Tag: Wheelchairs

  • Finances: Benefits

    Sources of help

    The most obvious written source is the Disability Rights Handbook. This is updated every April and published by the Disability Alliance (see Appendix 2). This guide is very readable but, unless you are familiar with interpreting legislation, you should still seek advice from other sources.

    • The Benefits Agency handles social security payments for the
    Department of Social Security.
    • Your local Citizens Advice is the best source of detailed and impartial information available; there are bureaux across the United Kingdom – the telephone directory will list the address and phone number of your local office, or you can contact the national bureau listed in Appendix 1. They will try to answer questions on almost any issues of concern to you, but will direct you to more appropriate sources of help and advice if you need any.
    • Your local authority’s welfare rights advisor.
    • Welfare advisors at your local branch of the MS Society.
    • The Post Office, particularly larger branches and regional offices, stock a wide range of government forms and leaflets, which are normally prominently displayed. These include leaflets detailing entitlements to health care under the National Health Service, family benefit and disability allowances. Contact addresses and telephone numbers are given for further information in each of these leaflets.
    • Your local Employment Service Office (Job Centre) will also stock a range of helpful information, including a pack of employment- related publications that cover most issues related to employment and benefit entitlements. Staff will usually be able to answer specific questions that you have, although you may have to book an appointment in advance.

    Stopping work

    Benefits available will depend very much on your personal circum- stances, the extent of your disability from MS, the nature of your occupation and any health insurance and/or early retirement pensions provision, amongst other factors. This is why you need careful and detailed impartial advice from someone who is able to go through all the aspects of your situation, and point out both the short- and long-term financial consequences of any decision you make.
    The first important consideration is whether you are likely to consider a different type of work to that you have been doing, either now or in the future. If you are younger, a considerable way from normal retirement age, this is a crucial issue. Of course the work might be part-time rather than full-time, or involve being self-employed rather than employed. Although MS, as we have said, is very unpredictable, it may be worth discussing your medical outlook with your doctor, particularly regarding your skills and abilities related to the symptoms and any disabilities that you may have now. As a medical assessment of your situation is likely to prove crucial to some of the financial and other benefits you could receive, the role of your doctor – GP or specialist – will be important.
    Second, if you have decided that you would like to retire, probably on the grounds of ill-health or disability, then you need to work out how best this can be undertaken. It would be sensible to seek the advice of your Trade Union, if you belong to one, or your professional body, and/or to seek advice from Citizens Advice, before taking any action. How you leave your work – taking early retirement on grounds of ill-health, resigning or being dismissed – also affects the financial benefits for which you may be eligible. Some of these depend on what pension arrangements you might have. You should find out all this from your employer’s personnel department or the relevant pensions company. Your employer should help you to retire at the most opportune time for you to gain financially
    If you find yourself being peremptorily or unfairly dismissed, you need to seek further advice immediately from your Trade Union, professional body or Citizens Advice. In these circumstances, if you have been employed by your employer for longer than 2 years, you can pursue your case through an industrial tribunal – but again seek advice.
    Third, you need to think through carefully the financial consequences of your retirement in the light of your eligibility for a range of benefits. This will depend on many factors. You will need to be realistic about your current and future financial commitments. You may also have to consider your family, as to whether other members of your household are or can be earning, even if you cannot. Even if you have taken early retirement, and thus possibly have an occupational pension, you may still qualify for various means-tested benefits. These may depend not only on your current income, but on your National Insurance Contribution record and your degree of disability. You may be eligible for some or all of these benefits:

    • Incapacity Benefit
    • Severe Disablement Allowance
    • Disability Living Allowance (see Multiple Sclerosis – the ‘at your fingertips’ guide in Appendix 2).

    If you do not have an occupational pension you may be eligible for other means-tested benefits, such as:

    • Income Support
    • Housing Benefit
    • Council Tax Benefit.

    If you are eligible for Income Support, then you also become eligible for a wide range of other benefits, such as:

    • free prescriptions
    • free dental treatment
    • free school meals for your school-age children.

    Help for services and equipment

    If you need a particular piece of equipment, a particular service or a holiday, there are funds held by trade unions, professional organizations or charitable bodies for such purposes. Often there is a question of eligibility, but of a different kind than that for the Benefits Agency. You may have to be a current or former member of the organization concerned, or have some other characteristic that gives you entitlement
    – such as living in a particular area.
    The problem is often finding out which organizations you can apply to, for many local charities are small and are not widely advertised. However, there is a Charities Digest (your local library should have a copy) which lists many, although not all, sources of funds. Your local library, or Citizens Advice, may be able to give you some sources as well. There is also another directory called A Guide to Grants for Individuals in Need which contains a relatively comprehensive list of charities who provide support for individuals with certain eligibility criteria (see Appendix 1). The MS Society can help here too.

    Children as carers

    There are a number of allowances that may be available, again depending on your eligibility, when you require the support of others for your care. Some benefits are payable to you, and others to those looking after you. There are, as usual, quite complicated eligibility rules about which you will almost certainly need to seek detailed advice. For example, if one of your children is looking after you on virtually a full-time basis (35 hours a week or more), and you have Disability Living Allowance at the middle or higher rate, or Attendance Allowance, then he or she may be eligible for Invalid Care Allowance. You yourself may be able to obtain Attendance Allowance, or the care component of Disability Living Allowance. The criteria for these allowances are very specific, and trying to help your children out might be difficult, without quite a lot of investigation and advice about your and their eligibility from either Citizens Advice or another impartial source of advice about disability.

