msif 07 pp1-28 • english v2 · 2019. 1. 8. · progressive resistance. during the rehabilitation...

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MS in Focus Issue One • 2003

The Magazine of the Multiple Sclerosis International Federation

Issue One • 2002MS in focusIssue 7 • 2006

● Rehabilitation

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MS in focus Issue 7 • 2006

Editorial Board

Executive Editor Nancy Holland, EdD, RN, MSCN, VicePresident, Clinical Programs, National Multiple SclerosisSociety, USA.

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

Managing Editors Helle Elisabeth Lyngborg, MA, andCecilia Neher, MBA, Information and CommunicationsManager, Multiple Sclerosis International Federation.

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

MSIF Responsible Board Member

Prof Dr Jürg Kesselring, Head of the Department ofNeurology, Rehabilitation Centre, Valens, Switzerland.

Editorial Board Members

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

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

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

Kaye Hooper, BA, RN, RM, MPH, MSCN, Nurse ConsultantUSA/Australia.

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

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

Chloe Neild, BSc, MSc, Publications Manager, MS Society ofGreat Britain and Northern Ireland.

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

Copy Editor

Emma Mason, BA, Essex, UK.

MSIF leads the global MS movement by

stimulating research into the understanding

and treatment of MS and by improving the

quality of life of people affected by MS. In

undertaking this mission, MSIF will utilise its

unique collaboration with national MS

societies, health professionals and the

international scientific community.

Our objectives are to:

• Support the development of effective national

MS societies

• Communicate knowledge, experience and

information about MS

• Advocate globally for the international MS

community

• Stimulate research into the understanding,

treatment and cure of MS

Multiple Sclerosis International Federation

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Cambridge Publishers Ltd 275 Newmarket Road Cambridge CB5 8JE

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ISSN1478467X

© MSIF

Cover image by Chiara Provasi.

Courtesy of the Italian MS Society

From the Editor 3

An introduction to rehabilitation 4

Physiotherapy: 6its role in rehabilitation

Speech and swallowing 9

Occupational therapy helps to 12manage daily life

Help to stay at work: 14vocational rehabilitation

The role of counselling in 16rehabilitation

Your questions answered 18

MS in focus introduces 20Anders Romberg

The Italian MS Society meets 22peoples' rehabilitation needs

Results of the online survey 24

Reviews 25

Relevant references 26


ContentsMultiple sclerosis is a complex neurological diseasethat manifests itself in diverse, often co-existingsymptoms that affect a person’s mobility andfunctioning in daily activities, with the consequentnegative effect on self-esteem, family and socialroles and employment.

For many people with MS, pharmacological therapy alone is not able toaddress particular symptoms adequately or, in some cases, diseaseprogression. Rehabilitation is a component of the comprehensivemanagement of MS that focuses on function, and adds non-pharmacological strategies for the care of the person. The objectives ofrehabilitation in MS are to encourage autonomy and improve the qualityof life through goal-oriented programmes that directly involve theperson with MS in determining treatment priorities.

The foundation of an effective rehabilitation programme is the team,which includes the person with MS and the family, who work closelywith experts from a number of specialised disciplines, includingprofessionals knowledgeable in exercise, technical aids, speech andswallowing, vocational aspects and counselling. Working incollaboration, the rehabilitation team creates a plan, which includesshort-term and long-term goals, that meets the individual needs ofthe person with MS, taking into account his or her priorities, lifestyleand desires.

This issue of MS in focus discusses rehabilitation, a topic that isrelevant regardless of a person’s level of impairment or disease course.Each article presents the underlying principles, aims and evidence fromthe literature regarding specific areas of MS rehabilitation, contributedby members of teams from around the world.

On behalf of the Editorial Board, we hope that healthcare professionalsand people with MS alike find this issue an interesting and usefulresource.

I look forward to receiving your comments.

Michele Messmer Uccelli, Editor

The next issue of MS in focus will discussgenetics and the hereditary aspects of MS.Send questions and letters to [email protected] marked for the attention of MicheleMessmer Uccelli at the Italian MS Society, ViaOperai 40, Genoa, Italy 16149.

Editorial StatementThe content of MS in focus is based on professional knowledge and experience. The editors andauthors endeavour to provide relevant and up-to-date information. Information provided through MSin focus is not intended to substitute for advice, prescription or recommendation from a physician orother healthcare professional. For specific, personalised information, consult your healthcareprovider. MSIF does not approve, endorse or recommend specific products or services, but providesinformation to assist people in making their own decisions.

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Letter from the Editor

When I contemplate my multiple sclerosis (MS)practice, I am impressed that people with MSnever ask for help in preventing their T cellsfrom attacking the myelin of their centralnervous system. Rather, they ask for help inimproving their ability to function. Often, theyask for help in moving about. Frequently theyask if anything can be done to help themremember things better or feel less tired ordepressed. When asked, they often want helpwith bladder function, even though they may notvolunteer it initially.

Thus, people with MS desire rehabilitative care.Of course, they also want medicines to reduceexacerbations and prevent their disease fromprogressing. But it is improvement in functionthat is the major plea.

Yet rehabilitation has been slow in coming toMS care. Although now a focus of organisationssuch as Rehabilitation In Multiple Sclerosis(RIMS) in Europe and the Consortium ofMultiple Sclerosis Centers (CMSC) in theUnited States, this international effort is littleover 15 years old. One of the major reasons forthe delay in the application of rehabilitative careto MS is that the founder of the field ofrehabilitation medicine was reputed to havetaught that rehabilitation for people with MSwas essentially a waste of time and money;people with MS would progress in theirdisability, and all the effort would be for naught. Effort should be spent on more “static” disabilities such as spinal cord injuryand amputations.

Prior to the establishment of RIMS and the CMSC,there was a handful of pioneering comprehensiveMS centres in the United States. The National MSSociety (NMSS) was instrumental in this effort,and in 1977 it approached the University ofWashington to establish a comprehensive MScentre in Seattle. Other pioneering comprehensivecentres at that time also existed in New York,Minneapolis, Denver and Switzerland.

The comprehensive care of people with MS hasbecome more sophisticated over the years.Initially, around the time of the founding of theWashington centre, comprehensive care of MSconsisted of improving ambulation (using canes,braces, or wheelchairs) and, possibly, bladder andbowel function. This was the concept of“comprehensive” MS care in the 1970s, a periodthat I call Phase I.

Phase II occurred in the 1980s and 1990s withthe development of a greater appreciation of themany other systems affected by MS. It was duringthis phase that comprehensive MS care alsobegan to include attention to the management offatigue, depression, cognitive impairment andvocational matters, among others. Theappreciation of deficits in these and other areaswas followed by more sensitive means ofmeasuring them and improved approaches tomanagement. Rehabilitation of people with MShad come a long way.

