Maintaining independence 
The role of the physical therapist 
Leg braces 
Head and neck support 
Hand support 
Transportation issues 
As your leg weakness progresses, your health care team may recommend equipment known as ambulation aids and bracing to help you with walking. Other devices can help give you needed support as the muscles in your neck and arms weaken. The specific aid or device that’s best for you depends on the extent of the weakness and your willingness to use such a device.
The use of an ambulation aid doesn’t mean you’ve given up. On the contrary, it means that you want to remain independent and mobile as long as possible. Braces, canes and walkers can help you continue to walk some of the time or in certain environments while greatly reducing the fatigue and the risk of falling that walking may bring.
Doctors advise that it’s important for you to continue to walk as long as doing so is safe and you’re confident that you won’t fall. For some, this means having an attendant or using an assistive device when walking short distances and a wheelchair when traveling longer distances. For others, it means walking more slowly and resting frequently during normal activities, and using a wheelchair only for long distances.
Your physical and occupational therapists, along with a specialist in bracing called an orthotist, can show you the available options and how to use them. Your doctor or PT probably will suggest when it’s time to begin thinking about ambulation aids, and then you’ll want to call on these specialists to help you decide which device to use. (See Chapter 1  for a description of the role of the occupational therapist.)
An orthotist can help you fit any of the braces described in this chapter, but you’ll need a PT or OT to advise you on which type is best and how and when to use it.
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A physical therapist is a gross motor movement specialist — someone trained to help you perform activities that use major muscle groups, such as walking, rising from a chair, and getting in and out of bed (see Chapter 7 ). Physical therapists also are involved in prescribing appropriate exercise programs (see Chapter 8 ). Their primary goal is to keep you safely functioning at as high a level as possible for as long as possible.
Your PT’s services can help improve mobility, relieve pain, and delay or limit development of permanent physical disabilities. With these techniques PTs can help you restore, maintain, and promote overall fitness and health.
At MDA clinics , PTs who are experienced in working with people with ALS are on staff or available by referral. The PT will become an important part of your health care team.
At various stages during your life with ALS, a PT will assess your level of function by performing evaluations and tests. This may include testing to see how strong you are, how flexible you are, and/or a balance assessment. Based on these assessments, the PT can advise you on appropriate equipment usage, such as what types of assistive devices are best for you in several areas of your everyday life.
They also will assess your home environment to make sure you can safely move about and function there. They may make suggestions regarding bathroom safety  and home modifications.
Physical therapists also will assist you with your choices of equipment to help you walk, move or maintain your mobility level, including a wheelchair.
Choosing a wheelchair can be difficult. There are many types of wheelchairs and feature options available. Discussing your needs and questions with your PT will help her recommend the best chair and the most appropriate features for you.
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Weakness of muscles controlling the foot causes foot drop. In that situation, you can’t lift your foot or toe at will. When this occurs, you may be more prone to tripping, have difficulty climbing and descending stairs, and be at risk for ankle sprains and other injuries. You also may notice a slapping sound when you walk, or that lifting your knee a little higher than usual causes fatigue.
This condition can be complicated by tightness and contractures in the plantar flexors — muscles in the feet and ankles that aid in such functions as pushing the body forward when you walk or run. Specific braces for the foot and leg can help remedy this problem.
An ankle-foot orthosis (AFO) is a lightweight leg brace that stabilizes the ankle and adds steadiness when you’re walking. It can be slipped into most styles of shoes and concealed by wearing a sock over the brace, but it’s best worn with a supportive tie-up shoe.
A properly fitted AFO will hold the foot in a functional position, and allow the user to walk with less fear of falling.
Today’s AFOs are usually made of durable, lightweight plastic and some also combine lightweight metals such as aluminum. The design usually stabilizes the ankle at 90 degrees. A custom-fitted AFO is best, and you must have reasonable strength in your quadriceps muscles to be able to walk with them on. AFOs are usually worn only during the day and not while sleeping.
Leg edema (swelling) can be a problem for AFO users, but wearing compression stockings or elevating the legs can reduce puffiness and keep braces fitting comfortably. At times, high-top shoes, cowboy boots or sneakers may offer you adequate support to delay the need for bracing.
