Increasing Physical Activity and Participation in People With Multiple Sclerosis: A Review

Accepted Manuscript Increasing Physical Activity and Participation in People with Multiple Sclerosis: A Review Deborah Backus, PT, PhD PII:

S0003-9993(16)30151-4

DOI:

10.1016/j.apmr.2015.09.027

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ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION

Received Date: 31 March 2015 Revised Date:

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Accepted Date: 10 September 2015

Please cite this article as: Backus D, Increasing Physical Activity and Participation in People with Multiple Sclerosis: A Review, ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION (2016), doi: 10.1016/j.apmr.2015.09.027. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Physical Activity in Multiple Sclerosis

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4 Deborah Backus, PT, PhD

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Director, MS Research

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Director, SCI Upper Limb Research and Translation Lab

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Shepherd Center, Atlanta, GA

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2020 Peachtree Road NW

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Atlanta, Georgia 30309

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[email protected]

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Increasing Physical Activity and Participation in People with Multiple Sclerosis: A Review

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Acknowledgements: This information has not been presented elsewhere and the author does not

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have any financial support to acknowledge.

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Corresponding author:

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Deborah Backus, PT, PhD

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Director, MS Research

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Director, SCI Upper Limb Research and Translation Lab

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Shepherd Center, Atlanta, GA

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2020 Peachtree Road NW

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Atlanta, Georgia 30309

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[email protected]

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ABSTRACT

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Multiple Sclerosis (MS) is a chronic, progressive disease of the central nervous system (CNS)

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affecting over 2.5 million people worldwide. Damage to neurons in the CNS causes a variety of

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sensorimotor and cognitive symptoms, such as fatigue, pain, spasticity, memory deficits, and

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impairment of mobility. Until the late 1990’s it was believed that symptoms of MS would be

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worsened with physical exertion, and people with MS were encouraged to limit physical activity

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and exertion. Not only has emerging evidence suggested that physical activity, including

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exercise, is safe for people with MS, there is also evidence that at least some of the disability that

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occurs after MS is due to secondary deconditioning from the sedentary lifestyle adopted due to

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the symptoms of MS, and not just CNS damage alone. Therefore, not only is physical activity

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safe, it is required for maintaining function and health in people with MS. The purpose of this

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paper is to review the unique physical and social barriers to physical activity in people with MS,

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including those with moderate to severe disability who use a wheelchair or scooter for mobility.

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We will discuss how existing guidelines for physical activity may not meet the needs of people

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with MS, and present evidence-based considerations for promoting physical activity in people

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with MS. Ultimately, the goal is to overcome the barriers to physical activity and improve health,

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participation and quality of life in people with MS.

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Key words: multiple sclerosis, physical activity, exercise

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Abbreviations

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MS

Multiple sclerosis

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ADLs

Activities of daily living

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SCI

Spinal cord injury

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EDSS

Expanded disability status scale

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28 Multiple sclerosis (MS) is a chronic, progressive disease of the central nervous system that

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affects over 2.5 million people worldwide. 1 Symptoms of MS can include any combination of

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weakness or paralysis, fatigue, pain, spasticity, and balance and walking dysfunction. Beyond the

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physical impairment, people with MS may also experience visual deficits, and learning and

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processing difficulties.2,3 While a number of disease modifying therapies exist to prevent relapses

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and to delay disease progression, many deficits remain that impair function and limit physical

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activity in people with MS.4

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Recent evidence suggests that up to 78% of people with MS do not participate in any meaningful

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physical activity at all.5,6 Moreover, physical activity declines as disability increases, 56-8, and

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people with MS who are more disabled, such as those who are non-ambulatory are at an even

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greater risk of inadequate physical activity.8,9

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Decreased physical activity in people with MS is perpetuated through a decrease in activities of

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daily living (ADLs) (e.g., grooming, dressing, and performing household chores) and physical

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recreational activities.10,11 Thus, people with MS are not getting the minimal amount of daily

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activity that even sedentary adults without neurologic injury or disease are able to achieve.11-13

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This vicious cycle of decline in mobility and activity leads to progressive deterioration in

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function and risk of secondary adverse health conditions, such as obesity, diabetes, and

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cardiovascular disease.14-16 Decreased physical activity leads to deconditioning, making

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participation in physical activity more difficult, which in turn exacerbates the inactivity.

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Decreased physical activity may ultimately result in apathy and depression,10 and reduced quality

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of life.10,17-20 The resulting decrease in function, participation, and work productivity, as well as

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increased medical needs, has been shown to create a large economic burden in the US 21 and

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Europe.22 Given that MS is the leading cause of disability in young adults, and that the life

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expectancy for people with MS approaches that of the non-disabled population,23 this reduction

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in physical activity is of significant social and economic importance.