    Mobility

    As part of the Disability Living Allowance, it may be possible to claim for the higher or lower rate mobility components to help with additional expenses incurred with your decreased mobility. If you are able to obtain the higher rate component in particular, then it opens the door for a range of other benefits. Both the components are open to people below the age of 65 (or 66 if the disability began at the age of 65). The tests for eligibility for this mobility component are increasingly stringent, and it is not possible to go into them in great detail here; you should seek advice about the criteria and their application to you from the MS Society. As someone with MS, to obtain the higher rate allowance, you will need to demonstrate, in the formal words of the regulations that your ‘physical condition as a whole’ is such that you are ‘unable to walk’, or are ‘virtually unable to walk’, or that ‘the exertion required to walk would constitute a danger to [your] life or be likely to lead to a serious deterioration in [your] health’.
    There are other criteria under which the higher rate can be claimed but they are unlikely to apply to people with MS. As you can see, the crucial issues in adjudicating any claim for people with MS, apart from when you literally cannot put one step in front of another, are likely to be the meaning of being ‘virtually unable to walk’, or the relationship of exertion in walking to a possible deterioration in health. In these cases, the assessment process and medical judgements are both critical – the variability of MS does not help. For the lower rate of mobility allowance, the major criterion is not so much whether you are physically able to walk, but whether you require someone most of the time to guide or supervise you, to enable you to walk outdoors.
    The Disability Rights Handbook published by the Disability Alliance Educational and Research Association has a comprehensive section describing in detail the requirements and procedures for claiming these benefits. You could also telephone or write to the Benefits Agency – which handles such claims for the Department of Social Security – for information on mobility allowances (see Appendix 1). Further help can be obtained through the MS Society’s Helpline (the Benefits Advisor) or your local DIAL (Disability Information and Advice Service). If their number is not available in your local telephone book, the Social Services Department of your local council should be able to provide it for you. There are appeal procedures if your claim is turned down. In any case it is very important that you monitor your situation so that, if your mobility decreases through the MS, or indeed through another cause, you claim for the appropriate allowance. Many relevant and useful local addresses can be found in your area telephone book, or the Yellow Pages or Thomson guides.

    Wheelchairs

    Under the NHS, both hand- and electric-powered wheelchairs are supplied and maintained free of charge for people who are disabled and whose need for a wheelchair is permanent. Although, in principle, any wheelchair can be supplied by the NHS, in practice the decision is made locally, where the circumstances of the individual and local resources will be taken into account. Since April 1996, powered wheelchairs can be provided by the NHS, if you need a wheelchair, cannot walk and cannot propel a wheelchair yourself. Again local decisions are made about provision of such wheelchairs, although it is anticipated that local decisions will fit with the broader national criteria. These include being able to handle the wheelchair safely, and being able to benefit from an improved quality of life in a wheelchair. If you already have a wheelchair, move to new area and do not meet the local criteria in that area, you can still keep your wheelchair – unless there are clinical reasons for withdrawing it. Attendant-controlled powered wheelchairs can also be issued where it is difficult for the person to be pushed outdoors – if the area is very hilly, if the person is heavy, or the attendant is elderly and unable to push a wheelchair manually.
    There are voucher schemes operated by NHS Trusts whereby people can contribute towards the costs of a more expensive wheelchair than a Trust would provide. Schemes either give responsibility to the Trust for repair and maintenance of the wheelchair, or allow you to take responsibility yourself. You may not be able to use this scheme to obtain a powered wheelchair, but it may be possible to use the Motability Scheme to obtain such a wheelchair. Wheelchairs, pavement vehicles (usually electrically operated wheelchairs or scooters), crutches and walking frames are exempt from VAT.
    The MS Society branches and HQ can offer advice on financial help for wheelchairs or even provide one in some cases.

    Driving

    There are a number of benefits for which you may be eligible as a driver. If you receive the higher rate mobility allowance you will be allowed to claim exemption from vehicle excise duty (road tax) on one vehicle. This exemption is given on condition that the vehicle is used ‘solely for the purposes of the disabled person’, so care must be taken as to the use of the vehicle. Nevertheless, it is likely that some commonsense latitude will be given.
    If you have the higher rate mobility allowance, you will be automatically eligible for the Blue Badge, which gives parking privileges, and also for access to the Motability Scheme (see below). You will also get VAT exemption on adaptations to make your car suitable for driving by you, as well as exemption on the repair, maintenance or replacement of these adaptations.
    Note that the mobility allowance does not count as income for these purposes. Furthermore arrears will not count as capital for means-tested benefits for up to 1 year after they are paid.

  • Mobility and managing everyday life: Aids and equipment

    Occupational therapy

    Many of the aids and much of the equipment that you might need are available through an occupational therapist or at least you are likely to be able to obtain their advice on what to have. Occupational therapy is mainly concerned with helping people to manage any difficulties they may have in ‘daily living’. You will almost certainly be offered a consultation with an occupational therapist (OT) at some point but, if you are not and want such professional advice, your GP or neurologist should be able to refer you to an OT to assist you. You also may need to use an OT if you wish to obtain aids and equipment through your local NHS Trust or Department of Social Services.

    Walking aids

    Many people with Multiple Sclerosis experience problems in walking. Sometimes this is temporary, e.g. during an attack or exacerbation, sometimes it is more long term as the MS develops. A major problem is often a difficulty with balance, causing staggering, in which you fear you may fall. Of course, using a mobility aid (walking stick, crutch, and so on) is something that many people with MS dread, for it appears to be a very visible sign both to yourself and others that the MS is progressing. However, once your balance has started to deteriorate significantly, people with MS often report that, when others see them, with no mobility aid, staggering and losing their balance, they seem to think that the person with MS is drunk. Thus dealing with this problem is important socially and physically, to prevent falls and possible injury.
    A mobility aid is the usual way to overcome these problems, and your physiotherapist or OT can help here. Mobility aids range from one or two canes (walking sticks), to one or two crutches used under the forearms, to light walkers which have four legs (Figure 8.6). Both canes and crutches can have several short legs to give increased stability. Ensure that whatever you use deals with the problems you have or might have, and that you are comfortable using it. You may need to experiment a bit to get the right combination of mobility aids for different situations. For example, although some people are worried that walkers are amongst the most visible of mobility aids, because they operate in front of you they give you more stability, and may even reduce fatigue from walking. They may also have a seat, or a basket to allow you to carry things. Keep your situation under review, and make sure that the mobility aid you are currently using is really the one best for you.
    Mobility aidsFigure 8.6 Mobility aids.

