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MS in Focus Issue One • 2003

The Magazine of the Multiple Sclerosis International Federation

Issue One • 2002MS in focusIssue 5 • 2005

● Healthy Living

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MS in focus Issue 5 • 2005

Editorial Board

Executive Editor Nancy Holland, EdD, RN, MSCN, VicePresident, Clinical Programs and Professional ResourceCentre, National Multiple Sclerosis Society USA.

Editor and Project Leader Michele Messmer Uccelli, BA,MSCS, Department of Social and Health Research, ItalianMultiple Sclerosis Society, Genoa, Italy.

Managing Editor Jennifer Eades, BA, and Helle ElisabethLyngborg, MA, Information and Communications Manager,Multiple Sclerosis International Federation.

Editorial Assistant Chiara Provasi, MA, Project Co-ordinator, Department of Social and Health Research,Italian Multiple Sclerosis Society, Genoa, Italy.

Production Assistant Leila Terry, BA, ResearchAdministrator, Multiple Sclerosis International Federation.

MSIF Responsible Board Member Prof Dr Jürg Kesselring, Chair of MSIF InternationalMedical and Scientific Board, Head of the Department ofNeurology, Rehabilitation Centre, Valens, Switzerland.

Editorial Board MembersGuy Ganty, Head of the Speech and Language PathologyDepartment, National Multiple Sclerosis Centre,Melsbroek, Belgium.

Katrin Gross-Paju, PhD, Estonian Multiple SclerosisCentre, West Tallinn Central Hospital, Tallinn, Estonia.

Marco Heerings, RN, MA, MSCN, Nurse Practitioner,Groningen University Hospital, Groningen, TheNetherlands.

Kaye Hooper, BA, RN, RM, MPH, MSCN, NurseConsultant USA/Australia.

Martha King, Director of Publications, National MultipleSclerosis Society, USA.

Elizabeth McDonald, MBBS, FAFRM, RACP, MedicalDirector, MS Society of Victoria, Australia.

Elsa Teilimo, RN, UN Linguist, Finnish Representative,Persons with MS International Committee.

Chloe Neild, Information Management Co-ordinator, MS Society of Great Britain and Northern Ireland.

Copy Editor Emma Mason, BA, Essex, UK.

Established in 1967, the Multiple SclerosisInternational Federation links the work ofnational MS societies worldwide.

We are committed to working together, andwith the international research community, toeliminate MS and its devastating effects. Wealso speak out on a global level for thoseaffected by MS.

Our priorities are: • Stimulating global research• Stimulating the active exchange of

information• Providing support for the development of

new and existing MS societies• Advocacy

All of our work is carried out with thecomplete involvement of people living with MS.

Multiple Sclerosis International Federation

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Cambridge Publishers Ltd

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© MSIF

Cover photo: Eddie Safarik. MS Victoria SWEAT AQUA

Program, The Mercury, Hobart, Tasmania, Australia

From the Editor 3

Healthy living with multiple sclerosis 4

Making nutritional choices 6

Choosing fitness: exercise and MS 9

The value of pet therapy 12

Travel for all 13

Staying active: leisure activities and sports 16

Preventive health 18

Your questions answered 20

Interview: Healthy living with MS –Jorge Rosquillas 21

Results of the online survey 22

Slovak MS Union Family Picnics 24

Reviews 26

Subscription details 28


ContentsHealthy living is the topic of this issue of MS inFocus. For people with MS, healthy living canhave many different meanings: for some it meanssimply refraining from unhealthy habits such assmoking or drinking alcohol; for others, it includes

an array of activities and practices that promote fitness and overallwell-being. True healthy living is a combination of including thosethings that are beneficial to good health, whilst excluding thosethat are harmful.

There are many aspects to healthy living that encompass not onlyphysical health but also spiritual and mental well-being. Exercise,meditation, hobbies, sports, travel and volunteering are examplesof practices that help the person with MS participate in family andsocial activities, and which can be satisfactory substitutes for otheractivities no longer possible due to MS. They can contribute tooverall good health and to preserving a positive self-image.

Health-promotion interventions can be cost-effective ways fordecreasing the burden of MS, especially when they arecompatible with the person’s lifestyle. Healthcare professionalscan have an important role in promoting the exploration, initiationand maintenance of health-promoting behaviours, includingstrategies that enhance physical activity, socialisation, goodnutrition and stress management.

This issue of MS in Focus discusses different aspects of healthyliving that we feel are of interest to the person with MS as well asto the MS professional. On behalf of the Editorial Board we hopethat you find Healthy Living informative and useful. We lookforward to receiving your comments.

Michele Messmer Uccelli, Editor

The next issue of MS in Focus will be onRelationships, Intimacy and Sexuality.Send questions and letters [email protected] or marked for theattention of Michele Messmer Uccelli atthe Italian MS Society, Vico chiuso Paggi3, Genoa, Italy 16128.

Editorial StatementThe content of MS in Focus is based on professional knowledge and experience. The editor andauthors endeavour to provide relevant and up-to-date information. Information provided through MS in Focus is not intended to substitute for advice, prescription or recommendation from aphysician or other healthcare professional. For specific, personalised information, consult yourhealthcare provider. MSIF does not approve, endorse or recommend specific products or services,but provides information to assist people in making their own decisions.

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Letter from the Editor

Multiple sclerosis is a life-long neurological illnessthat creates variability and uncertainty in the day-to-day lives of those who have the disease. It isimportant to have a multi-faceted wellnessprogramme in order to make the most of physical,emotional, social and spiritual health. Althoughthere is no cure for MS, there is hope that one canrenew and refresh along the way, and create abalance in life that promotes harmony.

Deciding to adhere to a healthy lifestyle or tomaintain healthy habits is a choice for each person.This concept of choice is especially relevant forpeople with MS who often feel they have littlecontrol over the disease. Diet, exercise, stressmanagement, travel, leisure activities and health-promotion activities are all aspects of living well thatare, to a certain extent, under the control of theindividual.

Although there are no particular diets that havebeen shown to affect the disease process in MS,food fuels the body, and provides energy. A well-balanced nutrition plan, low in fat, high in fibre, canhelp stabilise weight and improve bowel health.Adding dietary supplements such as multi-vitaminswith minerals, calcium, and vitamin D should notreplace proper food intake, but can be useful.

People with MS should be encouraged to checkwith their doctor or nurse before taking vitamins,minerals, or herbal supplements to ensure safetyand compatibility with the traditional medicationsalready prescribed.

Regular exercise is important for several reasons,and should be part of everyone’s routine. Exercisenot only improves cardiovascular health, but alsohelps improve strength and endurance, and is afactor in stabilising mood. Exercise can help relieveMS-related fatigue and manage spasticity. Aquaticstherapy (also known as hydrotherapy) can be veryhelpful in MS because it provides an aerobicworkout while keeping the body temperature down.Other helpful exercise regimens include stretching,and low impact aerobic workouts, combined withstrength training, using light weights. People withMS should discuss exercising with their doctor ornurse, and may need a consultation with aphysiotherapist before beginning a programme.

