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Rehabilitation in Multiple Sclerosis

      Despite the lack of a definitive remedy for central nervous system demyelination in multiple sclerosis, certain manifestations of the disease are treatable. Recognition and identification of specific impairments, disabilities, and handicaps faced by the patient afford the physician the best opportunity to provide effective intervention. Impairments are ameliorated with difficulty; however, when comprehensive methods of rehabilitation are applied to the associated disabilities and handicaps, meaningful improvements can be achieved. The goal of rehabilitation in multiple sclerosis is to maximize the patient's physical, emotional, social, and vocational independence. Through the multidisciplinary efforts of numerous health-care workers in close cooperation with the patient and the family, this goal can be attained.
      Although the progressive demyelination of the central nervous system that occurs in multiple sclerosis (MS) is largely unresponsive to currently available therapy, other manifestations of the disease are treatable. To recommend an optimal plan of rehabilitation, the clinician must address the pertinent impairments, disabilities, and handicaps faced by the patient.

      DEFINITIONS

      Impairment, Disability, and Handicap

      As defined by the World Health Organization, impairment is “any loss or abnormality of psychological, physical, or anatomical structure or function.”
      • World Health Organization
      For example, if demyelination occurs in the motor pathways, spasticity can result. Even though the demyelination (the disease) cannot be treated, the spasticity (the impairment) can be managed by means of stretching exercises, medication, intramuscular neurolysis, and prevention of nociceptive input.
      When an impairment precludes maintenance of personal independence in self-care and other activities of daily living, the result is a disability. According to the World Health Organization, a disability is “any restriction or lack (resulting from an impairment) of an ability to perform an activity in the manner or within the range considered normal.”
      • World Health Organization
      In the aforementioned example, spasticity could produce a gait disturbance. If the spasticity (the impairment) cannot be minimized, the disability often can be minimized by use of gait aids, orthotics, and a wheelchair.
      The term “handicap” describes the situation in which a disability (or an impairment) precludes meeting responsibilities within one's social milieu. The World Health Organization states that “a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.”
      • World Health Organization
      Thus, the gait disturbance can prevent stair-climbing. If the patient works on the second floor of an office building without an elevator, the inability to climb stairs may result in loss of employment (a handicap). Provision of an elevator or relocation of the office to the first floor would remove the handicap without changing the disability.
      Therefore, function must be addressed through attention to specific impairments, disabilities, and handicaps. From the perspective of rehabilitation, however, a troublesome aspect of MS is the lack of a single or static lesion. Because the functional status of the patient with MS changes with exacerbations and remissions, function must be reassessed after each fluctuation in disease activity, and intervention must be altered to adapt to the changes.

      The Rehabilitation Team

      Comprehensive rehabilitative assessment and management are best provided through the multidisciplinary efforts of a neurologist, a physiatrist, a urologist, an orthopedist, a nurse, a physical therapist, an occupational therapist, a speech therapist, a recreational therapist, a neuropsychologist, and a social worker. Optimal care is achieved when each of these health-care professionals contributes unique knowledge and skills to the team.

      Education of Patient and Family.

      Both optimal planning of rehabilitation and optimal outcome necessitate the active and knowledgeable involvement of the patient and the family. The first step must be education. In a positive, yet honest, manner the physician should educate both the patient and the family about the basic pathophysiologic changes and the multifocal, intermittent, and potentially progressive nature of the disease. The physician then introduces the concept of the rehabilitation team and explains the roles of individual team members. The patient and family learn that, although the disease itself is not curable, the patient can develop behaviors that may help to avoid some exacerbations and that the rehabilitation team will assist in obtaining the training, equipment, and support necessary to minimize the manifestations of MS, if and when they occur.

      REHABILITATION FOR RELATED IMPAIRMENTS

      Spasticity.

