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.
Figure 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.
Figure 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):
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).
Figure 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.