Coping with stress can be difficult in thesedemanding times. Stress makes most people feelbad, but those with MS may actually experiencethe consequences of stress in ways that maketheir symptoms feel worse. Stress may raise bodytemperature. People with MS tend to feel morefatigued, or have temporary worsening of MS-related symptoms when their body temperature iselevated. Relieving stress can be as easy as takinga few deep breaths, visualising a pleasant memory,or scene, or simply smiling. More regimentedstrategies include practicing progressive relaxationtechniques, yoga, meditation, tai chi, or prayer.Some people enjoy the relaxation found in nature,art, music or other sources. The importantmessage is that people should incorporate


Healthy living withmultiple sclerosis

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By Linda A. Morgante, Advanced

Practice Nurse, Corinne Goldsmith

Dickinson Center for MS,

Mount Sinai School of Medicine, New

York City, USA

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whatever brings a calm and serene feeling intotheir daily routines.

Travelling is fun, but can be stressful when onehas MS. There are many travel agencies that workwith people with disabilities, and help to make theholiday a success. Some important points to thinkabout when choosing a destination include theclimate and average temperature (places that arehot or humid may not be ideal vacation spots),accessibility, proximity to a healthcare provider orhealthcare facility, and whether there will be arefrigerator for storing medications for injection.Planning ahead is essential to enjoy any trip.

Some people with MS take very good care of theMS, but forget about the other parts of the bodythat require attention. Regular examinations by aprimary care doctor may include a cardiogram, andmonitoring of blood glucose, triglycerides, andcholesterol levels. Women should see agynaecologist for a regular cervical smear test,breast examination, and bone density study. Thelast is especially important if there is a history ofreceiving multiple doses of steroid medication, orlimited mobility related to MS. Individuals shouldconsult their primary care doctor about whatgeneral health checkups are important and howoften they should be done.

Feeling hopeful and optimistic can promotehealth, and aid in the healing process. Whenasked what they hope for, most people with MSsay that they hope for a cure, or relief from thetroublesome symptoms they are experiencing.These are promising times in the field of MS, butthere is still no cure. However, there areinterventions for MS that can reduce relapserate, slow the disease progression, and help toalleviate related symptoms, such as pain andfatigue. Accessing good care is of prime concernamong those who have the disease, and it isimportant to find a place that provides the kind ofcomprehensive care one needs to stay healthy.Good care by healthcare providers, who view MSin a holistic way, can be the best way to sustainhope despite the ups and downs of living withthis unpredictable illness.

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We know that our health and happiness areintricately bound up in our choice of food and drink.We also know we gain a sense of well-being fromtaking control of our diets. It’s not surprising thatpeople with MS so frequently ask: “What type offood should I eat to stay healthy?” The simple answer – “a low animal-fat diet” – is trueof relapsing-remitting MS and is good advice.However, the real answer is actually quite complexas individual needs in MS are as varied andunpredictable as the symptoms of MS themselves.

In the beginning When MS is first diagnosed, most people are ableto eat a varied diet. This is a good time toencourage the principles of a healthy-eatingregimen, outlined in Table 1, as most people withMS are motivated to make positive changes. Thosewho have had MS for some time will be familiarwith the concept of a healthy diet, low in animalfats such as butter and fatty meat, but rich invegetable fats and oily fish. This type of diet hasbeen advised by MS societies world-wide for manyyears.

The evidence in support of this type of dietsuggests that omega-3 oils found in oily fish suchas mackerel, sardines, herring and tuna may havean anti-inflammatory role in many conditions,including MS. Linoleic acid, a type of omega-6polyunsaturated fat found in some vegetable oils,has been described as a treatment which mayhelp slow down the disabling effects of MS.Health professionals are not unanimous aboutthis, but there is no doubt that linoleic acid is avaluable part of a healthy diet. However, the dailyrecommended amount can be obtained through abalanced diet and there is no need for capsules ifthe diet is adequate. More than the recommendeddose does not increase the potential benefits.

As many people with MS are minimally active, withlow energy needs, the lower amounts of linoleicacid they need are best taken from concentratedomega-6 oils, such as sunflower oil, safflower oil orsoya oil. These oils are also a rich source of vitaminE. This is thought to protect myelin and othertissues from oxidative damage. Vitamin E is foundin abundance in wholegrain cereals as well.

Making nutritionalchoicesBy Dr Anne Payne, Lecturer in Clinical

Nutrition and Dietetics,

Glasgow Caledonian University,

Glasgow, United Kingdom

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Using omega-6 oilsFood oils can be easily consumed as a saladdressing, with added herbs for flavour, as a dip forbread, or sprinkled into sauces and soups. Heatingthem to a high temperature reduces theirnutritional benefit, so they should not be used infrying, other than for a rapid stir-fry. In practice,people with MS should be encouraged to use avariety of omega-6 oils and spreads inmoderation, to provide about 10 per cent of totalenergy intake.

As symptoms progressDiet is of particular benefit in the clinicalmanagement of MS when symptoms of disabilitydevelop. Constipation, weight gain, urinary tractinfections (UTIs), swallowing difficulty,malnutrition, pressure sores and fatigue may allbenefit from appropriate food, fluid and nutritionalcare.

Early warningChange in body weight and nutritional well-beingin MS usually occurs slowly and so the onset ofdebilitating weight gain or malnutrition is often ill-defined and a pattern of poor eating habits hasbecome well-established by the time any action istaken. This can be prevented by ensuring thatweight and height are recorded at diagnosis andthat weight is recorded at each clinic visitthereafter to enable a nurse, nutritionist ordietician to monitor “body mass index” (BMI), ameasure of weight for height.

Poor mobilityConstipation, weight gain and UTIs often occursimultaneously in those with MS who use awheelchair, due to limited mobility. Their dietshould include a fair amount of bulky, low fat, highfibre foods, including soft fruits such as bananas,prunes and peaches, a good selection ofvegetables, wholegrain cereals, and a daily intakeof two litres or more of sugar-free fluids.Cranberry juice is popular in the prevention ofUTI. However, cranberry drinks contain a lot ofsugar so they should be used with caution.Cranberry capsules are an alternative to juice.

Modify with careAt no time is choice of diet of greater importance inMS than when the ability to swallow food or fluid isaffected. Dysphagia, as this is known, causescoughing and choking during meals and commonlyresults in poor intake. This can lead to severeweight loss, possible dehydration, and topneumonia if food particles are aspirated duringcoughing or choking. The diet should be modifiedwith care.

To prepare soft but nourishing food, it may benecessary to finely mash chopped fish or meat intothick sauce or gravy with a fork. If a purée diet isadvised by a health professional trained to assessswallowing ability, then a food blender may beneeded. Sometimes drinks are taken more easily

Table 1: Tips for Healthy Eating Choose low-fat dairy products, such as low-fatyoghurt and semi-skimmed milk.

Eat oily fish, such as salmon and mackerel, two to three times weekly.

Choose chicken, turkey and leaner cuts of red meat.

Grill, bake, steam or poach foods in preference to frying.

Use omega-6 vegetable oil or spreads inmoderate amounts. These include sunflower,safflower, and soya products.

Avoid the animal fats contained in pastry, pies,cakes, chocolate and cream.

Eat wholegrain bread and wholemeal cereals.

Eat five portions of fruit and vegetables daily.

Drink two litres or more of sugar-free fluids daily.

Avoid “megadose” preparations of single vitamins.


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when thickened a little with a special food starch.Thickening can help prevent a trickle of fluid fromentering the lungs.