As ALS leads to shrinkage, or atrophy, of muscles, your AFOs may need to be adjusted to ensure stability. If you notice a change in the fit of your AFOs, contact your orthotist. Don’t wait for your next clinic visit.
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Weakness in neck muscles is another common problem that occurs with ALS. The resulting difficulties in controlling or holding up your head can lead to excessive fatigue and discomfort, not to mention frustration. Cervical collars (neck braces) can provide appropriate support.
A physical therapist or doctor should help determine which muscles in your neck are weak and require support, and what type and size of collar is best for you. Keep in mind that your needs may change and you could require a different brace as muscle strength deteriorates further, or different muscles become affected.
Cervical collars come in a variety of styles, sizes and prices. They range from the standard, all-foam designs to those made from plastic-and-foam or foam-and-metal frame combinations. Different styles provide varying degrees of support; some styles are more adjustable, and others have frames that extend down to the shoulders.
A cervical collar should be comfortable to wear and provide support but not so tight it chokes or restricts breathing. It also should be worn only intermittently and never while eating, as the collar may hamper your ability to swallow. Price and aesthetics are considerations when selecting a brace, as well as whether the padded material is comfortable and doesn’t irritate your skin.
Another option for gaining support for the head and neck is a specially designed headrest (some include a head strap for stability). These are found on many wheelchair seating systems. This is an important accessory that you may not need initially, but you’ll want to be sure it can be added to your wheelchair later.
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Bracing options also are available for the wrists, hands and fingers, as well as the upper extremities (arms). Again, a PT, OT or doctor can determine what type of support will enhance your comfort and abilities.
Some braces or splints of particular interest to people with ALS include: wrist-hand cock-up splints (holds the wrist at a slight extension), resting splints (for functional and/or resting positioning of wrist, fingers and thumb), finger extension splints (holds finger in extended or slightly bent positions) and opponens splints (stabilizes the thumb).
In early stages of ALS, an elastic wrist support may suffice.
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A cane can help you enhance the safety and stability of walking by providing an additional point of support. Use of a cane requires moderate strength in your hands and arms.
A cane may be most useful when your balance is minimally impaired or when one leg is significantly weaker than the other. The cane is held on the “good leg side” of the body, and has the effect of shifting some of the body weight away from the weak side and allowing a wider base of support. For example, if you’re experiencing weakness of the left leg, the cane should be held in the right hand.
With minimal practice, the pattern of walking with a cane usually will feel and appear smooth and natural. Instruction by a PT will ensure correct use.
The general pattern for using a cane is to:
Horizontal grip cane
If you have hand weakness, a horizontal grip cane rather than the usual hook grip cane is recommended. The horizontal handle allows for a secure grip and an increased weight-bearing surface for the hand.
The quad cane, so named because it has four feet, provides more stability than a straight cane. This cane is available in two basic sizes — large base and small base. You can let go of the cane without concern that it will fall or slide to the floor. This kind of cane can be heavy so you may need to use it sparingly.
With the cane alongside the toes, the top of the cane should be aligned with the wrist. This allows a 20-degree to 30-degree elbow bend when the cane is used.
In addition to these practical choices, an Internet search will reveal canes and walking sticks made in a variety of attractive colors and decorative styles.
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If your physician or therapist feels that a cane is no longer adequate to compensate for your leg weakness or isn’t appropriate, he or she may recommend a walker. Use of a walker requires moderate strength in your hands and arms. A walker may be most useful when your balance is only moderately impaired or when both legs are affected by your ALS.
Again, a PT should show you exactly how to use your walker, but in general you’ll:
Standing in the walker with the crossbar in front, you should find the level of your wrist when your arm is relaxed at your side at the top of the handgrip. When you’re grasping the handgrip, your shoulders should be level and relaxed, and your elbow flexed to 20 or 30 degrees.
The most commonly prescribed walker is one that’s been fitted with wheels. You can use this type of walker when your arms are too weak to lift and maneuver a standard walker.
Wheeled walkers (rollators) come with two, three, four and more wheels. Some models include locking brakes for safety. Still others offer a bench for sitting, and most can be folded for storage. They’re made of lightweight metals such as aluminum for easy portability.