      Even in the absence of appreciable weakness, the spasticity associated with MS can reduce energy, inhibit motor control, and interfere with self-care, sexuality, vocational responsibilities, and avocational pursuits. It can be mildly bothersome, or it can totally prohibit useful motor activity, but at times it is of some benefit. A weak patient may rely on spasticity to stabilize the limbs during transfers and ambulation. Because demyelination occurs throughout the central nervous system, spasticity may be the result of spinal or supraspinal lesions. A single treatment regimen is often inadequate, and the physician should identify the origin of the spasticity before initiation of intervention. The management of spasticity can conveniently be viewed as a hierarchy (Fig. 1), in which the clinician initiates management with easily administered and noninvasive modalities and subsequently uses interventions with greater potential risk as they become necessary.
      Figure thumbnail gr1
      Fig. 1Pyramidal approach to management of spasticity in patients with multiple sclerosis. Foundation is established first. Higher levels of intervention are used only when lower levels are insufficient.
      (From Merritt.
      • Merritt JL
      Management of spasticity in spinal cord injury.
      )
      Nociceptive input into the central nervous system augments spasticity. Consequently, management begins with general medical care to prevent or to treat urinary tract calculi and infection, decubitus ulcers, constipation, deep venous thrombosis, contracture, and other irritative conditions. The mainstay of management of spasticity is exercise. The patient and family are taught techniques, used twice daily, to stretch spastic muscles and to extend joints crossed by spastic muscles through a full range of motion. In addition to the prevention of muscle shortening and joint contracture, stretching presumably modulates spasticity by decreasing primary spindle afferent activity.
      • Merritt JL
      Management of spasticity in spinal cord injury.
      Cold, electrical stimulation, and inhibitive positioning are adjunct physical measures in the management of spasticity.
      Use of pharmacologic intervention is based on the origin of the spasticity and the presence of concomitant impairments. Baclofen, a derivative of γ-aminobutyric acid, provides both presynaptic and postsynaptic inhibition of monosynaptic and polysynaptic spinal reflexes.
      • Davidoff RA
      Pharmacology of spasticity.
      • Davidoff RA
      Antispasticity drugs: mechanisms of action.
      According to the manufacturer, however, it may be ineffective for spasticity of supraspinal origin. Baclofen is less likely than dantrolene to augment weakness and fatigue, and it has been found useful for treatment of spasticity of spinal origin,
      • Basmajian JV
      Lioresal® (baclofen) treatment of spasticity in multiple sclerosis: further experience with double-blind cross-over.
      • Feldman RG
      • Kelly-Hayes M
      • Conomy JP
      • Foley JM
      Baclofen for spasticity in multiple sclerosis: double-blind crossover and three-year study.
      • Sawa GM
      • Paty DW
      The use of baclofen in treatment of spasticity in multiple sclerosis.
      particularly in patients who already have difficulty with weakness or fatigue. The initial dosage of baclofen, which is administered orally, is 5 mg three times a day; this regimen is increased by 5 mg per dose every 3 days to a recommended maximum of 20 mg four times a day. Using the lowest dosage that yields an optimal response is suggested.
      Diazepam modulates spasticity primarily through spinal mechanisms.
      • Davidoff RA
      Antispasticity drugs: mechanisms of action.
      When used alone at a dose sufficient to decrease spasticity, however, it often worsens preexisting fatigue, cognitive impairment, and depression. It seems to be particularly useful when used in low dosages (1 to 5 mg three times daily) in conjunction with baclofen.
      Dantrolene is potentially useful as an antispasticity agent in MS; however, because it inhibits skeletal muscle contraction directly by blocking the release of calcium from the sarcoplasmic reticulum,
      • Pinder RM
      • Brogden RN
      • Speight TM
      • Avery GS
      Dantrolene sodium: a review of its pharmacological properties and therapeutic efficacy in spasticity.
      decreased spasticity often is accompanied by a proportionate increase in muscle weakness. Serious hepatic toxicity can occur, particularly in female patients and in all persons older than 35 years of age;
      • Joynt RL
      Dantrolene sodium: long-term effects in patients with muscle spasticity.
      therefore, use of dantrolene should be limited to special situations. It may be considered for younger male patients with spasticity not accompanied by severe weakness or for patients with severe weakness and no useful motor function when spasticity interferes with personal hygiene and positioning.
      Other pharmacologic agents have been reported to decrease spasticity—for example, phenytoin, carbamazepine, and the phenothiazines—through both spinal and supraspinal mechanisms. Generally, however, their effects are minor when they are administered in the small doses that produce no side effects.
      • Davidoff RA
      Antispasticity drugs: mechanisms of action.
      Recently, several new antispasticity agents have been described. Progabide, a γ-aminobutyric acid agonist, has been reported to decrease spasticity without associated weakness;
      • Davidoff RA
      Antispasticity drugs: mechanisms of action.
      • Rudick RA
      • Breton D
      • Krall RL
      The GABA-agonist progabide for spasticity in multiple sclerosis.
      unfortunately, hepatic dysfunction has been common in study participants.
      • Rudick RA
      • Breton D
      • Krall RL
      The GABA-agonist progabide for spasticity in multiple sclerosis.
      In two double-blind placebo-controlled trials, tizanidine, a new antispasticity agent with central effects, effectively decreased spasticity, hyperactive stretch reflexes, and clonus.
      • Rinne UK
      Tizanidine treatment of spasticity in multiple sclerosis and chronic myelopathy.
      • Lapierre Y
      • Bouchard S
      • Tansey C
      • Gendron D
      • Barkas WJ
      • Francis GS
      Treatment of spasticity with tizanidine in multiple sclerosis.
      It reportedly has less of a tendency than baclofen or diazepam to produce weakness, and it causes less drowsiness than diazepam. The Food and Drug Administration, however, has not yet released this drug for clinical use in the United States.
      When a selective decrease in spasticity is desired, intramuscular neurolysis (”motor point blocks”)
      • Halpern D
      • Meelhuysen FE
      Phenol motor point block in the management of muscular hypertonia.
      can be considered. During this relatively safe but tedious procedure, small amounts of a 5 or 7% phenol solution are injected percutaneously near small intramuscular motor nerves identified by an electrical stimulator. Although the effects last only until reinnervation occurs (a maximum of 6 months), sufficient respite is gained for stretching, splinting, and positioning so that lasting benefit may result. The procedure can be repeated without substantial risk.
      If spasticity remains a problem despite these measures and if contracture occurs, invasive and destructive procedures may be necessary. Percutaneous peripheral nerve, nerve root, or intrathecal phenol blocks, surgical neurectomy or rhizotomy, tenotomy, tendon lengthening, and myotomy all have been used to decrease spasticity and its sequelae. A report by Merritt
      • Merritt JL
      Management of spasticity in spinal cord injury.
      presents further useful information about the management of spasticity.