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Emerging evidence suggests that physical activity can improve health, participation and quality

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of life in people with MS; how they can achieve adequate physical activity remains unclear.

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Even less clear is the distinction between “physical activity” and “exercise”. Physical activity is

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any activity that leads to energy expenditure, such as activities of daily living, or recreational and

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leisure activities; exercise is a form of physical activity that is intentional, structured and

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reoccurring. Anecdotally, there is a belief that any physical exertion is detrimental, and that

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exercise exacerbates symptoms and worsens function in people with MS.10,24,25 To the contrary,

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studies continue to emerge demonstrating that physical activity and exercise are actually safe and

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beneficial for people with MS.4,26-34 In fact, the positive effects of physical activity on

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maintaining function and health for the general population are similar for people with MS.

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Despite this evidence, however, recent studies still report that people with MS are not

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participating in adequate daily recreational or structured physical activities (i.e., exercise).5-11 In

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order to increase physical activity in people with MS, we must identify and understand the

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barriers people with MS face that prevent them from participating in meaningful physical

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activity of any sort.

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The purpose of this paper is to review the unique physical and social barriers to physical activity

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in people with MS, including those with moderate to severe disability who use a wheelchair or

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scooter for mobility. We will discuss existing guidelines for physical activity, and how these

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guidelines may not meet the needs of people with MS who are non-ambulatory. We will present

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considerations for promoting physical activity for people with MS based on existing evidence.

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Ultimately, the goal is to increase the awareness of issues related to inadequate physical activity

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in order to overcome the barriers and improve health, participation and quality of life in people

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with MS.

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Barriers to Physical Activity in People with MS

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The levels of inactivity in people with MS are likely the result of several variables, and not

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simply a lack of interest.10, 35-37 In fact, most people with MS believe they will achieve greater

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health and function if they participate in physical activity or exercise.10,38,39 In addition to the

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common barriers to physical activity found in the general population without disability, or with

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other types of disability, people with MS have other unique, and perhaps more significant,

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barriers with which to contend in order to maintain or increase their physical activity. Table 1

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provides a summary of these barriers.

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Mobility

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Impaired mobility, specifically the inability to safely and independently walk, is one of the most

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common problems in MS. About 85-90% of individuals with MS report mobility deficits,40-42

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which can start very early after disease onset.42-47 Most individuals with MS will eventually

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require assistance with mobility due to disease progression.40,41,49 In some cases this will mean

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the use of an assistive device, such as a cane or walker, and in others it will mean using a

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wheelchair or scooter for mobility. Walking difficulties are known to make accessing safe

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physical activities difficult; using a wheelchair or scooter for mobility further limits options for

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both structured (exercise) and unstructured (recreational or leisure) physical activity.10 In a

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recent study, people with MS reported that requiring assistance with mobility, such as with a

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wheelchair or a caregiver, often reduced their motivation for participating in physical activity.50

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In addition, they also reported that the difficulty of using a wheelchair led them to prospectively

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limit their activity in order to conserve their energy.10,42

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107 Fatigue

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People with MS report a need to conserve energy because fatigue is such a prominent problem in

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MS.10,51,52 One of the first symptoms of MS, fatigue is often also cited as the most common and

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disabling of MS symptoms.53,54 Even in those with no apparent disability, fatigue can have a

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tremendous impact on daily life.55,56 Physical activity, work productivity, and social interaction

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can all become limited simply due to fatigue. 55,56 In some individuals fatigue is associated with

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depression,57 and in others they experience muscle fatigue or an overall physical fatigue due to

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exertion. 55,56 Many describe fatigue as overwhelming sleepiness, or lassitude. 55,56 Some

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experience all of these types of fatigue.55,56 Musculoskeletal, cardiovascular and respiratory

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deconditioning can lead to decreased endurance and fatigue that is experienced by any

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individual, with or without neurological injury or disease, when they exercise. Fatigue is difficult

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to treat medically, and medications cannot address the deconditioning secondary to decreased

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physical activity in people with MS. There is compelling evidence suggesting that physical

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activity can actually decrease fatigue in people with MS,58-67 and potentially improve their

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QOL.18,68,69 Yet, even with this evidence, physical activity is limited in people with MS.

