs or controllable relief (MSRC,2002).
Pain for MS sufferers can be so varied, with painkillers having little effect that it can severely impact quality of life and their ability to continue with activities of daily living. It is therefore important to consider how physiotherapists can be involved in guiding the patients to self manage their pain, whether this be introducing ways to relieve pain or more importantly to cope with their pain with the support of professionals as well as other MS sufferers.
“ Caregivers should be active in seeking the pain symptoms and identifying pain issues, mindful of the functional and psychological impact of pain and investigate potential causes of pain. This can lead to impressive gains in function and quality of life for those with MS ” .
Neuropathic pain can consist of intense, severe stabbing pain, burning sensations or experiencing what feels like an electric shock. It has been described as “punishing-cruel” and “tiring-exhausting” in a pain questionnaire. Although there are several pharmacological treatments that are now available which aim to treat neuropathic pain, it still remains an area that is in the early stages of research. It poses a difficulty to physiotherapists because of the individual nature of the pain, the severity, chronicity and resistance to simple analgesics and the intense effect it can have on the patients quality of life.Therefore, it is important for the physiotherapist to consider the functional impact of the neuropathic pain (e.g. disability, depression) and to re-evaluate on a frequent basis. As a physiotherapist dealing with neuropathic pain, patient education, reassurance and referral are important components to consider. For more information on working with patients with neuropathic pain please see:
1) ‘Neuropathic pain: a practical guide for the clinician’
2) Advances in Neuropathic Pain
Neuropathic pain can be de-moralizing and exhausting, but patients may seek comfort with the support of others. A useful resource for patients is the Multiple Sclerosis Resource Centre (MSRC) 
This website offers:
- A clear understanding of Neuropathic pain
- Treatment and Management options
- Personal experiences associated with Neuropathic pain
- Latest MS news
One main benefit of the MSRC is their support and telephone counselling service, available 9am-5pm on Weekdays.
In MS, problems with weakness and spasticity can result in musculoskeletal changes affecting body posture and positioning. This can cause strain on bones, joints, ligaments, tendons, muscles, nerves and vasculature resulting in abnormal tensile forces. For spasticity, proper seating, posture and positioning as well as the use of proper orthotics is important Poor posture can also result in chronic pain such as Low back pain.
One very useful website is the Multiple Sclerosis Trust, providing extensive information about exercise for patients with MS, along with several other topics. It gives people information about which exercises to do, with accompanying videos. The exercises include general exercise, core stability exercises as well as relaxation techniques. It provides a good introduction to posture, exercise and fatigue and staying active (MST,2011).
It has been suggested that low to mild cardiovascular exercise is helpful to strengthen muscles to combat musculoskeletal pain as a result of other MS symptoms, perhaps associated with poor posture. Slow, gentle and prolonged stretches held for between 20 and 60 seconds are thought to help pain. The physiotherapist can provide support and extensive advice on this area, when it comes to strengthening and stretching regimes to prevent musculoskeletal pain, as well as being involved in postural training and re-alignment. Here the physiotherapist can educate the patient to self manage by providing specific and individualised programmes.
For more information please see |The British Pain Society
The BPS is a multidisciplinary professional organisation. It encourages the collaboration of professionals such as doctors, nurses, physiotherapists, scientists, psychologists and Occupational Therapists, to become a representative body on matters relating to pain. The society aims to increase professional awareness of pain and introduce what facilities are available.
For a physiotherapist, this society offers:
- Annual Meetings
- Grants and awards
- Pain news
- Articles and reports
This is a charity that works toward enabling people with MS to live life to the fullest. It has a large section on ‘looking after yourself’, with information on exercise, healthy eating, self management and support groups. The website also includes peoples blogs who suffer from MS, working alongside ‘facebook’, ‘twitter’ and ‘flickr’ to allow easy networking and for people to share stories. The website alone offers a large support group.