    Chairs and wheelchairs

    For many people with MS, the day when they feel that they have to consider using a wheelchair is a big day in their lives. However, we all have to adapt to declining mobility as we get older, and to using additional means of getting around. Although there is still some social stigma attached to being in a wheelchair, the situation has dramatically changed in the last few years: in particular, changes in wheelchair design, the use of wheelchairs for highly successful sports activities, and the advent of the electric scooter mean less dependence on others than previously.
    Sometimes the use of a wheelchair may be a relief – in the sense that it can help avoid some of the most awkward and exhausting struggles to get around, both for you or your partner or family members. In any case, you may only need it on an occasional basis.

    Guidelines for choosing a chair
    The general rule is, of course, that you should choose a chair that is comfortable for you – particularly when you are using it for longer periods. However comfortable the chair, you must move regularly, at the very least by shifting your position, to try and avoid pressure sores and enhance your circulation. Maintaining a good posture is especially crucial if you are sitting for long periods. More specifically, the height of your chair should be such that your hips, knees and ankles rest at right angles. The depth should allow your thighs to be well supported without undue pressure behind the knee, and arm rests should be set at a height where your shoulders are relaxed when your forearms are placed on the rests. You should also have a chair that allows your head to be supported.

    When to buy a wheelchair
    It is best to make a gradual transition to wheelchair use, if you can, over weeks, months or years. When you find that:

    • the effort, perhaps particularly outside the home, required to walk some distance is too much;
    • walking aids tend to assist you less;
    • you are getting increasingly concerned about falling

    then it will be worth considering using a wheelchair, at least for some activities.
    All but a few people with Multiple Sclerosis should be able to make a gradual transition to a wheelchair. This may overcome the ‘all or nothing’ approach, which many people with MS fear.
    If it is outside the home that you need to use a wheelchair first, you could think of getting around in a combination of ways: using a wheelchair for some things and a walking aid for others. Where there are sufficient supports – perhaps around the home – you may be able to walk relatively unaided for a few steps. In this way, you can conserve your precious energy, still undertake some active exercise, and maybe actually increase the range of activities that you are able to do.

    Advice
    It is important that you obtain good independent advice about the appropriate type and specification of wheelchair for your needs. An increasing number of companies are now producing wheelchairs of all kinds but it is best to ask someone who professionally assesses wheelchairs, usually an occupational therapist or a physiotherapist. The NHS also operates Wheelchair Service Centres, where assessment is undertaken, and to which you should be referred for advice.
    You might be able to get financial help via the mobility components of the Disability Living Allowance. See the section on Benefits in Chapter 13.

    Types
    There are several types of wheelchair that you need to consider depending on your circumstances (Figure 8.7):

    • Up until recently the most common was a manual wheelchair, powered by yourself – for which you need sufficient upper body strength and, for going some distance, endurance, and relatively low and predictable levels of fatigue.
    • For people who may need to use a wheelchair from time to time, portable (collapsible) wheelchairs are available to take with you in a car.
    Powered wheelchairs are increasingly used by someone who cannot stand well or transfer easily, and has not got sufficient upper body strength to propel a wheelchair manually. They are usually driven by means of a small control arm, battery driven, heavy and very solid, and are not easily transportable – so a specially adapted car or van into which the wheelchair can be driven is usually needed.
    • A very popular, but relatively expensive, alternative for people who have not got the upper body strength to propel a manual wheel- chair, but who can stand, transfer well and have reasonable balance, is an electric scooter. The scooter looks like an electric golf cart – it is battery driven with three or four wheels, and is steered and controlled through the handlebars. There are now many types of electric scooter, some of them relatively portable, although they are still very heavy.

    Powered wheelchairs, and particularly electric scooters, are enabling people with MS to have a radically new approach, not only to their mobility but also and just as important, to their social relationships. Rather than being pushed from behind, people now feel more in control. They can move at the pace of others, talk to them side by side and establish again a more equal – and independent – relationship, at least in this aspect of their lives. Research is now indicating how important the advent of electric scooters is for opening a new phase in the mobility of people with MS.

    Which is best for you?
    The criteria used to assess which type of mobility aid is best suited to you are generally:

    • your ability to stand, balance and transfer;
    • your ability to use the controls on a powered chair or vehicle;
    • your upper body strength;
    • the nature of your activities, particularly the balance between indoor and outdoor activities;
    • the terrain outside and inside your house, and
    • the availability of someone to assist you.

    Wheelchair typesFigure 8.7 Wheelchair types: (a) manual, (b) powered, (c) electric scooter.

    Your memory and cognitive status will be assessed if, for example, you are likely to travel very far on your own. Professional advisors like to reduce to the minimum any risks that you might run by using a vehicle such as a scooter – you may feel it is appropriate for you to have one, but they may feel that you are only just able to control it. This view frustrates people with MS who sometimes feel their capacities are greater than those estimated by their professional advisor.

    Negotiating between wheelchair and chair
    When your leg muscles are weak, and the neurological control of them is very damaged, moving from a seated to an upright position is often very difficult. You may well need some professional advice and demonstration as to how best to accomplish this – possibly with aids, or someone who can help. As a general rule be sure you have any walking aid that you regularly use nearby, wear shoes, and always stand on a non-slip surface. The usual procedure to get up is to put your feet slightly apart and flat on the floor, and then to pull them back a little towards the chair. Place both hands on the chair arms, and then ease yourself forward so that your bottom is near the front of the chair. Then lean slightly forward, lift your head and look straight in front. You should then push down on your hands and heels, and straighten your hips and knees.
    When you move from a standing to a sitting position, the procedure is rather simpler, and involves turning round, so that you can feel the chair with the back of your legs. Use the chair arms to lower yourself into position. Of course, if you are getting in and out of a wheelchair, ensure that the chair is stable and that the wheelchair brakes are on! It is possible that in time you might need further assistance. There are inflatable and portable cushions to help you rise from a chair, and there are also a number of mechanical aids, usually incorporated into the chairs themselves, that hydraulically assist the actions of sitting and standing – although these can be expensive.