However, I suggest that we are now entering athird phase: Phase III of comprehensive MS care.As we learn more about the inner workings of the


An introduction to rehabilitation

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By George H. Kraft, MD, MS, University of Washington, Seattle, USA

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thinking processes of people with MS usingqualitative interview techniques, and more aboutcompensatory brain function through functionalmagnetic resonance imaging (fMRI) studies, weare becoming aware of the intense effort putforth by people with MS to function as well asthey do and the role of brain plasticity in allowingthis to occur. Previously discrete regions of brainactivity become spatially arranged more diffusely– a necessity, as MS lesions destroy old neuronalpathways. This may account for the difficulty inmulti-tasking often seen early in the diseaseprocess. Consequently, we are now suspiciousthat isolated system testing – whether in themotor or cognitive sphere – may not give acompletely accurate assessment of function inthe real world in which some degree of multi-tasking is a prerequisite for success. I believe thatwe are scratching the surface in ourunderstanding of this at present.

This issue of MS in focus discusses rehabilitationof people with MS. The classical fields ofphysical and occupational therapy are reviewed,as is speech and swallowing therapy andcounselling. I am also pleased to see adiscussion of vocational issues, as this area ofrehabilitation is often overlooked, but can oftenbe one of the earliest casualties due to thedifficulty the MS person has with multi-tasking. Ithas been known for years that employment ratesfor people with MS are lower than what would beexpected. It may be that it is in the vocationalsphere that all of the deficits come together, andsome measure of vocational performance maybe a better single indicator of the severity of MSthan is the widely used Expanded DisabilityStatus Scale (EDSS).

Rehabilitation is what people with MS want. Thisissue provides a concise update.

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Physiotherapy: its role inrehabilitationBy Dawn Prasad, Physiotherapist, MS Society of Victoria, Australia

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Physiotherapy plays an important role in themanagement of MS. In the early stages followingdiagnosis, there is a strong emphasis oneducation and self-management with advice onwhen it is beneficial to request a physiotherapyassessment. The type of physiotherapy approachand the intensity of the therapy will varydepending on the needs of the person with MSand the findings of the physiotherapy assessment.People with MS do not require constantphysiotherapy input; however, there are benefitsto bursts of rehabilitation following a relapse or achange in functional capacity. Physiotherapytreatment may occur in a variety of settings suchas hospital rehabilitation units as either an in-patient or out-patient, or in the community. Insome countries rehabilitation at home is availableand may be organised by or through the nationalMS society.

Physiotherapy is beneficial in the treatment ofmany symptoms of MS and during rehabilitationthe physiotherapist will work with the person withMS to achieve functional goals. Some symptomshelped by physiotherapy, often in conjunction withother disciplines, are listed here:

Weakness is a major symptom of MS and leadsto a reduced ability in walking, standing andtransfers – as well as problems with daily livingactivities that involve the upper limbs.Physiotherapy techniques to improve strengthmay involve the physiotherapist handling theperson with MS to provide manual resistance formovements; examples include exercises using theweight of the body against gravity, or exercisesusing weights or elastic bands to provideprogressive resistance. During the rehabilitationphase, strengthening exercises are often focusedon regaining control of particularly weak musclesand correcting muscle imbalance to restorepostural stability.

Weakness is thought to be a factor in fatiguebecause weak muscles work less efficiently andtire more quickly – therefore strength traininghelps to reduce fatigue. Weakness also influences

balance and co-ordination and recent researchinto the benefits of strength training have shownimprovements with functional tasks.

Reduced motor control (or paralysis) of a leg oran arm may result from damage to the nervepathway supplying the muscles that control thelimb. Recovery of control will be dependent onwhere the damage occurs and the severity of thedamage. Physiotherapy may help restore lostmovement when there is still the possibility ofnerve impulses activating weak muscles. Ifrestoration of movement is not possible then thephysiotherapist may prescribe an externalorthopaedic appliance that helps the movement ofthe limbs (an orthosis) such as a foot splint toimprove walking.

Reduced balance occurs when there is aproblem with the vestibular system of the brain, orsensory losses, or weakness. Physiotherapists areskilled at assessing the contributing factors to thebalance problem and prescribing remedialtechniques. Education and promotion of somecompensatory strategies are often part of thesolution; for example, vision is very important forproviding additional information to the brain –therefore, putting on a light when getting up to goto the toilet at night, is very useful in reducing therisk of falling. People with MS who have impairedbalance should be assessed by a physiotherapist;without physiotherapy input people often adoptcompensatory strategies to reduce the risk offalls. Over time these strategies can lead to

Physiotherapy for people with MS• Comprehensive assessment of level ofimpairment due to MS

• Formation of functional and achievable goals

• Treatment

• Evaluation of response to treatment

• Education and promotion of healthy lifestyle

• Plan for follow-up rehabilitation

greater secondary problems, such as joint strain,increased fatigue, and muscle imbalance.

Spasticity is a symptom experienced by manypeople with MS caused by changes in the nerveimpulses to the muscles resulting in spasms andstiffness. Physiotherapists are involved in teachingpeople with MS and their carers stretching andpositioning techniques which help to relievespasms and prevent shortening in muscles thatare prone to spasms. Often, medication such asbaclofen or tizanadine is required to help controlthe spasticity and physiotherapists are importantin monitoring the effectiveness of the prescribedmedication over time.

Pain in MS may be related to the areas of thecentral nervous system that are affected, and iscommonly termed neurogenic or neuropathic pain;this is treated by the use of medication such asgabapentin. Other types of pain in MS may berelated to muscle spasms and joint strains andcan be treated by physiotherapy with success. Forpeople with limited mobility, it is important forphysiotherapists to assess the level of seating andpostural support required, and to provide advice onadequate pressure relief.

Tremor can be a difficult symptom that limitsfunctional ability. A variety of treatments may betried, including repetitive patterning movementswhich aim to improve co-ordination, addingweights to wrists to reduce the amplitude of thetremor, and education about positioning toincrease stability of the arm or leg.

Liaison with other disciplinesIdeally physiotherapists work closely with otherhealth professionals on the rehabilitation team.Often there is overlap, with functional goalsdirected by one discipline helping the goals ofanother discipline become achievable. A goodexample of close collaboration is whenphysiotherapists and occupational therapistsperform joint wheelchair and seatingassessments; the combined expertise of bothdisciplines ensures that postural needs, pressurecare needs and functional capacity are all metwithin the same assessment process.

Physiotherapists are responsible for promoting ahealthy and active lifestyle to people with MS tohelp reduce the impact of any relapses and topromote recovery. In the past, people with MSwere not encouraged to exercise, particularlythose with fatigue; however, more recent researchinto exercise has highlighted its positive effectsand found that fatigue is actually reduced by amore active lifestyle. For people who are nolonger able to exercise by themselves,physiotherapists have an important role inteaching carers how to perform regular stretchesand positioning techniques.

At the completion of an in-patient rehabilitation period,it is important for physiotherapists to provide a suitablehome programme or advice on suitable exercise andactivities to promote continued well-being.

The physiotherapist plays a primary role in acomprehensive rehabilitation programme.Physiotherapy is appropriate at different stages ofthe disease for people with various levels ofimpairment and can be effective for treating manyproblems due to or associated with MS.

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Physiotherapy is beneficial in the treatment ofmany symptoms of MS.

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Speech andSwallowingJeri A. Logemann, PhD, Ralph and Jean Sundin Professor, Department of

Communication Sciences and Disorders, Northwestern University, Evanston, Illinois, USA

Multiple sclerosis can cause speech and/orswallowing changes at various points in thedisease process, depending on the exact locusof damage in the central nervous system. Thegeneral approach to rehabilitation of speechand swallowing disorders in people with MS isto conduct a careful evaluation of eachfunction and then to design an appropriatetreatment protocol.