When malnutrition is a problemOther symptoms of MS can also contribute tomalnutrition and should be identified early. Severetremor and postural difficulties may make eatingphysically difficult to accomplish. Tremor may alsoincrease energy and nutrient needs. Many adaptiveaids are available that can assist people whoexperience physical difficulties while eating ordrinking. These include plates with rims and non-slip surfaces, special grip cutlery, weighted utensils,drinking cups with handles, special grip surfaces orweights and many others.

Poor vision affects the ability to shop, preparemeals and to eat. Online shopping using anadapted computer screen can be helpful for somepeople with visual difficulties. An occupationaltherapist can provide suggestions for adaptingmeal preparations and eating.

Fatigue and poor appetite cause weight loss assmall, less frequent meals are taken. Fatigue can beespecially problematic for people with MS who havethe responsibility for meal preparation in the home.Table 2 lists some energy-conservation strategiesthat can be helpful during food preparation.

Poor memory or depression can reduce themotivation to eat. People with these types ofproblems should be encouraged to discuss theseissues with their healthcare professionals.

Finally, some drugs for MS symptoms may causepoor appetite or a dry mouth, which makes it difficultto chew and swallow.

When malnutrition is a risk, the greatest nutritionalneed is for energy to help prevent loss of body weightand muscle strength. Food may need to be quite highin fat to provide concentrated nourishment. Full-fatdairy foods, such as milk, cream, cheese and buttershould not be avoided as they can be stirred intosweet and savoury food to increase their energy

content. Milk, cheese and yoghurt are also richsources of calcium. This is essential for bone health,especially when mobility is poor or when takingsteroids.

Choose wiselyA multi-vitamin supplement can be reassuring, but ifa good variety of high-energy food is available,expensive supplements (in pill form or drinks) shouldnot be needed. Be wary of self-help books thatsuggest avoiding specific foods or taking expensivesupplements. To date, there is no medical evidenceto support any of these ‘MS diet’ or supplementclaims, and while they may give people a temporaryfeeling of control and well-being, they maycontribute to the onset of malnutrition and beexpensive or even dangerous. So before followingany special diet, people with MS should consult aqualified healthcare professional.

Table 2: Energy conservationstrategies during meal preparation

Use pre-washed, pre-cut foods.

Use electrical appliances whenever possible(for example, dishwasher, blender, microwave, etc.).

Prepare larger portions to be stored in thefreezer for future meals.

Use a home-delivery service for groceries.

Keep a fan in the kitchen to avoid overheating.

Sit while preparing meals (a chair with wheelscan be very useful).

Prepare meals during the time of the day whenenergy is highest.

Keep commonly-used items on the easiest-to-reach shelves.

Involve others in the work!

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There is a great deal of valuable informationavailable on exercise. This article providesan overview of the major forms of exercisepractised by people with MS, compiled fromvarious sources. Sources are noted for thereader who would like further information.

Exercise is essential to general health and well-being and can also be helpful in managing manyMS symptoms. An important study published byresearchers in the United States in 1996demonstrated the benefits of exercise for peoplewith MS, including improved cardiovascularfitness, improved strength, better bladder andbowel function, less fatigue and depression, amore positive attitude and increased participationin social activities.

While exercising has many health benefits, notexercising poses risks for people with or withoutMS, including heart disease, muscle weakness,joint stiffness, decreased bone density with anincreased risk of fracture, and shallow, inefficientbreathing.

A physiotherapist experienced in MS can behelpful in designing, supervising, and revising awell-balanced exercise programme. With someguidelines, a good programme can help todevelop the maximum potential of muscle, bone,and respiration, thereby avoiding secondarycomplications and gaining the benefits of goodhealth and well-being. Any person with MS who isstarting on a new exercise programme shouldconsult an appropriate healthcare professional


Choosing fitness: exercise and MSCompiled by Michele Messmer Uccelli, Italian MS Society, Department of Social

and Health Research, Genoa, Italy

Tai chi promotes balance through movement and body awareness.

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beforehand. (Source: The MS InformationSourcebook, National MS Society, April 2003)

Strengthening, stretching and range ofmotionStrengthening exercises help make the bodystronger and work on the principle of resistance,which requires the muscles to work progressivelyharder. Resistance is achieved through usingexercise machines, elastic bands or weights.These types of exercises can be focused onspecific muscle groups that have been weakenedby disuse. It is important to consult aphysiotherapist before beginning anystrengthening programme, since there can be arisk of worsening spasticity.

The movement of joints may be impaired due totightness of the joint capsule, ligaments andtendons. If a joint is not used regularly it willbecome stiff and will eventually interfere withnormal movement. The objective of range ofmotion exercises is to maintain joint flexibility.This is achieved by moving each joint throughoutthe full range of movement.

Stretching exercises are recommended formuscles and tendons that have lost theirelasticity, resulting in feeling stiff and having

difficulty moving. These types of exercises areoften helpful in preventing contractures, which isa “freezing” of a joint so that it cannot bendthrough its full range of motion. (Source: MultipleSclerosis: The questions you have, the answersyou need, 3rd Edition, RC Kalb. Demos MedicalPublishing, 2004)

Aerobic exerciseAerobic activity is any sustained, rhythmic activitythat is able to raise the pulse and breathing rate.Some examples of aerobic exercise includeswimming and cycling (with foot pedals or handcycling). It is important to be consistent infollowing an aerobic exercise programme, withthe recommended amount of time being 30minutes, three to five times weekly. This mayseem like quite a bit of exercise, especially forsomeone with mobility difficulties or MS fatigue.The 30 minutes can be broken down into shorterperiods of time, although it is most effective, forcardiovascular fitness, to maintain an increasedheart rate for a minimum of 20 minutes, at leastthree times weekly.

YogaYoga is an Indian form of exercise, which, intraditional practice, aims to achieve completeawareness and tranquillity through certainphysical and mental exercises. Yoga involvesconcentrated breathing and a range of stretchesthat revolve around the spine, increasing thebody’s flexibility and releasing tension. Some ofthe movements may be easy for a person withMS while others may need practice or adaptation.(Source: The Multiple Sclerosis ResourceGuide, http://www.msresourcenetwork.org)

A recently published study from the United Statesfound that, similarly to aerobic exercise, peoplewith MS participating in a weekly yoga classalong with home practice, had improved levels ofenergy and decreased fatigue. While yoga andaerobic exercise have many similar properties,yoga has particular benefits for people with MS inthat it has a stress reduction or relaxationcomponent and it can also improve balance.