    Bathroom aids

    Baths and showers
    Ensure that getting in and out of the bath is as safe and easy as possible and that, when you are in the bath, you can relax without worrying. Working out how to clean yourself properly is often a relatively minor problem compared to getting in and out of the bath! Negotiating a bath requires both balance and strength. There are several things that can be done in stages (Fig. 8.8):

    Bath aids

    Figure 8.8 Bath aids: (a) grab bars and seat; (b) hoist.

    • Ensure that non-slip mats are both in the bath and on the floor.
    • Install grab bars at crucial points so that you can lower yourself in and pull yourself out. The siting of these is very important – consult your occupational therapist or other skilled person, to make sure that they can really help you.
    • Even if there is not someone else actually in the bathroom with you, it is good to have someone you can call on if you do get into difficulty.
    • If grab bars are not sufficient, perhaps because you have not got enough strength to use them, then you may need to consider other options, including bath seats both for transfer, and for use in the bath.
    • Bath hoists are also available that help to lift you in and out of your bath.
    • Another possibility, if it proves too difficult to negotiate the bath,
    is to install a shower: the larger types will have sufficient space for a shower chair or bench to sit on and will be easier to access than a bath. With a hand-held, temperature-controlled shower attachment, you should have a reasonably enjoyable experience, even if it isn’t quite the same for some people as a bath!

    Toilet aids
    Toiletting aids are important for, traditionally in our society, going to the toilet yourself is an indication of independence. Continuing to go to the toilet completely by yourself for as long as possible is an issue that many people feel strongly about, even between partners who have known each other for many years. Although having other people to assist you is a problem for both sexes, many men in particular are not so used to helping others with such issues on an everyday basis, such as young children or older parents, or indeed their partners.
    Clothing. A number of procedures can help. For men, one of the first things that you could do, if you have difficulties in controlling finger movement, is to readjust your type of clothing, to enable you to urinate from a standing position, or to take of f or loosen your trousers and underwear. Buttons on trousers are not often not easy to manage, so a zip is usually slightly more user friendly; if zips are difficult to operate, Velcro fastenings will still look good and fasten well; they can be used on underwear as well. Women may find this similarly helpful when they are wearing trousers.
    Toilet. If you have limited movement, or are a bit unsteady, you will need to be very careful in lowering yourself on to the toilet. You need to check where your arms and feet are, and stand directly in front of the seat, then bend your knees until you can touch the sides of the seat with your hands, and lower yourself down slowly. When raising yourself use the toilet seat to push yourself off. Check that the toilet seat is secure before embarking on lowering or raising yourself !
    As far as the toilet itself is concerned, there are a range of adaptations which may be of help:

    • Grab bars can be placed on adjacent walls if they are near enough.
    • Where a toilet is standing away from a wall, you could consider an over-the-toilet adjustable frame, which has arm-rests to help you raise and lower yourself (Fig. 8.9).
    Over-the-toilet frameFigure 8.9 Over-the-toilet frame.

    • There is an increasingly wide range of commodes.
    • You can install a slightly elevated toilet seat.

    The number of different adaptations in this area is increasing rapidly, so consult your occupational therapist, and look at other sources of information about such products.
    Toilet paper. One of the most trying problems for people with MS is using toilet paper, for the manoeuvre involves considerable movement and dexterity. You might find a wet cloth more useful than toilet paper, or you might consider using a squeezy bottle full of (warm!) water. There is also special equipment, such as a toilet-paper holder, which could help. A bidet might be easier, although this may well not fit into your toilet area, can be rather expensive to install, and would need fitting to your water supply. Recently a portable toilet/bidet has been launched that might help people who are worried about travelling and having to deal with conventional, and therefore problematic, toilets elsewhere. You may find a toilet that automatically washes and dries you where you are – this is the kind of development that could help many people with MS considerably.
    Public toilets. Finally, when you are out and about, you can obtain a special key from RADAR for public toilets for disabled people. More and more of these toilets are being made available.

    Dressing aids

    The problem with dressing, or undressing for that matter, if you have limited movement and dexterity, is not just the difficulty but also the time involved in doing them. Although you may be able to accomplish dressing now, in due course it can become such a frustrating and time- consuming process, that you have got little energy left to do anything else. As usual, it is a compromise between attempting to use all the traditional fittings on clothing, and having some which are easier to do up or undo. Of course everyone wants to look good in the clothes they are wearing, and it is often a question of trying to balance being fashionable (or not being unfashionable!) with clothes that are easy to manage. Women are in a slightly better position socially than men, in being able to use more accessories, such as jewellery or scarves, to complement whatever clothes they are wearing.
    In general, tight-fitting clothes are harder to manage than looser ones, whatever kinds of fixings are on them. Try:

    • large rather than small buttons;
    • trousers or skirts with elasticated waists;
    • dressing aids such as dressing sticks and button hooks.

    One of the trickiest problems for men is that of collars, ties and buttoned shirts. Most of the buttons on shirts can be left done up, so that the shirts can be slipped over the head, If this is a problem, buttonholes can be closed, then the buttons sewn on the outside of the shirt and Velcro strips placed behind them, so that when all the strips are closed it looks as though the shirt is buttoned in the traditional way. As far as ties are concerned, clip-on ones may be easier to use than the usual hand- tied ones or, alternatively, ties can be left already loosely tied and slipped over the head, and then tightened in place.

    Shoes and socks
    These cause real problems for people with MS, for they involve a range of movement, together with fine dexterity, both of which can be compromised. One way forward is to investigate the possibility of different ways of tying your shoes. If you are able to reach your shoes, then there are Velcro shoe fastenings, and various devices to tighten laces, and you can learn single-handed tying techniques. If you cannot reach your shoes, then slip-on shoes are a better idea; you could convert your lace-up shoes into slip-ons with elastic laces, if the shoe tongue can be stitched into place. Long-handled shoe horns will help you put on slip-on shoes.
    There are a range of other aids available to help pull on (and take off) socks and tights – these usually work through gripping the socks or tights with the end of a hand-operated long-handled tool.