A rolling walker provides a sensation similar to that of walking with a shopping cart. It allows a more normal gait than a standard walker and enables you to move with less fatigue.
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A motorized scooter can be helpful when walking long distances is no longer practical. Scooters can be used only by a person who’s able to sit upright for an extended period of time, and has some arm strength and dexterity, but tires easily after walking a distance.
Some people with ALS find them useful for things like trips to the shopping mall, long walks outdoors, or even for getting around the house. For many, a scooter is an ideal step between being fully ambulatory and needing a wheelchair. However, your ALS health care team may be reluctant to prescribe a scooter if you can’t sit upright.
Know that if you want to purchase a scooter, most insurance plans (including Medicare) will only pay for a power wheelchair about once every five years. Motorized scooters are lumped into the same category as power wheelchairs. If you use this benefit for a relatively low-cost scooter, your insurance may not pay for a pricier power wheelchair when you need it. Plan ahead, and consider buying the scooter out-of-pocket or borrowing one.
Scooters are usually powered by rechargeable batteries, boast versatility, can be easy to maneuver and carry a smaller price tag (about $1,500 on up) than a power wheelchair.
Scooters often can be borrowed from MDA’s equipment loan program or rented, since they don’t require as much specific fitting and positioning as wheelchairs do. For the same reason — the lack of fitting options — you should ask your doctor or physical therapist whether using a scooter is advisable for you. Some PTs don’t recommend them at all for people with ALS.
There are several options to choose from when buying a scooter: three- or four-wheeled models; scooters designed for indoor, outdoor use or both; heavy-duty models designed for rugged outdoor terrain and carrying heavy loads; and lightweight travel models.
Scooters meant for indoor use are usually three-wheeled, feature front-wheel drive for optimum maneuverability, and have tires that won’t mark up floors. Heavier outdoor models often have four wheels and rear-wheel drive for better traction. Both types usually have adjustable chassis, armrests and seats, and come in models designed for specific body types such as taller, shorter or large-framed people.
Travel models are made of ultralight materials, and are designed to disassemble into several pieces for transporting, for example, in the trunk of a car. Some models are designed to collapse and fold for storage in a car, boat, airplane or train.
If you decide to get a scooter, be sure to deal with a qualified supplier such as one recommended by your health care team or a company that advertises in MDA’s magazine, Quest.
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Excessive fatigue, unsteadiness, difficulty rising from a chair and occasional falls are indications that you need more support than what’s provided by a walker or braces. If you tire when sitting without support or have extensive arm weakness, a scooter probably isn’t feasible. The help you need can be in the form of either someone assisting you when you’re walking or your using a wheelchair, at least part of the time, as a mobility aid.
Remember, a wheelchair represents an opportunity for you to remain less dependent rather than more dependent. When decreased endurance and weakness prevent you from being up and about for extended periods, you’ll be able to keep going by using a wheelchair to enjoy the activities that are important to you. You can continue to attend social outings, shop at the mall, perhaps go to work, or participate in activities that would require a moderate amount of walking — without having to depend on someone to assist you.
One of the main reasons doctors advise using a wheelchair is to prevent falls. Injury from a fall not only may cause considerable pain and discomfort, it also may lead to serious trauma or injury that could require immobilization of an arm or a leg and accelerate atrophy and irreversible weakness in the involved muscles. Think of the wheelchair as an ally that will allow you safety as well as freedom and mobility.
You should decide which chair is right for you in consultation with your doctor, physical therapist, and sometimes a seating and positioning specialist. These experts will help determine the type of seating, back support and other features you need, and your doctor will write a prescription for the type of chair you and your team decide on.
Don’t postpone looking into your first wheelchair because of embarrassment or other feelings. It can take several months to order, fit and settle the funding for the correct chair, so you need to plan ahead. The sooner you get started using the chair even for short periods of time, the more mobility and freedom you’ll have and the more muscle strength you’ll save.