      Paresis.

      Paresis may occur in patients with MS as a consequence of several factors—motor pathway demyelination that results in upper motor neuron dysfunction, the added effort of moving against spasticity and ataxia, and disuse. Once spasticity has been minimized, as described in the preceding section, the physical therapist uses upper motor neuron reeducation techniques to facilitate voluntary motor activity while inhibiting unwanted motor patterns. Debate continues about the safety and benefit of muscle strengthening. Excessive muscle fatigue can result in increased paresis, increased body temperature, and ataxia.
      • Cailliet R
      Rehabilitation in multiple sclerosis.
      The increased body temperature usually associated with prolonged exertion leads to impairment of nerve fiber conduction in proportion to the degree of demyelination.
      • Schauf CL
      • Davis FA
      Impulse conduction in multiple sclerosis: a theoretical basis for modification by temperature and pharmacological agents.
      Yet, both selective strengthening of muscles innervated by the less involved or uninvolved upper motor neurons and improved cardiopulmonary function yield enhanced physical function with less effort and a greater sense of well-being. Selective and judicious muscle strengthening that does not lead to appreciable fatigue or increased core temperature seems warranted.

      Fatigue.

      One of the most common symptoms in the patient with MS is fatigue, yet it may be incomprehensible to the family. It is a complex combination of upper motor neuron weakness, spasticity, malfunction of demyelinated nerve fibers with exertion and increased core temperature, and, at times, depression. It spans the range from bothersome tiredness after effort to apparently spontaneous and overwhelming exhaustion that can prevent the completion of basic activities of daily living; Fatigue often becomes a self-fulfilling prophecy. The patient spends the first part of the day rushing to complete personal and family responsibilities before the dreaded exhaustion supervenes, and because of this overexertion, it does materialize. Management hinges on education of both the patient and the family, and it begins with “economy of effort” training with the occupational therapist, a type of energy conservation in which paced effort and energy-saving techniques are interspersed with intervals of rest. Warm ambient temperature should be avoided, cool baths and ice packs should be used when the patient is overheated, and air-conditioning is considered a medical necessity in all but the coolest climates. In a recent double-blind crossover study, amantadine administered orally at 100 mg twice daily was found to lessen fatigue substantially in some patients with MS.
      • Canadian MS Research Group
      A randomized controlled trial of amantadine in fatigue associated with multiple sclerosis.

      Ataxia.

      Ataxia, both midline and appendicular, is a common impairment, and attempts to ameliorate it directly are unlikely to be successful. Although traditional treatment has included attempts at reestablishment of efficient motor patterns by means of repetitive coordination exercises, improvement seldom is realized in the presence of progression of MS. Fatigue exaggerates ataxia and should be avoided. For appendicular ataxia, intervention is often directed at dampening the tremor by the use of small weights applied to the distal aspect of the extremity or use of weighted utensils. Weakness can augment the impairment and, in selected cases, proximal extremity bracing may lessen ataxia in distal segments during activities. Some patients with cerebellar postural and action tremor will respond to isoniazid at high dosages (300 to 400 mg three times a day).
      • Hallett M
      • Lindsey JW
      • Adelstein BD
      • Riley PO
      Controlled trial of isoniazid therapy for severe postural cerebellar tremor in multiple sclerosis.
      • Duquette P
      • Pleines J
      • du Souich P
      Isoniazid for tremor in multiple sclerosis: a controlled trial.
      • Bozek CB
      • Kastrukoff LF
      • Wright JM
      • Perry TL
      • Larsen TA
      A controlled trial of isoniazid therapy for action tremor in multiple sclerosis.
      The potential risk of hepatitis and the need for pyridoxine to prevent peripheral neuropathy must be considered.

      Sensory Deficits and Skin Care.

      No available intervention will decrease sensory impairment directly. Management includes augmentation of intact senses to replace lost sense of touch, temperature, and pain and prevention of complications such as pressure ulceration and thermal injury. The patient and the family are taught to inspect insensate skin twice daily for evidence of poorly fitting shoes, braces, or other equipment, to use a thermometer to monitor bathwater temperature, and to seek medical care immediately when dermatologic problems are noted. If buttock skin is insensate in a patient who uses a wheelchair, a pressure-distributing seat cushion should be provided, and the patient should be instructed to perform pressure-relieving weight shifts every 15 minutes. Sheepskin and water or foam mattresses may be used for protection of the skin.

      Pain.

      Pain is an inconsistent impairment in patients with MS. Its varied manifestations have been described as lancinating pain, painful dysesthesias, or aching. Attempts at relief include use of transcutaneous electrical stimulation, carbamazepine, and amitriptyline. The clinician should remember that the patient with MS can have a painful musculoskeletal and neurologic condition that is unrelated to the MS and potentially is correctable.

      Other Impairments.