Benefits of Flexibility• Enhanced physical fitness

• Improved ability to learn and perform skilledmovements

• Increased mental and physical relaxation

• Development of body awareness

• Reduced muscular soreness

• Reduced muscular tension

• Decreased stiffness(Adapted and reprinted with permission of theMultiple Sclerosis Society of Canada fromEverybody Stretch: A physical activity workbookfor people with various levels of multiplesclerosis, 2003)

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(Source: Yoga Matters: Exercise for MS by C.Haran http://www.understandingms.com)

Tai chiTai chi is a Chinese martial art of Buddhisttradition that, as a conditioning regimen, is gentlerthan most forms of yoga and can be performedseated. Tai chi is usually performed as an orderedset of slow, elegant motions that promote balancethrough thoughtful consideration of movementand heightened body awareness. The movementsfocus on proprioception, which is one’sperception of movement and spatial orientation.This concept is especially important for peoplewith MS who often experience difficulties withtouch and balance. (Source: InsideMS, NationalMS Society, Volume 21, July-September 2003)

Aquatic exerciseAquatic exercise or exercise in water is oftenrecommended because it provides optimalexercise conditions for the person with MS. Waterreduces the effects of gravity, and theweightlessness that occurs in water helps aperson with weakened limbs attain a greaterrange of motion. In addition, chest-high water canprovide support, enabling many people with MS tostand and maintain balance for exercises withless effort than normally required. The resistancethat water provides can be used to strengthenmuscles. Water also helps reduce the body heatthat can be generated by exercise. Because thecore temperature of the body remains lower,there is less over-heating, which is often a causeof temporary worsening of MS symptoms. Watertemperatures of 80-84°F (27-29°C) are usuallyrecommended. (Source: The MS InformationSourcebook, National MS Society, March 2003)

ConclusionA person with MS has many fitness and exerciseoptions and the choice will depend on one’slifestyle, physical functioning, and the availabilityof suitable facilities. The key is deciding, togetherwith a physiotherapist or other healthcareprofessional, the most appropriate form ofexercise, and then getting started.


Since MS symptoms can worsen with heat,aerobic exercise that is too vigorous may puta person at risk. Here are some tips forkeeping cool while exercising:

• Exercise in a cool environment (air-conditioning, fans)

• Exercise in a swimming pool with atemperature of 80-84°F (27-29°C)

• Drink cold fluids to be well hydrated and tolower body temperature

• Use a cooling vest, cap or neck pad whileexercising

• Sit in a cool bath before exercise

• Wear light clothing

• Wipe down skin during exercise

• Maintain a moderate pace

(Adapted and reprinted from: Keeping ActiveWhen You Have MS, MS Society of Great Britainand Northern Ireland, 2003)

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The value of pet therapy

Many people believe that pets are important to ahealthy life and even claim that their animals havehuman-like abilities, such as sensing the feelings oftheir owners and reacting accordingly. In the pastfew years, studies have been conducted tounderstand whether there is therapeutic value incontact between humans and animals.

“I have found my pets to be one of my greatestcomforts during the ups and downs of MS.Even during deep fatigue, when I can't evenlisten to the hum of the floor lamp (much lessthe TV), my little female lovebird curls up on mychest and takes a nap with me.”

The term “pet therapy” indicates a complex seriesof uses of the human-animal relationship for

medical (physiological) and psychological(emotional) purposes. Pet therapy has been usedin many different groups, including people withlearning, psychomotor and attention deficitdisorders, Down’s syndrome, autism, psychiatricdisorders such as anxiety and depression, chronicillness, and with the elderly.

“My neurologist was concerned about havingmy dogs in the house due to balance, mobility,etc. There have been days this last year that I'mnot sure I would have gotten out of bed if Ididn't have to take care of them. They lick myface when I cry, they make me laugh and put upwith me when I’m in a bad mood!”

In some studies, pet owners reported reducedfear, improved self-esteem and significantly fewerminor health problems and emotional concernsthan people who had no pets. But it has also beenshown that it is not necessary to actually own thepet in order to receive some benefits from ananimal-human “relationship”. The mere presenceof a friendly animal can be beneficial as well.“Visiting pets” or “therapy pets”, are just two of thenames given to describe programmes in whichanimals help people just by visiting them. Thismay be an interesting possibility for people withMS who would have significant difficulties takingon the responsibility of their own pet due toproblems with balance, mobility and co-ordination,fatigue and other MS symptoms.

Not only does the human benefit from interactingwith animals, but one study found that dogsexperience some of the same positivephysiological reactions as their humancounterparts.

To learn more about pet therapy visit:http://www.dog-play.com,http://www.deltasociety.org


By Chiara Provasi, MA, Project

Co-ordinator, Department of Social

Health Services and Research,

Italian MS Society, Genoa, Italy

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The decision to travelAs with many other aspects of life, MS can havea dramatic impact on how we travel, where wetravel or even if we travel at all. Travelling withMS may be as complicated as arranging for anaccompanying attendant or as easy as makingsure the medication is properly packed. Thedecision to leave the comfort and familiarity ofhome and venture off into the world ofunknowns can be a difficult but rewarding one.No matter what a person’s condition ordestination may be, planning is the key to asuccessful trip.

Assessing individual needs is an important partof the planning process. If the person is takingmedication such as interferon that needs to staycool, travelling with a portable cooler (soft-sidedis more versatile, but less durable) and ensuringthat a refrigerator is available in the hotel roomis important. If the person has concerns aboutfatigue, renting an electric scooter or wheelchairat the destination should be encouraged. Asheat can make symptoms worse, climate shouldbe considered when choosing a holidaydestination.


Travel for allBy Debbie Fogle, Access-Able Travel Source, Wheat Ridge, Colorado, USA

For every obstacle there is usually an adequatesolution. Knowing where to find resources iscrucial. Thanks to the World Wide Web there is aworld of information at our fingertips.

CruisingTaking a cruise is a good vacation option. Not only isthere a high degree of accessibility on most cruiseships, but the many trendy workshops, spas andhealth/fitness programmes on board make cruisingfun. It is nice to visit many destinations but only haveto unpack bags once. Most major cruise lines offercomfortably equipped, accessible staterooms; theshore excursions may or may not be accessible,depending upon the cruise line and the destination.The best way to negotiate the waters of accessiblecruising is to contact a travel agent who specialisesin arranging travel for people with disabilities.

Air travelAir travel can be challenging with plane changes,long flights and, of course, the dread of havingmobility equipment damaged. Fortunately thereare some things one can do to prepare for asmooth flight. After deciding on travel dates, it isimportant to make reservations as far in advanceas possible and to inform the reservation agent ifthe person travelling uses a wheelchair or scooter.

Let them know if assistance through the airport orboarding the plane will be needed. Most airlines willprovide an aisle chair for transfers through theaircraft to the seat.

For security as well as personal comfort, apassenger who needs medication for a trip shouldcarry it, along with relevant medical certification, incarry-on luggage. A wheelchair or scooter shouldalways be checked at the boarding gate andreturned to the passenger at the arrival gate. Tohelp minimise risk of damage to equipment, it ishelpful to tape on clear instructions as to how thebatteries are disconnected and any otherdisassembly procedures. It is also important toremember that any small removable parts should betaken off equipment and stored in carry-on luggage.Travellers with disabilities should be sure to askabout the airline’s liability policy regarding damagedmobility equipment when making reservations. If, bysome chance, equipment arrives damaged, it shouldbe immediately reported to the airline.

How to find accessible accommodationFinding an accessible hotel is not difficult if oneknows where to look and what questions to ask.Avoid central reservation services and, whenpossible, speak directly to the hotels, since the staffon site will have better information about theirfacilities. When a person with MS knows his or herown needs he or she is better prepared to askappropriate questions. Being as specific as possibleis key. Instead of asking “Do you have widedoorways?” the question should be “How wide areyour doorways?” Getting an actual measurementmay require that the hotel has to call back, butaccurate information is essential.

Most major hotel chains throughout the world offeraccessible rooms, and more and more country innsand bed and breakfasts advertise their accessibility.Internet search engines are a good resource forlocating these places and some websites allow youto filter a search by accessibility. It is advisable toalways call the facility itself with specific questions.An individual’s needs may not be met by someoneelse’s definition of “accessible.”