MDA and other programs have wheelchairs to lend, but be sure your medical team approves of the one you borrow. Using the wrong wheelchair can be uncomfortable and even harmful. You can’t simply choose one that someone else has or that’s featured in a television ad. Getting the right chair for you can mean all the difference in comfort and mobility.
Private and government health insurers generally regard wheelchairs as necessary medical devices and cover all or some portion of the cost. But some insurance programs have restrictions on the kind of chair they’ll provide.
When you get your chair, the experts on your health care team will make adjustments to ensure it fits you correctly. They’ll teach you how to adjust the chair’s armrests and footrests, operate the brakes and maneuver the chair. Having the chair and cushion fitted correctly and fine-tuned for you can save you a great deal of energy and discomfort.
Depending on how your abilities are affected by ALS, a manual wheelchair might be of limited use — or it may be just right. In either case, advances in technology have made these chairs lighter and more portable than ever before.
Maneuverability of manual wheelchairs has improved in recent years. Now, with add-on components such as extra-durable tires or shock-absorbing caster wheels, manual wheelchairs can even be used for venturing off the pavement.
Although buying a manual wheelchair isn’t as complex or expensive as selecting a power chair, it’s wise to work with a qualified expert — or even a team of experts — to find the chair that best fits your body and lifestyle.
These experts can include a certified rehabilitation technology supplier (CRTS) who works in a rehab facility or with a wheelchair retailer, or a PT or OT with wheelchair prescription experience. These specialists also can help you investigate whether your insurance plan will cover both a manual wheelchair, and then a power wheelchair later.
Therapists also can help you learn to maneuver a wheelchair and offer valuable tips for incorporating it into your daily activities.
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Electric or “power” wheelchairs also have seen remarkable technical advances in recent years. Chairs range from standard designs that will cover basic mobility needs to high-end models that incorporate features such as standing and off-road driving capabilities. Prices start around $5,000 and can run into the tens of thousands of dollars for models with multiple features and capabilities.
Obtaining a power wheelchair is a time-consuming process, and ALS experts stress the importance of looking into and shopping for one before you have a need for it. Again, seating and fitting experts who also understand ALS can be invaluable in this process.
Ordering and customizing the most appropriate chair for you can take several months. Much of the time is taken up securing authorization for payment — which means correctly completing paperwork — with an insurance company or Medicare.
Each type and brand of power wheelchair has its own advantages, so taking test drives and working with someone who’s experienced with wheelchair seating and positioning, such as a CRTS, is essential. You also should consider how different models will fit in and maneuver around your home, office or other places you frequent. Make sure to work with knowledgeable specialists in this process; the staff at your MDA clinic or office can recommend qualified equipment dealers.
As you plan for a wheelchair, also consider your need for items such as wheelchair ramps, lifts, and a wheelchair-accommodating vehicle or van. In addition, if you think you might first use a manual wheelchair and later a power model, be sure that both chairs will be covered by your medical insurance and can fit into your vehicle. Some companies will only pay for one wheelchair.
You and your team of experts should make sure that as your abilities change because of ALS, your chair can change, too. The ideal chair should be able to be adjusted or accessorized so it will continue to be appropriate for your needs.
Where are the wheels?
Shopping for a power wheelchair can sound a lot like looking for a sport utility vehicle, as you’ll hear terms such as front-wheel drive and independent suspension. Each type of system has its plusses, and often it’s a combination of what your doctor may prescribe, insurance and budget limitations, and personal preference that determines the best wheelchair for you.
A main difference between models is the positioning of the larger, driving wheels that are coupled with two or four smaller wheels or casters to help balance and steer the chair. Consumers can choose from front- or rear-wheel drive systems, and the most recent innovation, a mid- or center-wheel drive wheelchair. Generally, the type of driving system will determine the wheelchair’s maneuverability, and dictate important details like turning radius and the feel (smooth or bumpy) of the ride.
Another difference is the operating system, or how the chair is controlled. Most chairs operate with a joystick that the user moves in the direction he or she needs to go. For those who can’t maneuver a joystick control, most power chairs can be customized to incorporate systems that use alternatives such as head controls, foot controls, or touch pads for driving.