      Impairment of vision is common in patients with MS. Diminution of vision may be partially ameliorated with corrective lenses, and all patients with MS who have complaints about visual acuity should have optimal ophthalmologic care. Those blinded by their disease should be referred promptly to Services for the Blind. Braille reading material, Braille typewriters, and Braille computer keyboards are available; however, in many patients with MS, their use is preempted by concomitant digital sensory loss. For diplopia, an eye patch is used to avoid the problem of double images; the patch should be alternated from one eye to the other every few days. Nystagmus is difficult to resolve. Cognitive and perceptual impairments (discussed elsewhere in this series) necessitate assessment through psychometric and functional testing for characterization of the deficits. After such an assessment, the intervention may include cognitive and perceptual training, task simplification, environmental manipulation, and vocational rehabilitation.

      REHABILITATION FOR RELATED DISABILITIES

      Communication.

      In MS, communication disability most often results from impairment of speech production and, to a lesser extent, from language and cognitive deficits. Nevertheless, only 10% of the patients with MS have disability severe enough to interfere with activities of daily living.
      • Kraft GH
      • Freal JE
      • Coryell JK
      Disability, disease duration, and rehabilitation service needs in multiple sclerosis: patient perspectives.
      Dysarthria, which may be ataxic, spastic, or mixed, should be evaluated by a speech pathologist to identify potentially remedial measures. Other approaches to management include decreasing the spasticity, minimizing the use of medications that cause dry mouth, and maximizing the patient's breathing capacity by achieving optimal pulmonary function through medical means, by diaphragmatic exercises, and by the use of an abdominal binder. When other methods fail to produce intelligible speech, use of electronic speech aids should be considered.

      Eating, Drinking, and Nutritional Issues.

      Demyelination within brain-stem pathways can result in dysphagia for liquids and solids and consequent malnutrition. Dietary counseling to identify foods and liquids of manageable consistency and adequate nutritional value is a necessity. Videofluoroscopy of the swallowing process may disclose deficits that are responsive to training. When oral intake is inadequate to maintain nutrition despite all efforts, a feeding gastrostomy or gastroenterostomy may be considered.
      In patients who do not have dysfunction of swallowing, obesity due to the combination of inactivity and excessive intake of calories can further hinder mobility that is already compromised by motor impairments.

      Hygiene.

      Adequate hygienic skills are necessary for the disabled patient to maintain self-image and health. The patient with MS without such skills has a considerable risk for irritative dermatitis, skin and urinary tract infections, and limited social interaction. Related factors include mobility skills, sitting and standing balance, fatigue, impairment of vision, and upper-extremity motor skills. Physical and occupational therapists often can train the patient in new skills, but adaptive aids and equipment are frequently necessary to substitute for lost abilities. A bath bench, shower chair, bidet, long-handled brushes, skin inspection mirrors, and electric razor may be helpful. The proper scheduling of a cool bath or shower also may help to minimize fatigue later in the day.

      Dressing.

      Dressing in street clothes is necessary to enable the patient with MS to enter the community, yet incoordination, spasticity, tremors, or weakness may make this task difficult or impossible. Clothes should be kept readily accessible. Lowering of closet rods, changing of handles on drawers, and even lubricating of drawer slides could be considered. Aids that may simplify the task of dressing include alternative clothing fasteners (Velcro closures, large buttons), elastic shoelaces, and long-handled shoehorns. When dressing takes a prolonged time despite these measures and thus causes overfatigue, assistance from family members or an attendant should be considered.

      Toileting.

      Bathrooms must be accessible to the patient with MS both at the doorway and at the toilet. With a wall-hung toilet, more room is available for a wheelchair. For the ataxic or weak patient, a raised toilet seat and grab bars are often needed. Bidet units can assist in hygiene when deficient hand motor skills preclude effective cleansing. If the bathroom is inaccessible, a bedside commode is preferable to a bedpan.

      Neurogenic Bowel.

      Stool incontinence and constipation are frequently experienced by the patient with MS. Dysfunction may be due to a spinal cord lesion, decreased activity, dehydration, medications, or nutritional factors; most often, it results from the additive effects of several of these factors. Intake of fluids should be adequate (see subsequent section on neurogenic bladder) but not excessive, or it will interfere with bladder management. A high-fiber diet, bulk formers, and stool softeners are useful for maintaining stool consistency, but the use of laxatives and enemas should be minimized. Bowel care should be performed every other day at approximately 45 minutes after the largest meal of the day, to take advantage of the gastrocolic reflex. Rectal evacuation may be augmented by use of glycerin or Dulcolax suppositories or digital stimulation. Prevention of problems is preferable to relying on only responding to them. Several weeks may be needed for the program to become effective. When severe problems are already present, use of laxatives and enemas may be necessary before institution of the bowel care program.

      Neurogenic Bladder.

