Articles on Medical Diseases and Conditions

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  • Research

    Research on the causes, possible cures and ways of managing Multiple Sclerosis has increased dramatically in recent years. Much of the information that has advanced our understanding of Multiple Sclerosis  has come from what is called basic research – general knowledge of how the brain and central nervous system work and, more recently, how susceptibility to disease may be transmitted genetically. By research, we mean scientific research predominantly conducted by universities, scientific research centres and pharmaceutical (drug) companies. Results of this work are normally published in scientific journals through a process called ‘peer review’, which means that the work is always subject to critical scrutiny and assessment by other scientists. Through this means, new ideas or theories about MS can be thoroughly evaluated and tested.

  • Other women’s issues and the menopause

    Urinary symptoms

    One of the problems that women with MS face is that they might put almost any symptom they have down to the MS, and concern themselves less about other possibilities. As a general rule, it is important to have any significant symptom you have medically examined. Of particular importance to women is that any urinary symptoms are fully examined, for there is growing evidence that, although many such symptoms are neurological in origin, and are difficult to treat directly, many others are the result of urinary infections, which are, for the most part, treatable. Indeed, if left untreated, such infections can lead to other significant problems.

    Routine tests

    It is important for women with MS not to neglect other routine tests such as cervical smears and mammograms. If you are taking any immuno- suppressive drugs, such as steroids or interferon-based drugs, you should have such tests more regularly. In a suppressed immune system, it is more likely that precancerous changes will occur in the cervix, for example, and early detection is important.

    HRT and the menopause

    There doesn’t appear to be any evidence that menopausal changes make MS worse, but do discuss the possibilities of hormone replacement therapy (HRT) with your doctor.

    The most obvious benefit of HRT is in reducing the possibility of osteoporosis (thinning of the bones) in someone with MS, who may already have mobility problems, and be in danger of falling from time to time. A combination of osteoporosis and increased likelihood of falling might result in fractures that will be difficult to manage. Whether you have HRT or not, you should have a good intake of calcium, both before and after the menopause. A daily intake of at least 1000 mg is recommended before the menopause, and 1500 mg after it. Dairy products are the easiest way to increase calcium intake, although you may obtain calcium from a range of other calcium-fortified products, or calcium supplements.
    Other possible benefits of HRT may include:

    • decreased vaginal dryness;
    • reduced risk for colon cancer and Alzheimer’s disease;
    • possible reduced risk of heart disease;
    • possible benefits in certain forms of incontinence.

    Disadvantages of HRT may include the continuation of periods, although usually these are light, and there is still some uncertainty about whether HRT increases the risk of breast cancer, although recent research has suggested that a slightly elevated risk occurs only after several years of use of HRT, and that the first 4 or 5 years of use are not associated with an elevated risk. In addition you may feel that HRT is yet another drug you are taking on top of others to manage various aspects of your MS.

  • Childbirth

    Miscarriage and relapse

    Women with Multiple Sclerosis run an increased risk of a relapse after a miscarriage as well as after delivery of a baby at the expected time. Miscarriage occurs quite commonly (about a third of all pregnancies miscarry), although many of these miscarriages occur so early in pregnancy that you may not realize what has happened. There is, however, no evidence that a larger number of pregnancies – or a large number of miscarriages – result in any worse outcome as far as MS is concerned.

    Delivery problems

    Some women with MS who have muscular weakness in their legs or lower bodies, or who may have spasms, might need some assistance with childbirth – perhaps an epidural anaesthesia, for example, or the use of forceps or even a caesarean. However, there is little evidence that MS causes major additional changes in the way that babies are delivered compared to those of women without MS.
    The general experience in relation to women with MS is that their pat- tern of delivery is no different from that of other women. The overall advice for women with MS in relation to preparing for the birth is the same for all women. Prenatal classes, run by your local midwives, and often also by the National Childbirth Trust, would be useful both for you and your partner if you have one, so that you can be taken through the stages of labour and how best to manage them. It may also be worth dis- cussing techniques of pain relief with your midwife and the obstetrician.
    There is one other point that you may need to know. If you have been taking steroids over the past few months, such as Prednisone (generic name prednisolone) – and this is one of the drugs that pregnant women have taken safely – then it is possible during the delivery that you will need an extra dose of this drug. This is because during labour the adrenal gland may be ‘overloaded’, if you have taken steroid drugs over the preceding months, and an additional dose, a ‘boost’, is needed. This issue ought to be raised with your midwife, and with the obstetrician before the delivery itself, so that they are aware of the situation.

