A guide for people with ms

How to Choose the Mobility Device that is Right for You

A guide for people with ms

m a naging m ajor ch a nges

Jason (cover photo), diagnosed in 2005. Kim (top), diagnosed in 1986. John (second from top), diagnosed in 2001. Ray (middle), diagnosed in 2003. Michael (second from bottom), diagnosed in 2004. Ginny (bottom), diagnosed in 1990.

How to Choose the Mobility Device that is Right for You

A guide for people with ms

m a naging m ajor ch a nges

Consumer Guideline Panel Members

Ana Souza, MS Human Engineering Research Laboratories, Department of Veterans Affairs, Pittsburgh PA Rehabilitation Science and Technology Department, University of Pittsburgh, Pittsburgh PA Annmarie Kelleher, OTR/L, MS Human Engineering Research Laboratories, Department of Veterans Affairs, Pittsburgh PA Rehabilitation Science and Technology Department, University of Pittsburgh, Pittsburgh PA Rosemarie Cooper, MPT Human Engineering Research Laboratories, Department of Veterans Affairs, Pittsburgh PA Rehabilitation Science and Technology Department, University of Pittsburgh, Pittsburgh PA Lisa I Iezzoni, MD, MSc Harvard Medical School, Boston, MA Institute for Health Policy, Massachusetts General Hospital, Boston, MA Rory A. Cooper, PhD Human Engineering Research Laboratories, Department of Veterans Affairs, Pittsburgh PA Rehabilitation Science and Technology Department, University of Pittsburgh, Pittsburgh PA

This publication is supported by contributions to the National MS Society from its members and friends. Reviewed by members of the Client Education Committee of the National Multiple Sclerosis Society's Clinical Advisory Board.

? 2013 National MS Societ y. All rights reserved.

Contents

Who should read this guide?.............................................................................................................................2 Why is this guide valuable?................................................................................................................................2 What is multiple sclerosis?.................................................................................................................................2 What are common MS symptoms that affect mobility?.................................................................................3 What common MS symptoms can increase your risk for falls & decrease your independence in activities of daily living (ADLs)?.................................................................3 What types of assistive & mobility devices are available?..............................................................................4

Orthoses (braces)........................................................................................................................................5 Functional electrical stimulation (FES)......................................................................................................6 Canes.............................................................................................................................................................. 7 Crutches......................................................................................................................................................... 8 Walkers and wheeled walkers (rollators)................................................................................................10 Manual wheelchairs...................................................................................................................................11 Pushrim-activated power-assist wheelchairs (PAPAW).........................................................................14 Motorized scooters....................................................................................................................................15 Power wheelchairs.....................................................................................................................................17 What is involved in assistive technology service delivery?..........................................................................22 Who are assistive technology professionals?..........................................................................................22 What does a typical evaluation for a wheeled mobility device include?..............................................23 Where can I find an assistive technology professional?.........................................................................24 What can I do to prepare for a mobility device evaluation?..................................................................25 Final remarks.....................................................................................................................................................26 Notes..................................................................................................................................................................27

1 | How to Choose the Mobility Device that is Right for You

Who should read this guide?

nPeople with multiple sclerosis (MS) nFamily, friends, personal care attendants, and

others who help you with your personal care nMedical and rehabilitation providers

with whom you come in contact, including physicians, nurses, occupational therapists, physical therapists, rehabilitation engineers, and assistive technology suppliers n Anyone who is interested in learning more about mobility options for people with MS

Why is this guide valuable?

nEighty percent of people with MS experience problems with walking within 10?15 years of disease onset.

n Common symptoms of MS, including weakness (decreased strength), poor balance, spasticity (increased muscle stiffness or tone), and fatigue (feeling of tiredness), can increase your risk for falls.

nMany falls can be prevented with the use of the appropriate mobility device.

nSafety and independence can be enhanced with the use of the right mobility device.

nMobility devices can help to conserve energy and increase activity levels.

The purpose of this guide is to help you become familiar with the types of equipment (assistive and mobility devices) that are currently available to enhance your mobility, and the potential benefits and limitations of each one. The guide serves as a resource for you and your healthcare provider to assist you in choosing the right mobility device for you. We recommend that you take this guide with you to your appointment with your healthcare providers when looking for the mobility device that best meets your needs.

What is multiple sclerosis?

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. People with MS typically experience one of four disease courses -- relapsing-remitting, primary-progressive, secondary-progressive, or progressive relapsing -- each of which might be mild, moderate, or severe. Depending on the disease course a person has, symptoms can come and go, come and stay, or progress more steadily over time. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.