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Websites such as Access-Able Travel Sourcewere born from the need to compile andshare access information. Access-Able wasfounded in 1995 by Bill and Carol Randallwhen Carol's MS progressed to the point ofneeding a scooter to get around. The Randallsloved to travel but had trouble finding accessinformation so they started gathering theirown. Almost 10 years later Access-Able hasover 5,000 entries relating to access thatinclude: accommodation, transportation,equipment rental/repair, travel tips, featuredestinations and an extensive list of resources such as accessible cruise ships,specialty travel agents and links to sites for even more access information. Visit www.access-able.com

Ground TransportationMost of the world’s major cities have some degreeof accessible public transportation. Often a searchof their websites will reveal more. Quite a fewresorts have accessible shuttles, and this should beverified when making the hotel reservation.

Some cities have on-call accessible taxi services,but more often arrangements need to be made 24to 48 hours in advance.

Resources such as Access-Able Travel Sourcehave a links page. Information provided by theselinks includes where to rent accessible recreationalvehicles (RVs), and how to find transportation inNew Zealand, Australia, Europe and NorthAmerica. We have a link to VIA Rail in Canada,Amtrak in the USA and the Eurostar from Londonto Paris.

No matter what one’s dream destination may be,planning is the key to an enjoyable trip.

Note: Before travelling abroad it is helpful to checkcountry-specific websites for disabled travellers’information. Some of these sites provide informationfor visitors on accessing healthcare services.

GENERAL TRAVEL RESOURCES(Locate many others by using a web browser and the key words “accessible travel”)

Access-Able Travel Sourcewww.access-able.com

Global accesswww.geocities.com/Paris/1502

Accessible journeyswww.disabilitytravel.com

ACCESSIBLE TRAVEL PUBLICATIONS

Emerging Horizonswww.emerginghorizons.com

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Staying active: leisureactivities and sports

Changing one’s lifestyle is certainly not an easytask, but it is not impossible. The aim for mostpeople with MS is to stay at their jobs for as long aspossible. Workplace adaptations, job redesign andflexible work time are some of the possibilities thatneed to be explored before people with MS decideto leave their jobs. If a person does have to stopworking, then it is vital for their self-esteem andwell-being that they identify fulfilling and enjoyablesubstitute activities.

Making lifestyle changes is an undertaking forwhich communication and professional support arekey factors for success. Accepting change requires

time, and how much will depend on the individual.Support is important for guiding the personthrough the search for new opportunities. Theprocess often begins by looking at the individual’spersonal history – a sort of leisure and interestschecklist.

Was the person athletic prior to MS? If so, in whichactivities? What hobbies did the person pursueprior to MS? Are there any dreams that theindividual has not yet realised due to a lack of time?The answers to these and other questions form thebasis for an appropriate search for new activities.There are so many leisure activities and sportsavailable for a person with MS, with or withoutdisability. The aim is to choose those thatcorrespond most realistically to the interests,expectations and physical limitations of theindividual.

Leisure activitiesOften, a wide variety of leisure activities areavailable in the local community. It is a good idea todiscover what is available locally and what isrequired for participation. Participation may dependon the person’s ability to reach the location wherethe activity takes place. People with MS withdisabilities need to assess the accessibility of thevenue when deciding on an activity that takes themout of the home.

Reading, gardening and cooking There are a number of different tools and devicesthat make activities such as reading, gardening andcooking enjoyable for people with MS whoexperience symptoms such as upper limbweakness, mobility problems and visual difficulties.Automatic page-turners and stationary bookstandscan be very helpful for reading. Large print or audio

By Paul Van Asch, Director of

Physiotherapy, National MS Centre,

Melsbroek, Belgium

© T

im P

anne

ll/C

OR

BIS

17


books – on cassette or compact disk – areexcellent aids for people with visual difficulties.Gardening and kitchen tools with special griphandles are examples of appliances that can helpthe person with difficulties safely continue apleasurable activity.

The World Wide Web provides many possibilitiesfor anyone with access to a computer. Thecomputer adaptations and aids now available forpeople with problems related to vision, fine motorand upper extremity control are practically endless.The Internet can be considered a leisure pastimefor many, but also a way for some to continueworking from home.

Sports Participating in sports can have a positive effect ona person’s general health and well-being. Somesports may have to be performed in a different waywith some adaptations or specific aids, but withpatience and a bit of courage, almost everyone canfind a sport that will fulfil his or her expectations.

Skiing in a seated position allows people with evensevere disabilities to experience the thrill of thisexciting sport. The four-track method assists thosewho have problems with balance.

Bowling combines sport and socialising withfamily, friends and others. As with other adaptablesports, the possibility of taking part is notconditioned by one’s level of disability, since manyadaptations and aids are available.

Horse riding can be performed in a therapeuticsetting, or as simple recreation. The positive effectson trunk balance and lower limb spasticity are welldocumented. Visit the website of The Federation ofRiding for the Disabled Internationalhttp://www.frdi.net/.

Wheelchair tennis can be a good substitute forthose who played tennis prior to MS or as a newendeavour. The game stimulates upper limb forceas well as grip strength. It also offers opportunitiesfor socialising.

Diving is a new world for many people with MS.This type of sport is advisable only following acomplete medical examination. Diving clubs fordisabled people exist in many countries and manyprogrammes have specially trained diving “buddies”to guide the fledgling diver with a disability. Regulartraining, either in an indoor or outdoor swimmingpool, depending on the weather, is necessary. Thepositive effect of diving on respiratory capacity is awell-known phenomenon. The InternationalAssociation for Handicapped Divers (IAHD) hasfocused upon providing the means for those withphysical disabilities who wish to become scubadivers. Visit http://www.iahd.org/

Fitness and exercise classes can be a source ofsocialising, health and fun. Over the past years theconstruction of fitness equipment has improved sothat many types are accessible for people withdisabilities. See Choosing fitness: exercise andMS in this issue of MS in Focus for moreinformation.

Sports competitions in which people withdisabilities, including those with MS, can participateare now held all over the world. Individual areas ofcompetition are typically divided in different levels,taking into account the athlete’s level offunctioning. The Paralympics, an elite sportingevent for athletes with a disability, offers a goodexample of the different types of sports accessibleto people with disabilities, even at a competitivelevel. Visit www.paralympic.com

ConclusionAlthough MS can force a person to make lifestylechanges, keeping active while incorporatingindividual interests and expectations remainsachievable. Communication, information andacceptance of support are useful tools to guidethe person through the wide variety of leisureactivities and sports available. This article hasexplored only some of these. MS societies,websites and healthcare professionals,particularly physiotherapists, can be excellentsources of additional information on these andother activities.

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Regular monitoring of one’s general healthstatus is very important. Often people with MSand their carers spend so much time coping withthe disease that they have little time to dedicateto preventive health.

The table lists screening examinations that aperson should have regularly, based on advice

from their doctor. The need for and frequency

of these examinations may depend on age,

medical history, ethnic group and family history.

Since internationally accepted

recommendations are not available for most of

these procedures, a primary care doctor should

be consulted.

Blood pressure check A procedure that uses a small, portableinstrument called a blood pressure cuff(sphygmomanometer), which registers theblood pressure in units called millimetres ofmercury (mm Hg).

Breast self-examination (BSE) A visual and physical examination of thebreasts to detect changes in colour, theappearance of dimples, lumps, and otherabnormalities.

