A short and simple description of how the nerve sends information is necessary to enable some understanding of why information is affected in MS.

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1 MULTIPLE SCLEROSIS Multiple Sclerosis (MS) is a condition that affects Central Nervous System (the brain and spinal cord). In MS the speed and accuracy of the signals that travel along the nerves are diminished. The motor and sensory nerves are affected. Messages that convey information from the outside environment to the brain are sent through sensory fibres. For example if someone touches something hot, temperature information travels up a sensory nerve to the brain. Motor nerves send messages from the brain to muscles; this in turn produces some sort of movement. A short and simple description of how the nerve sends information is necessary to enable some understanding of why information is affected in MS. Nerve fibres (or axons) connect to other nerve fibres and to other parts of the body such as the eyes, muscles, skin, heart, stomach and bladder. The neural impulse (message) travels up or down these sets of axons. Around the axon is a sheath that has many layers called myelin. This sheath insulates the axon and its presence helps messages travel with great speed and clarity. In MS the myelin is affected which decreases the speed and clarity of the information, this in turn affects the person s ability to function in some way. During a MS attack inflammation occurs in the myelin sheath, in random patches. The random patches are called plaques. The myelin is then destroyed, and scars are formed where damage has occurred. Multiple Sclerosis is called multiple because it affects many parts of the brain and spinal cord. Sclerosis is a Greek word meaning hardened tissue that interrupts signals travelling. Cause of MS: The cause of MS is not known. The following theories about the cause of MS are as follows: MS may be due to a virus to which some people have inherited susceptibility. The immune system has reacted in an unusual way to a common virus. There is a virus that lies dormant in the system for many years before being activated. The body s immune system over-reacts and attacks the virus plus the host (in this case the myelin sheath covering the axons). 150

2 Pattern of MS: MS is a chronic and progressive. There are four types of MS. Relapsing-remitting MS. This is when a person has symptoms of MS that resolve. When the symptoms have resolved, the person is said to be in remission. Each time the person has a relapse, the symptoms will be worse than the previous bout of MS. Primary Progressive MS, where there is a worsening of symptoms since the onset of MS, and there is no full recovery between bouts of MS. Secondary Progressive MS forms of MS have exacerbations and remissions, followed by steady worsening of symptoms. Progressive relapsing MS tends to be progressive from the onset, but exacerbations go into remission. To diagnose MS is very difficult because of the patterns of relapsing and remissions. Often after the first time a person has MS, it does not reappear for a long time. Initial attacks may be brief and sometimes mild enough to be unrecognisable. Other factors that make it difficult to diagnose are that there is no single test to confirm MS; and individuals have differing symptoms. Prevalence: Symptoms usually appear between the ages of 20 to 40. Initial diagnosis seldom occurs for people under 15 years of age or over 50 years of age. More women are affected than men. World wide, the incidence of people who have MS is greater in cool climate zones, therefore people who live closer to the equator are less likely to get MS. In Australia eg the incidence in Northern Queensland is between 5 and 18 per , whereas in Tasmania the incidence is closer to 75 per MS is more common in white races. A person has a greater risk of developing MS if they have a close relative with MS, than a person without a relative who has MS. One in ten people who have MS have or will have a relative with MS. Prognosis: Most people with MS have a near normal life expectancy. Most people have a few effects, however at its worst, MS will cause a person to find it difficult to do most tasks including holding objects, speaking and walking. 151