Managing Major Changes | 2

The National MS Society can help you find a physician and other healthcare providers with MS expertise in your area, answer your questions, and direct you to resources in your community. Call 1-800-344-4867 or email generalmailbox@ to connect with an MS Navigator?.

What are common MS symptoms that affect mobility?

Common symptoms of MS that can affect your ability to walk safely, independently, and efficiently include:

nMuscle weakness nPain nLoss of balance nPoor coordination n Numbness/tingling in your feet and legs nExtreme fatigue or feelings of tiredness nIncreased muscle tone or stiffness (spasticity) nImpaired vision n Cognitive difficulties

The course of MS is unpredictable and the severity of symptoms and the rate of progression vary from one person to another. For any given individual, symptoms can vary over the course of a day and from week to week or month to

month. The progressive nature of MS -- with exacerbations (also called attacks or relapses that cause a sudden onset of new symptoms or worsening of old symptoms) and remissions (in which symptoms return to their previous level or stabilize) -- may make it difficult to adjust to changes in your mobility. However adjusting to these changes is essential for your safety and comfort.

What common MS symptoms can increase your risk for falls & decrease your independence in activities of daily living (ADLs)?

All of the symptoms listed above can increase your risk of falls. Fatigue is one of the most common and disabling symptoms of MS. MS fatigue -- also referred to as lassitude -- is a feeling of extreme tiredness or exhaustion that can affect your physical and mental functioning. Approximately 80% of people with MS report having fatigue on a regular basis -- and this fatigue can directly affect your ability to walk and increase your risk of falls.

3 | How to Choose the Mobility Device that is Right for You

Falls can cause secondary problems such as bone fractures, hospitalization, and possibly increase your dependency on others. Having a fear of falling can limit your willingness to go out in the community independently, which can increase your frustration level and feelings of isolation, and put you at greater risk for depression.

Important:

If you are stumbling or falling, or have a fear of falling, you should contact your physician and request a mobility evaluation with a physical or occupational therapist. A careful evaluation will help determine whether the use of an assistive or mobility device might solve or decrease your risk of falling.

What types of assistive & mobility devices are available?

When rehabilitation with a physical or occupational therapist does not improve walking to a sufficient degree, mobility can often be enhanced with the use of a mobility device. Finding a mobility device that is suitable and appropriate to your particular needs is very important.

Without the proper devices, your mobility problems are likely to interfere with your participation in home, work, family, social and leisure activities.

A large number of assistive and mobility devices are currently available on the market. Your healthcare providers can prescribe the device(s) that best meet your needs. We will discuss the available options in order, starting from the basic, low-tech mobility devices, and leading up to the more advanced, hightech devices. This order does not necessarily reflect the order in which you might use these devices; a person with steadier disease progression may follow a similar order, while someone else might use different devices depending upon his or her activities at home, at work, or in the community.

nOrthoses (braces)

nFunctional electrical stimulation (FES)

n Canes

n Crutches

nWalkers and wheeled walkers (rollators)

nManual chairs

nPushrim-activated power-assist wheelchairs

nMotorized scooters

nPower wheelchairs

Managing Major Changes | 4

Orthoses (braces)

Orthoses -- or braces -- are available in many types and styles. An ankle foot orthosis (AFO) is the brace most commonly used to support the ankle and foot and prevent foot drop. Foot drop is a condition caused by weakness or paralysis of the muscles involved in lifting the front part of the foot during walking. An AFO helps to prevent tripping and falling by preventing the toe from dropping and catching on the floor, carpet, curb, or other obstacle -- thereby providing for adequate foot clearance when walking. Some AFOs are solid (see Fig. 1A and 1B) and some have ankle hinges to provide a different kind of support. AFOs are available in different materials (metal, plastic, or carbon fiber) and can be custom made for a more personalized fit.

It is very important that you receive a proper evaluation for any AFO -- by a physiatrist, physical therapist and/or an orthotist who is knowledgeable about MS.

Figure 1A: Post leaf spring AFO

Figure 1B: Carbon AFO

What are the benefits of using an AFO?

n AFOs are designed to support your ankle and foot when walking.

n AFOs help to maintain your ankles in a correct position.

n AFOs are worn inside of your shoe and, depending on the material from which they're construction, can be made to remain hidden from view.

What are the limitations of using an AFO?

n AFOs do not provide adequate support if you have weakness in your legs or poor balance when standing. In those situations, other types of braces may be needed.

n AFOs are often used in combination with another mobility device.

n AFOs cannot be made to fit all deformities of the ankle.

n AFOs will not fit into every pair of shoes you might want to wear.

5 | How to Choose the Mobility Device that is Right for You

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