Dealing with tiredness
Fatigue is a considerable problem that affects a majority of patients with chronic conditions, including MS. It can have a significant effect on mental health status and general wellbeing of these individuals .
MS sufferers experience both cognitive and motor fatigue. The cause of fatigue in patients with MS is still relatively misunderstood. Some theories include:
- neuromodulation by soluble products of activated leukocytes participating in the autoimmune process
- demyelination and axonal loss in central pathways necessary for sustained neural activity
- Alternatively, fatigue may have an indirect cause that is not specifically related to the disease process but secondary to other common consequences of MS, such as depression or sleep disturbance. The etiology of fatigue is most likely multifactorial, but the evidence for each of these mechanisms will be examined separately
It is also important to know that fatigue can be exacerbated by heat in these patients so treatment room and environmental temperature should be considered. Infections and physical activity can also exaccerbate fatigue and adequate rest should be given. However, sleep is often disturbed in these patients due to muscle spasm, bladder weakness and so on and as a result rest can be difficult.
Physiotherapy treatments to aid self management
It is the physiotherapists role to assess patients individually. With the patient’s symptoms continuously fluctuating it is necessary to assess regularly. With respect to fatigue, the physiotherapist role is to give advice to the patient on how they management their fatigue. Living with MS is demanding as fatigue fluctuates with exacerbations of symptoms, learning to cope with this is achieved through prioritising tasks for when tiredness becomes an issue. Addressing important issues first and then carrying out any less important tasks following this. Knowing at what time of the day the patient is most alert and awake will also help in task planning. Pace of the tasks should also be considered and appropriate time allowed to carry it out.
A review of the literature by Andreasen found that physical activity can help combat fatigue in MS patients however, it is vital that the adequate type and duration of activity is prescribed for the individual in order for it to be a beneficial self management strategy.
If prescribing exercise to patients with MS it is vital to educate them on the following:
- Take appropriate rests during treatment sessions to ensure recovery. Pushing themselves when tired will not be of benefit and their sessions and will have negative effects and exacerbate the fatigue.
- Due to increased fatigue in hotter conditions it may be an option for them to consider water based exercises which will allow more treatment to be administered before causing fatigue.
For more information
Expert Patient – Expert patient run courses and seminars on a different areas of self management for both patients and health professionals. More information can be found at: www.expertpatients.co.uk
www.healingwell.com/ms/ - provides information, blogs and forums for people with MS. This is an open community where patients can talk to other sufferers and share potential coping strategies.
Coping with feelings of depression
Depression has been shown to adversely impact self-management of chronic illness by its adverse effect on memory, energy, sense of self-efficacy, and interpersonal interactions. Self-management of chronic illness includes working effectively with healthcare providers, self-monitoring, implementing medication regimens, following prescribed diet and exercise regimens, quitting smoking and minimizing drinking as well as minimizing impact of medical illness on social role functioning. Depression also adversely affects satisfaction with care, which itself predicts poor adherence to medical regimens (Katon & Ciechanowski 2002).
Depression significantly increases the overall burden of illness in patients with chronic medical conditions. Compared with those without depression, medical outpatients with depressive symptoms or disorders experienced decrements in quality of life and had almost twice as many days of restricted activity or missed work because of illness (Lorig et al 2003).
Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression. The risk of getting depression is generally 10-25% for women and 5-12% for men. However, those with chronic illnesses face a much higher risk -- between 25-33%. Multiple sclerosis: 40% experience depression (Chakrabutty 2009)
Some tips for the patient to help them cope with MS and avoid depression:
- Try not to isolate yourself. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. Ask your physician or therapist for referrals to a support group and other community resources.
- Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available, and maintaining a sense of autonomy and control.
- Make sure that you have medical support from experts you trust, and can talk to openly about your ongoing questions and concerns.
- If you suspect that your medication is causing you to be depressed, consult your doctor about alternative treatments.
- If you are in chronic pain, talk with your physician about alternative pain management.