3 Symptoms: There are many symptoms that are associated with MS. Someone with MS will not get all the symptoms. Individuals will have different symptoms to varying degrees. Motor (movement) symptoms are symptoms that occur due to the muscular system not working effectively. Some of the problems are: diminished balance, and unsteadiness upon walking, spasticity (a tightness in the muscles of the trunk, arms and legs), and they may have shaky hands leading to an inability to manipulate objects. When the muscles around the mouth move poorly, the person may have difficulty forming their words and being understood. Perceptual difficulties are difficulties with interpreting the external environment. For example a person might not be able to determine that an object is hot, cold or sharp. Problems with sensation may occur and may cause the person a lot of discomfort. They may experience pins and needles, or pain in various parts of the body. A person s cognitive ability such as being able to plan, sequence, solve problems or concentrate may be affected if the MS affects their brain. It is not uncommon for vision to be impaired. Double vision may be present, or there may be an unusual amount of side-to-side movement of the eyes (this is called nystagmus). If the nerve that goes to the eye is affected pain and loss of vision from the central part of the eye may result. Bladder and bowel problems can be part of MS. Bowel problems are usually in the form of constipation. Bladder problems however, are varied. Feeling an urgent need to go to the toilet even if the bladder is not full (frequency) is the first problem. Retention, whereby only a small amount of urine is passed, and hesitancy-difficulty starting to urinate can occur. Lastly urgency can occur (there is little warning of needing to go to the toilet). If there is a need to rush to the toilet, the person s risk of having a fall is increased. A general feeling of fatigue is very common. Often a short rest will help to reduce fatigue. Heat however, increases fatigue and worsens other symptoms of MS. Heat can be from being in a hot room, or in the sun; or it can be heat from a raised body temperature. MS can place pressure on people s lives in many ways. This can impact on the person s feelings, ability to socialise and to fulfil roles they have previously fulfilled easily. It is unknown when someone will have a relapse of MS and what affects that relapse will cause, living with this uncertainty is likely to cause stress. Fatigue may reduce the person s ability to socialise in the way 152

4 they did before being diagnosed with MS. If a person loses their job or chooses not to work due to having MS, the reduction in finances may reduce their ability to socialise. In the family realm, having MS can change interaction with family members. Physical problems may reduce sexual function; this is likely to change the nature of the person s relationship with his/her partner. Fatigue and other problems may prevent the person from interacting with their children in too many pursuits, or in too active ways. Depression is thought to affect 50% of people with MS. Some understanding of what the person with MS is experiencing may help others to provide empathic and practical support. Medications: There are a number of medications that are used for treatment of symptoms of MS. All medications have side effects. The side effects of the most commonly used medications are as follows: Diazepam is used to relieve muscle spasms and seizures. The side effects include: drowsiness, dizziness, tiredness, diarrhoea, upset stomach, changes in appetite, restlessness, blurred vision, difficult and frequent urination, changes in sex drive or ability. Baclofen is a muscle relaxant; it relieves spasms and cramping in muscles. Side effects include: visual or auditory hallucinations, depression, mood changes, dizziness, fainting, nausea, muscle weakness, ringing/buzzing in the ears, confusion and drowsiness. Dantrium is also used to treat spasticity or muscle spasms. The side effects include: muscle weakness, drowsiness, fatigue, dizziness, diarrhoea and difficulty swallowing. Prednisolone is used to produce faster recovery from a relapse of MS. The most common side effects include: Decreased or blurred vision, frequent urination, increased and thirst. Associations: NSW MS Societies: The Multiple Sclerosis Society of NSW, head office, provided the following addresses. NSW head office: Lidcombe: ph: Northern Region: Chatswood: ph: Southern Region: Miranda: ph:

5 Penrith: Penrith: ph: Macarthur: Narellan: ph: Illawarra/South Coast: Corrimal: ph: Central Coast: Cooranbong: ph: Hunter Region: Raymond Terrace: ph: Country North: Coffs Harbour: ph: Country South: Wagga Wagga: ph: Country West: Orange: ph: ACT: Gloria McKerrow House 117 Denison Street Deakin ACT 2600 Ph: (02) References: National Institute of Neurological Disorders and Stroke NINDS Multiple Sclerosis Information Page. Available online: National Library of Medicine Medline Plus Health Information. Available online: National Multiple Sclerosis Society of Australia Ltd Multiple Sclerosis the Mystery Disease. National Multiple Sclerosis Society of Australia, Melbourne. National Multiple Sclerosis Society of Australia Ltd Spasticity and how it Relates to Multiple Sclerosis. National Multiple Sclerosis Society of Australia, Melbourne. National Multiple Sclerosis Society of Australia Ltd. What everyone should know about Multiple Sclerosis. National Multiple Sclerosis Society of Australia, Melbourne. National Multiple Sclerosis Society Things I Wish Someone Had Told Me: Practical Thoughts for People Newly Diagnosed with Multiple Sclerosis. National Multiple Sclerosis Society, New York. National Multiple Sclerosis Society of Australia Ltd Living With Multiple Sclerosis: A book for the Newly Diagnosed. National Multiple Sclerosis Society of Australia, Melbourne. Neurological Resource Centre 1998Neurological Conditions Information Manual. Neurological Resource Centre of SA Inc Unley, South Australia. 154