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123 Pain

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Over half of the people with MS experience pain as one of their most severe symptoms.70-72

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Similar to fatigue, pain in MS is not well-understood, and is often unpredictable in occurrence.72

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Pain and depression, either alone or when combined with fatigue, lead to decreased physical

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activity in people with MS who are ambulatory.74,75 Although studied to a lesser extent, evidence

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suggests that those with more severe disability and who are non-ambulatory often have greater

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difficulty with pain, fatigue and depression, and in turn, experience a more serious reduction in

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physical activity.75

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Heat Sensitivity

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Heat sensitivity is another poorly understood phenomenon experienced by some people with MS,

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and which can pose a significant barrier to physical activity.76-78, Many people with heat

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sensitivity, or intolerance, will experience a transient worsening of symptoms when their

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temperature is elevated.76-78 This may be due to hot or humid weather, a fever, or increasing their

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core temperature with activity. In some, their vision can become blurred, or they may experience

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increased fatigue and exacerbated weakness, or impaired balance, when they get overheated.77

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One hypothesis is that an elevated temperature impairs conduction of nerve impulses along the

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demyelinated nerve, leading to an increase in symptoms.77 Thus, concern about heat sensitivity

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may also limit physical activity in people with MS.

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People with MS also encounter environmental barriers above and beyond those common to

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people with other types of disability, in part due to the convergence of their impairments with the

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environmental barriers.42,80,81 For instance, distance to points of interest poses a problem due to

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fatigue and mobility impairments.

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Similar to those with disability due to other conditions, such as spinal cord injury, those who use

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a wheelchair face additional physical barriers, such as access to accessible equipment and

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activities.10,82 Weather-related issues (such as rain and snow, or excessive heat), child care and

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family issues, and work issues can be barriers to people with MS just as for people with other

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types of physical disability. 6,42 However, in MS, work issues can be complicated.83 On the one

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hand, if a person with MS is employed and works a full day, they may not to have enough energy

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to participate in physical activity at the end of the work day6,36 On the other hand, people with

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MS who are no longer able to work may experience financial burdens that limit their access to

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recreational and exercise activities.6,10.

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Self-efficacy

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Tremendous variability and unpredictability of symptoms is fairly unique to MS.84 Uncertainty

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about when and to what extent symptoms will return leads to a perception of lack of control,

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which ultimately can impact participation in activities in general. One outcome of this

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uncertainty is a decrease in self-efficacy, or a decrease in a person’s confidence about their

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capacity to undertake actions or behaviors.85 People with MS express a concern regarding their

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capacity, in that they do not know the extent to which they can exercise, how to manage fatigue,

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or how to overcome environmental barriers, for example.10 When someone with MS indicates

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they are lacking motivation for exercise, or are “too tired” to exercise, this in fact may be more

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complicated than for the general population. The lack of motivation may not simply be the result

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of being unable to prioritize exercise as important, lacking desire, or the inability to find an

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enjoyable way to get enough physical activity. Lack of motivation in MS may be due to

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combined decreased energy and fatigue, the need to conserve energy, environmental barriers,

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poor self-efficacy, and lack of knowledge, that together make overcoming barriers difficult and,

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at times, seemingly impossible.10 Decreased energy and management of inconsistent and

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unpredictable MS symptoms often result in a decreased desire to do anything in the home, at

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work, or recreationally, let alone partake in additional physical activities, such as exercise.42 The

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lack of self-efficacy and motivation, and poor perception of possible benefits have been shown to

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be barriers to physical activity, independent of severity of MS.35,38,39 Improving self-efficacy has

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been shown to increase physical activity amongst other patient populations with chronic

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conditions,85-87 and would likely be successful in people with MS.88-90 In turn, increasing

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physical activity has been shown to improve self-efficacy.91,92

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Knowledgeable Providers

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In a recent study, people with MS who primarily used a wheelchair for mobility reported that

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interactions with a knowledgeable healthcare provider was instrumental to their participation in

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physical activity.50 However, many reported that they are often challenged by the general lack of

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access to and numbers of knowledgeable healthcare, fitness and recreation professionals.10,93

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Healthcare and fitness professionals are not always aware of the extent to which fatigue can be a

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barrier, or about the heat sensitivity that some with MS can experience. On the other hand, some

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professionals may be too cautious when working with people with MS, still under the impression

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that people with MS should not exert any energy during physical activity. These professionals

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could benefit from more information about what is possible and appropriate for people with MS,

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and how to adapt activities to accommodate issues such as weakness, fatigue, and heat

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sensitivity.