    Breastfeeding

    If you decide not to breastfeed your baby, you can start taking your drugs again shortly after the delivery of the baby. If you decide to breastfeed, then you do need to seek your doctor’s advice – for drugs may be passed to the baby in breast milk.
    Breastfeeding is generally recognized as giving the baby the best possible food in the first few months. Of course breastfeeding is only a part of an often exhausting experience that all women have in caring for a newborn baby. If you can, arrange for someone else to help you in the first few weeks after the birth, and whilst it is important – if you wish to continue breastfeeding – to undertake all the feeding yourself in the first
    2 or 3 weeks, someone else could help with the particularly exhausting night-time feeds with previously expressed breast milk, or with a relevant formula feed.
    Just to reiterate, it is important to be very careful about drugs you are taking during breastfeeding, for they may be passed to the baby through breast milk. With the newer interferon-based drugs and copolymer (Copaxone), you must seek your doctor’s advice and you may have to consider not breastfeeding your baby, if you take these drugs.

  • Pregnancy

    Do discuss both your plans and any worries that you have with doctors, and other professional staff looking after you. Pregnancy and childbirth is a time for continuing support. You can receive good advice, and possibly information about sympathetic obstetricians, from the local branch of the Multiple Sclerosis Society or other MS support groups.
    In the past there was often very clear and very negative advice given about pregnancy to someone with MS. In general now this view has changed. A useful way to proceed is to discuss with your partner and/or family and close friends, a series of ‘What if ?’ questions, considering, for example, some of the problems that might occur financially or in relation to child care. Through these means you can rehearse some of the ways of managing potential difficulties, in the hope, and in many cases the expectation, that such problems will not occur.
    Relapses tend to be lower in number during pregnancy, and overall most women find their pregnancy is relatively uneventful from an MS point of view.

    Feeling good

    Many women with MS feel really well while pregnant and would like that feeling to continue afterwards! What is almost certainly happening is that some immunosuppression is occurring naturally in your pregnancy, and lowering the levels of Multiple Sclerosis activity. So far it has not been possible to identify any of the specific hormones or proteins produced in pregnancy that produce this ef fect, although one pregnancy hormone has been identified, which suppresses an experimental form of MS in the guinea pig. So there is some basis for optimism in this line of research. However, applying animal-based research to humans has been a notoriously fickle and unpredictable process, so it would be unwise to expect immediate developments as far as people with MS are concerned. On the other hand there is an increased risk of relapse of your MS after delivery and if you should suffer a miscarriage (see below).

    Taking drugs

    As an important general rule you should not take any drug, even an over-the-counter drug, during pregnancy, or indeed when you are considering becoming pregnant, without discussing this first with your doctor. For many drugs used to treat the everyday symptoms of MS, there is substantial information available about the consequences of their use during pregnancy, and many of them are safe to use.
    Those drugs that are now being used to treat the disease itself, rather than any one specific symptom, such as the interferon-based drugs (such as Avonex, Betaferon and Rebif) and Copaxone, are powerful immuno- suppressants, and it is still not clear what effects they will have on an unborn baby. You should stop taking such drugs once you have started trying for a baby, for it will be some time before you know you are pregnant and in the meantime the fertilized egg could be developing. It is a question of balancing your own concerns about the effects of Multiple Sclerosis on you, and the health of your unborn baby. The decision may not be an easy one to make, but most mothers treat the health of their unborn baby as their main concern at this time.

  • Pregnancy, childbirth and the menopause

    Issues concerning pregnancy and childbirth often worry people with MS and their partners, as many will have recently embarked on relationships in which they will be considering the possibility of having children. Bringing up children is also another area that concerns both people with Multiple Sclerosis and those close to them. We also discuss problems older women might encounter.