      Bladder dysfunction occurs in many patients with MS. Initially, the dysfunction may be subtle, but careful questioning often reveals hesitancy, urgency, frequency, loss of sensation, incontinence, and retention. Questioning should be directed to a possible history of urinary tract infections and urolithiasis.
      In early stages of MS, urodynamic studies may disclose almost any combination of increased or decreased detrusor, bladder neck, and external sphincter tone, but the end-stage bladder generally is hyperreflexic in association with sphincter dyssynergia (sphincter contraction during detrusor contraction).
      The initial evaluation should include laboratory assessment of kidney function and a search for and identification of infection. Bladder-emptying function should be assessed with one or more catheterizations to measure the postvoiding residual urine volume. If emptying is sufficiently defective, excretory urography should be performed to evaluate the kidneys and upper urinary tract and to detect stones. Cystoscopy is used to search for outlet obstruction and bladder stones and to evaluate the anatomy of the bladder. Finally, urodynamic studies—including a cystometrogram for the measurement of detrusor contraction and intravesical pressure in conjunction with concomitant surface electromyographic monitoring of the muscles of the perineal floor (CMG-EMG), urethral pressure profile to monitor outlet resistance, and urinary flow studies—will identify the type of bladder dysfunction. During the CMG-EMG, the effect of abdominal tapping, Credé's maneuver, straining, and other therapeutic maneuvers on detrusor and sphincter activity can be determined.
      Management of the neurogenic bladder in patients with MS is summarized in Table 1. With minor dysfunction (postvoiding urine volume less than 100 ml), only regulation of intake of fluids and a schedule for voiding may be necessary to avoid overstretching of the bladder and to minimize urgency and frequency. If, however, the retained urine volume is high or detrusor-sphincter dyssynergia has been identified, intermittent catheterization is recommended. Unless contraindicated by weakness, ataxia, disturbance of vision, or cognitive dysfunction, the patient may be instructed in intermittent self-catheterizaton techniques. Bladder retraining, with use of tapping, Credé's maneuver, or straining, may be considered for selected patients.
      • Opitz JL
      Bladder retraining: an organized program.
      Table 1Management of Neurogenic Bladder in Patients With Multiple Sclerosis
      1.Regulated schedule of intake of fluids (1,800 ml/24 h):
       400 ml with each meal
       200 ml in midmorning (10 a.m.), midafternoon (2 p.m.), and late afternoon (4 p.m.)
      2.Regulated schedule of voiding:
       Voiding attempted every 3 hours during waking hours
      3.Intermittent catheterization after attempts at voiding:
       Catheterization every 6 hours, unless catheterized volumes exceed 500 ml, in which case catheterization every 4 hours until patient complies with the schedule for intake of fluids
      4.Suppression of urinary bacterial growth:
       Trimethoprim-sulfamethoxazole (1 double-strength tablet orally at bedtime)
       Methenamine hippurate (1 g orally twice a day)
      5.Instructions for intermittent self-catheterization, if necessary
      6.Bladder retraining in selected patients
      7.Indwelling catheter drainage, if necessary:
       Intake of fluids should exceed 2,000 ml/24 h
       No asymptomatic bacterial suppression therapy is used
       Catheter is changed every 2 to 4 weeks
      If the aforementioned measures are not possible, indwelling catheter drainage should be considered. Other indications for use of an indwelling catheter include a need for hygiene to alleviate pressure sores, lack of an attendant to perform catheterizations, travel situations in which catheterization is difficult, and severe incontinence unresponsive to other methods.
      Pharmacologic intervention is often used. In patients using intermittent catheterization or during bladder training, bacterial growth is suppressed by oral administration of trimethoprim-sulfamethoxazole or methenamine hippurate therapy.
      • Merritt JL
      • Erickson RP
      • Opitz JL
      Bacteriuria during follow-up in patients with spinal cord injury. II. Efficacy of antimicrobial suppressants.
      Because of the potential for development of resistant organisms, this suppressant therapy is not recommended for patients with long-term indwelling catheterization. Detrusor spasms and hyperactivity may be suppressed by using cholinergic blocking agents such as propantheline or methantheline. Oxybutynin has both anticholinergic and direct smooth muscle relaxant effects on the detrusor. The initial dosage usually is 2.5 mg twice a day, and the regimen can be increased to 5 mg four times a day. Detrusor tone can be increased by using bethanechol, but the absence of outflow obstruction must be substantiated. Bladder neck tone can be augmented by an α-adrenergic drug such as ephedrine or suppressed with α-adrenergic blocking agents such as prazosin or phenoxybenzamine. External sphincter tone can be decreased somewhat with baclofen.
      Persistent incontinence without outflow obstruction or high-pressure voiding can be successfully managed in male patients with use of a condom catheter. The penile skin must be carefully monitored for breakdown. A device suitable for female patients has not been developed.

      Mobility.

      Mobility is narrowly defined as ambulation, but it also includes bed activities, transfers, and wheelchair or automobile operation. Inability to move about in bed predisposes the patient to skin problems. Likewise, difficulties with achieving and maintaining a stable sitting position prohibit transfers and independence in many self-care activities. Failure to accomplish safe transfers compromises the independent use of a wheelchair, public transportation, and the toilet. The physical therapist should attempt to retrain the patient in bed and transfer skills. More severely affected patients, however, may require attendant care with or without the use of sliding boards, elevating seats, and mechanical lifts.
      In the National Multiple Sclerosis Survey Study, 60% of 122,873 patients reported the need for assistance with ambulation, and most of these patients relied on a wheelchair or another person's assistance; only a few used crutches or leg braces.
      • Baum HM
      • Rothschild BB
      Multiple sclerosis and mobility restriction.
      This finding emphasizes the problems of mobility faced by the patient with MS. For each patient, the available gait aids must be evaluated. Braces, crutches, canes, and walkers can be difficult to use, especially by a patient with problems of incoordination, ataxia, fatigue, or spasticity.
      Although, in comparison with walking, wheelchair independence is much more likely to be hindered by architectural barriers, it provides excellent mobility for the nonwalking patient. The wheelchair should be prescribed with specific features to meet each patient's needs. Manual wheelchairs often must have adjustable (elevating) removable desk arms, elevating swing-away leg rests, and back and seat supports. For patients with upper-extremity impairment, truncal ataxia, fatigue, or poor endurance, a motorized wheelchair may provide independence in mobility.
      In our society, full independence in mobility usually is not attained until independent motor vehicle operation is possible. Vehicle modifications may include hand controls and hydraulic lifts. Handicapped driver's evaluation and training are available through most comprehensive rehabilitation centers.

