Articles on Medical Diseases and Conditions

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  • High Blood Pressure:Exercise and Weight Loss

    If you need to lose weight, you and your doctor or registered nutrition- ist can design a healthy diet plan, which will involve determining a level of calorie intake that is appropriate for you—but one that contains at least 1,200 calories per day. Your exercise plan should ensure that you burn more calories than you consume. The healthiest and most effective way to lose weight is to limit the energy consumed in food, and then increase the amount of energy burned off by exercise, to achieve a slow but steady weight loss. Most experts recommend losing 1 to 2 pounds per week.
    To lose 1 pound in 1 week, you need to burn about 3,500 excess calories; that is, you need to burn about 500 calories more per day than you consume. Dieters are plagued by the plateau phenomenon. When you achieve about a 10 percent weight loss, your body compensates by slowing your metabolism. It is important to keep exercising and not get discouraged during this time.

    Exercise as a Part of Every Day

    Your plans to exercise more are much more likely to succeed if you think of exercise as a pleasure rather than an obligation. It is important to choose activities that you enjoy and then ?nd ways to make them eas- ier to do often. Here are some tips to keep you going:
    • Develop a variety of physical activities that you can choose from so that you don’t get bored. In addition to a walking routine, alter- nate sessions of some goal-oriented activity like gardening or a more intensive activity like bicycling to keep you interested.
    • Find a friend or family member to exercise with you. You’ll both enjoy the sociability and both get the physical benefits. Wear comfortable, appropriate clothing when you work out, including shoes that ?t properly and suit your activity.
    • Listen to music or watch television to keep yourself entertained.
    • Avoid overdoing it. You don’t need to be an athlete, and you don’t need to exhaust yourself. Start with low-level or moderate exercise, then gradually increase the intensity and the time you spend, until you are up to a half hour or a full hour per day, most days.
    • Look for ways to make your daily activities more physical. Do your own housework or yard work instead of hiring someone. Walk to the store instead of driving. Choose the long, hilly route instead of the shortcut.
    You can also get more active in small ways that may not increase your heart rate but will burn up energy throughout the day. Instead of look- ing for ways to save effort, be imaginative about making yourself more active, whether you are at home, at the of?ce, or on vacation. Here are a few tips to get you started, but you can think of dozens more:
    • Stop using the TV remote. And if you want a drink while you’re watching TV, don’t ask someone else to get it for you—get up and walk to the kitchen.
    • Stand up and walk around while you talk on the phone. If you are waiting at a train station or airport, walk around instead of sitting.
    • In a parking lot, choose a space farther away from the store instead of the one closest. Or park several blocks from your destination and make a round trip to and from your errand.
    • Take every opportunity to climb stairs, at home or in public. Take the stairs instead of an elevator or an escalator.
    • Participate in charity events that require you to walk or play a sport.
    • When you’re traveling, take advantage of a hotel swimming pool or exercise room. Also, schedule a walking tour of a new city, rather than driving around.
    • Consider buying exercise equipment like a stationary bicycle and use it while you listen to music or books on tape or watch TV.
    • Make sure you are getting exercise during recreational time— walk instead of using a golf cart, rent a rowboat or a canoe instead of a motorboat, or play singles tennis instead of doubles.
    • Purchase a pedometer, and walk with a goal of 10,000 steps a day.
    Every 2,000 steps equal about a mile.

    Exercising if You Are Older or Disabled

    If vigorous activities are not an option for you because of advanced age or physical disabilities, some daily exercise will still bring health bene- ?ts. If you can walk, garden, or swim, gradually increase to longer ses- sions to get more bene?t without overdoing it. Some sports like table tennis, croquet, or shuf?eboard are excellent ways to get moving. If you are in a wheelchair, you can spend 30 to 40 minutes a day doing arm exercises or actively using the chair to get some good exercise. If possi- ble, join a class that offers a modi?ed exercise plan that suits your abil- ity. Such classes may be available through a senior citizen center, a retirement community, a hospital, or a YMCA.

    Where Do I Start?