  • Holidays

    If you plan your holiday carefully, you should have no major problems with travelling. Try and stick to a schedule that is not too demanding and, perhaps just as important, allow yourself time to rest at the other end. You might also consult your doctor when you are planning your journey to see if he or she has helpful advice. By and large most airlines are very good at providing extra help and assistance for people with disabilities, including those in wheelchairs, as long as they are notified well in advance of your requirements.
    There are a range of tips and advice for longer journeys and holiday travel. If you have vision problems and you are travelling by car, you could enlarge any maps or written instructions before your journey begins. You could also use a highlighter pen on the map to mark out your journey or a magnifying glass with a light on to help you see the map.
    In relation to air travel make sure that you give notice on any special requirements you have (such as meals) well in advance. Many airports have motorized ‘buggies’ to transport people with disabilities. Do take advantage of these, and of porters if you can – you do not want to be too tired out before you have even got on the plane! Ask at the check-in (but preferably before) to try and ensure that your seat allows you to get in and out, and to move as freely as you can. If you take your wheel- chair or scooter with you, do make sure that it is properly and securely labelled and, if it has to be disassembled for travel, it might be wise to take the assembly instructions with you in case someone else has to assemble it again.
    If you are travelling overseas take a copy of your passport and any other key documents with you. You might find it helpful, if you are travelling with a companion, to have a change of clothes in each other’s luggage, just in case one of the bags is lost – it has happened! Take a special pillow with you for comfort on an aircraft or elsewhere. You might also want to take a small free-standing mirror with you. If you are in a wheelchair, most mirrors are often hard to get close to. Also a soap on a rope is useful.
    Investigate whether laundry facilities are available at your place of stay – if they are, you can often take fewer clothes with you. Obviously do check in advance whether your hotel, guest house or motel has any specially prepared rooms for people with disabilities, and especially people in wheelchairs.
    There are now a strikingly wide range of support services and organizations for people with MS, almost whatever their disabilities, who wish to take holidays at home or abroad. The key, as we have noted is to plan well in advance, and undertake thorough research about where, and particularly how, you wish to go.
    Information on holidays for those with any form of disability can be obtained from a number of sources and there are a rapidly increasing number of sites on the internet giving wide-ranging information. Perhaps a feature of these and other sites is what many people might think of as increasingly adventurous holidays for people with disabilities from skiing to sailing. For sailing the Jubilee Sailing Trust has for many years been offering active sailing holidays for those with disabilities as well as able-bodied people on its two tall ships; it also has a very comprehensive list of the websites of other disability organizations.
    There are an increasing number of specialist services who can help people with disabilities including, for example, Assistance Travel and Accessible Travel. Other services are increasingly being set up to assist people, not just with MS, who may require special assistance or support in arranging their holidays.

    Taking medicines abroad

    You should check that you have an appropriate supply of any drugs you are taking whilst you are abroad, for it may not be easy to obtain additional supplies. Sometimes it can be difficult to find a doctor with the necessary expertise, and drug availability and drug licensing conditions are often different. Some drugs may not be readily available – even on prescription in some countries – and certain drugs may only be prescribable by particular kinds of doctor (hospital specialists, for example). Some medicines really need to be kept cool so you may need a
    ‘cool bag’ to ensure that they are not spoilt.
    It may help to have a letter from your doctor explaining what drugs you are on and what they are for, to avoid possible customs problems, or if you need further supplies in the country to which you are travelling. Customs may well be very interested in your supply of needles if you self- inject, so a letter could get you out of trouble! If you feel you are a bit forgetful, or even if you are not, it is a good idea to divide your supplies into two, placing them in separate bags or suitcases just in case yours gets lost or mislaid. If you wear glasses, take your optician’s prescription with you in case you lose them. For general information, the Department of Health produces a leaflet called the Traveller’s Guide to Health (see Appendix 2). It is also worth repeating that you should have adequate health insurance, and be sure to list MS among what insurance companies call ‘pre-existing medical conditions’.