Speech evaluation generally involves anarticulation test in which a speech-languagepathologist asks the individual to producewords and sentences using all of the soundsof the person’s native language to assesswhether or not they are produced correctly.The pathologist defines the range of lip,tongue, soft palate, throat (pharyngeal) andvoice box (laryngeal) function, and evaluatesvoice quality, reflecting laryngeal function andpalatal movement and fluency of speech. He orshe examines the rate and rhythm of speech,since this is controlled by some parts of thecentral nervous system. Results of thisevaluation identify the muscles that are notfunctioning correctly and the exact nature ofthe abnormality.

Assessment of swallowing dysfunction usuallybegins by interviewing the person regardingtheir awareness of any disorders while eating

or drinking. A clinical assessment of theoropharyngeal area is important, and the rangeof motion of the lips, tongue, palate, andcontrol of the larynx are assessed. In addition,the speech pathologist notes any particulareating habits, such as putting the chin down orpushing hard while swallowing. It is importantto ask the person whether certain foods createmore difficulties than other foods and whetherswallowing is more difficult at various times ofthe day. At the end of this clinical assessmentof oral and pharyngeal function, a specialinstrumental examination may berecommended. If the speech-languagepathologist decides that there is risk of apharyngeal stage problem that is not visible onclinical assessment because the pharynx(throat) is invisible beyond the back of themouth, he or she may recommend an x-raystudy (modified barium swallow) or anendoscopic examination.

Modified barium swallow, a moving x-ray, isable to assess the function of muscles in themouth, pharynx, and larynx during the swallowand determine both the safety and efficiencyof the individual’s swallowing. Safety is criticalto ensure that aspiration, or food entering theairway, does not occur. Efficiency of eating isalso important, as people with MS must take inadequate fluids and calories in order to


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maintain weight and health. The modifiedbarium swallow is a simple procedure in whichmoving x-rays are taken while the individualcompletes two swallows of measured amountsof liquid: 1, 3, 5, 10 ml of thin liquids, cupdrinking of thin liquids, 3 ml of pudding, andtwo small pieces of a cookie or biscuit coatedwith barium pudding which the person chewsand then swallows. Fourteen swallows areusually visualised to assess swallow safety andefficiency. It is a simple test which takes lessthan five minutes of x-ray exposure. From thistest, the clinician can identify the swallowdisorders that are causing any difficulty. Whenthe cause of a disorder has been identified, theclinician can introduce treatment strategiesduring the x-ray study to document theeffectiveness of the treatments.

Treatments for swallowing difficultiesTreatments for swallowing difficulties(dysphagia) may include: 1) changes in heador body position to re-direct the flow of food,2) heightening sensation prior to the swallowto elicit a faster swallow, 3) applying voluntary

controls during the swallow to improveselected muscle functions, or 4) changing diettextures to reduce the risk of food going intothe airway or to improve the efficiency of theswallow. Changing the food consistency isgenerally the last choice, since people oftenfind it unpleasant to eliminate certain foodsfrom the diet or to thicken liquids. At the end ofthe x-ray study, the speech-languagepathologist writes a report that defines theswallow disorders present, the most effectivetreatments, and outlines atreatment/management programme.

Common swallowing disorders resultingfrom MS The most common swallow disorder occurringin people with MS is a delay in triggering thepharyngeal stage of the swallow. This disorderresults in food or liquid dropping into thepharynx before the pharyngeal motor actionshave begun, including protection of the airway.The person can aspirate and may not cough.Even patients with MS who deny anydysphagia may exhibit a delay in the swallow.

Parts of the body involved in speech and swallowing.

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Other swallowing problems include reducedlaryngeal elevation, which leads to reduction inopening of the valve into the oesophagus, andreduction in movement of the lowest part ofthe tongue, the base of the tongue, whichcauses food to be left behind in the pharynx.

Interventions for these disorders focus ontherapy to improve the triggering of thepharyngeal swallow by heightening sensationprior to the swallow, exercise programmes toimprove laryngeal lifting, and exercises toimprove tongue base action. Unfortunately,studies of the effectiveness of all swallow-related therapies in people with MS have notbeen done in large numbers of subjects. Theeffectiveness of treatment for an individual canbe done during the radiographic study byintroducing selected treatments and examiningtheir immediate effects.

Applicability/relevance of variousinterventionsFew studies have examined the effectivenessof treatment for speech and swallowingproblems in people with MS. Since there is noevidence that exercises can be harmful, it isnot uncommon for aggressive therapyprogrammes involving exercises to berecommended.

Working with other disciplinesSpeech-language pathologists often co-operate with a number of other disciplines inthe management of speech and swallowingdifficulties. Often, changes in head or bodyposition can facilitate swallowing or improvebreath support for speech production. Physicalpositioning may require intervention by aphysical therapist or occupational therapist inconjunction with the speech-languagepathologist. The old idea that swallowingrequired a specific posture with feet on thefloor and the trunk upright has been found tobe untrue. In fact, there are people whoactually swallow best lying down. Speech-language pathologists also interact with

nurses, nursing aides, and dietitians inpromoting an optimal diet and caloric intake.Collaboration with the individual, the family,nurses, physicians, and others on the careteam is critical to help the care team betterunderstand the nature of the individual’sspeech and swallowing disorders and todetermine the best ways to help promoteadequate oral intake as well as to maximiseoral communication. If alternativecommunication systems are needed due tospeech becoming difficult to understand, aspeech-language pathologist may recommendthe appropriate instrument and provide trainingin its use.

Speech and swallowing therapy can be criticalin achieving maximum function for the personwith MS, especially as the disease progresses.Regular reassessments may be needed as thedisease exacerbates or remits.

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Occupationaltherapy helps tomanage daily life

A compensatory rehabilitative approach canappropriately complement treatment withsymptomatic and disease-modifying therapies forpeople with MS. This process involves themodification of techniques and the development ofnew strategies to compensate for functionallimitations. Occupational therapy is an important partof this approach, and focuses on skills that areimportant for the “occupations” of daily life and onreducing participation restrictions and activitylimitations.

Evidence from the literatureThe role of occupational therapy in multi-disciplinaryrehabilitation is well acknowledged. However, themulti-disciplinary character of MS treatment means itis difficult to demonstrate the net effect ofoccupational therapy, as people receiving multi-disciplinary rehabilitation will be seen to benefit frominterventions from a variety of fields. While currentlythere is no reliable scientific evidence available thatoccupational therapy helps people with MS inmanaging their disease, it is likely that mostprofessionals and individuals with MS, based onexperience, do see benefit from occupational therapyinterventions. Small studies have found that fatiguecan be relieved using energy conservationtechniques.

Primary objectives and aims The primary objective of occupational therapy is toenable individuals to participate in self-care, work andleisure activities that they want or need to perform,thereby optimising personal fulfilment, well-being andquality of life. The occupational therapist evaluateswhether people with MS are limited in the lifedomains that are important to them (Figure 1) anddetermines strategies for overcoming thesedifficulties. Possible strategies include restoration,compensation, adaptation and prevention (Table 1).