- As much as is possible, remain engaged in the activities you enjoy. Doing so will keep you connected, as well as boosting your self-confidence and sense of community.
- If you become depressed, don’t wait too long before seeking help. Find a therapist or counselor whom you trust.(Chakrabutty 2009)
Some tips for the physiotherapist to assist the patient with MS in avoiding depression:
- Keep up a continuous relationship with the care team
- Individualise care according to patients’ needs and values
- Care that anticipates patients’ needs
- Services based on evidence
- Cooperation among clinicians
- Elicit and review data concerning patients’ perspectives and other critical information about the course and management of the condition
- Help patients to set goals and solve problems for improved self-management
- Apply clinical and behavioural interventions that prevent complications and optimize disease control and patient well-being
- Ensure continuous follow-up
Physiotherapists and other health care professionals are increasingly becoming involved in helping the alleviation of acknowledged psychological components of MS such as stress and coping. Many people with MS say they experience more symptoms during stressful times. Stress has been associated with exacerbations but it is important for patients to be aware that there is currently no conclusive evidence to support that stress alone causes exacerbations.
Non pharmacological treatment and care options that physiotherapists can introduce to patients in order to assist them in self managing stress include complementary or alternative medicine (CAM). This includes guidance towards self therapies such as yoga, meditation, aromatherapy and various techniques that can help patients achieve relaxation.
Studies that have investigated the use of CAM therapies among people with MS have consistently found that people with MS tend try a greater number and variety of CAM therapies compared to other populations. On average people with MS utilize 3 or more CAM therapies compared to those with other physical disabilities that tend to use an average less than 3.
In a questionnaire survey assessing conducted in 2006 in Manchester, UK at the MS Trust Biennial Congress for persons with MS the six most used CAM therapies included reflexology, massage, yoga, relaxation and meditation, acupuncture and aromatherapy. The most reported benefits for these were positive effects on enhancing relaxation, reducing specific physical symptoms and enhancing general well-being. No clear pattern was evident for any differences by diagnostic stage, years since confirmed diagnosis, gender or age. All participants were in agreement that the one common effect of CAM therapies was that they were very relaxing and that this in itself was a major benefit.
Relaxation is a term to describe a state of ease. It can be characterized by a low level of physiological arousal accompanied by a state of mind that is calm and free from anxiety. It incorporates the interplay of psychology and the body’s physiological systems that includes nerves, muscles and the body’s major organs. Relaxation is not something one can just decide to do, it is a learnt skill that takes practice and hence it is important for patients to be informed that every individual responds differently and it may take time to discover which technique works best for them.
Various theories have surfaced to attempt to explain the mechanisms that are responsible for achieving a relaxed state. These theories can be categorized into two main schools of thought; physiological theories and psychological theories. Physiological theories focus on the autonomic nervous system and its interaction with the endocrine system to bring about arousal or restore a state of calm to the body. The psychological theories include the cognitive, behavioural and cognitive-behavioural theories which utilize models that focus on the mind, observable behaviours or the interactions between somatic, cognition and behavioural processes.
Physiotherapists can inform or guide people with MS through the following relaxation techniques. When undertaken, patients may find these techniques to be useful in self managing their stress and anxiety through means of learning how to enter a state of relaxation:
Scanning procedure designed to relax the body.
- Repetition of phrases based on six main themes related to different areas of the body.
- Suggested practice three times per day.
- Also includes meditative exercises that can involve colours, objects and concepts.
Progressive muscle relaxation training
- Such as Bernstein & Borkovec’s approach
- Cycles of ‘tense-release’ of all muscle groups
- Contraction held for 5-7 seconds followed by release and relax for 30-40 seconds.
- Initial guidance on how to control breathing in terms of depth, rate and pattern.
- Connection between slow breathing and dominance of the parasympathetic nervous system.
Thought process that invokes the senses through creating pictures in the mind.
- Utilized as a tool to enhance the relaxation experience once in a relaxed state.