    Financial help

    There are some organizations that you can apply to if you need financial help for a holiday, although it is important to say that help will be based on your circumstances. These include:

    • the Holiday Care Service
    • the MS Society, both locally and nationally (although funds are limited)
    • some local authorities, and
    • local charities.

  • Day trips out

    Managers of theatres, cinemas or concert halls have generally been slow to understand and provide for the needs of people with disabilities. However, the situation is changing rapidly and people are more aware of the importance of disabled customers; negative publicity about access and other problems has helped push this along. Whilst many venues are more prepared for people with disabilities, it is a still a good idea to contact the management before you go, to explain your situation and what you will need. Some seats, or positions for wheelchairs, may be better than others, and notifying the venue in advance should ensure that your needs are better catered for. You may also find that certain performances (for example, matin?es) are less crowded than others.
    Provision for people with disabilities at cinemas has improved enormously in the last few years. There are still some problems for disabled cinema-goers, however, owing to the number of older 1930’s cinemas which have been converted into several screens. The ‘main’ screen is often in the circle of the old cinema and accessed only by several steps. However, a good number of ground-floor screens have wheelchair spaces with flat access, or via a few steps, possibly through a side exit.
    An increasing number of cinemas are using automatic computerized booking systems via the phone, where you can pay for your ticket by credit card and simply collect it on arrival. Some have an enquiry method for disabled patrons that puts you through to the management to make necessary arrangements. The larger cinemas have facilities available such as seats that provide additional leg room. To find out about the facilities for disabled patrons, contact the cinema showing your choice of film direct and ask for details.
    As far as theatres go, many of the larger venues now have adapted toilets and facilities. In some theatres, it may be necessary for the occupant of a wheelchair to be able to transfer into an aisle seat, with the wheelchair stowed elsewhere. In other theatres, seats can be removed with advance notice to make way for a wheelchair, while in others there are specific seat-less areas where a wheelchair user will be asked to sit. If you need assistance or a specific seat as an ambulant or visually impaired disabled person, or indeed for any disability, then do ask in advance. Usually the easiest access to seats will be on the same level as any wheelchair spaces, and/or you could ask for a seat at the end of a row if this is helpful.
    For other popular venues such as museums, galleries or arts centres, if you are unsure about access and facilities, contact the place concerned and ask in advance of your visit. Both access and the presentation of exhibits have been improved to suit disabled visitors, and facilities, such as catering and the provision of toilets, have been upgraded as well. Some major museums and galleries are large, making it difficult to walk or wheel all the way round in a single visit. Like most visitors, you may prefer to look at a museum/gallery map before or when you arrive, so you can select some of the things of greatest interest and plan the easiest route round. Some places will have on-site wheelchairs to borrow, but check and book these in advance if they are going to be a necessity. Ask about any entrance charges – most are free.
    Some arts centres are housed in modern, purpose-built buildings; others are based in old buildings such as Victorian town halls and churches that have been adapted for the purpose. Accessibility varies, but efforts have been made in recent years to cater better for disabled visitors. Many arts venues have multiple functions, and may include a cinema, theatre, concert hall, and an exhibition area. If you are in London, you may find it practical as well as interesting to visit a site or complex that has a number of such accessible possibilities within easy reach of each other, such as the South Bank or the Barbican centre.
    If you are going to a theatre, cinema or other venue in London, you could contact the London arts access information service, Artsline. As well as providing a telephone information line, Artsline has available an access guide to theatres in London called Open Door and a booklet entitled Disabled Access Guide to London’s West End Theatres.
    You should also check to see whether there are any services giving similar information in your area, from DIAL. Relevant help may be available from your local authority information service. Some past or present experiences may provoke you into joining one of the many local groups campaigning for better local access to public buildings and places.
    If you like visiting stately homes and gardens, the National Trust
    Handbook gives information about the suitability of its properties for people in wheelchairs, and there is a separate guide from them for properties that are particularly suitable. All give free admission to someone escorting a person in a wheelchair, and some have motorized buggies for those with mobility problems.
    Three other books give details of wheelchair access:

    • Places that care by Michael Yarrow
    • The National Gardens Scheme handbook, and
    • Historic houses, castles and gardens

    which list over 1300 properties of all types and gives information about access. Other possible sources of information are RADAR (the Royal Association for Disability and Rehabilitation), and local disability groups, or your local MS Society may have information about access issues to places near to you.