InterventionsEvaluation is the first step in the occupational therapyprogramme. The therapist assesses the performanceskills in daily life activities, assesses general physicaland cognitive abilities, discusses personal goals andmay assess the home and work environments toevaluate the potential need for modifications.A customised occupational therapy rehabilitation

Communication is one life domain addressed byoccupational therapy.

Marijke Duportail and Daphne Kos,

National MS Centre, Department of

Occupational Therapy, Melsbroek, Belgium

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programme improves the individual’sability to perform daily activitieswithin his or her own uniquesituation, thus, often requiring acombination of different techniques.

Applicability at different stagesof the diseaseFor people in the early stage of MSwho experience changes in theirability to function effectively at sometasks, the occupational therapistfocuses on teaching new strategiesfor dealing with fatigue, informationabout home environmentadjustments, modifications to thecar or workplace as well as jobperformance. Energy managementcourses may also be mostappropriate at an early stage of thedisease.

If functional loss increases, theoccupational therapist assists theperson with MS in maintaining andimproving skills in different areas ofthe life domains. Depending on thefunctional abilities and needs ofthe individual, more attention may be focused oncompensation techniques in combination with adviceon obtaining an assistive device, as well as theopportunity to try out different devices and otheroptions to meet short and long-term needs.

Occupational therapy in the home Meeting the individual and the family in theirenvironment can provide the occupational therapist

with valuable information that maynot be readily available whenassessing the person within ahealthcare setting. The assessmentincludes an evaluation of theindividual’s current functional statusin relation to the performance ofactivities of daily living.

An assessment of the homesituation includes the evaluation ofthe need for assistive equipment andtraining. Finally, the occupationaltherapist’s visit to the home canserve to determine whetheradditional paid assistance may beuseful.

Working with other disciplinesCollaboration with professionalspromotes independence in all lifedomains. Occupational therapistswork with social services fororganising home visits, withphysiotherapists regardingfunctional exercises, with speechand swallowing therapists on issuesrelated to communication, with

nurses in performing evaluations and improvingperformance in activities of daily living and withneuropsychologists and speech therapists oncognitive training.

ConclusionOccupational therapy focuses on learningstrategies for managing daily life, based on theperson’s physical, social and psychological needs.

Table 1: Strategies used by occupational therapistsRestoration Maintain and restore maximum impaired functions

Compensation Providing alternative methods and techniques to maintain independence

Adaptation Advice and instruction on adaptive equipment and home adaptations

Prevention Prevent limitations in functional abilities or worsening of symptoms

(From Lanckhorst GJ, Rehabilitation of patients with multiple sclerosis. In: A Problem-Oriented Approach to Multiple Sclerosis, Acco, 1997.)

personal care:washing, dressing

domestic activities:cooking meals,

shopping, gardening

employment and education

recreation and leisure:sport, social activities,

hobbies

communication:writing, computer use

mobility:walking, using public

transport

Figure 1: Life domains


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Help to stay atwork: vocationalrehabilitationBy Phillip D. Rumrill Jr., Kent State University, Center for Disability Studies, Kent, Ohio, USA

People with MS constitute a valuable labourresource for the societies in which they live. Theyare often well-educated and skilled workers withextensive employment histories, which is notsurprising given that MS typically manifests itself inearly-to-middle adulthood (after people have begunand, in many cases, established their careers). Toooften, however, these highly trained, productive, andexperienced workers leave the work force shortlyafter MS diagnosis, usually of their own choosingand usually before the illness has rendered themunable to work.

Experts do not know exactly why so many peoplewith MS leave the work force prematurely, butsome of the most commonly reported barriers tocontinued employment among people with MSinclude the unavailability of transportation to andfrom work, difficulties in obtaining on-the-jobaccommodations, lack of awareness of assistivetechnology, limited awareness of employmentissues on the part of treating physicians,disincentives to work in government assistance programmes, the unpredictable andsometimes progressive nature of MS, andemployer discrimination.

Studies of people with MS show that men, peoplewith higher levels of education, people who do not

experience cognitive impairments, workers whosejobs require little physical exertion or exposure toheat, management or professional-level workers,and those whose employers have formal disability-related personnel policies are the most likely toretain employment over time.

Vocational rehabilitation provides a mechanism forpeople with MS to make adjustments in theircareers and to continue working as long as theywish to. The purpose of vocational rehabilitation isto provide services, supports, and training thatenable people with disabilities to obtain, maintain,and advance in jobs that are compatible with theirinterests, abilities, and experience. Early interventionis emphasised. For people with MS, that oftenmeans job retention services because the majorityof people with MS are working at the time ofdiagnosis. Career re-entry services such as jobplacement assistance and career counselling areoffered to people with MS who have left the workforce but wish to return to it. In both job retentionand career re-entry services, featured interventionsinclude a comprehensive evaluation of vocationalinterests and aptitudes, identification andimplementation of workplace accommodations,training in the use of assistive technology, self-advocacy training, and consultation with employerson a wide range of disability-related matters.

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Vocational rehabilitation is an interdisciplinaryenterprise that blends the expertise ofprofessionals in the fields of medicine, allied health,psychology, counselling, social work, engineering,technology, human resource development, and law.The person with MS plays a prominent role, as alldecisions regarding services are made in deferenceto the person’s stated goals and preferences.Abiding precepts in vocational rehabilitation are (a)that there is an inherent dignity in working, (b) thatpeople are better off working than not working, and(c) that disability in and of itself should not preventsomeone from working if he or she wishes to do so.All available evidence indicates that the onset ofMS or any other chronic illness rarely affectsvocational interests, that is, the field in which oneprefers to work.

MS may affect the person’s abilities in certain areas,in which case a premium is placed on modifying thejob that the person is accustomed to or findinganother job that is closely related to his or hercustomary occupation. Often, this modification ortransfer is accomplished through theimplementation of workplace accommodations,with employer co-operation.

For people with MS, the workplaceaccommodations that have proven effective inhelping them stay in the work force includeschedule modifications (the most common form of

workplace accommodation implemented on behalf of people with MS), memory aids to combat cognitive impairments, motorised scootersto combat fatigue and mobility problems, climatecontrol in the work station, low vision aids (e.g.magnification machines, voice output software),accessible parking, building renovations to allowfor wheelchair access, cooling vests, ergonomickeyboards, voice-activated computer programs,and telecommuting or home-based employment.In some countries, the employer is required to pay for needed employee accommodations. In others, government agencies and sometimesthe worker herself or himself assume the costs of accommodations.

Regardless of the country in which one lives,knowing the legal protections available to workerswith disabilities, the community services available,and the financial and other resources that canfacilitate continued employment is a critical factor inthe long-term vocational success of a person withMS. Even more importantly, maintaining an activeand effective symptom management regimen,identifying changes in one’s health status and jobperformance, generating solutions to disability-related problems at work, and advocating foroneself with employers to implement thosesolutions are the most powerful antidotes to thenegative impact that MS can and too often doeshave on a person’s career.

MS in focus Issue 7 • 2006B

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Counselling people with MS is more than justlistening and giving advice. It is a form of helpingan individual to deal with personal problemsrelating to the disease that is often absent fromconversations with family, friends and somehealthcare professionals. It is about providingsupport and helping people change, and notprimarily about promoting practical solutions.