    If you are inactive, any level of activity is a start in the right direction. A basic walking plan that increases your level of exercise gradually is an excellent beginning (see page 81). The key is to start slowly and build up; the goal is not to start a program quickly that you will need to stop; it is to develop a lifetime habit of regular exercise. The benefits of being more active far outweigh any risks for most people. Talk to your doctor before starting to exercise more if:
    • You have ever had any kind of a heart problem, especially a heart attack.
    • You have a family history of premature coronary artery disease.

    • You have diabetes.
    • You have problems with your bones or joints, such as osteoporosis or arthritis.
    • You have high blood pressure and are not on medication.
    • You are very overweight.
    • You have high levels of cholesterol in your blood.
    • You smoke.
    • You are over 60 and you are not accus- tomed to any regular exercise.


  • How Much Cardiovascular Exercise Do You Need?

    To promote cardiovascular benefit for most people, about 30 minutes a day of moderate to vigorous aerobic activity most days of the week is a good start; the latest recommendations, however, suggest that you work your way up to 1 hour of exercise per day if you are overweight. You can accumulate the total in 10- or 15- minute sessions if you want to, but check with your doctor if you are under treat- ment for heart disease. The main point is to make exercise a regular part of your lifestyle. Try to burn about 1,000 to 2,000 calories per week (see page 81). To get a sense of an effective exercise pattern, you can think in terms of the so-called FIT formula: frequency (days per week); inten- sity (how hard—moderate or vigorous) or percentage of heart rate; and time (amount of time in each session or day). You can adjust these elements to suit your schedule, just as long as you expend enough energy to accomplish your ?tness goals. For instance, you can make a point of taking a longer walk three times a week and a shorter jog two times a week.
    Frequency of exercise sessions and time spent in each session are easy to understand, even if it seems hard to ?nd the time to exercise.
    If you cannot exercise every day, try to plan your sessions on noncon- secutive days of the week. If you are breaking up your time into shorter sessions, don’t forget to warm up and cool down brie?y for each session. If your activity is more vigorous, the cool-downs and warm-ups are especially important.
    Intensity can be as simple as identifying moderate-level activities that ?t most naturally into your lifestyle, and then consciously sticking with them. A moderate activity raises your heart rate to at least 50 percent of its maximum (see box on page 78). A more practical de?nition of cardiovascular exercise might be any activity that raises your heartbeat to a level where you can still talk, but you start to sweat a little and breathe more heavily. If you have heart disease and your exercise is being planned with medical supervision, your peak heart rate achieved during exercise stress testing is a safe goal. But ask your doctor about this.
    Examples of moderately active pastimes are:
    • Brisk walking (3 to 4 mph)
    • Gardening or yard work
    • Active housework, such as vacuuming
    • Swimming
    • Tennis
    • Golf, if you don’t use a cart
    • Dancing
    More physically demanding forms of exercise, done regularly, raise your heart rate to 50 to 85 percent of the maximum and are especially bene?cial:
    • Aerobics classes
    • Jogging or running
    • Bicycling
    • Games such as racquetball or basketball
    • Cross-country skiing
    • Handball

  • High Blood Pressure:Exercise and Physical Activity

    Americans know exercise is good for them. A proliferation of health clubs and ?tness centers, joggers in every park and walkers in every shopping mall, and constantly changing fashion trends in exercise gear are all evidence that we’ve gotten the message. Ironically, at the same time, advances in technology and labor-saving devices (along with other factors) have made us more sedentary and more overweight.
    A sedentary lifestyle is hard on your entire body—muscles, bones, heart, lungs, arteries—because your body is a physical system that is built to move. In terms of cardiovascular bene?t, exercise ?rst strengthens your heart muscle and makes it pump blood more ef?ciently. In your bloodstream, it reduces harmful triglycerides, increases good HDL cho- lesterol, and improves the proportion of HDL to the bad LDL choles- terol. This effect is so important that being physically inactive is a major risk factor—just like smoking, high blood pressure, or high cholesterol levels—for developing coronary artery disease. It doubles your chances of having a heart attack.
    At the same time, exercise tends to lower your blood pressure and reduce elevated blood sugar levels if you have diabetes, both of which in turn reduce your risk of heart disease. Of course, exercise also helps you control your weight and reduce obesity. So when you exercise, you are working on your high blood cholesterol, high blood pressure, or diabetes. You are less likely to develop these problems if you are active. Even a moderate increase in physical activity—30 minutes or more of brisk walking most days of the week—is enough to have a signi?cant positive effect on your heart and blood vessels. Exercise can bene?t you, no matter how old you are or what your current ?tness level is.
    Exercise also helps you modify the effects of some other factors that are harmful to heart health. It reduces stress, anxiety, and depres- sion and their toll on your body. If you smoke, being active can make it easier to cut down or quit. Exercise never takes the place of other lifestyle changes you need to make to control as many of your risk fac- tors as you can (quitting smoking, eating more healthfully, and so on). However, a major research study in JAMA, the Journal of the American Medical Association, showed that overweight women who exercised had a longer life expectancy than overweight women who were not physically active.