    Bed aids

    People with MS often find it hard not so much getting into the bed but getting out of it again, in particular, getting up from low, and particularly soft, mattresses.
    You can try rolling onto your side and, facing the edge of the bed, try pushing yourself up with your underneath arm and, at the same time, swinging your legs over the bed. Once you are sitting up with your legs on the ground, it becomes easier to push up from the bed. There are some other things that you could try:

    • Cloth strips attached to the mattress will help you to pull yourself up.
    • You could position a grab bar, or even a floor-to-ceiling bar nearby, so that you can manoeuvre yourself to a standing position.
    • A bedpull (a rope or piece of strong webbing) lying on top of the bed and attached to the floor or other secure object, or a frame resting by the side of the bed could help.
    • You can raise the bed, but do ensure that this is done securely.

    If these strategies do not work, you could consider a completely or partially electrically operated bed or mattress, but really you should seek advice from your occupational therapist, and/or Social Services Department before embarking on this expensive choice.
    As far as turning in bed at night is concerned, this can be quite a problem. There are a number of minor adjustments you can make that may help, after checking the softness of the mattress. Changing your bedclothes or nightdress or pyjamas might help. Some people find that silky bedclothes allow them to turn much more easily than other fabrics. Night socks might also help you get a grip to turn over. A more expensive solution is to purchase a special mattress that assists turning, if these other strategies do not work.
    There may be additional problems here that require a different solution: how often do you need to get out of bed during the night to go to the toilet? If this is excessive or difficult, then consult your GP or neurologist to see if some solution, in the form of medication or otherwise, can be found for this.

    Kitchen aids

    Many people in the household gather in the kitchen and a very diverse range of activities go on there, so it is often worrying when mobility or dexterity problems arise. It is still likely that women will be the main users of the kitchen, despite apparent changes in social attitudes and the household division of labour. However, increasingly other household members like to undertake some tasks in the kitchen, and so it is important to ensure that several household members can use the kitchen easily. It is possible to adapt a kitchen completely for a person with MS, but in a sense this can create problems for other users. In effect, by enabling one person, you can disable others.

    Design
    If you are starting from scratch, or have decided on a major change in your kitchen area, then the main considerations are likely to be:

    • accessibility
    • safety
    • ease of use, and
    • whether other users of the area will be affected.

    Obviously the height of worktops and the sink area, especially if you are in a wheelchair, are important considerations. Think about arrangement and access to cupboards, storage areas and cooking facilities, so that you have to move as little as possible, especially if you are likely to be carrying things from one place to another. If you are not yet using a wheelchair, it would still be sensible to think of possible problems when you are making major changes – consider overhanging worktops, for example, so that they can be used from a seated position. Some kitchen systems allow for adjustment with changing circumstances: seek advice from your occupational therapist or specialist kitchen manufacturer about what is available.
    The point at which you decide to, or indeed have to, make some major changes in your kitchen area varies so much between individuals and the household situation, that it is difficult to make hard and fast rules about when you should embark on them. Other factors will be critical, particularly resources, and whether you can get additional financial help for such alterations from your local Social Services Department, usually through your occupational therapist.

    Food preparation and cooking
    There are two broad ways to look at this issue. The first way focuses on using foods which are pre-prepared in various forms, thus minimizing the amount of food preparation that you or members of your household have to undertake. There has been a revolution in this area over the last few years, leading to a major increase in prepared foods, instigated by changing lifestyles and the vastly increased number of women who are undertaking several jobs at once, both inside and outside the home.
    Although almost all people, and especially women, feel that they may be neglecting their families by using the staggeringly wide range of convenience foods, many now use such food increasingly to save time and energy. If people with MS do the same, they are not doing anything unusual, but just following a general trend. Many of those foods that are harder for people with mobility problems to prepare – potatoes, salads and vegetables, for example – can now all be purchased in pre-prepared form. Although there is an additional price to pay for these foods, and maybe a minor loss in nutrition, this is more than compensated for by the saving in time and energy that is spent preparing everything yourself
    – just like most people without Multiple Sclerosis! You have to strike a balance between convenience and possible modest drawbacks in terms of nutrition. If you are worried about any nutritional issues, you should consult your doctor, or ask for a referral to a dietitian or nutritionist.
    The second way is to consider additional aids and equipment that may be available to help you in the kitchen area. These may range from things like non-slip mats to secure mixing bowls, to high stools to work on, special trolleys, and padded handles to ensure a better grip. A wide range of everyday kitchenware, such as knives, forks, spoons, ladles, and so on, are now available in a form that will help you get a better grip. You will quickly find those aids that help you most. Try and phase what you do, so that you do not feel exhausted from working overlong on single tasks without a break. Look for special recipe books that not only suggest nutritious foods, but also show short cuts in food preparation.
    Using a microwave oven, especially the modern combination types, can be easier than a conventional one and, although it can be seen as just another short cut, cooking interesting food in such an oven can be quite a challenge. One of the additional benefits of a microwave oven is that it generates less external heat than a conventional oven and this could be an important point for people with MS who are very sensitive to heat.
    There is another issue here in relation to cooking and that is safety. Many people with MS have a problem with grip or sensation, and this, together with a hot food or utensil, is not a recommended combination! It is important to keep your eyes on whatever you are carrying, and to use this as a double check to ensure that you are carrying it firmly enough. By and large you should hold things with both hands, rather than with one or two fingers. Choose cups, for example, with two handles, or at least one large handle. In particular, try to carry hot liquids in containers with fitted lids so that, if you do drop them, there is less danger. Wearing rubber or special kitchen gloves can be helpful. For the most part, carrying and holding things is just a question of getting used to the changes in your sensations and grip, and being deliberate and careful about moving things, especially items that are hot.

    Writing aids

    Conventional pens and pencils are amongst the most difficult items to use if you have problems with grip, or indeed tremor. Pens or pencils that are much bigger in diameter than normal ones and have a less smooth surface are becoming fashionable now because they are ergonomically better for everyone’s fingers, and you should be able to find a selection of these in a large stationery shop or suppliers of products for people with disabilities. You could try putting elastic bands around pens and pencils to make them easier to use.
    The issue of tremor is in some ways more complex: it is of limited use being able to grip a pen if your writing is such that people have difficulty in reading it. This problem can be managed by weighting your wrist, for example, or by using weighted pens etc., which may dampen down the tremor. However, there is still a problem if you do not have much strength in your wrist. In this case there are various devices, writing guides for example, which help you to form letters and words, lessening the effect of the tremor. You will have to experiment to see if you can find ways of reducing the effect of both lack of grip and of tremor to produce sufficiently good results to be read by others.