- Aim to encourage positive emotions.
For all techniques written handouts maybe useful for home practice.
Other relaxation techniques that people with MS have found to be beneficial include;
- Hatha yoga
- Tai chi
These techniques require specific training or special equipment.
The importance of healthy eating
Eating nutritional and well-balanced meals enables the body to work to its maximum potential. This is particularly important for people living with and managing MS over the long term. By eating healthily, individuals report improved quality of life and sense of well-being. A healthy diet will specifically help patients with the following:
- Weight control
- Fatigue management
- Maintenance of bladder and bowel function
- Muscle strength and flexibility
- Joint range of motion
- Skin health
- Heart function
Due to the limited advances in treatment for MS many different complementary and alternative medicine (CAM) treatments have been proposed for the disease management including different diet options and dietary supplements. Many people with MS consider these special diets and supplements as vital for improving their health status and use them particularly when they want to improve their sense of control over their disease. However, patient decisions are not always based on sound nutritional recommendations and as a result both macronutrient and micronutrient deficiencies can develop. This may place patients at risk of adverse secondary conditions, including malnutrition. In addition, high doses of vitamins and minerals as part of a diet supplement may risk toxicity or even deficiencies due to competitive binding enzymes and transport proteins. It is consequently essential that patients have access to sound advice from all health professionals, including physiotherapists, to enable them to adopt a healthy diet and successfully manage their disease.
Components of a Healthy Diet
It is widely recognized that a healthy diet contains a balance of the major food groups:
- Protein is required for growth, repair and replacement of tissue, collagen synthesis, and formation of hormones, antibodies and enzymes. Protein is especially important for patients with MS who are at risk of developing pressure ulcers, or who have experienced unintentional weight loss resulting in loss of lean body mass.
- Carbohydrates and sugars are the primary source of energy for all body functions and are required for processing all other nutrients. A lack of carbohydrate in the diet can result in fatigue, a common symptom experienced in MS patients.
- Fats provide a concentrated source of energy, transport fat-soluble vitamins and provide a source of essential fatty acids. Nervous tissue contains large amounts of lipids and therefore there is a possible therapeutic effect in patients with MS.
- Fibre facilitates healthy digestion.
- Vitamins and minerals are essential nutrients for physiologic processes including growth and metabolism. Caution needs to be taken to prevent toxicity or deficiency in these micronutrients.
- Fluids carry nutrients around the body and facilitate chemical reactions in cells.
For more detailed information on components healthy diet please refer to the following websites:
Useful websites for patient referral include:
Healthy Eating and MS:
The effects of MS vary greatly and for many individuals with mild symptoms an ordinary healthy and balanced diet in line with current UK guidelines, as described above, is recommended. The aim of this is to maintain plasma levels of essential fatty acids, vitamins and minerals and to maintain a healthy gut function. However, as the degree of disability progresses, dietary advice must be tailored to the individual. Typical symptoms affecting nutrient intake include reduced mobility, fatigue, tremor, poor sight, dysphagia, cognitive difficulties, depression, pressure sores and multiple drug side-effects. Nutritional consequences range from obesity and being overweight to being underweight and suffering malnutrition.
If a patient mentions struggling with dietary management or if significant weight gain or loss is noted by a physiotherapist then referral to a dietician may be beneficial. This allows identification of the problem’s source and subsequently a careful review of dietary intake can take place. Referral to other members of the multi-disciplinary team may also be of value. For instance, a speech and language therapist may assess and assist with management of dysphagia, an occupational therapist can determine if modified kitchen equipment would be of benefit, and a doctor or pharmacist can assess if nutritional problems are related to specific drug treatments. As a physiotherapist, assessment and advice regarding eating posture may also help.