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How Much Physical Activity is Reasonable for People with MS

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There are no specific guidelines for how much physical activity a person with MS should

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achieve. Clearly, striving for the 150 minutes a week of moderate activity would be a goal. But at

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what level can and should people participate in physical activities if they have MS? There are

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published guidelines about how much structured physical activity, or exercise, people with MS

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should strive to achieve. According to a recent systematic review,94,95 people with MS and mild

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to moderate disability, between 18 and 65 years of age, should perform 30 minutes of moderate-

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intensity (exercising at a self-perceived effort of 5 to 6 on a 1-10 scale) aerobic exercise and 30

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minutes of strength training exercise at minimum two times a week in order to improve fitness,

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participation and quality of life. However, Latimer et al. speculate that people with MS may

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actually require less activity than the recommended 150 minutes reported in their guidelines in

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order to achieve health benefits.94,95 Research in individuals with spinal cord injury (SCI) who

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primarily use a wheelchair for mobility suggests that due to the extent of their deconditioning

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and inactivity, they achieve health benefits with even less activity compared to able bodied

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individuals.96,97 Further research is necessary to determine what level of physical activity is

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critical for achieving and maintaining health benefits, and decreasing, or even halting,

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progression of disability, in people with MS. Finding a minimum level of activity to achieve may

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make participating in physical activity more feasible for people with MS.

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These guidelines as well as earlier98 guidelines come from evidence obtained in people with MS

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who are at least somewhat ambulatory, i.e. those with Expanded Disability Status Scale (EDSS)

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scores 0 to 7. In fact, the exclusion criteria for the studies that support these guidelines often

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eliminate those who are primarily non-ambulatory. People who are non-ambulatory and use a

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wheelchair or scooter for mobility need similar guidelines to determine the minimum frequency,

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intensity and duration of exercise to improve health and decrease the risk for adverse health

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conditions. Further research is necessary to provide evidence related to the amount and type of

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interventions that will enhance physical activity in people with MS who are non-ambulatory in

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order to establish these guidelines.

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Promoting Physical Activity for People with MS

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The evidence presented suggests that physical activity is safe and can improve some aspects of

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health and function in people with MS. Interventions have been studied within the confines of a

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lab or clinic, as well as in the community, and results suggest that people with MS may have a

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variety of options for partaking in physical activity and exercise. However, this evidence has

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been inadequate for promoting and increasing daily, real time, physical activity in the majority of

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people with MS. While it is known that behavior change requires knowledge,99-102 knowledge of

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the importance and benefits of physical activity has proven to be inadequate in people with MS.

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Much can be learned from literature in other populations with chronic disease issues related to

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what motivates people to change a given behavior, such as physical activity, and to maintain that

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behavior over time.101-103

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Evolving literature suggests that the strategies employed by people with other chronic conditions

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may be effective for people with MS. Behavior change requires not only knowledge, but also

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problem solving and self-efficacy, 99-102 which have been shown to be limited in people with

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MS.104 Self-efficacy has been shown to be a key determinant related to increasing physical

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activity in people with chronic diseases, such as aging, diabetes, heart disease.87,99,100,105 For

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instance, a wellness program might include an education session to help individuals with MS

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problem solve through anticipated barriers to exercise. This might include discussion of when

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during the day to exercise to minimize the impact of fatigue or heat intolerance, or walking in a

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mall where there are places to take frequent breaks, instead of walking on a treadmill or out on a

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track without seating options.

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Knittle105 has demonstrated that past experience, modeling, and subjective health also influence

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participation in physical activities in people with chronic disease. Put simply, whether a person

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exercised before they acquired MS can influence whether they will exercise when they know

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they have MS, regardless of the extent of their knowledge. Evidence suggests that enjoying

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physical activity, whether recreational or structured exercise, can increase participation in

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physical activity, even in people with MS.93,106 Furthermore, what other people are doing in

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relation to physical activity can influence whether a person with MS will participate.39,107-109

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Some people find that exercising with others who have MS is similar to attending an MS support

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group.39 Finally, one’s own perception of their health condition will impact their desire and

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ability to partake in physical activities. For instance, simply understanding the relationship

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between physical activity and energy level can increase physical activity in people with MS.36,37

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Smith et al.110 demonstrated that people who were aware of their body’s reaction to exercise felt

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more ownership related to their exercise, and had a more positive perception of the experience.