      REHABILITATION FOR RELATED HANDICAPS

      Physical or Architectural Barriers.

      The patient with MS who has severe lower-extremity weakness can achieve independence in mobility with a wheelchair. If the patient lives in a multilevel home or has a workplace that is approached by stairs, however, these barriers result in a physical handicap. Within the home, careful planning can provide level living and working spaces, doorways able to accommodate the wheelchair, a bathroom of sufficient size and efficient design to allow safe and independent toileting, and ramps of appropriate dimensions and construction for safe entry and exit. Apartments above the ground floor should have elevator access.
      Handicaps in the community are many and varied. The independent living movement
      • DeJong G
      • Lifchez R
      Physical disability and public policy.
      has contributed toward a heightened awareness of the needs of disabled persons by all Americans (and the world). It has been instrumental in the development of public policy to provide wheelchair accessibility to community resources such as government offices, restaurants, theaters, schools, and other public buildings and to public transportation, handicapped driver's training, motor vehicle modifications, and attendant and respite care for the disabled.
      The job, however, is not finished. The ultimate goal is coordination of services to bring together rehabilitation and governmental services, public and private service agencies, and the disabled community.

      Psychologic Barriers.

      MS can produce psychologic and intellectual deficits during a period of many years and thus can have a profound influence on the patient.
      • Peyser JM
      • Edwards KR
      • Poser CM
      Psychological profiles in patients with multiple sclerosis.
      By their attitudes, the patient, the family, and society may contribute added psychologic obstacles to optimal physical performance. For each patient, the psychologic deficit is related to the severity of the handicap in regard to personal values and perceptions in relationship to the rest of society. The affective and psychiatric aspects of MS have been apparent since Charcot's description in 1877.
      • Charcot JM
      Lectures on the Diseases of the Nervous System.
      Depression has been reported in a third of these patients and euphoria, in as many as two-thirds.
      • Rao SM
      Neuropsychology of multiple sclerosis: a critical review.
      According to Kraft and associates,
      • Kraft GH
      • Freal JE
      • Coryell JK
      Disability, disease duration, and rehabilitation service needs in multiple sclerosis: patient perspectives.
      some of the psychologic handicaps experienced by patients with MS are the complex interface with the medical system, the “wait and see” attitude for establishing a diagnosis, an unspoken message that “nothing can be done,” and the fluctuating disability in the presence of a chronic disease with no apparent respite. On the basis of these kinds of problems, the concept of “wellness” in patients with chronic illness has evolved. This concept is founded on the following principles: the motivation to find help is strong early in the course of the disease and fades with chronicity, a learning model of coping is established early, and early education and identification of available resources are beneficial.
      Interventions to promote realistic adaptations and to maintain the patient's self-esteem should be established promptly. The mechanisms may include stress management, family counseling, psychotherapy, and group sessions to provide emotional support, to decrease the sense of social isolation, and to increase social skills.
      Impaired cognitive function is possible. Although such impairment can occur early in the disease, it may not be detected on routine examination. Levels of neurologic involvement, physical impairment, and depression were not predictive of cognitive impairments in a study by Peyser and associates.
      • Peyser JM
      • Edwards KR
      • Poser CM
      • Filskov SB
      Cognitive function in patients with multiple sclerosis.
      Staples and Lincoln
      • Staples D
      • Lincoln NB
      Intellectual impairment in multiple sclerosis and its relation to functional abilities.
      identified problems with nonverbal learning and memory and suggested that when such difficulties are present, complex sequencing and practical demonstrations should be avoided. Instead, verbal instruction and memory aids such as prompt cards and checklists should be used.

      Social Barriers.

      Many problems stem from the fragmentation of the medical and psychosocial support systems, the difficulty with access to them, and the lack of coordination among these services. These issues should be managed in the setting of the home and in nonprofessional areas of the community where resources for the disabled are not a primary concern.
      • Slater RJ
      A model of care: matching human services to patients' needs.
      Better access for all disabled persons to education, employment, public facilities and services, transportation, and housing is needed for patients with MS to realize their rights as citizens more fully. The availability of these services is based on familiar civil rights principles, such as equal opportunity, nondiscrimination, integration, free choice, and self-help.
      • DeJong G
      • Lifchez R
      Physical disability and public policy.

      Vocation.