If necessary, nutritional status can be quickly assessed using various nutritional screening tools including the Malnutrition Universal Screening Tool (MUST). More information on this tool can be found at the following link: http://www.bapen.org.uk/pdfs/must/must_full.pdf
Dietary Interventions in MS:
Many specific diets have been promoted as effective therapies for MS and many patients rely on these for improving their health status. However, some diets are restrictive and may be potentially harmful to overall patient health. In addition, for many special diets there is no evidence base to support their use. For example, no existing data can support the use of allergen-free, gluten-free or severely sugar-restricted diets. One of the most common diets promoted for patients with MS include the Swank diet. A review of this diet can be found below.
The Swank Diet:
The Swank diet was developed by Dr. Roy Swank in the 1940s. The diet reduces daily intake of saturated fat to 15g or less and excludes high-fat dairy products. Frequent fish meals and both vegetable oil and cod-liver oil are taken daily. The diet was developed following early epidemiological studies which indicated that MS is less common in populations that consume low levels of saturated fat and high levels of polyunsaturated fatty acids.
There have been several studies, including one by Swank and Goodwin, which report both benefits of symptom management and slowing of disease progression in patients who rigorously follow the diet. However, many of these studies have used poor methodology and the available supporting evidence is therefore significantly lacking. Despite this lack of high quality research, however, many patients report benefits of the diet and it can still be considered on an individual basis.
Following the Swank diet is not generally considered bad for health. However, due to decreased meat intake it is important to find other sources of protein, such as fish, beans and pulses. In addition, cod-liver oil may have a blood thinning effect and should be used with caution by those who take anticoagulant medication. Diabetics should also refer to a doctor or dietician before taking cod-liver oil. Further information can be found at the following link:http://www.swankmsdiet.org/
Communication - Family, Friends and Professionals
According to Landon et al multiple sclerosis (MS) can produce a progressive detachment from the person’s expectations, hopes and life projects. This sense of detachment and lack of communication can be due to the realisation that this disease is something that is now a massive part of their future. The individual can have a reduction in their own autonomy and the fear of disease progression. All of these can interlink and result in the person becoming very isolated from family, friends and work resulting in self-depreciation and a loss of self-esteem. Chwastiak et al states that individuals with MS face uncertainty about their future, unpleasant symptoms, treatment regimens and side effects of drugs. As a result there is a disruption to employments, life goals and communication with others. There is a challenge to not only functionally adapt but also to psychology.
The person needs effective communication from family and professionals of love, liking and respect and at the same time to be recognised as a person and an active member of his/her family and society. A support and communication system will help attenuate these stressors and maintain social and working activities. Early onset and long duration of the disease leads to tremendous family and societal cost for the MS patient in conjunction with a decrease in quality of life and work productivity. Thus a sustained communication network is essential.
According to Bambara et al and Beckner et al the prevalence of depression in people with MS is much greater than the general population. Depression can be found in up to fifty percent of patients with MS. Depression associated with MS has a higher suicidal rate, non-adherence to disease modifying drugs and a reduction in quality of life. It has been linked to the accelerating the disease process and there is suggestions that there is role in the inflammatory process. Providing a greater social support system is a associated with less depressive symptoms.
The more interaction the individual had with others, the more emotional and perceived support the less depressive symptoms was felt. Berwin and Maybury (1984) illustrate that those with greater social interaction and communication with others had higher self – esteem and better psychological health, less disabled and were more likely to be employed. Social support buffers the effect of stress and depression on MS pathogenesis.
Physiotherapists play a very important role at implementing essential treatments and exercises to improve a client’s balance and mobility, reduce ataxia, enhance exercise intolerance and reduce spasticity. Communicating with the person and the family about all the options for treatment and disease progression can provide the patients with essential education and help them feel more in control of what is happening. It is important for the physiotherapist to be aware of the possibility that the MS patient is suffering from depression especially at the time of major change, loss of function or lack of social support.
According to Beckner et al communicating, even over the telephone, can help overcome many of the problems of chronic conditions (isolation, fatigue ability and mobility). In this study the individuals who received the telephone cognitive behavourial therapy had a decrease in depressive symptoms when enrolled in TCBT versus TEFT. Thus a social support and communicative networks deems positive results in relation to depression.