  • Nicotine Replacement Products

    Nicotine replacement products, including patches, gum, nasal sprays, and inhalers, can be a valuable part of your overall strategy to stop smoking. They do not work perfectly, but they are a valuable aid in reducing the symptoms of nicotine withdrawal while you learn to adjust to living without cigarettes. These products are closely regulated by the U.S. Food and Drug Administration, and they are safe and effective for most people when used as directed (see the warning on page 73). They work by delivering a safer form of nicotine (the addictive component of cigarette smoke) without any of the cancer-causing and otherwise harmful substances. They may also desensitize nicotine receptors in your brain to reduce the satisfaction from smoking.
    Used properly, nicotine replacement products at least double your chances of success, and they are especially successful when used with other smoking cessation support methods, like telephone counseling or a for- malized program. You still have to change your behavior in order to kick your dependence on nicotine, but the drugs substitute for a cigarette in the meantime. They are available in several forms and can be used individually or in combination. Always talk to your doctor or other health-care provider about how to use these products safely and for maximum effect. If you experience unpleasant side effects, report them to your doctor.

    Patches

    If you choose to use nicotine patches, you wear a patch every day for
    6 to 8 weeks. The patches are easy to use; you can put one on under your clothes and leave it there all day without any other effort on your part. The patch delivers a low dose of nicotine for 16 to 24 hours, starting
    4 to 6 hours after you put the patch on. The patches are available in different doses so that you can taper off gradually. The most annoying side effect is a rash on the patch application site in some people. Other side effects include dizziness, nausea, and increased blood pressure. If you use a patch and are scheduled for an MRI (magnetic resonance imaging) procedure, tell your doctor or technician about the patch. Remove the patch at home the morning of the test, unless instructed otherwise, to prevent burns (the radiofrequency waves used in MRIs heat the patch to a dangerous degree). Do not smoke while wearing a patch; this is dangerous.

    Gum

    Nicotine gum delivers nicotine through the mucous membranes in your mouth. It acts on your system in 20 to 30 minutes. Starting on your quit date, you will chew 10 or 15 pieces of the gum each day for about 3 months. You will have to

    WARNING!
    Nicotine Replacement and
    Heart Disease
    If you have certain types of heart problems such as irregular heartbeat or chest pain, nicotine replacement drugs may not be right for you. Although these products are safe for most people with heart disease, your doctor will evaluate your risk. Most of the products are over-the-counter drugs; don’t start using them without checking with your doctor first.

    learn the “chew-and-park” system in order for it to be effective: you chew the gum slowly until you get a distinctive taste or tingle in your mouth, and then “park” it between your gum and your cheek for a full
    30 to 60 seconds. You repeat this chew-and-park cycle, without drink- ing any beverages, for about half an hour for each piece of gum. Some people get a sore jaw, hiccups, or nausea. These effects are usually mild.

    Nasal Sprays

    A nasal spray is a fast-acting nicotine delivery system. Starting on your quit date, you use the spray one or two times an hour, and if you get an urge to smoke, up to no more than ?ve times an hour. You generally continue using the spray for about 3 months, tapering off gradually. Some people experience nose and throat irritations, which usually disappear after the ?rst week or so of use.