      The unpredictable nature of MS creates special problems for vocational rehabilitation. The disability can disrupt training, make placement difficult, and generally frustrate the process. Traditionally, vocational counselors have preferred to work with clients who have stable disabilities. Nonetheless, experience has shown that many persons with MS can benefit vastly from vocational rehabilitation services.
      Multiple Sclerosis: A Handbook for Rehabilitation Counselors With Emphasis on Prognostic Guidelines
      • Kraft GH
      • project director
      is a valuable resource for social and vocational workers. Prognostic guidelines have been developed to assist with planning. For patients who are 35 years of age or younger at the time of onset of symptoms, who have little deficit after an initial remission, and who have minimal pyramidal and cerebellar signs at 5 years, the prognosis for long-term employment is good.
      Frequently, the primary handicap to employment is not the disease itself but the attitudes of friends, families, employers, and society. Most patients with MS are employable. A third of those with MS are only mildly affected and should have little or no problem continuing normal activities. Another third are moderately affected and may need job modifications. A 60-year appraisal
      • Percy AK
      • Nobrega FT
      • Okazaki H
      • Glattre E
      • Kurland LT
      Multiple sclerosis in Rochester, Minn: a 60-year appraisal.
      of the resident population of Rochester, Minnesota, revealed that 74% of the patients with MS survived 25 years, in comparison with 86% of the general population. At the end of 25 years, a third of these patients were still employed and two-thirds were still ambulatory. The National Multiple Sclerosis Society has been active in working with employers, and brochures are available to answer common questions asked by employers.

      National Multiple Sclerosis Society, 205 East 42nd Street, New York, NY 10017. Available brochures: Workers with multiple sclerosis, EG 47-6/79-50 M; MSer's working—the working project: applying for a job; Who says MS patients can't work?; Affirmative action to employ handicapped people; How to accommodate workers in wheelchairs; Employment of handicapped people in leisure occupations; What every employer should know about MS

      Factors that should be considered are the distance from the parking area to the work site, architectural barriers, scheduling to provide rest periods and to avoid rush-hour traffic, and the availability of job-sharing. Some jobs can be performed in the home just as adequately as at the workplace, and such an accommodation can be more cost-effective.
      The Rehabilitation Act of 1973 (sections 503 and 504) states that companies that do business with the government or receive federal money must have an affirmative action plan and may not discriminate, in their hiring, against persons who are disabled. Employers have the responsibility of providing “reasonable accommodations” for the disabled.

      Rehabilitation Act Amendments of 1973, Public Law Number 93–112, Sections 502, 503, and 504, Code of Federal Regulations, 29 United States Code (29 USC 794)

      The patient with MS should be strongly encouraged to seek the assistance of a social worker or rehabilitation counselor to help with problems in evaluation, training, and work placement.

      Avocation and Leisure Counseling.

      Recreation away from home, work, or school is an expected part of life for many Americans. Recreation provides physical and mental stimulation, helps build a sense of self-worth, and promotes socialization, social relationships, and a feeling of acceptance. Through recreation, a family may share experiences. Leisure and recreation can be adapted to the needs of the patient with MS.
      Although for many years health-care personnel were opposed to physical activity for patients with MS, it is currently thought to be both appropriate and advantageous. The amount of exercise and the time of day when it is undertaken are important. Tolerance should be developed slowly, and the patient must be aware of increased body temperature and humidity. The potential beneficial effects of aerobic exercise on fatigue are being investigated in several medical centers. In one study, an aquatic fitness program resulted in improvements in strength, resistance to fatigue, and work capacity.
      • Gehlsen GM
      • Grigsby SA
      • Winant DM
      Effects of an aquatic fitness program on the muscular strength and endurance of patients with multiple sclerosis.
      Creative ideas are the key to a broad range of recreational opportunities that can provide self-expression and enhance the quality of life for the patient with MS as a result of active involvement in creative pursuits.
      • Kottke FJ
      Philosophic considerations of quality of life for the disabled.
      • Smith MB
      • Wolf BG
      Therapeutic recreation.
      Leisure assessment and recreational counseling are best provided by a recreational therapist with input from other members of the rehabilitation team.

      Sexuality.

      Sexuality is an important part of life, and it plays a major role in determining the self-assessment of a person. Lilius and colleagues
      • Lilius HG
      • Valtonen EJ
      • Wikström J
      Sexual problems in patients suffering from multiple sclerosis.
      reported that 91% of men and 77% of women with MS described changes in their sexual lives.
      Almost any aspect of the sexual response, from arousal to orgasm, can be affected by MS. Recommendations include attention to hygiene, appropriate bowel and bladder care, consideration of alternative positions, and topical anesthetics to prevent painful sensations. Injections of papaverine or penile implants may be considered for impotence. Physical change may be compounded by fatigue, weakness, stiffness, spasticity, contractures, and pain, all of which can render certain movements and positions difficult. Tremors or incoordination may make even simple or gentle movements awkward or impossible.
      Psychologic conflicts within a couple may develop from attempts at coping with the disease process and its associated disabilities, poor self-image as a result of loss of a job, divorce, or role reversal, and current societal views that equate sexuality with health and vigor. Social pressures can be exemplified by questions frequently asked by patients with MS: What social activities are available to me now that I cannot participate as I did when I was able? Who would want a long-term relationship with me? When should I tell the other person about my MS? Answers to such questions should be given considerable thought.
      • Kalb R
      • LaRocca N
      • Kaplan SR
      Sexuality.
      Childbearing and birth control are important issues. Fertility usually remains unimpaired in patients with MS, and decisions about birth control will need to be made, just as by any other couple.
      Professional counseling by a skilled social worker or rehabilitation psychologist will help to alleviate many of these problems. Sexual feelings and enjoyment can continue to be an important part of living, even if the mode of sexual expression must be adjusted.