    Computers
    A computer can be costly to buy and costly in terms of the time and effort of training yourself to use it to the full. One of the difficulties at present is the very rapid change in computer systems. No sooner has one been bought than the next – ‘enhanced’, ‘better’, ‘faster’ – model takes its place. It is an industry geared to continuous change, and it is quite likely that the computer you have just bought will be ‘out of date’ almost immediately. So you need to think very carefully about what you might want to use a computer for, how easy it is to use, and what support will you have in terms of help with programmes or the machine itself, if you get stuck. It would be good idea, if you have a friend with a computer, to check out how easy it is for you to use – in terms of the screen, keyboard and ‘mouse’. (Most systems operate with this small matchbox-sized object, which you hold, move and ‘click’ with a finger to give on-screen commands, although there are other keyboards that do not need the mouse.) This will enable you to see whether you can control the computer easily and have the dexterity to do so. You could think of learning to use a computer as a bit of a challenge!
    There are an increasing number of ways in which computers can be controlled even if you do not have the dexterity to use a keyboard or a mouse. There are various pointing devices which can be used. There has also been very rapid progress in voice-activated computer systems in recent years, and some of these can adapt to individual voices even when, as a result of the Multiple Sclerosis, words may not be formed exactly as they should – or are slurred in some way. However, if the way you say words is changing a lot, then this can be a problem because you may have ‘to train’ the computer yet again to recognize your voice. In this respect you should investigate the resources available at specialist Communication Aids Centres (see Chapter 9), regarding not only communication itself, but also the many innovative ways in which people with a range of disabilities can both use, and control, computer systems.
    Increasingly there are local classes being run for older or disabled people in the use of computers, and even if you cannot get to them, you may be able to talk to someone who runs the classes for advice. You might be able to get a trial run; then seek independent advice about what machine and software you should buy – and especially what support you will receive afterwards. Salesmen for particular machines can be very convincing, and you should not just rely on their advice. This is why you should always try and seek advice from someone you know or a specialist centre, who will understand both what you want to use a computer for and be familiar with the problems that you may have. Of course, there are all kinds of more exotic things you can do with a suitable computer, including using the internet – the World Wide Web for information and communication – sending and receiving faxes or emails, and doing a whole range of things other than writing a letter using a word processing package. However, you should be realistic about what you are likely to be able to do. Some people get addicted and it becomes their life, but for others the computer stays in the corner with hardly any use.
    If you have children, particularly older children, they are probably already using computers and would like nothing better than to demonstrate their skills at the expense of their parents!

    Help around the house

    The issue of housework can be difficult one, particularly for women; despite lots of changes in attitudes, ‘keeping a good home’ is still a commonplace expectation, even if it is not so openly stated now. For a woman whose life has been in the home, or who is now largely confined to home having given up a job, keeping the house clean and tidy may be something that both she – and perhaps others – see as an indication of her ‘usefulness’, and, thinking about housework in another way, it is good exercise. It can then be a wrench, even for women who do not care for housework at all, to lose even routine household tasks. For all these reasons, retaining even a very modest range of household activities is important, to feel that you are contributing to the household overall.
    A couple of things might help here:

    • Arrange things in your house as comfortably and safely as possible for yourself and others in your household. You may then have to compromise over who arranges what room, as long as you have
    the least disruptive pattern of furniture that you need to be able to move around safely.
    • There is a range of equipment that you can use from a standing position, or even at a distance from a sitting position, and this may allow you to do a little at a time, although the heavier jobs, and particularly those which involve moving around equipment – like vacuum cleaners – may need to be undertaken by others, unless you are very careful. You should be able to get further advice from your OT about available equipment and finding ways of managing to do at least some of the housework yourself.

  • Mobility and managing everyday life: Exercises

    A physiotherapist would normally recommend a programme of management geared to the diagnosis of your mobility problems.
    The main aim of exercising is to:

    • try and keep as many muscles as possible in good working order;
    • strengthen those that have become weak;
    • help keep joints mobile;
    • help prevent them from getting stiff;
    • help your coordination and balance;
    • improve your circulation – and in doing so help other body functions;
    • help reduce spasticity in more advanced MS;
    • help prevent pressure sores.

    Types of exercise

    A number of different types of exercise might be recommended depending on this diagnosis.

    • For your overall fitness, general exercises may be recommended, not necessarily linked to any particular movement symptom of your MS.
    • Exercises to improve your cardiovascular fitness will increase your heart rate, and are good for your circulation.
    • Stretching exercises will decrease the risk of spasticity and contractures. These exercises work by stretching muscles and tendons to increase their flexibility and elasticity.
    • Resistance exercises, with the use of weights or other devices, help increase the strength of muscles that have been weakened.
    • Range of motion exercises focus on improving the degree of motion of joints in the body, and aim to overcome, as far as possible, difficulties caused by stiffness in joints or problems in tendons and ligaments.

    There are several different ways in which exercises may be undertaken:

    • What are called active exercises are those that you can undertake yourself without any help, and you may use weights or changes of position to give more resistance (to increase the value of the exercise).
    • Self-assisted exercises are ones in which you can use one part of your body to assist another, e.g. by using a stronger arm to assist a weaker arm.
    • Active assisted exercises are those in which another person is needed to help you from time to time, but in which you still do most of the exercising yourself.
    • Passive exercises are those performed on you by others when you cannot easily move yourself, e.g. moving your arms or legs for you, to increase the range of motion.

    As you can see from these different types of exercise, you will not always need to have the physiotherapist present. Even in relation to passive or active assisted exercises, other people, once they know how to help, can assist you. Indeed the normal pattern is for you to have an assessment and a small number of sessions with a physiotherapist initially – usually five or six over a period of a few weeks – and then for you to work on the agreed exercises on your own or with a member of
    your family. You would probably return to the physiotherapist for periodic assessments thereafter to check how you are getting on.