    Inhalers

    A nicotine inhaler, available by prescription, is a plastic cylinder with a nicotine capsule inside. You place the device in your mouth and suck in nicotine vapor that is absorbed into the mucous membranes in your mouth. Some people like the inhaler because using it mimics some aspects of puf?ng on a cigarette. You need to puff on the device four or ?ve times a minute for as long as 20 minutes to deliver an effective dose of nicotine. You will use the device 6 to 16 times a day for about 3 months, and then taper off for about another 3 months. Some people get slight mouth or throat irritations.

    Lozenges

    The lozenge is a promising form of nicotine replacement. It is quick- acting and easy to use, because you just let it dissolve in your mouth without biting or chewing. You can use it similarly to nicotine gum.
    You may use a combination of a slow-release product like the patch and one of the quick-release products like the gum, sprays, or inhalers to help you through the nicotine withdrawal process. There is no one product or combination of products that has proven to be more effective for long-term success. Talk to your doctor about how to manage your smoking cessation medications and how to bolster their effectiveness with counseling and support.

    Drugs

    A drug called bupropion hydrochloride, which contains no nicotine, is approved by the Food and Drug Administration for smoking cessation. It is a form of antidepressant that increases the level of a substance called dopamine in your brain, just as nicotine does. Bupropion may be appropriate for any smoker trying to quit, but it may be especially attractive to people who have tried nicotine replacement without success or who do not wish to use nicotine in any form. It may also help lessen weight gain after smoking cessation. If you use bupropion, you start about a week before your of?cial quit date and continue for 2 to 3 months. Side effects in some people include dry mouth, sleep dif?culties, and nausea, which tend to disappear over time. The drug may not be safe for people who have or have had a seizure disorder, brain injury, or eating disorders. You will need to thoroughly discuss your medical history before taking this drug (or any other); for safety’s sake do not take bupropion prescribed for someone else.
    Varenicline, a relatively new drug, works to block the action of nico- tine in the body by blocking receptor sites on cell membranes. In a major research study, people who took varenicline were much more likely to give up smoking in a 12-week period than those who took a placebo (sugar pill) or bupropion. People who took varenicline in the study reported a reduced craving for nicotine and fewer other with- drawal symptoms than those taking a placebo. However, side effects of varenicline include nausea, headache, and insomnia.

  • How to Kick the Smoking Habit

    Making a decision to quit smoking may be the smartest thing you ever do, but it is the beginning of a dif?cult process. You will ?nd reams of materials to help you quit, backed by extensive scienti?c knowledge about how nicotine works in your body, why it’s so hard to stop smok- ing, and what it takes to improve your chances of kicking the habit for good. But it’s still up to you to do the work. Keeping at it even after sev- eral relapses is part of the challenge. The effects of nicotine addiction in your brain positively reinforce smoking (making you feel relaxed, less stressed, and more alert), and negatively reinforce not quitting smoking (by reversing all those positive sensations).

    Making the decision to quit is the ?rst step, and your doctor can help. Take some time at your next appointment to speci?cally discuss your smoking habits and what you may need to make quitting easier. Your doctor can counsel you as an individual, provide you with nicotine replacement therapy or other medication if you wish, and offer effective ways to deal with nicotine cravings and relapses.

    Preparing to quit is the second phase. You will need the support of family and friends. Identify the situations that tempt you to smoke (like drinking alcohol), and ?gure out ways to avoid them or handle them. Make plans to incorporate exercise as a means of helping you quit; you will have to address concerns like possible weight gain. You may wish to enroll in a structured smoking cessation program or consider working with a trained smoking cessation counselor. Ask your doctor to recom- mend one in your area. Also ask about smoking hotlines that provide telephone counseling to help you quit and resist the urge to relapse. Many states and large health-care plans offer these services, which are an effective way to give you the ongoing support you need to make this major change.

    Once you have resolved to quit, you and your doctor can probably agree on a “quit date.” Although some people try to taper off gradually, it’s best to stop smoking altogether by going cold turkey on your quit date. If you are using nicotine replacement products or another drug, that treatment will begin on or maybe before your quit date.