The physiotherapist can emphasise the importance of physical activity and the positive correlation between participation and quality of life. Physical activity in conjunction with superior management of depression and greater social support from others can result in less depressive symptom and can help in the management of fatigue, pain, depression and increasing self - efficacy.
It is widely known and accepted that within healthy populations physical inactivity is known to impose a serious health risk. Whereby, inactivity is known to raise the risk of chronic conditions such as cardiovascular diseases, obesity, Type-II diabetes, cancer, osteoporosis and fatigue. In a paper by Dalgas et al it was stated that in MS patients there is an increased incidence of osteoporosis (reduced bone mineral density), depression, fatigue and death from cardiovascular diseases. This increased incidence could be associated with the low level of daily activity seen in these patients.
Therefore, based on this statement exercise is a key component to improving the health, fitness and functionality for those diagnosed with Multiple Sclerosis, (MS). However, in regards to self management exercise alone is not sufficent in aiding patients. It is widely evidenced and accepted through evidence based research that exercise combined with proper nutrition, (see nutrition) are helpful in managing MS symptoms. Furthermore, within the health profession there has been countless studies and research on the beneficial effects of exercise on healthy populations. The overall general consensus is that people with MS generally respond in the same way as those without.
Whereby, regular exercise can help improve:
- Heart health
- Physical strength
- Bladder and bowel function
- Feelings of fatigue and depression
- Overall attitude
- Participation in social activities
www.mstrust.org.uk/downloads/exercises.pdf shows exercises that were published for patient information to aid their self-management and regain control by partaking in exercise. Therefore, this document may be of benefit to physiotherapists who want to begin a tailored exercise regime for patients with mild/moderate MS and symptoms.
Relating the benefits of exercise in relation to self management is done through a variety of strategies which have been discussed in a wide collaboration and collection of government strategic papers and MS specific plans. Examples of these are listed below:
Long Term Conditions Collaborative
Improving Self Management Support, NHS Scotland
This paper mentions the Thistle Foundation and lifestyle management courses that build on participants’ own recovery strategies. These are 10 week courses that are designed around a framework of planned discussions, safe and appropriate exercise and therapeutic relaxation. They are about building confidence, boosting self esteem through experiencing small successes and benefiting from the supportive environment in the Thistle Foundation facilities. http://www.thistle.org.uk/
Self Management Fund – Special Report – Exercise and Activity April 2011
LTCAS Scottish Government
This paper highlights projects which have been able to investigate within Scotland the benefits of exercise and activity for people living with long term conditions, and those that care for them, in supporting self management. The Fund is capturing the learning from these experiences, and has so far been able to show the value of exercise and activity and has reached the following conclusions regarding exercise and self management
- the need to involving peers in delivery and support
- encouraging appropriate and accessible exercise
- encouraging walking
- encouraging other activities, which are not necessarily exercise-based
Furthermore, within this document there is a case study ‘Revive MS Support’ which gives a brief example of how to set up and run a successful self management and exercise program, this specific charity is set up in Maryhill, Scotland. Despite this the charity has a strong organisational ethos in promoting self management and is perhaps a benefical resource to aid ones knowledge in the field of exercise and self management giving the physiotherapist tools and techniques to search for. For more information please visit www.revivemssupport.org.uk
The National Multiple Sclerosis Society has also outlined the following seven objectives for an effective exercise program. Many of these benefits will contribute to other areas of self management in MS (See Depression, dealing with tiredness). These include the following which is stated on the website
- Improve socialization, decrease isolation
- Promote well-being and improve self-esteem
- Provide an atmosphere to exercise that minimizes or prevents a rise in body temperature
- Prevent symptoms secondary to MS (muscle atrophy, joint contractures, pressure sores)
- Maintain or improve range of motion and flexibility of joints
- Maintain or increase endurance potential
- Maximize muscle strength
The link below this paragragh is to the national multiple sclerosis website which will be beneficial to physiotherapists that want to guide there patients to a source that will aid and motivate their self management in relation to exercise. This link contains patients’ stories, types of exercise and fun activities and videos of the positive effects of exercise to aid self-efficacy and motivation. Link: www.msassociation.org/programs/videos/closerlook_benefits.exercise.asp
Further Reading and information on exercise and MS which may be of benefit for the professional dealing with a MS patient and wants to include exercise in their treatment plan to aid in there overall goal to self management:
- MS Essentials Factsheets: Posture and movement.