A counsellor is not committed to a certain medicaltreatment policy, and therefore, aspects of dealingwith the disease can be discussed without directconsequences for treatment. Counsellors can alsobe helpful in shaping the style of living with MSaccording to the person’s wishes and needs. Anoptimal treatment programme for a healthcareprovider can be difficult and unsatisfactory for theindividual treated. A person with MS can oftenexert more influence on his or her life and diseasemanagement than he or she may think. Helpingpeople with MS realise their autonomy in decision-making is part of the counselling process.

The role ofcounselling inrehabilitationBy C.N. Tromp, Psychologist and R. Petter, Social Worker, MS Clinic, Groningen

University Hospital, Groningen, The Netherlands

Counselling for people with MSfocuses mainly on coping with theuncertainties and unpredictability ofthe illness.

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Aims of counsellingCounselling for people with MS focuses mainly oncoping with the uncertainties and unpredictabilityof the illness. Each person with MS, regardless ofthe type and course of the illness, must adaptcontinuously to changing symptoms and find waysto live with relapses and remission. Learning toassess the effects of these changes (bothphysical and cognitive) on daily life, settingpriorities for where energy should beconcentrated and recognising the need for newpriorities for activities and tasks, makingtherapeutic decisions, redistributingresponsibilities within the family, and makingvocational choices, are some of the importanttopics that can be discussed during counsellingwith a professional counsellor who has anunderstanding of MS.

After diagnosis, the need for information, adviceand reassurance, especially about the prognosisand therapy options, is foremost. Informationabout the illness, both from the medical side andregarding public resources, especially that takenfrom the Internet, can be evaluated andinterpreted, with particular reference to theperson’s own opinion about it, with the assistanceof the counsellor. When a person with MS is notfollowed and supported during this early period,dealing with the disease can be a lonely, isolatingexperience. A counsellor can be an importantresource during this time and at various timesthroughout life with MS.

Discussing difficult topicsNo one can read the minds of others, so the needto be specific and clear when communicatingabout personal and perhaps difficult subjectssuch as the amount of help and support that isrequired, can put a strain on relationships,especially when support needs may fluctuatefrom one day to another. This constant effort tobe both candid and tactful can be verychallenging and discouraging both for the personwith MS and those around him or her. Thesituation often creates a need for the person withMS to be outspoken and assertive in expressing

needs and desires with family members.Assertiveness that is appropriate for the situationand contexts may require practice. The counsellorcan play a role in helping the person rehearse and prepare discussions on difficult topics withfamily members and can provide encouragementand feedback.

Topics of counsellingUp to 50 per cent of patients with MS in therelapsing/remitting condition develop serious,and sometimes permanent psychologicalsymptoms. Prevention or management of thesesymptoms is another aim of counselling efforts.Psychological problems include depression,stress reactions and chronic fatigue. Cognitiveproblems can be a major concern, requiring anunderstanding of not only the individual, but alsoof those around the person with MS. Shifts in thecompetence and roles of parents or childrenwithin a family structure are sometimes difficult toaccept. For parents, dealing with therequirements of younger family members, whooften come home from school or work and expectattention and care, exactly at a moment whentheir parent is most exhausted, can be frustrating.Working out practical solutions can be part of thecounselling process.

Counsellors knowledgeable in MS can also havea role in working with children whose parent hasMS. Meeting with the entire family, with the childor children individually, as well as participating inthe development of programmes and activitiesorganised for children of people with MS, are allways in which a counsellor can help families todeal with the challenges of MS.

Counselling can be of value both for the personwith MS as well as for those who are close to theindividual who deal with MS in their personal lives– either directly or indirectly. Indications forcounselling include a broad range of subjects,which require close and timely co-operation withother professionals, including the nurse,neurologist and social worker, in order to be avaluable supplement to regular care.

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Q. My neurologist suggested that I beevaluated for an exercise programme that Ican do at home. Wouldn’t a more intensive, in-patient rehabilitation programme be moreeffective?

A. Studies have found some benefits for both in-patient and out-patient rehabilitation approaches.The most important aspect to keep in mind is thatthe frequency, intensity, and setting of arehabilitation programme must be based onindividual needs. A comprehensive evaluationprior to beginning any rehabilitation programmewill help to determine what is most appropriatefor you.

Q. If people with MS experience extremefatigue why would exercise be helpful?Wouldn’t it just worsen the fatigue?

A. Exercise can improve strength, stamina andcardiovascular fitness, as well as maintain ahealthy weight. If practised following some basicrules, these benefits can be achieved whileavoiding the negative effects of MS fatigue. It isalways important and helpful to consult aphysiotherapist to learn what types of exercise areappropriate for one’s capability and level offunctioning. Avoiding exercising in excessivelywarm places, taking breaks and drinking fluidsbefore, during and after exercise can all be helpfulstrategies in managing fatigue while exercising.

Q. I can walk without help for shortdistances, although I gradually becomeunsteady if I need to walk for an extendedperiod of time. In that case I hold on towhoever is with me for support. Myneurologist wants to refer me to anoccupational therapist for an evaluation of mywalking. I’m afraid that the therapist will tellme I need a stick or even worse. I can’t helpfeeling that it would be better if I kept on foras long as possible without an aid. It’s likeonce you start with a stick a wheelchair is justaround the corner. Plus, a stick is for theelderly and I’m only 35. Should I hold outlonger or give in?

A. Many people with MS may feel like you do,that accepting a technical aid is a form of “givingin” to the disease. It doesn’t help that our societyvalues health and fitness and that technical aidssuch as sticks, braces and wheelchairs are oftenseen as “symbols” of disability. Technical aids, aretools for maintaining independence that canpermit a person with MS to overcome dailydifficulties and to better manage MS symptoms,such as fatigue. In short, technical aids can helpyou to participate more easily in all of the activitiesthat you enjoy and that make up your life.

Your questions answeredReaders of MS in focus ask questions to the Editor, Michele Messmer Uccelli.

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On December 18, 2003, the EuropeanParliament approved a resolution on the rightsof people with multiple sclerosis, an importantachievement for the 400,000 people affectedby MS living in European countries. Among thestrategic points of the resolution is the call fora European Code of Good Practice, to beadopted in the different Member States.

The Recommendations on RehabilitationServices for Persons with MS in Europe, aninitiative of the European Multiple SclerosisPlatform (EMSP), with the endorsement ofRehabilitation in Multiple Sclerosis (RIMS), isan important step toward achieving this goal ofEurope-wide good practice.

The Recommendations are the final result ofan intense process that was begun in 2003 bythe EMSP with the involvement of theirmembership, 29 European MS societies, andthe support and contributions of individualRIMS members.

The first step to establishingRecommendations on Rehabilitation Serviceswas to assess the current availability ofrehabilitation services across Europe. NationalMS societies in 15 member countries of theEU, ten countries that entered the EU in May2004, and eight extra-EU countriesparticipated in the survey.