    Self-help exercises

    Overall, one could say that exercise will help you maintain your maximum independence. Some floor and chair exercises are shown in Figures 8.1 and 8.2. Passive exercise is shown in Figure 8.3.

    Regular sessions

    Many people with MS find it puzzling, or even very disturbing, that physiotherapists will see them and assist them directly for several sessions, and then end regular consultations. This is for the following reasons:

    • Pressures of time and resources mean that it is difficult for physiotherapists to continue to give regular (weekly or fortnightly) sessions beyond the initial phase of therapy.
    • The training of physiotherapists emphasizes their evaluating role, in which the onus is on transferring responsibility as much as possible to the patient (client) for continuation of an agreed exercise programme.

    An important feature of exercise is that it continues on a regular basis and that as much as possible is undertaken by the person with MS. Unfortunately, there is often a conflict between the view of physiotherapists, who consider that one of their main tasks is to ensure that people with MS undertake an agreed programme on their own or with family assistance, and the views of people with MS, who often feel that the support provided by regular and continuing visits to a physiotherapist is vital. It is often difficult to resolve this conflict, although some pattern of occasional consultations can often be agreed.

    Caution

    Be careful not to get overheated or exhausted, which may on occasion lead to a temporary increase in some MS symptoms (see Chapter 6). Your own commonsense will normally tell you when you are exerting yourself too much. Generally, if you exercise carefully and regularly, with periodic breaks, you should find that you can get the most reward from the exercise.

    Floor exercisesFloor exercisesFloor exercisesFloor exercises
    Figure 8.1 Floor exercises.

    Chair exercises
    Chair exercises
    Chair exercises
    Figure 8.2 Chair exercises.

    Passive Exercise

    Figure 8.3 Passive exercise.

    Having a helper

    In general, the physiotherapist should have indicated how a friend or partner can help but, apart from following those instructions carefully, the following broad points may apply:

    • Get them to encourage you to undertake as much movement as possible, but don’t let them impede your movements.
    • They should allow you to perform a passive exercise (an exercise undertaken with/on a person by another person), as smoothly as possible.
    • They shouldn’t apply increased pressure at the most extreme points of the movement and, if a spasm occurs when they touch a limb, wait to see whether the spasm ceases and then let them help for as long as the movement is comfortable.

    Guidelines

    Most of the guidelines are quite sensible if you think about them.

    • Try and undertake those exercises that you have been recommended to do by a physiotherapist regularly, preferably every day – unless the physiotherapist indicates otherwise.
    • Whether you have been given advice by a physiotherapist or not, it would be wise to try and move around as much as you can, and to sit and stand as erect as possible. Posture is very important. When
    it is bad, it may produce muscle and joint strains, and secondary back problems. Furthermore, bad posture in a wheelchair or other chair may have more profound constrictive effects on your breathing and chest.
    • Try to exercise within your own capacity, i.e. do not get overtired, and try not to worry if you perform less well on a bad day. Everybody’s performance varies from day to day.
    • Also try and recognize when you need professional advice about problems that you are experiencing and that are not being helped by your current pattern of exercises.

    Sports

    The diagnosis of MS in itself should make no difference as to whether you continue to play sports or not. The key issues are whether you enjoy playing the sport, whether you feel that you can play the sport as well, or nearly as well, as you did before, and whether you feel that there are any inherent problems, e.g. a significant risk of injury, that might affect your life in other ways. People without MS have to consider these issues as well. You might be able to change your approach to sport later, perhaps by playing at a different level, if you feel that there may be problems for you at the highest competitive level. Nevertheless, sporting exercise is good for you, especially if you enjoy and benefit from it.

    Fatigue and exercises

    If you feel too tired to exercise, the key to solving this problem may be working out ways in which you can take advantage of the times when you feel less fatigued in order to do modest but well-targeted exercise. Look carefully at the day-to-day activities you undertake, to see whether they might be rearranged and result in less fatigue. Sometimes, introducing rest periods and using specific aids for certain activities will result in less fatigue, and the chance to undertake limited and helpful exercises. You may also need, perhaps in consultation with a physio- therapist, to review the exercises to make them less vigorous. After all, it is not only a question of getting your exercise regimen right, but of getting a good balance between exercise and relaxation.

    Weakness and exercise

    Physiotherapy, or exercise in general, cannot ‘mend’ the damaged nerve fibres that lead to less effective control of muscles. Weakness in the legs, and problems of balance, may be due directly to less effective nerve conduction, but exercise may help other causes of weakness. Devise a programme of exercise with your physiotherapist making sure that any special exercises that you do undertake, e.g. resistance exercises through using weights, are in fact likely to help you.
    After an MS attack, some people find that they cannot walk. Whilst normally some recovery is usual from the symptoms experienced at the height of an attack, the extent of this recovery can vary a lot. If demyelination has been quite substantial, there is little you can do through an exercise programme to reduce this damage, but you should still do leg exercises in order to keep your muscles as strong as possible, and to maintain flexibility so that, if more spontaneous recovery occurs, you will be able to take advantage of this. In any case it is very important to continue undertaking leg exercises, so that you can sit more comfortably and avoid some of the problems that can come with prolonged sitting.

    Spasticity and exercise

    A regular programme of stretching and related exercises can help muscular development, or at the very least help prevent the muscles wasting away. Keep your joints, tendons and ligaments as flexible as possible. Avoid positions where spasticity is more likely. Keep your head as central as possible when doing exercises and, if spasticity does occur, do a passive exercise as smoothly as possible to relax your muscles. On occasion it has been found that towels dipped in iced water and applied to the relevant area for a few minutes at most may help the muscles to relax. Unfortunately, as MS progresses, even with the most helpful exercise programme, additional means – usually prescribed drugs – may be necessary to assist the spasticity. You should consult your neurologist or GP about these.