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Similarly, Plow et al.111,112 found that individuals who demonstrated confidence to overcome

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symptoms and positive coping styles engaged in more physical activity. Incorporating behavioral

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strategies like these outlined here has already been shown to increase physical activity in some

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people with MS.113-116

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Health care professionals, such as physical therapists and exercise specialists, can be

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instrumental in identifying and adapting physical interventions that are appropriate, safe and

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effective for people with any level of disability, and people with MS value this input.93,106

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Methods for managing concerns related to fatigue, heat intolerance, and the other impairments

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related to MS should be incorporated. Helping individuals with MS understand how to manage

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their symptoms should be a key component of any program or activity. Although not unique to

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people with MS, the choice of an activity should be individualized, based on the person’s

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preferences and goals.93,106 Offering an individual a choice has specifically been shown to be

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effective for improving motivation and adherence to exercise in people with MS.106 For instance,

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Suh et al.117 found that in a group of relatively inactive individuals with MS, those who used goal

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setting techniques to guide the physical activity plan reported more physical activity than those

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who did not.

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The majority of people with MS do not achieve the recommended amount of physical activity.

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Typical barriers that limit physical activity in other groups are not only present in this

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population, but are also confounded by the impairments specific to MS. People who are non-

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ambulatory due to their MS are at the greatest risk of decreased activity and therefore at an

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increased risk of developing adverse health conditions. If and how people with MS engage in

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physical activity is the result of a complex interaction between the course of the disease process

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itself; individual symptoms, characteristics and beliefs; accessibility of physical, emotional and

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social resources; and knowledge and experience of providers with whom they interact. Common

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impairments of MS that are made worse or exacerbated with physical inactivity can be decreased

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or alleviated with increased activity. Efforts should be made to develop low-cost, accessible,

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realistic ways for people to increase their physical activity.

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Overcoming the barriers to physical activity in people with MS will likely require a multi-tier

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approach (Table 2). Simply demonstrating the efficacy of various interventions will likely not

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lead to a dramatic increase in physical activity. Specifically, just because an individual has MS,

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and knows they should exercise does not mean that they will participate in physical activities or

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exercise. People with MS are likely not much different from the general population in that they

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face barriers related to desire and motivation, and personal resources, as described previously.

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Addressing these typical barriers as well as those specifically related to MS, in order to help

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increase physical activity in people with MS, will require a coordinated effort from medical,

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healthcare, fitness and recreational professionals, as well as the individuals with MS themselves.

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Only through this collaborative approach will we be able to succeed in finding ways to overcome

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the barriers to physical activity in order to facilitate better health, function, participation and

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quality of life in people with MS.

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123. Oken BS, Kishiyama S, Zajdel D, Bourdette D, Carlsen J, Haas M., ... & Mass, M. Randomized controlled trial of yoga and exercise in multiple sclerosis. Neurology. 2004; 62(11): 2058-2064.

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124. Velikonja O, Čurić K, Ožura A, & Jazbec SŠ. Influence of sports climbing and yoga on spasticity, cognitive function, mood and fatigue in patients with multiple sclerosis. Clinical neurology and neurosurgery; 2010; 112(7): 597-601.

678 679 680

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656 657 658

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Table 1. Barriers to physical activity unique to people with MS Examples Too hot to accommodate potential heat sensitivity; distance between parking and facility Cost of trained personnel who understand MS; Economic/cost many not employed Fear of relapse or worsening of symptoms; lack Emotional/psychological of self-discipline; lack of self-efficacy; social constraints; mood and depression; lack of motivation Accessibility of equipment No place to rest when fatigued Guidelines developed for people who are Use & interpretation of guidelines ambulatory and not those who are nonambulatory and require wheeled mobility (e.g., wheelchair or scooter) Access to appropriate information related to Information safe ways to participate in physical activity Medical and rehabilitation personnel not Professional knowledge, education and training educated re: physical activity requirements for people with MS Perceptions and attitudes of non-disable individuals Can’t “see” MS, so symptoms not apparent, and some do not understand fatigue or pain associated with MS Availability of resources Need for child care; lack of social support Fatigue and lack of energy; pain; heat sensitivity; Physical sensory changes and pain;

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Table 2. Summary Recommendations Relevant References

RI PT

91-93,99.100,107,110-115 91-93,99,100,107,116 50,93,106,107

93,106,107,123 25,50,90,114-123

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Strategies to increase access to and participation in physical activity for people with MS Assess self-efficacy for problem solving and confidence related to exercise Incorporate strategies and education to improve self-efficacy Identify and educate community health care providers to work with and facilitate physical activity in people with MS Provide peer support and community resources Develop low cost, affordable and accessible options for physical activity, whether recreational or structured Provide a variety of options for physical activity to meet the needs of more people with MS Build a collaborative team of individuals with MS, and other medical, healthcare, fitness, and recreational professionals to build programs and to conduct meaningful research related to physical activity in people with MS

25,50,90,114-123 50,93,106,107