    Stop Smoking: It’s Worth It!

    If you are a smoker, you’ve heard plenty about the damage you are doing to your body. If you have already had a heart attack or you have sev- eral other risk factors for heart disease, you are under even more pressure to quit. Among all the negative messages, here are a few encouraging words about the rewards of quitting smoking:

    • One year after quitting, your risk of devel- oping heart disease as a result of your smoking is cut in half.

    • This reduction also applies to your risk of stroke: in 5 to 15 years, your stroke risk will be that of a nonsmoker.

    • You’ll live longer. Quitting before age 40 will add an average of 3 to 5 years to your life expectancy. Quitting at age 65 or more adds a year.

    • If you’re trying to quit, you’re in good com- pany. Four out of five smokers say they want to quit, and many thousands of peo- ple succeed every year and stay off tobacco for a year or more.
    • When you stop smoking, your family— especially your partner and/or your children—and your friends will be healthier as well as you, because they won’t be exposed to secondhand smoke.
    • You will save money if you quit. Assume you smoke a pack a day at an average cost of $4. That totals up to about $1,500 a year or about $60,000 over a period of 40 years. Certainly you could use that extra money for your children’s education, your retirement, health care, or other major expenses.

  • Quitting Smoking

    The reasons to quit smoking are legion. In terms of your cardiovas- cular health, quitting smoking is a major way you can take control
    of your risk of coronary artery disease and other heart and blood vessel diseases. Brie?y, these are the ways in which tobacco smoke endangers your cardiovascular system:
    • Atherosclerosis. Smoking damages the lining of the arteries that supply your heart, brain, and the rest of your body with blood. The roughened, damaged walls are more susceptible to the formation of plaque. As the plaque forms, it restricts the ?ow of blood, a process called atherosclerosis. If your coronary arteries are affected, it dra- matically increases your chances of a heart attack. If the arteries to your brain are blocked, you may have a stroke. Atherosclerosis is also a risk factor for developing peripheral artery disease, which affects the arteries to your arms and legs. In combination with other factors (high blood pressure, high cholesterol), it is even more dangerous (see page 71). Smoking even one cigarette a day can harm the endothelium, or inner lining of your blood vessels.
    • Blood clots. Smoking causes your blood to clot more easily.
    Smoking encourages the formation of blood clots by causing platelets to stick together, which is often part of the cascade of events leading to a heart attack and stroke. A blood clot can block an artery and lead to heart attack, stroke, or peripheral artery disease. Some scientists think the blood-clotting effect of smoking is even more important than its role in inducing atherosclerosis.
    • High cholesterol. Tobacco smoke decreases HDL cholesterol, or good cholesterol.
    • High blood pressure. Although smoking does not directly cause high blood pressure, it temporarily constricts the diameter of the blood vessels to your heart.
    • Constriction of arteries. Apart from the blockages within arter- ies caused by atherosclerosis, smoking causes your arteries to con- strict, reducing blood ?ow.
    • Less oxygen in your blood. The nicotine and carbon monoxide in smoke get into your blood and reduce the amount of oxygen it can carry. This effect causes your heart to beat faster in order to try to keep the oxygen supply adequate.
    • Family health. A recent report by the Surgeon General con- ?rmed that secondhand smoke in any amount carries health risks to those who live with smokers. The report summarized major research on how secondhand smoke can cause cancer, respiratory problems, and cardiovascular disease. To maintain or improve the health of your partner, children, or other people you live with, stop smoking now.
    These harmful effects all interact to harm your heart and blood vessels. In addition, of course, smoking damages your lungs and increases your risk of developing cancers of the lung, throat, stomach, and bladder, and several other cancers.