  • General information on leisure activities and hobbies

    In many local areas there is a wide variety of sources of information about the availability of, and support for, leisure and recreational activities. Many general local facilities, such as swimming pools, sports centres, adult education colleges, cinemas, theatres and so on, have facilities for disabled people, and improvements to access and facilities are developing all the time. There is often an active local group dedicated to your particular interest. The service concerned or the centre in which the activity takes place should be able to give you the details – just give them a ring or visit them and tell them exactly what you require. Your local disability group, local social services or local library should also be able to provide you with information.
    Do not be put of f if your own particular interests appear not to be provided for at local day centres or at adult education evening classes. This may merely be the result of a perceived lack of demand, and almost any subject can be covered by an evening class when that need is demonstrated. Push for what you are interested in, use the relevant national contact organization to give you back-up and information if necessary, and get other local people involved.
    Local authorities are empowered under the Chronically Sick & Disabled Persons Act 1970 to help disabled people to enjoy a wide range of recreational activities. For instance, they may help people obtain a radio, television or similar leisure facility, and go on holiday. They may also provide lectures, games, outings and many other leisure pursuits, including social and youth clubs, and may help with travel to and from home. These recreational activities are covered under Section 2 of the
    1970 Act. Contact your social service department to ask for an assessment of your need for any such activity and to see if you fit the local eligibility criteria.
    Some local authorities also operate a travelling library service, which will call regularly at the homes of those who are unable to visit libraries. The arrangements for all local authority services dif fer considerably from area to area but it is certainly worth making enquiries via your social services.
    The PLANET (Play Leisure Advice Network) is a national information resource on all aspects of play and leisure for disabled people, and will be able to locate the headquarters of organizations specific to your leisure and hobby interests. These groups in their turn will be able to give you local contact details if they have branches or other contacts (see Appendix 1 for contact details).
    In addition to information that you can obtain through the MS Society, you may well find other groups offer help or support with a good knowledge of any disabilities that you might have, such as PHAB clubs which are for anyone with and without a disability. There are numerous PHAB clubs around the UK, of fering varied programmes of social activities (see Appendix 1 for contact details).

    Sport

    You should try keep as active as possible – especially if your mobility is affected. It is even more important that you try and exercise regularly to try and keep your muscles and joints working as well as you can. A very active sport may not be possible for all people with the disease, but activities like swimming are possible for many. People also enjoy tennis, squash, badminton, bowls, walking and snooker.
    The key thing is to make a judgement about how you actually feel (rather than what you might fear or worry about!) during and after an activity or sport. Dif ferent people with MS seem to have somewhat different reactions to activity; for example, some have a problem after getting very hot. If you do have concerns about particular sports, do consult your doctor and/or physiotherapist.
    There are specialist facilities for an increasing number of sports and organizations offering advice and support. There are many organizations specifically assisting disabled people’s interests in sport and leisure. Disability Sport England develops and coordinates sporting opportunities for disabled people. It has details of organizations connected to specific sports, for example, the British Association of Cricketers with Disabilities and the National Co-ordinating Committee for Swimming For People with Disabilities. In Wales there is also the Federation of Sports Associations for the Disabled in Wales, in Northern Ireland the British Sports Association for the Disabled – Northern Ireland; and in Scotland the Scottish Sports Association for People with a Disability (SSAD).
    You may find that you need some additional or specialist equipment to enable you to gain most from your chosen sport. Apart from items commonly used in the chosen sport and easily commercially available, there is a range of sport and leisure equipment produced by individuals, clubs and companies to overcome any particular difficulties you may face. If you need specialized equipment, it is likely that the organization connected to the sport or hobby (see above) will be able to give you practical advice based on personal experience. If the required item is not commercially available you may find REMAP of help. REMAP is a voluntary organization with a network of panels specializing in adapting or designing and making one-of f items of equipment for disabled individuals.