Chest x-rayA safe radiology test that involves exposing thechest briefly to radiation to produce an imageof the chest and the internal organs of thechest.

ColonoscopyA procedure using a viewing tube that enablesan examiner to evaluate the appearance of theinside of the colon (large bowel).

Complete blood countA calculation of the cellular elements of blood,a major portion of which measures theconcentration of white blood cells, red bloodcells, and platelets in the blood.

Complete skin examinationA procedure performed by both the healthcareprofessional and the individual, to detect newgrowths, sores that do not heal, changes in thesize, shape, or colour of any moles, or any otherchanges on the skin.

Coronary artery disease screening (CADtests)A screening procedure to detect blood flow-limiting blockages in the coronary arteries thatinvolves stressing the heart under controlledconditions.

Digital rectal exam (DRE)An examination to detect abnormalities that canbe felt from within the rectum – the healthcareprofessional inserts a lubricated, gloved fingerinto the rectum and feels for anything that is notnormal.

Dual X-ray absorptiometry or DEXA (bonedensity scan)A test that uses a machine (DX scanner) thatproduces two x-ray beams, each with differentenergy levels. One beam is high energy whilethe other is low energy. The amount of x-raysthat pass through the bone is measured foreach beam and depends on the thickness ofthe bone. Based on the difference between thetwo beams, the bone density can be measured.

Preventive Health

19


Electrocardiogram (ECG/EKG)A non-invasive test that positions electricalsensing devices on the body to reflectunderlying heart conditions by measuring theelectrical activity of the heart.

Faecal occult blood testsSpecial chemical tests performed on stoolsamples to detect traces of blood(undetectable to the naked eye) that may bedue to slow bleeding from colon polyps orcancers.

Fasting blood glucoseA method for learning how much glucose(sugar) there is in a blood sample taken afternot having eaten for a period of time, usuallyovernight, commonly used in the detection ofdiabetes mellitus.

Flexible sigmoidoscopyA procedure to examine the rectum and thelower colon for rectal bleeding or otherabnormalities, using a flexible tube gentlyinserted into the anus and advanced slowly intothe rectum and then the lower colon.

Liver blood enzymesA blood test that determines the presence ofcertain liver enzymes in the blood stream ratherthan only in the cells of the liver.

MammogramAn x-ray test that produces an image of theinner breast tissue on film, visualising normaland abnormal structures within the breasts.

Oral examinationA procedure to detect changes in the colour ofthe lips, gums, tongue, or inner cheeks, and forscabs, cracks, sores, white patches, swelling, orbleeding.

Cervical smear (Pap test) A procedure in which a sample of cells from a woman's cervix (the end of the uterus thatextends into the vagina) is collected andsmeared on a microscope slide. The cells areexamined under a microscope in order to lookfor changes that may indicate cancer.

Prostate specific antigen (PSA)A blood test that measures the amount of PSA(a protein produced by the prostate gland)present in the blood stream, which is used toscreen for cancer of the prostate.

Testicular self-examinationA procedure for detecting the early signs oftesticular cancer that involves checking thetestes visually and physically for new swellingor other changes.

Thyroid scanA nuclear medicine procedure that takes animage of the thyroid gland as it accumulatesradioactive material that is ingested by mouth.

Tuberculosis Skin Test (PPD Skin Test)A procedure that injects a purified derivative oftuberculosis into the skin to determine if therehas been prior infection, which is confirmedwhen a hard, raised area at and around theinjection site appears.

UrinalysisAn analysis of the urine that can detectevidence of diseases, even some that have notcaused significant symptoms.

Visual field testA method of measuring an individual’s entirescope of vision, mapping the visual fields ofeach eye, in order to detect any signs ofglaucoma, damage to the optic nerve and/ordamage to the retina.


20

Q. A relative of mine read about the Kousminediet for MS and suggested that I should try it,since it is supposed to cure MS. I don’t believeit’s a cure, otherwise we’d all be on it! But doesit help MS symptoms?

Matt

A. This diet stems from a Swiss physician’s beliefthat MS is caused by an inappropriate diet,(although this has never been proven). It consistsof an initial three-day period during which theperson eats almost nothing. The regimen is nomeat and low fat and sugar, supplemented with anumber of vitamins. There is no evidence that theKousmine diet has any affect on MS, although alow fat diet is healthy and recommended foreveryone

Q. I was recently diagnosed with MS and havebeen an avid jogger for the past 10 years. Myfamily has been encouraging me to considerfinding a new form of exercise. I feel ok andreally prefer not to give up jogging. Will it makethe MS worse?

Giò

A. There is no evidence that any particular form ofexercise worsens MS, although any type of exercisethat causes you to exert yourself to the point ofraising the body temperature could, for some people,cause a worsening of symptoms, which is usuallytemporary (see Exercise in this issue of MS inFocus). Some joggers with MS find it useful to weara cooling vest while running, although there are anumber of other strategies as well. It is importantthat you, as newly diagnosed, maintain activities youfind enjoyable and satisfying. Do not make lifestylechanges that, perhaps, are not necessary. It is alsoimportant for all people with MS to listen to theirbodies and regulate activities appropriately,especially for those who experience fatigue.

Q. I’ve had a long history of taking steroids formy MS. Recently I read that people with MS areat risk of osteoporosis because of takingsteroids. Is this true and if so, how can I findout if I have a problem?

Jamey

A. There seems to be a slightly higher risk forpeople with MS than for other people forosteoporosis, which, defined simply, means lowbone mass. Low bone mass is dangerous becauseit makes bones more fragile, resulting in a higherrisk of fracture. Chronic steroid use is only one riskfactor. The others include limited physical activityand low vitamin D intake due to poor diet andlimited exposure to sunlight. There is also animportant genetic role for developing osteoporosis.To measure bone density, as a preventive measure,people with MS should periodically undergo a testcalled dual photon x-ray absorptiometry, commonlyknown as a bone density scan.

Your questions answered

21

When were you diagnosed with MS?April 1981

What was the most significant lifestylechange you made due to MS?It has been a continuous process. In thebeginning, the weakness that affected the rightside of my body forced me to stay in hospital andthen at home for three months. When Irecovered, life returned to normal, although I stillexperienced tingling in my arms and legs, but Itried not to worry about it. At that point, I didn’tmake any significant changes to my lifestyle.

However, I decided to postpone my plans todevelop a practice in a big city hospital, and alsomy plans to carry out graduate studies inpaediatric oncology.

My wife Gilde and I, along with our two sons,Jordi and Dirk, moved to a small town where Istarted work as a rural paediatrician. In 1988,vision in my left eye had greatly diminished. I wasrequired to stop driving, but continued workingby using my other senses. I developed anexcellent capacity for observation, paying specialattention to people’s voices, their profiles,movements and always looked in the direction oftheir eyes.

Currently I experience a greatly limiting fatigueand so, during the day, I try to distribute myenergy reserves evenly so that I am able to carryon working.

Did MS affect your employment? If so, howdid you adjust to, or manage the change? MS didn't affect my work as a paediatrician. Icontinued my medical practice and kept mycertification up-to-date with the MexicanPaediatrician Society. I had to make somechanges when my vision diminished, but I neverhad to give up my practice. Gilde took some timeaway from her work at a special educationschool to join me full time in my consulting office,and together as a team we were able to dealwith the demands that accompany the running ofa medical practice.