  • Finances: Insurance

    Telling your insurance company

    In the case of health insurance, life assurance or endowment policies associated with a mortgage, you must tell the company that you have MS. Such information may also be required for car insurance purposes in order to ensure that any future claim you make will not be denied, on the grounds that you had not told the company about MS. As you will probably be aware, insurance application forms generally have a ‘catch- all’ request that you provide ‘any information that you feel may be relevant’, or a similar wording. What this means is that, if you have failed to provide information that the insurance company – not just yourself – feels is relevant to a claim that you may make at a later date, then the claim could be invalidated and it will not be met. In this case the burden is on you, as the insured or the applicant, to disclose information relevant to any future claim, and ensure that the full facts are given when the insurance is first taken out.
    For existing policies, you are obliged to give all details of any changes in your circumstances, whenever your insurance is renewed. However, so long as the changes in circumstances (e.g. a diagnosis of MS) occurred after you took out the policy, there should – in principle – be no substantial change in the terms of your insurance, although the company may make enquiries as to whether in fact you did know about the Multiple Sclerosis when taking out that insurance.
    Almost all health insurance policies carry exclusions for ‘pre-existing conditions’ which is taken to mean any condition of which there was significant evidence before insurance commenced. In the case of a condition such as MS, this would include any tests or examinations that you have had for MS, including all those that you underwent before diagnosis. It is wise to be as accurate and as detailed as possible to give as few grounds as you can for exclusion at a later date. It is worth noting that few insurance companies will refuse to insure you, although most will charge higher premiums when there is a reasonable cause to expect a higher risk of claims.
    Do be careful to read the terms of any attractive policy that guarantees acceptance and has fixed premiums. The maximum payout and range of exclusions may seriously limit the value of the cover, and a
    ‘no questions asked, no medicals’ policy can still exclude claims where the insured failed to provide information when the cover was taken out.

    New policies and renewals

    Although insurance companies can, and sometimes do refuse to insure people with conditions like MS, their usual response is to load the premiums according to the risks they estimate of you making a claim. Although these risks are calculated (or should be) on the basis of what are called ‘actuarial tables’, which provide information on how long people of certain ages, genders, or with certain conditions live, or are likely at any rate not to make a claim, sometimes insurance companies may load premiums even further if they do not want a particular kind of business. You may find quite big differences between insurance companies in the way they respond to information about MS. More recently there has developed what might be described as a ‘niche’ insurance market which is beginning to specialize in people with disabilities and certain kinds of medical condition; you might find this more supportive. There are also now life policies, particularly for older people over 50, that guarantee acceptance, and pay out fixed sums after
    2 years without a medical examination or other questions needed. These may seem like a good idea, and indeed, they can provide additional money for your family if you die. However, generally, the benefits are fixed amounts of money so that, if you do live a long time, you find yourself paying more in premiums than would be returned in benefits if you die.
    On health – as opposed to life – insurance you may find some difficulty getting a new policy, or it may contain key exclusions, related to some of the more common medical complications of MS. A company may also be concerned about another issue, which is whether you will be able to continue to pay the premiums, if they are substantial, and they feel that there is a risk that you may not be able to continue in employment. This seems to be very unfair, but insurance companies are essentially commercial concerns, and thus their bottom line is the balance between premium income and future claims.
    The moral is that in all cases you need to seek impartial advice, to shop around, and to consider very carefully any conditions or exclusions to policies – in short you must read the small print!

    Mortgages

    Mortgage lenders take many factors into account, including your savings, your income and the security of your employment, and of course how much you may wish to borrow. However, the key factor will be the company’s estimation of how likely you will be able to continue paying for your mortgage until its term is complete. In this respect, different companies may take a different view of the future, partly depending on whether they feel you will be able to keep in employment for the term of the mortgage. Some may take a more pessimistic view than others of the progress and effects of your MS, so it is important that you shop around, as with other major financial transactions.

  • 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.

  • Finances

    This chapter deals with some very complicated issues. This is not only because people’s own circumstances are all different, but because the rules and regulations governing eligibility to benefits, pensions and so on are themselves complex and can change frequently. It is very important that, in addition to taking note of the points we make below, you consult other sources of information. Choices that you may make about continuing or leaving work, or about benefits or pensions, may have long-lasting consequences, so it is important to think them through carefully, after seeking impartial advice.