- Physical activity for neurological conditions by Dr Helen Dawes. Published by Oxford Brookes University (2010).
- Exercises for people with MS by Liz Betts. Published by the Multiple Sclerosis Trust (2004),
- Yoga tips for people with multiple sclerosis by Sue Lee. Published by Class Publishing, London (2009),
- Stretching for people with MS. An illustrated manual by Beth E. Gibson. Published by the National MS Society. Available www.nationalmssociety.org
- Stretching with a helper for people with MS. An illustrated manual by Beth E. Gibson. Published by the National MS Society. Available www.nationalmssociety.org
Planning for the future
Justification for planning for the further:
People with MS have their disease for life, and may only see any individual professional for a short time. Moreover, the person with MS has to live with the consequences of any decisions made and in the absence of firm evidence for most decisions, it is especially appropriate to involve the individual in all decisions as far as they wish. Encouraging self-management is consistent with recent moves towards the ‘expert patient’ which aims to use patients to give other patients the skills, knowledge and confidence to participate actively in all aspects of their own health care
Physiotherapy involvement in planning for the further within Multiple Sclerosis (MS) patients has become a major role and necessity in the past number of years. As already mentioned (MS) is a chronic, unpredictable disease of the central nervous system causing a multitude of physical effects such as fatigue, numbness, gait and coordination disturbance, bladder and bowel dysfunction, sexual dysfunction, vision problems, and pain. MS being a multi-system disease truly deserves comprehensive physiotherapy treatment.
Involvement of the Physiotherapist;
As the 'movement expert' physiotherapist's main aim is to help the person achieve their potential for physical independence, flexibility, strength and fitness levels, and can be a useful source of advice and practical tips on any new movement problems that arise. Physiotherapy is particularly useful when the physical symptoms are changing, or during the recovery phase after a relapse.
Therefore in order to plan for the future there is a need to reduce these consequences of the disease on function, personal activity, and social participation in order to allow the patients as much independence as possible with the highest possible quality of life as mentioned above.
The progressive course and early onset of MS with long survival time can have significant consequences on personal activities, social participation and quality of life. So for example, 15 years after disease onset 15% of MS patients need technical aids for walking while 50% of patients are disabled to the point at which they at least require a cane to walk a half block and 29% use a wheelchair (Kesselring and Beer 2002). Therefore gait re – education and correct use of such equipment will be crucial. This highlights the need of physiotherapy involvement in order for people with MS to become independent and also self manage.
Physiotherapy alone (inpatient or outpatient) as well as other specific therapy modalities may lead to improvement of mobility and reduction of disability but the effects are often relatively short-lived. The main reason for the long-term effect is most probably due to improved compensation, adaptation and reconditioning and better use of personal and social resources, hence highlighting the involvement of other external resources in conjunction with physiotherapists to adequately deal with the future for MS patients.
It has also been noted that many people with MS and carers experience problems with obtaining appropriate information about MS. People with MS should be enabled to play an active part in making informed decisions in all aspects of their MS health care by being given relevant and accurate information about each choice and decision. Therefore according to the NICE guidelines made in conjunction with physiotherapists concerning self-management for the future. As far as possible, people with MS should be helped to manage their own general health through the following information and advice provided in written, audio or other media due to different levels of disability experienced during progression of the condition:
- specific activities that promote health maintenance and prevent complications
- changes in their health that may require them to take further action
- The condition and its management, including both local and national sources of further information and support in clear and accessible language.