Have you adapted your diet in any waybecause of MS?I haven’t adapted my diet, but I try to keep ahealthy balance of lots of fruits and vegetables,seeds, sunflower oil, a lot of chicken and fish, anda limited amount of red meat.

Interviewwith JorgeRosquillas

Jorge Rosquillas


MS has not changed my outlookon life. I have come to think ofMS as a way of life, not an illness.

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Has MS changed any physical activities youparticipated in before diagnosis? If yes, wereyou able to find satisfying alternatives? MS has changed my physical activities. I used toenjoy walking and cycling; now it is difficult forme to walk more than 200 metres beforefatigue sets in, and cycling is no longer possible.I have successfully substituted these activitieswith reading, watching television, and listening tomusic.

Has living with MS changed your outlook onlife? If so, in what way?MS has not changed my outlook on life. I havecome to think of MS as a way of life, not anillness. We all have different limitations, and thekey is to recognise them and not cling to onespecific goal. We must always think about, andbe prepared for “Plan B”. For me, MS meant thedifference between being an absent father whohad an extremely busy career, and having a well-integrated, healthy and happy family life. I willnever know how my life would have beenwithout MS, and I prefer to look at the results asthey are now; for me, they are very good. I don’tthink my outlook would be any different if I didn’thave MS.

Do you practice any kinds of well-beingstrategies to stay healthy? (e.g. meditation,weekend getaways, hobbies etc). My life revolves around my family, my wife andmy sons. Gilde and I continue working 100 percent to our fullest potential. I think being busy isthe best therapy for staying in shape, mentallyand physically.

What do you feel are the most importantthings for maintaining healthy living withMS?I feel it is really important to be optimistic andnot to let myself surrender to pessimism andfrustration. I am always setting new goals in mylife, and above all I recognise that I am a verylucky person. I laugh a lot, and accept things asthey occur.

Responses to an online survey on theMSIF website (www.msif.org) haverevealed what some of our onlinereaders do to stay healthy – 232 peoplewith MS responded.

This is what we learned:

ExerciseMore than a third of respondents exercisebetween one and three hours every weekand nearly a third dedicate at least fourhours per week to exercise. Although this ispromising, nearly a third of respondentsexercise less than an hour a week and anumber of people are not exercising at all.

Leisure and physical activitiesPeople responding to our survey engage ina wide range of activities, with the majorityenjoying aerobic exercise, physiotherapyand walking. While less popular amongrespondents, swimming, weight training andyoga are other activities enjoyed by somepeople with MS.

Results of the onlinesurvey onhealthy living

Preventive Health MeasuresDental examination 73%

Vision test 58%

Blood pressure screening 55%

Cervical smear 48%

Breast examination 47%

Cholesterol screening 34%

Bone density test 14%

Cholesterol screening 6%

Prostrate cancer screening 5%

TravelTravelling appears to be difficult for many peoplewith MS. Fifty-eight per cent of respondents reportthat they travel less since being diagnosed with MSand nine per cent no longer travel.

Illness preventionBased on survey results, it appears that somepeople with MS see performing certainpreventive medical examinations as important tohealthy living. The box provides details on themost commonly performed preventive healthmeasures as reported by survey respondents.These results underline the important role ofhealthcare professionals in encouraging peoplewith MS to perform relevant examinations on aregular basis.

The results of the survey indicate that manypeople with MS participate in a number ofbehaviours that promote health, while some

remain less active. The tendency to choosehealthy behaviours may depend on one’spersonality, lifestyle and way of dealing with MS,among other factors.

23

Amount of weekly exercise

Different types of activities and exercise

0 hours <1 hour 1-3 hours 4-6 hours 6-10 hours 10+ hours

6%

30%36%

21%

5%2%

Tai chi Yoga Aerobic Swim-ming

WeightTraining

Physio-therapy

Pilates Walking

4%

13%

20%

15% 15%

7%

21% 21%


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Rationale: The Slovakian MS Union organises outings forpeople affected by MS and their families. Thisprovides an economical way for people withMS to maintain, and continue to build, socialnetworks within the MS community, sharesimilar experiences and take part in a variety ofactivities at a minimal cost.

Objectives:• To offer inexpensive social gatherings for

people with MS who may be unable tocontinue socialising through the workplaceand/or clubs or sports teams

• To motivate people with MS, who may leavetheir homes infrequently due to accessibilityand transportation difficulties, to meet withothers with MS

• To provide young children, who have a parentwith MS, with the opportunity to meet and playwith other children in a similar situation and toencourage adolescent children to share theirexperiences with others their own age

• To help people with MS and their families getout to relax and enjoy themselves, therebyincreasing their quality of life

• To raise MS awareness among people withMS, and support activities offered by localbranches of the Slovak MS Union

Background: It is quite expensive to organise socialmeetings for people with MS, and fundingprovided by the government is very limited.Accessibility can be an obstacle; a person usinga wheelchair typically requires two assistants in

order to be able to leave his or her home and tomove about the city – resulting in furtherexpenses. Outings provide people with MS andtheir families with the opportunity to enjoy a dayout, where they can discuss and share theirpersonal experiences in an accessible andsupportive environment.

Marketing the programme: Promotion of the outings is the responsibility ofeach branch chairperson. Members of largerchapters of 30 members or more receive ashort announcement and invitation by post.Members of smaller chapters of 30 members orfewer receive a personal phone call from theirchairperson with the outing details. Whether bymail or telephone, invitations are extended twoweeks prior to the outing. Chairpersons will alsoinvite people with MS from other towns wherethere is no local MS branch. This is aninexpensive way to promote the programme inother communities and, depending on the need,could result in the opening of a new MS branch.

Programme Structure: The chairperson of each branch organises theoutings. This includes purchasing the food anddrinks for everyone who attends. However,members often bring extra food or drink as acontribution. The outings are held outside citylimits, in specified picnic areas or in members’gardens. There are no fees for the use of thegrounds and they do not have to be booked inadvance because the outings are held in publicpicnic areas or back gardens. The events are informal and relaxed; members

Slovak MS UnionFamily Picnics By Juliana Ilencikova, Manager International Affairs, Slovak MS Union

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are encouraged to spend the day as they wish,but the main activities include socialising withother members, singing along to a guitar andaccordion, roasting sausages around acampfire, swimming (when the chosen area hasa lake or pool), and, currently, Trnava andPresov branches offer hippotherapy (therapywith horses) as part of the outing.

Outcomes: Around 20 people attend each branch outing,enabling over 500 people affected by MS peryear to participate in the branch outings. InSlovakia there are no specific support groupsfor children and teenagers with a parent withMS, so this fills the need for them to becomeinvolved and express how they are feelingabout MS in their family.

Project costs:• Food and drink for all participating members • Invitations and announcements

• Activities (e.g. horses and a trainer)• Transportation to and from the picnic site

Limitations: Families have to have transportation to themeeting place. Since it is held outside the city, itmay not be reachable by public buses or trains.Due to financial constraints, there are somemembers who are not able to travel due to thecost of transportation. As it is held outdoors, it isonly possible to meet when the weather is fair.

Suggestions: If a country wants to try organising a familypicnic on an informal basis and it is successful,they should try to convince their MS Society topromote it as a national programme. Also, ifsomeone from the group has fundraisingexperience, ask that person to take on thesearch for a sponsor. Funding could be used topay for pamphlets and their distribution, so thatmore people can be made aware of this activity.