  • Employment: The Disability Discrimination Act 1995 and employment

    The provisions of the Disability Discrimination Act 1995 are in principle very substantial, and apply to many aspects of employment. However, the exact implications of many of the provisions have not yet all been legally tested, so it will only become clear over the years how precisely the Act will apply. It is important to remember that the Act applies to organizations and companies with over 20 employees, although those with under this number are expected to abide by the spirit of the provisions.
    Broadly, the position under the Act is that unlawful discrimination in employment occurs in the following circumstances:

    • when a disabled person is treated less favourably than someone else;
    • this treatment is given for a reason relating to that person’s disability;
    • the reason does not apply to the other person, and
    • the treatment cannot be justified.

    Such discrimination must not occur in:

    • the recruitment and retention of employees;
    • promotion and transfers; training and development, and
    • the dismissal process.

    In addition employers must make reasonable changes to their premises or employment arrangements if these substantially disadvantage a disabled employee, or prospective employee, compared to a non-disabled person.
    These provisions sound formidable and very supportive of the situation of many people with MS, and in many respects they may be; however, the detailed interpretation of the provisions of the Act awaits clarification. Many of the provisions of the Act hinge on what a
    ‘substantial’ disadvantage to a disabled person is, and what is ‘a reasonable’ adjustment on the employer’s part is. Nevertheless, some examples may help to clarify certain provisions:

    • Employers probably cannot justify dismissing disabled employees if they were sometimes off work because of their disability, if the amount of time they take off is what the employers accept as sick leave for other employees.
    • Employers cannot justify refusing to promote a person who uses a wheelchair, solely because the person’s new workstation is not wheelchair accessible, if by reasonable rearrangement it could be made accessible.
    • If an employer requires someone with a particular typing speed, and someone with arthritis of the hands who applies for the job has too slow a speed, the employer has to consider whether any
    reasonable adjustment could be made. If it could not, the employer can refuse to employ the person.
    • Employers have to make any reasonable adjustment needed for disabled people to take part in an interview, to make sure that they would not be at a substantial disadvantage.
    • If an employer has not asked about – and the disabled person has not mentioned – any particular needs, then the employer may still have to make some kind of adjustment on finding that the person has a disability, and is at a substantial disadvantage.

    ‘Reasonable’ changes to be expected

    What ‘a reasonable change’ is for the benefit of a disabled person depends on:

    • how much an alteration will improve the situation for the person;
    • how easy it is to make the change;
    • the cost of the measure (in terms of finance and disruption);
    • the employer’s resources;
    • financial, or other help, that may be available.

    Examples of changes to physical features that may be required are:

    • widening doorways;
    • changing taps to make them easier to turn;
    • altering lighting for people with restricted vision, and
    • allocating a particular parking space for a disabled person’s car.

    Examples of changes to procedures or practices that may be required are:
    • altering working hours;
    • supplying additional training;
    • allocating some duties to another employee;
    • allowing absences during working hours for rehabilitation, assessment and treatment;
    • providing a reader or interpreter;
    • providing supervision;
    • acquiring or making changes to equipment;
    • modifying procedures for testing or assessment, or
    • transferring person to another place of work.

    Further information on the provisions of the Act can be obtained from the Disability Discrimination Act Information Line. There is also a booklet containing guidance and a code of practice on employment available from the Stationery Office.

    Exceptions to the Act

    Although all permanent, temporary and contract workers are covered, certain organizations or work settings are not covered. These include:

    • people in the armed services;
    • police officers;
    • fire brigade members if they are expected to take part in firefighting;
    • Ministry of Defence firefighters
    • prison officers and prison custody officers;
    • people working on board a ship, aircraft or a hovercraft;
    • people who work outside the UK;
    • individual franchise holders with less than 20 employees, even if the whole franchise network has more than 20.

    If employment levels fluctuate, the Act applies whenever there are 20 employees. As a different kind of exception, there are charities and organizations providing supported employment who can discriminate in favour of disabled people.
    Having said that, most employers are understanding and many will go out of their way to support people in similar circumstances, and informing them of your complete circumstances will be beneficial. However, only you can judge how your employer might react to the news of your diagnosis.