6 Multiple Sclerosis Neurology Channel 2002 Available online: Issue: The person may feel fatigued. The person may not wish to participate in activities due to fatigue, or they may need a rest during the activity. Do not think reduced participation is laziness, it is real fatigue. Provide activities to suit the person s energy level. Break down activities to allow participation in parts of the activity or resumption of the activity after the person has had a break. Provide a quiet room away from activity where the person can go for some time out/ a rest before they become tired. Offer help for shopping, meal preparation etc to help the person have more energy to participate in more enjoyable activities. Provide activities that are not always active, as sometimes participation in quiet activities would be possible, whereas activities that require too much active participation may mean the person cannot join in. If activities are outdoors, ensure it is not too hot and make sure there is plenty of shade. Make sure room temperature is not too hot, because heat increases fatigue. Issue: The person experiences urinary urgency. The person needs to be able access the toilet easily. Provide a unisex accessible toilet, make sure that the path to the toilet is clear and well sign posted. Make sure indoor and outdoor activities are near toilet facilities. For example if you go to a local park, ensure that there is a toilet facility (that is open) at the park. Accept that people may need come and go from the group to fit in with their toilet needs. 155

7 Issue: The person has perceptual difficulties such as knowing whether something is hot or sharp. The person may be Make sure that if you have heaters on (particularly prone to being ones under the pews) that the person knows that burnt/cut. the heating is on. Do not turn up the heating too high. If working in the kitchen, an activity like buttering bread would be easier, safer and would require less energy than cutting carrots etc. Offer to carry hot items eg tea/coffee for the person, so the person doesn t risk burning him/herself by spilling it whilst walking. Issue: The person is unsteady walking or has poor standing balance. The person is at Ensure the paths around the church and hall are increased risk of falling, smooth. and may find walking on uneven surfaces Ensure paths are wide enough to accommodate difficult. walking aids. Make sure paths are not mossy or slippery. Provide rails on both sides of stairs. If children are present, remind them not to run around where there are groups of people. Ensure they do not run across the person with MS. Explain to the children that the person is likely to be put off balance, and even may fall if the children bump into them whilst running. Allow time to move from one space to the other as hurrying will increase the risk of falls. Walking on grass and other uneven surfaces are more difficult than paved surfaces so check the area is not too uneven if planning outdoor activities. 156

8 Issue: The person may not be able to concentrate or think as clearly as they did before they had MS. The person may need Plan meetings to be short and focussed. more time to do activities/tasks. They Reduce the amount of people talking at any one may chose to reduce time. their role in committees. Decisions made and activities to be done are best to be written down. Give the person time to complete tasks, give them a choice of doing tasks themselves if this enables them to think things through without the pressure of others. Ensure that activities are within their concentration span, or that they can resume the activity at another time, if their concentration has dwindled. Issue: The person may have visual difficulties such as nystagmus or double vision. Doing precision tasks Provide large print copies of handouts, Bibles and and reading may be Hymnbooks. difficult. The person may choose to cover one eye to stop vision from being double. Reading may be difficult. Provide tapes if necessary. Offer the person to do other activities, eg ask them to be the offering steward, rather than the person who does the readings at church. Operating machinery and driving is not recommended if they are currently experiencing visual problems. Activities that use heat and cutting, such as cooking or woodwork are likely to be dangerous if the person s vision is affected. Provide other options for tasks. If the person realistically feels that these activities are within their capabilities, provide supervision and/or help. Do not do too many activities that require close vision. 157

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