Informal, relaxed events include activities like roasting sausages around a campfire.

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ReviewsA delicate balance. Living successfullywith chronic illness.By Susan Milstrey Wells

Review by Jaume Sastre-Garriga, MDInstitute of Neurology, UCLNational Hospital for Neurology and NeurosurgeryQueen Square, London, UK

A Delicate Balance isthe account of a journeythrough chronic illness,from diagnosis andstigma to the final goal ofturning limitations intoopportunities. The authorgathers information frominterviews with peopleaffected by different

chronic illnesses, with their carers and familymembers, and with health professionals involved inthe care of these people. The author combines allthis first-hand material with her own research tocreate a relevant tool for the mutual understandingof all people involved in this journey – the journey ofmany lives.

It is an easy book to read, thanks to her concisestyle and its excellent organisation. The book setsout with the aim of sharing the views of all thoseaffected by chronic illness. Once these views areexposed, they cause us to reflect about others andabout ourselves. I think the aim is achieved.

The first five chapters of the book are mostlyconcerned with the issues of diagnosis andtreatment. I found the chapter on alternativetreatments extremely interesting, not only becauseof the great amount of information, but alsobecause of the extreme objectivity with which it iscommunicated. This chapter enlightens us withsome typical behavioural patterns: individuals whohave decided to try one therapy and then becomeits adamant defenders, or health professionals who

maintain that, if a therapy has not been proven towork, then it does not actually work. A reader mayor may not agree, but the point of view of the writeris detached enough so that one can make one’sown decisions.

The subsequent chapters are about coming toterms with the condition, both individually and interms of relations with others, especially at work.Every cloud has a silver lining and the last chapterof the book is about the teachings that chronicillness have to offer those affected.

In summary, this book is an objective account of allaspects of living with chronic illness. It will appealand teach something to people living with an illness,family, friends and health professionals.

Publisher: Perseus Books Group (Cambridge,Massachusetts.) Copyrighted in 2000. Firstpaperback printing in June 2000. Price: US $17.5or Canadian $25.95. ISBN: 0-7382-0323-X

Yes, You Can!!!Go Beyond Physical Adversity and Live Life toIts FullestBy Janis Dietz, PhD

Review by Kristjan Otsmann, journalist, Estonia

The author demonstrates that life itself offers the joyof living, but individuals hold the responsibility to liveit right. She provides various examples of peoplewho have successfully managed their life with MS,and shares their advice for coping with it.

It is an easy book to read, the style is clear and hermessage is simple, yet persuasive: “You have toconcentrate on things you can do instead of thingsyou can’t.” It is influenced strongly by Dale Carnegie’sbooks (How to Win Friends and Influence Peopleand How to Stop Worrying and Start Living) but sheextends Carnegie’s ideas to people living and trying

27


to cope with MS.Carnegie’s motivationaland practical teachings areas sound today as whenthey were first written. Theauthor’s examples ofpeople who havemanaged their life withMS or other chronicneurological diseases areconvincing and helpful.

Every example is like a short story, which readers canrelate to their own lives. Perhaps there are a few toomany examples and the stories are somewhatrepetitive; however, this does not take away from thepleasure of reading shared success stories.

The book is somewhat too “American” for peopleliving in Europe, but is still very useful for non-American readers. My view is that the author isaggressive in her method of convincingindividuals to set goals, and perhaps pushes themto achieve their goals in too forceful a manner.

It is a good book because the author gives cleverinstructions for living a great life in spite of MS. Sheencourages her readers to strive to be better, tounderstand and to be understood, to commit toexcellence, to control one’s life and to do it withenthusiasm.

Publisher: Demos Medical Publishing, USAPrice: US $15.95 ISBN 1-888799-48-X

YOGA for MS and related conditions

Review by Elsa Teilimo

This is a video designed to be used at home,and is aimed at anyone whose mobility is limited.

The style of the video is simple. Sophisticatedequipment is not needed for any of the exercises:a sofa, couch or chair and a belt or a strap for legexercises is all that is required. In cases whereindividuals are unable to lift their legs, hands or

arms, a helper will be required.The quality is good; the background music isAsian-influenced and soft, and the backgroundcolours are kept light; the female instructor’svoice is soft and articulation is clear – she is nota super-model but an ordinary persondemonstrating the exercises diligently.

The video is just the right length, lasting 48minutes. Exercises are performed in differentstages (using the sofa, sitting, standing, and on thefloor) and in 24 different positions. Special focusis placed on proper breathing techniquesthroughout the programme. There is an instructionsheet enclosed with the video describing all theexercises, which you can take to your doctor forconsultation prior to starting the programme.

I found this non-complicated video quite good.Exercises are simple but effective and they areperformed in a calm, quiet way. Because they aresimple, they are easy to remember afterwards, soyou may not always have to use the video. Theinstructions sheet is enough. At the end of theworkout there is a 10-minute relaxation cool-down, which I found especially effective.

The exercise programme may be verybeneficial for persons with MS. It would begood for anyone for whom normal aerobicsvideos are too difficult or who has some kind ofmobility limitation. Unlike other exerciseprogrammes, it is also suitable for people inwheelchairs. I willcertainly recommendYoga for MS andrelated conditions to myMS Society and friends.

Mobility Limited 475Arbutus Avenue, MorroBay, CA 93442, USA.Tel.: +1 805 366 6038(USA: 800 772 9253)www.mobilityltd.com.Price: VHS $29.50, PAL$ 34.50

Subscriptions The Multiple Sclerosis International Federationproduces MS in focus twice a year. With aninternational cross-cultural board, easilyaccessible language and free subscription, MS in focus is available to all those affected by MS worldwide. To subscribe, log on towww.msif.org

With many thanksMSIF would like to thank Serono for theirunrestricted grant which made the production ofMS in focus possible

MS in focus

A new chapter has been added tothe International MS Nurse CarePlan – a comprehensive andpractical guide to the specialisedfield of MS nursing.

A group of world-renowned MSnurses convened in October 2004to finalise it and ensure that it wasdeveloped in accordance withcontinuing medical education (CME)

regulations and free of commercial bias.

This new chapter is focused on Treatment Optimisation.The introduction of the newer disease-modifyingtherapies have heralded a new era in the management ofrelapsing MS. However, ensuring optimal medical andhealth outcomes for patients using these therapiesdepends on various factors, including:

• patient appropriateness for and readiness to initiatetreatment

• treatment efficacy• monitoring and management of possible side effects • benefit-to-risk profile• the patient’s physical, cognitive, and psychosocial status

Since nurses are the main healthcare professionals tohave day-to-day contact with patients, they play a pivotalrole in identifying and overcoming problems and, thereby,help ensure optimal treatment outcomes. The newchapter outlines an evidence-based nursing approachthat is designed to guide and assist nurses through thisdemanding and long-term process of treatmentoptimisation.

Maria Grazia CalìSerono Symposia Internationalwww.seronosymposia.org

Skyline House200 Union StreetLondonSE1 0LXUK

Tel: +44 (0)207 620 1911Fax: +44(0)207 620 1922E-mail: [email protected]

www.msif.org

MSIF is a non-profit charitableorganization originally chartered in theState of Delaware, USA, in 1967.UK Registered Charity 1105321

msif5 05pp1-28 . english - ms international federation · ms-related fatigue and manage spasticity....

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