This function should be fulfilled by working in conjunction with local voluntary organisations and through acquiring the skills needed to:
- seek, evaluate and use advice and help available
- communicate effectively with health care professionals for example, through participation in the Expert Patient Programme; http://www.doh.gov.uk/cmo/progress/expertpatient/index.htm
At Manchester Neuro Physio they experienced that MS affects everyone differently and goals should be unique to individuals. They reported that physiotherapy should commence as soon as possible following an initial attack to allow individuals reach full potential and limit the progression of symptoms. Physiotherapists discuss realistic long and short term goals that will be at the centre of patient’s rehabilitation. The physiotherapists will teach individuals with MS (and family members / carers if appropriate) exercises to be continued outside of therapy and in the future.
As well as improving your general health, physiotherapy can help:
- improve balance and walking difficulties
- reduce muscle spasms and stiffness
- increase strength
- retrain normal patterns of movement
- increase energy levels
- reduced bladder or bowel problems
- increase mood
- educate about MS and your symptoms
- reduce risk of falls
Planning end of life care:
People severely affected by MS might have trouble to make choices in the future. Speech difficulties, fatigue or memory problems can make it hard for them to express their wishes. A decision needs to be made as to whether hospital is the best place for care or whether the person with MS would choose to remain at home or prefer another less 'acute' care setting, such as a hospice. The new Mental Capacity Act 2005 which came into force on 1 October 2007 means everyone has the right to decide what care they receive now and in the future. For full details, go to the Ministry of Justice website. This page looks at some of the things you might need to consider when making plans:
- Power of attorney
- Advance directives or ‘living wills’
- Advance statements
For more detailed information, download our MS Essentials publication ‘Support for People Severely Affected by MS’ or, if you live in Scotland MS Essentials publication ‘Support for People Severely Affected by MS in Scotland’
Effective long term management to maintain quality of life in those affected by multiple sclerosis is essential. Recently, self management has emerged as a central role in the maintanace of such a chronic disease. Physiotherapists are becoming increasingly involved in such management, empowering patients to realise that they are in a unique position to manage their own disease in an effective, efficient manner. Through education, advice and supportive guidance, the physiotherapist can work in partnership with the patient, their family and the multi-disciplinary team to help manage periods of relapse and associated disability while maintaining physical function and mental well-being.
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Thomas CK, editors. Fatigue. New York: Plenum; 1995. pp. 361–380.
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Farinotti, M., Simi, S., Di Peitrantonj, C., McDowell, N., Brait, L., Lupo, D. and Filippini, G. 2007. Dietary interventions for multiple sclerosis. Cochrane Database of Systematic Reviews, 1, pp. 1-14.
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Payne, R.A, Donaghy, M. 2010. Payne’s handbook of relaxation techniques a practical guide for the health care professional. 4th ed. Elsevier Limited.
Payne, A. 2001. Nutrition and diet in the clinical management of multiple sclerosis. Journal of Human Nutrition and Dietetics, 14, pp. 349-357.
Pohl, D. (2009). Epstein – Barr Virus and multiple sclerosis. Journal of the Neurological Sciences 286 pp.62–64.
Polman, C. H., Thompson, A. J., Murray, T. J., Bowling, A. C. and Noseworthy, J. H. 2006. Multiple Sclerosis: The Guide to
Treatment and Management. 6th ed. New York, USA: Demos Medical Publishing.
Rosati, G. 2001. The prevalence of multiple sclerosis in the world: an update. Journal of Neurological Sciences. 22: 117-139
Saffir,M.F., Rosenblum,D.S. 2002. Pain in Multiple Sclerosis in Monga, T.N., Grabois,M. Pain Management in rehabilitation. New York, Demos Medical Publishing.
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