The survey included questions on severalaspects of health organisation specificallyrelated to rehabilitation, including healthcaresystem structures, specific legislation forpeople with disabilities, the availability of

information on MS within healthcarestructures and different rehabilitation services. In autumn 2003, a panel of 18 professionalsand experts from both Western and EasternEuropean countries, including individual RIMSmembers, drafted a document. This draft wasthen discussed at an international seminarattended by professionals and officersrepresenting rehabilitation centres and MSsocieties from 23 European countries, beforea final version was produced.

The EMSP assumes the importantresponsibility for the dissemination of theRecommendations to all its Member Societies,who, in turn, will make the document availableto people with MS and professionals. Mostimportantly, the Recommendations arespecifically addressed to policy makers whohave the opportunity and the responsibility forresponding to the needs and requests of allcitizens living with MS.

It is the intention of the EMSP that thisdocument be utilised as a lobbying tool atnational and European levels. TheRecommendations establish standards forrehabilitation services that people with MShave the right to access, regardless ofnationality.

The Recommendations were presented by theEMSP during the MS Information Hour in theEuropean Parliament on October 20, 2004.

For a copy of the recommendations, pleasecontact Christoph Thalheim at [email protected]

Recommendations on Rehabilitation Services for Persons with MS in Europe


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Anders Romberg is a physiotherapist at the MaskuNeurological Rehabilitation Centre (MNRC), whichis a facility of the Finnish Multiple Sclerosis Society,located near the city of Turku. Anders has twentyyears of experience in neurological rehabilitation.

Can you describe the MNRC?

The MNRC was founded in 1988 and has grownfrom 52 to 87 beds and from 32 to 120 staffmembers. Today 1,400 patients, of whomapproximately 1,000 with MS, are treated yearly inthe centre. The average length of stay is 21 days.The services offered by MNRC include in-patientrehabilitation only, with a special emphasis onadaptation training for newly diagnosed patientsand rehabilitation for individuals with significantimpairments. The MNRC also serves as aresource centre for people with rare neurologicaldiseases.

The work in the MNRC is based on an inter-disciplinary team approach. The staff (divided intopink, blue and green teams) includes threeneurologists, six psychologists/neuropsychologists, three social workers, twospeech therapists and a number of occupationaltherapists, physiotherapists and nurses all more orless specialising in neurological rehabilitation.

The vast majority of services provided at theMNRC are reimbursed by the Social InsuranceInstitution of Finland. The centre has had the ISO-9001 standard (SFS) certification since August

2002. In practice, this means that the quality ofthe work is continually evaluated, that the centrehas a staff person who is responsible for qualitycontrol, and that external audits are periodicallymade in order to assess the level of quality of theservices provided. For the individual patient thisoffers a guarantee of the provision of optimalrehabilitation services.

What are your role and responsibilities?

As a physiotherapist, I plan, perform and evaluatephysiotherapy programmes for individual patients.As a team member I also participate in admission,follow-up and discharge meetings together withother rehabilitation professionals.

I am also involved in research and have published anumber of scientific articles as well as a book (inFinnish) entitled MS and Exercise – Joy, Quality ofLife & Functional Ability (2005). My recentresearch interests include effects of long-termexercise on MS, and the effects of heat stress onfatigue and functional ability. Dr Juhani Ruutiainen,Director of the MNRC, and Päivi Hämäläinen,Director of Neuropsychology, are my primaryresearch collaborators.

In your experience, has there been anevolution in MS rehabilitation over the years?

Indeed. High-quality studies have shown thatrehabilitation can truly benefit people with MS andthat the effects can be long-lasting. It is difficult to

MS in focus introducesAnders RombergHelle Lyngborg interviewed Anders Romberg, physiotherapist-researcher from Finland,

about his work, his research and the important centre with which he is associated.

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estimate how much the scientific evidenceactually influences clinical practice, but what iscertain is that rehabilitation professionals havebecome more critical in the way they work. Thereis greater consistency in evaluation tools and theway rehabilitation outcomes are measured in MS centres.

We have seen an evolution in the treatment ofbladder problems with improved catheterisationtechniques. A better understanding of electricalstimulation and pelvic floor exercises, among otheraspects of rehabilitation, has meant that symptomimprovement is possible for many people with MS,thus, improving their quality of life.

There has been progress in understanding theneurophysiological basis for neurologicalrehabilitation in MS. Brain plasticity, the capabilityof brain structures to adapt to new situations andto build new networks, provides an exciting baseon which to build, providing evidence that researchin rehabilitation plays an important role.

What aspects does rehabilitation researchhave in common with other types of research,for example, with clinical trials, and how doesit differ?

In rehabilitation research in MS, different types ofstudy approaches and designs are needed tocapture the complex interventions, outcomes andhuman interactions that characterise most aspectsof rehabilitation. Descriptive or cross-sectionalstudies are useful to uncover frequent features inMS symptomatology that might be relevant for, ortaken into account when considering newtreatments. Qualitative studies are helpful inunderstanding the individual experiences ofrehabilitation (because so much of rehabilitation is based on individual face-to-face or hands-on contact).

Conducting a randomised clinical trial inrehabilitation is complicated. Randomising theparticipants to different arms of a trial without themknowing which treatment they are getting, and

including a placebo treatment, are difficult aspectsto overcome. There are also ethical considerationswhen randomly assigning patients to a less-than-optimal treatment (or no treatment) condition when we already know (presumably based onclinical experience) that a particular treatment isthe best option.

What impact does/can rehabilitation researchhave on people with MS?

In short, rehabilitation research improves care andtreatment for people with MS. For example, basedon our study results, physiotherapists at the MNRChave more precise knowledge about what shouldbe taken into account when planning homeexercise programmes for people with MS. Theresults have also provided support for improvingadherence to home exercise protocols.

Research also has the potential for demonstratingthe value of rehabilitation in MS. Financialresources are always limited and research isamong the best tools for showing thatrehabilitation is justified in such a complex andunpredictable disease as MS.

Anders Romberg, physiotherapist.

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BackgroundWhen the Italian MS Society’s in-homerehabilitation service was established in 1976 inGenoa, there were no services provided by theNational Healthcare System (NHS) that met theneeds of severely impaired people with MS whohad difficulty leaving their homes and who werethus not receiving services from which they couldbenefit. In addition, the NHS gave priority forrehabilitation to people in acute situations ratherthan those with a chronic illness. Also, the publicfacilities offering rehabilitation through the NHShad, and continue to have, limited hours thatpreclude many employed people with MS fromaccessing services.

The MS Society assumed all costs for the serviceuntil 1982, when the NHS officially recognised theimportance of in-home rehabilitation for manypeople with MS, in order to avoid lengthy hospitalstays and to reduce costs related to frequentlytransporting severely disabled individuals to arehabilitation facility.

Aims:• To offer rehabilitation services to people who

otherwise would not access these services due tothe seriousness of their condition, architecturalbarriers of the home or transportation difficulties.

• To provide a more flexible possibility for receivingrehabilitation services for people with MS who areemployed.

Marketing the serviceThe MS Society has information stands in the

major MS diagnostic and treatment centres whereinformation about the in-home rehabilitation serviceis provided.

Public health-related service providers often letpeople with MS know of the rehabilitation serviceand direct them to phone for further information. Thisserves to avoid a lengthy waiting period for receivingrehabilitation through an NHS facility.Regular information about the rehabilitation serviceappears in the MS Society’s magazine.Word-of-mouth has proven to be an efficientmarketing tool for the service as well.