    Swimming

    Swimming is a good form of exercise for everyone, but especially for people with MS, because your body weight is supported by the water. Weakened muscles can operate in this environment and will strengthen from the resistance. In addition, as swimming involves many muscle systems in your body, it can help to increase coordination.
    Your main practical problems may be issues such as where the changing rooms are in relation to the pool, and obtaining assistance to reach, and return from, the pool. There are now more and more swimming pools and leisure centres offering special sessions for people who need special help, and it might be worth trying one of these sessions at first. If such sessions are not available, try lobbying your local leisure centre/swimming pool for one. It may be worth asking whether there are quiet times of the day when the pool will be freer, and assistance is more likely to be available.
    Functional electrical stimulation (FES) can help some people with
    ‘foot drop’. A small box sends electrical stimulation to muscles in the lower leg, so that you can regain useful movement. This is connected to a pressure pad in a shoe that enables the impulse to be triggered when you are walking, improving mobility. (See Appendix 1 for address of the FES Team.)
    One point may prove to be important and that is the temperature of the water. The temperature that many people with MS find comfortable is about 30°C (86°F). Much lower temperatures appear to be too cold, although still tolerable, whereas much higher temperatures, often found in jacuzzis or spa baths, are sometimes associated with the onset of (temporary) MS symptoms. Also, in relation to your swimming activities, if you have troublesome bladder control, it may be worth discussing this with your neurologist or GP beforehand to try and ease your concerns.

    Foot drop and exercise

    ‘Foot drop’ occurs when the muscles of the foot and ankle become weak, caused by poor nerve conduction, and either your ankle may just ‘turn over’ or, more commonly, your toes touch the ground before your heel – in contrast to the normal heel–toe action – and this might lead you to fall. This is quite a common problem in MS. There are two ways of dealing with it. One way is by exercising the relevant muscles as much as possible, through passive exercises if necessary. However, this may not be enough to prevent the problem once it has occurred. A special brace may be helpful, which supports the weakened ankle and allows you to walk again with the normal heel and toe action, if your leg muscles are strong enough to allow this (Figure 8.4). You may need to consider using a wheelchair or scooter, at least occasionally.
    One of your feet ‘turning in’ is another problem that some people with MS have. In this situation the muscles turning the foot out have weakened, and the muscles and tendons on the inside of the foot have become shortened – largely due to disuse. In addition the ankle joint may be more rigid and stiff. Thus it is vital for people with MS to try and prevent such a situation occurring by exercising the muscles controlling the ankle as much as possible. It will be important to seek some help from a physiotherapist when the problem has arisen to ensure that you undertake the correct exercises and, if necessary, have a supporting brace.

    Leg brace

    Figure 8.4 Leg brace.

    Wheelchairs and exercise

    Although it may sound paradoxical, it is almost more important for someone confined to a wheelchair to undertake regular exercise than someone who can walk. You should try and undertake exercises that maintain the movement and flexibility in your joints as much as possible
    – through the ‘range of motion’ and stretching exercises described earlier. As far as possible, try and maintain also your upper body strength – this is particularly important for good posture, which itself will help prevent some of the more problematic aspects of being in a wheelchair for a long time. Exercising your neck muscles will also help you to maintain a good posture. If possible, it is very helpful just to stand for a few minutes each day, with the help of someone else or with an increasing range of equipment now available for this purpose. It is known that bone density tends to decrease (causing ‘osteoporosis’) more quickly if weight is not borne by the legs and feet on a regular basis and low bone density is also one of the contributory factors of fractures. This is another reason why standing should, if possible, be undertaken – even if only for a very short period. As with sitting in a chair, you ought to learn specific exercises to be able to shift your weight on a regular basis, to prevent skin breakdown at the points where your body is in contact with the wheelchair, and ultimately to prevent pressure sores. (See Figure 8.2 for exercises that you can do sitting down.)

    Pressure sores

    As noted earlier, exercise can help prevent pressure sores. They are very dangerous once they arise, and yet they are entirely preventable. Basically, as the name suggests, they arise when the skin begins to break down from too much continuous pressure, from a chair or bed, for example, on key points of your body. Once this pressure has been applied for a long time, blood circulation to the area lessens or ceases, the tissues get starved of oxygen, and the skin and related tissues break down. Such pressure sores are particularly dangerous because, left untreated, they can lead to infection of the underlying bare tissue or to blood infection (‘septicaemia’), which can threaten your life. Most people do not get pressure sores because they move very frequently and thus pressure is never exerted on one point of their body for long enough for a pressure sore to develop.Pressure sore areas

    Figure 8.5 Pressure sore areas.

    Danger areas are the lower back, the shoulder blades, the insides of knees, hips, elbows, ankles, heels, toes, wrists, and even sometimes ears (Figure 8.5). Pressure sores are more likely if you are in a wheelchair, or are sitting or in bed for long periods of time.
    Initially, a pressure sore may just look like an area of reddened skin, or even a small bruise. It can look like a blister or weal, which may break to reveal a small or even a large hole where the skin has been damaged more fundamentally. It is likely to be very painful but, if sensation has been lost, you may not be aware an ulcer is forming so visual checks are also necessary. It is important to act immediately and contact your doctor, for once the damage has occurred it is very unlikely to get better without considerable treatment.
    Preventative therapy, i.e. regular movement every hour or two, is vital, especially for people in wheelchairs or in bed. If you can stand for even a short time, or shift your weight from time to time and from place to place, this is helpful. There are also a number of products that may help:

    • ripple mattresses
    • foam rings
    • gel or air cushions
    • water beds
    • pads
    • specific textures of clothing and bedding, especially sheepskin.

    Sometimes the bedclothes can be lifted off the body by means of a cradle. You should wear nightdresses or pyjamas that chafe as little as possible.
    The usual person to treat pressure sores is a District Nurse who will come in regularly to manage them. The treatment usually involves antibiotic cream or powder in and around the area. The aim is to prevent infection and to restore circulation, by keeping the skin clean and dry. The sore may be left exposed to the air during the day, but dressed with a sterile dressing at night. More serious sores may require substantial hospital treatment.
    There is a great deal of development work currently underway on the management of pressure sores because, not only are they very painful, inconvenient and potentially dangerous for people with MS, but they are also very expensive to treat, at home or in hospital, and often involve very long-term nursing and medical care.