      Quackery.

      Quackery exploits the mixture of guilt and hope that accompanies the terrifying sense of loneliness imposed by serious disease, particularly when neither cause nor cure is available. During the past half century, gold, snake venom, oil of evening primrose, megavitamin therapy, hyperbaric oxygen, and zinc, lecithin, and other nutritional supplements all have been offered as cures for MS.
      • Lee RV
      “It's better to be smart than dumb” or the clinical importance of ignorance.
      Hopes raised and subsequently dashed are a way of life for the patient with MS. Repeatedly, therapies described glowingly in early reports have ultimately proved to be worthless. The push to apprise the public about scientific advances poses a dilemma.
      • Palumbo PJ
      Transition: a new editor (editorial).
      Information presented in a promising light in the lay press may offer more benefit than the data actually support or the author intended. The patient with MS and the family members are vulnerable to “treatments” and “miracle cures”—blind hope overpowers reason.
      The physician must be sensitive and must understand the patient's needs from more than a purely medical standpoint. Similarly, the patient's responsibility must entail more than the search for someone who might restore health. The patient must be encouraged to be patient with the adversity and to avoid the “I will try anything” attitude. Well-meaning family, friends, and acquaintances will make many recommendations, and the physician should invite the patient to discuss these openly before seeking a promised cure.

      OUTCOME

      Because of the chronicity and variable course of MS, death is an inappropriate measure of outcome. Domiciliary assessment also is an ineffective measure in that the determination about whether the patient is institutionalized or lives at home is more often a function of the patient's available support system than of the patient's residual capacity. Although employment traditionally has been used to measure outcome, it is not a necessary prerequisite for a satisfactory quality of life. Consequently, as in other chronic and debilitating diseases, outcome in MS must be determined through an assessment of function.
      The optimal instrument for functional assessment is difficult to define, but certain desirable characteristics can be identified. For facilitation of comparison of various interventions within a single medical center as well as in multicenter studies, the instrument should have high intraexaminer and reliability coefficients and be amenable to identical application by each examiner and in each center. Therefore, definitions of and distinctions between categories should be clear (for example, descriptors such as “mild,” “moderate,” and “severe” should be avoided). The instrument should be sensitive to small changes, and each category of function should be independent of other categories (for example, a specific level of mobility should not be connected with a specific level of self-care or vocational function).
      Rehabilitative intervention without amelioration of the underlying disease process should be expected to have a greater effect on the handicap and disability than on the impairment. Any intervention that primarily treats the disease, however, should result in considerable reversal of the impairment, disability, and handicap. Thus, to distinguish change related to direct alteration of disease activity from change effected through rehabilitation measures, the impairment, disability, and handicap should be assessed independently. Any impairment should be evaluated through objective (and, when available, standardized) measurements. Disabilities and handicaps can be analyzed by using currently available functional scales.
      • Mahoney FI
      • Barthel DW
      Functional evaluation: the Barthel index.
      • Schoening HA
      • Iversen LA
      Numerical scoring of self-care status: a study of the Kenny Self-Care Evaluation.
      • Sarno JE
      • Sarno MT
      • Levita E
      The functional life scale.
      • Moskowitz E
      • McCann CB
      Classification of disability in the chronically ill and aging.
      • Granger CV
      Health accounting—functional assessment of the long-term patient.
      The most widely used functional assessment instrument specific to MS is the Kurtzke Expanded Disability Status Scale,
      • Kurtzke JF
      Rating neurologic impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS).
      a combination of impairment (findings on neurologic examination) and basic disability (mobility and self-care status) assessments. The Minimal Record of Disability for Multiple Sclerosis,
      which was developed to reflect standardized profiles of the main dysfunctions associated with MS, is based on the levels of dysfunction defined by the World Health Organization (impairment, disability, and handicap).
      What is the outcome of rehabilitation of patients with MS? Using a “MS Functional Profile” of their own design, Feigenson and co-workers
      • Feigenson JS
      • Scheinberg L
      • Catalano M
      • Polkow L
      • Mantegazza PM
      • Feigenson WD
      • LaRocca NG
      The cost-effectiveness of multiple sclerosis rehabilitation: a model.
      assessed the impairments, disabilities, and selected handicaps of 20 chronically disabled patients with MS before and after intensive interdisciplinary inpatient rehabilitation. Although no significant reversal of impairments was realized (an indication of no change in the underlying disease activity), statistically significant reversals were noted in many disabilities (balance, self-care, bladder control, bed mobility, wheelchair transfers, ambulatory transfers, and homemaking) and handicaps (performance of real-life activities). Because of current concern over medical cost-effectiveness, the related costs were also assessed. The annual cost of home aid services per patient was decreased from $25,909 before rehabilitation to $8,680 after rehabilitation. In fact, the mean cost of inpatient rehabilitation plus the subsequent home care for 1 year ($18,342) was less than the cost of home care before rehabilitation. The estimated mean annual nursing home costs for the same patients ranged from $18,250 to $36,500.

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