Organisation of the serviceA social worker receives an inquiry from aninterested individual, explains all services available,attempts to understand the needs and interests ofthe person and determines if access to therehabilitation service is appropriate.

The team, consisting of a rehabilitation physician,nurse, occupational therapist, physical therapist,social worker and psychologist, meets with theindividual at the out-patient rehabilitation centre for acomprehensive evaluation. The initial evaluation mayalso be performed in the person’s home by the entireteam if it is impossible for the individual to reach therehabilitation centre.

The team determines whether the person isappropriate for rehabilitation, if rehabilitation can beprovided within the home (i.e. is the home the mostappropriate environment) and develops therehabilitation plan.

The Italian MS Societymeets peoples’rehabilitation needsBy Chiara Provasi, National Headquarters, Italian Multiple Sclerosis Society, Genoa, Italy

Services available through the in-homerehabilitation service include the following:• Physical therapy• Psychological support• Speech and swallowing therapy• Advice on technical aids and home modifications• Evaluation and training for the individual andfamily by the nurse

ResultsThe region of Italy covered by the in-homerehabilitation service has an estimated 1,500people with MS. The service currently follows 651individuals in their homes. Rehabilitation, supportand consultancy are carried out by 13 rehabilitationphysicians, 75 physiotherapists, two occupationaltherapists, six psychologists, one nurse, one socialworker and one administrator.

Expenses• Hourly fee for rehabilitation staff• Reimbursement for home visits that requireexcessive travel time

• Continuing education for staff• Administrative costs

Disadvantages of the service• May be difficult for rehabilitation professionals toreach some areas of the region served

• Can be a barrier to socialisation• Provides a “non-neutral” environment that

potentially can place the rehabilitation professionalat a disadvantage

• Creates difficulties for use of special equipment

Advantages of the service• Creates better opportunities for involving family

members in the rehabilitation plan• Training is performed in the person’s real-life

situation and not in an artificial healthcare setting• Allows significantly disabled individuals to receive

rehabilitation• Allows employed people with MS more flexible

access according to their individual needs, withoutthe necessity of taking time off of work

• Eliminates worsening of fatigue experienced bymany people with MS due to travelling, heat, waiting,and other negative aspects associated withattending an out-patient clinic

• Provides the ideal setting for testing of and trainingin the use of assistive devices

In-home rehabilitation, provided by professionals whoreceive specialised continuing education, can be animportant service for many people with MS. Whilethere are some disadvantages, the service has proventhat hospitalisation for rehabilitation is not necessaryin all cases, and so also serves to contain costs.

For more information contact Dr Maria Laura LopesDe Carvalho, Italian MS Society RehabilitationCentre at [email protected].

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Italian MS Society rehabilitation team in Genoa.


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One hundred and twenty seven people withMS responded to the survey, all of them haveparticipated or are currently participating in arehabilitation programme (i.e. a programmethat is based on evaluation andrecommendations by a rehabilitationprofessional).

Respondents reported that they accessedrehabilitation via both out-patient centres andclinics or through in-home rehabilitationprogrammes. Even though the programme couldinclude a number of different interventions, themost commonly reported areas werephysiotherapy and occupational therapy.Respondents accessed social or rehabilitativenursing, cognitive re-training and vocationalrehabilitation less frequently, perhaps indicatingthat the main focus of rehabilitation programmescontinues to be primarily the physical aspects of MS.

The box provides details on the interventionsmost frequently accessed by respondents.

Symptom management was the topic discussedmost frequently during rehabilitation, while issuessuch as housing, driving, relationships andfinancial planning received less attention.

Although many experts would agree that takingpart in a rehabilitation programme is an importantpart of the overall management of MS,consistent follow-up may be helpful in adjustingthe programme according to the person’schanging needs. This seems to be an important

area for improvement, since the majority ofrespondents reported that they did not receiveany follow-up or on-going physical training. Amajority of respondents felt that theirrehabilitation programme was too brief andtherefore not beneficial. Many reported thatimproperly managed fatigue during exercise,professionals lacking knowledge in MS and lackof benefit led to their dissatisfaction withrehabilitation overall.

The results show that although many people withMS do receive rehabilitation, it appears that itdoes not always meet their expectations. Studiesthat provide evidence for the most beneficialtypes, frequency and settings for rehabilitationcould contribute to improving satisfaction.Research in this field may also lead to thedevelopment of specific guidelines onrehabilitation in MS.

Results of the onlinesurvey on rehabilitation

Types of interventions

Physiotherapy 73 %Occupational therapy 34 %Psychology 17 %Rehabilitation of bladder, bowel and sexual disorders 10 %

Rehabilitation in speech, language and swallowing disorders 6 %

Vocational rehabilitation 6 %Rehabilitation nursing 6 %Cognitive re-training 4 %Social nursing 3 %

Responses to an online survey on the MSIF website (www.msif.org)have revealed what some of our readers think about rehabilitation.

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Book review: Occupational TherapyPractice and Research with Persons withMultiple SclerosisEdited by Marcia Finlayson, PhD, OTReview by Jens Olesen, PT, clinical supervisor,Master of Education, Denmark

The aim of this important book isto present current knowledgeabout different rehabilitationapproaches within the MS areafrom an occupational researchperspective. I was impressed bythe book and the editor’sopenness to offer us a more trans-

disciplinary approach to MS research, as well aspractice, in the world of MS rehabilitation. The book isessential reading for physicians, occupationaltherapists, physical therapists, nurses, psychologists,and other disciplines engaged in rehabilitation. Itpresents valuable tools and perspectives foreveryone working in MS rehabilitation.

Seven articles discuss different systematic researchmethods and ways of collecting and interpreting datain MS rehabilitation to supplement more biomedical-oriented approaches. In this respect the book alsoserves to bridge different research paradigms. Thetopics covered include: health-related service needsof older adults with MS; the differences in thesymptoms and functional limitations experienced bypeople with MS who are referred to occupationaltherapy compared to those who are not; the range offatigue assessment tools available for clinical andresearch applications; the effect of wheelchair use onquality of life, and the implications of tremor oneveryday activities; the development and use oflifestyle management programmes and copingprocesses used by women who are aging with MS.I highly recommend this book not only because it iseasy to read, but also because of the research that ispresented.

Publisher: Haworth Press, 2004 ISBN 0789023806, Price US$27.97

Website review: Abledata.comReview by Ian Douglas, International ProgrammeManager, MSIF, London, UK

Abledata.com is an US-basedwebsite that provides informationon assistive technology andrehabilitation equipment availablefrom domestic and internationalsources.

The website is easy to use, and simply set out with noirritating “pop ups” or other complications which canslow the downloading of web pages. It has four mainsections. The first, “Products”, lists web links forsuppliers of products in categories ranging from“Architectural Elements” to the “Workplace”. As ameasure of the comprehensive nature of the site’sdatabase, the section on “Wheeled Mobility” has eightsub-sections with, for example, 354 links under“Powered Wheelchairs” and a further 483 links in the“Manual Wheelchairs”.