    Gardening

    There are many ways you can continue gardening, which can give so much pleasure, and many other people without MS find that they have to adapt the kind of gardening they do, either when their mobility or flexibility changes, or when they get older. Raised flower or vegetable beds help those with mobility problems, or those who are in wheelchairs, to continue gardening. Container-based gardening inside or outside is another possibility. In addition there are special aids and equipment.
    The principles of gardening are obviously just the same whether someone has MS or not, but the tools and methods of working may need consideration. It is usually unnecessary to buy a lot of new tools – first consider what tasks you need to carry out, assess your usage of the tools you already have, and consider any adaptations that could be made to make them work to your benefit (such as adding longer handles). With careful planning, the work required in the garden can be reduced.
    There are many books on plants that require less maintenance, on making gardening easier, and on accessible garden design. There are several books you can use to help you.
    Another organization that promotes horticulture for people with disabilities is Horticulture for All. The Gardens for Disabled Trust raises money to help those who are disabled take an active interest in gardening, and gives advice to those who wish to adapt their gardens.

  • Leisure, sport and holidays

    Although Multiple Sclerosis itself may cause some problems from time to time, and interrupt your life more than you might like, it is important to keep your leisure activities going as much as you can, not least because many of these will have given you a great deal of enjoyment in the past. They will also enable you to keep in touch with old friends, and make new ones. Indeed, leisure, sport and holidays may also enable you to place MS far more in perspective.
    Compared to a few years ago, there are a rapidly increasing number of opportunities for leisure, sport and holidays for people with MS with a range of disabilities.

  • Respite and residential care

    When someone with Multiple Sclerosis is significantly disabled in terms of the everyday tasks that they can perform, it is not always possible for them to remain in a home setting continuously – even with help from family, friends and the health and social services. Other options may have to be considered; these might include a temporary and occasional break through being cared for elsewhere, to longer term and more permanent care outside the home. People have very dif ferent views about these situations, and how to manage them. They are not often easy to discuss, let alone act upon. This is not least because such options almost always involve the separation of the person with MS, from their partner or other family members, and this adds to the anxieties and concerns of all parties to the discussions.

    Respite care

    Respite care is often thought of as a need for a break from partners, not just from their care. This need not be the case at all, and a break is needed purely from the tasks of actual caring. However, it is expensive, and practically more complicated to provide respite care for two people rather than one. There are therefore currently very few places for couples in respite or short-term residential care when one partner has MS, and you will be fortunate if you find such a facility. Given the importance of maintaining a good relationship with your partner, you could lobby your local authority about this problem and/or discuss it with the welfare officer of the local branch of the MS Society.

    Residential care

    There are several benefits that may well be affected if you go into permanent residential care outside your home. These are Disability Living Allowance, Attendance Allowance, Income Support and Income Job-Seekers Allowance, Housing Benefit, Council Tax Benefit, together with one or two benefits targeted on special groups of people. The rules governing exactly how these benefits are affected are different in each case, so you should seek advice, initially from Citizens Advice, before you make any decision about going into residential care.

    Costs
    Unless you negotiate independently for residential care, and then pay yourself, under the NHS and Community Care Act 1990 local authorities are empowered to charge you for the cost of providing such care, whether they provide it themselves or use an independent home. The local authority fixes a standard rate for the cost of its own accommodation, or bases it on what it is charged in providing a place in an independent home. If you cannot pay the appropriate rate then the local authority will assess your ability to pay and, on the basis of the criteria, decide what to charge. It is important to note that the assessment would be of your partner’s financial status alone, not of your joint status, if you have a partner. Although a local authority can approach a spouse and ask for a
    ‘reasonable’ contribution to the support of the resident, there is no formal definition as to what is reasonable – and an unmarried partner has no obligation in this respect.
    The criteria by which liability to pay some or all of the costs of residential care are assessed are rather complex. They will consist of investigating your financial status, in terms of both capital and income, and then making certain kinds of allowances for personal expenses. It is very important that, if you are considering residential care, you should seek advice about the costs for which you would be liable well before you enter into any agreement. Citizens Advice should be able to help you in this respect, and you may well have a local disability information service which can also assist you.