In addition to the main section on products,Abledata.com has a detailed “Information Centre”which provides all the “Internet resources known to uson a selected disability issue – all on one page”. Thissection looks further than just products or aids, andgives links to (US-based) support and campaigningorganisations, as well as a number operating at theState level. It also lists online publications and relatedconferences and other events.

Finally, one of the other four main sections,“Consumer Forum”, appears less well serviced than the other sections, though this does not reallydetract from the usefulness of the othercomprehensive listings.

The site has a useful internal search engine (it wouldbe unwieldy if it did not) and the option to register andsign up for email updates. In summary, a useful ifunexciting site, primarily for those based in the US,with more limited use for those in other countries forobvious reasons.

Reviews

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Physiotherapy Patti et al (2002). The impact of outpatientrehabilitation on quality of life in multiplesclerosis. Journal of Neurology, 249:1027–1033

Kileff and Ashburn (2005). A pilot study ofthe effect of aerobic exercise on people withmoderate disability multiple sclerosis.Clinical Rehabilitation, 19: 165-169

White L J (2004). Resistance trainingimproves strength and functional capacity inpersons with multiple sclerosis. MultipleSclerosis, 10: 668 - /674

Occupational Therapy Mathiowetz V, Matuska K M, Murphy M E(2001). Efficacy of an energy conservationcourse for persons with multiple sclerosis. Archives of Physical and MedicalRehabilitation, 82: 449-456

O'Hara L, Cadbury H, De S L, Ide L (2002).Evaluation of the effectiveness ofprofessionally guided self-care for peoplewith multiple sclerosis living in thecommunity: a randomized controlled trial. Clinical Rehabilitation, 16: 119-128

Steultjens E M, Dekker J, Bouter L M, Cardol M,Van de Nes J C, Van den Ende C H M (2003).Occupational therapy for multiple sclerosis(Cochrane Review). In: The Cochrane Library,Oxford: Update Software, Issue 3, 12p

Tipping L (1994). Multiple Sclerosis. In: TurnerA, Foster M, Johnson S E (eds) Occupationaltherapy and physical dysfunction, New York:Churchill Livingstone, pp. 497-512

Video/DVD review: Serenity In Action– Tai ChiReview by Razia Mohamedali, Kenya

This is a very interestingvideo of about 30 minutes.

The exercises are relativelysimple and easy to follow,with the exception of SectionThree, where the movementsare a bit difficult to follow,especially if the person doingthem has the common MSproblem of incoordination.

People with MS should not despair if unable todo them the first time as things will improve withregular practice. They are also not strenuous andtherefore very “MS friendly”. Some of theexercises are specifically aimed at improvingbalance, which is quite a problem for people withMS and should be of help.

The movements are demonstrated by theparticipants and are also shown from thewheelchair position.

Unfortunately, specific instructions to help youcarry out the exercises (such as how to breatheproperly) appear at the end of the video ratherthan before the exercises begin. My advice tothose planning to buy this video is: be sure towatch the entire video before beginning toperform the exercises in order to benefit fullyfrom them.

This video was produced by Qi TherapyProduction and is priced at US$24.95 (retail).

It can also be ordered from P.J. Klein, P.T. EdDat the following address:Qi Conceptsc/o Bill Adams Martial Arts and FitnessCenters3211 Transit Rd, Elma, NY 14059, [email protected]: +1 (716) 668-5004

Relevant

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Duportail M (1997). Technical Appliances,assistive and adaptive equipment. In: Ketelaer P,Prosiegel M, Battaglia M, Messmer Ucelli M (eds).A Problem-Oriented Approach to MultipleSclerosis, Leuven/Amersfoort: Acco, pp 329-331

Lanckhorst G J (1997). Rehabilitation of patientswith multiple sclerosis. In: Ketelaer P, Prosiegel M,Battaglia M, Messmer Ucelli M (eds). A Problem-Oriented Approach to Multiple Sclerosis,Leuven/Amersfoort: Acco, pp 15-17

Speech and swallowing Abraham, S A, & Yun, P T (2002).Laryngopharyngeal dysmotility in multiplesclerosis. Dysphagia, 16: 69-74

Calcagno P, Ruoppolo G, Grasso M D, DeVincentiis M, Paolucci S (2002). Dypshagia inmultiple sclerosis. Acta neurologicaScandinavica, 105: 40-43

Fabiszak A (1987). Swallowing patterns inneurologically normal subjects and two subgroupsof multiple sclerosis patients. Unpublisheddissertation. Northwestern University

Logemann J A (1993). A manual forvideofluoroscopic evaluation of swallowing (2nded), Austin, TX: Pro-Ed

Logemann J A (1998). Evaluation and treatmentof swallowing disorders (2nd ed), Austin, TX: Pro-Ed

Wiesner W, Wetzel S G, Kappos L, Hoshi M M,Witte U, Radue E W, Steinbrich W (2002).Swallowing abnormalities in multiple sclerosis:Correlation between videofluoroscopy andsubjective symptoms. European Radiology, 12:789-792

Vocational rehabilitationRumrill P, Roessler R, Fitzgerald S (2004).Vocational rehabilitation-related predictors ofquality of life among people with multiplesclerosis. Journal of Vocational Rehabilitation,20(3): 155-163

Rumrill P, Roessler R, Vierstra C, Hennessey M,Staples L (2004). Workplace barriers and jobsatisfaction among employed people withmultiple sclerosis: An empirical rationale for earlyintervention. Journal of VocationalRehabilitation, 20(3): 177-183

Roessler R, Rumrill P (2003). Multiple sclerosisand employment barriers: A systemic approach.Work: A Journal of Prevention, Assessment,and Rehabilitation, 21(1): 17-23

Roessler R, Rumrill P, Hennessey M, Vierstra C,Pugsley E, Pittman A (2003). Perceivedstrengths and weaknesses in employmentpolicies and practices among people withmultiple sclerosis: Results of a national survey.Work: A Journal of Prevention, Assessment,and Rehabilitation, 21(1): 25-36

Rumrill P, Hennessey M (2001). Multiplesclerosis: A guide for health care andrehabilitation professionals, Springfield, IL:Charles C. Thomas

Counselling Chan A (1999). Review of commonmanagement strategies for fatigue in multiplesclerosis. Int J. MS Care, 2:13-19

Sadovnick A D, Remick R A, Allen J, Swartz E,Yee I M, Eisen K Farquhar R, Hashimoto S A,Hooge J, Kastrukoff L F, Morrison W, Nelson J,Oger J, Paty D W (1996). Depression andmultiple sclerosis. Neurology, 46(3): 628-32

references

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

Serono is the third largest biotech company in the

world. Our products are sold in over 90 countries

world-wide. We have been active in the fight against

Multiple Sclerosis (MS) for almost a decade and have

a fundamental long term commitment to people with

MS, by bringing new, innovative and effective

treatments in this area. Serono is dedicated to

enhancing patient care and management by

constantly improving our patient services. Through

pharmacogenomics, we are active in the research

towards understanding the genetic basis of MS.

Serono is committed to constant research and

discovery efforts as we look for even better therapies

and hopefully, one day, a cure.

www.serono.com

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

www.msif.orgMSIF is a non-profit charitableorganization 501(c)(3) IRC chartered inthe State of Delaware, USA, in 1967. UKregistered charity 1105321.

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