If you can no longer operate the chair yourself, controls can be moved or modified so a caregiver can easily reach them. For example, on some models, a joystick can be attached to the back of the chair so it’s within easy reach of the caregiver.
More customizing options
Because people with ALS require wheelchairs that can adjust to their changing needs and abilities, many find a power wheelchair that includes a versatile positioning system ideal. The abilities to tilt, recline or elevate when needed are standard in some brands and add-ons for others. The combination of tilting and reclining also offers comfort and potential health benefits for people who can’t change body positions on their own.
Other accessories, such as headrests, trays, or holders for equipment such as ventilators or communication devices, can often be added to provide greater independence and comfort.
Other innovations on today’s chairs include headlight and taillight packages, armrests that flip up or can be removed so you can get close to a desk or table, and seats that raise and lower with a touch of a button.
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Whether you’re using a wheelchair, walking independently, or relying on other ambulatory aids, transportation outside your home will likely become an issue because of ALS. Eventually, muscle weakness makes driving inadvisable, and thus a person with ALS becomes reliant on others or on public transportation to get around.
Public transportation such as buses, trains, subways and taxis can be viable options, depending on the size of your city and the accessibility of the system. Another option is paratransit services, which provide vans or buses specially equipped to transport wheelchair users and other people with disabilities.
Some accessible transportation services are private and some are publicly funded; check in your phone book under "Wheelchair & Special Needs Transportation", or "Taxicabs."
Your right of access to public transportation is guaranteed under the Americans with Disabilities Act. Depending on your community, you may hear horror stories about physical barriers; improper or unavailable accessible equipment; poorly trained staff; and unreliable service. On the other hand, you also may hear how others use some form of public transportation daily and have remained independent and involved with their careers.
Many people don’t let ALS prevent them from getting around, traveling abroad, and staying involved in their communities. Planning, information gathering, advocacy and persistence can help get you where you need to go.
Disabled parking placards
Obtaining a placard or license plate that allows you to park in “handicapped” or disabled parking spots is something to consider, even when you’re ambulatory. Parking closer to an entrance or facility can greatly minimize energy expenditure and anxiety on outings.
Applications for these permits usually require a physician’s signature. Many doctors’ offices stock the necessary paperwork, or have information on hand about how to obtain one. Don’t hesitate to ask about this accommodation soon after your diagnosis.
Travel by airplane, train, boat and cruise ship is no longer unthinkable for people who use wheelchairs, scooters or require other assistance. Airlines, cruise ships and other transportation companies are becoming more aware of their customers with disabilities, and many have taken broad steps to accommodate this population.
That’s not to say that such travel will be glitch-free; the keys to a successful trip begin with planning and information gathering. For example, make sure you get information on what modifications have been made for accessibility (one grab bar in the shower doesn’t mean a hotel room is accessible). Find out about restroom accommodations, doorway width, type of bed, etc., before you make a reservation.
For air travel, learn the airline’s policies and procedures for passengers with disabilities, and for mobility and respiratory equipment. Most have appropriate procedures in place, but communication breakdowns or ignorance of the policies by employees often lead to problems or damaged mobility equipment.
To ensure wheelchair assistance at connecting gates and your final destination, consult with the gate agent prior to boarding the plane.
For further advice, there are several books, Web pages and magazine articles available on this subject (see below).
|Spotlight on Accessible Vans|
Purchasing a converted or accessible van can be an expensive option, but also one that can enable the greatest independence during every stage of ALS. It’s a purchase that requires careful research to find a van that fits you, your lifestyle, parking area, wheelchair and budget.
Conversions can be done on a variety of new and used vans. Modifications can range from simply adding a seat that turns and lowers to help a person get in and out, to a complete conversion that includes installing a ramp or lift system for a wheelchair user. A handful of other vehicles can be converted for wheelchair access, but vans are the most popular.
Be aware that only certain makes and models of vans can be converted. You also must choose between full-size or minivans, and side- or rear-entry designs. Then you have to factor in the height, size and weight of the wheelchair plus its user, and more. Van shoppers can buy from a mobility dealer or directly from a manufacturer.
The van should have wheelchair tie-downs and a restraint system for safety. Scooter users should transfer into passenger seats.
If you’re planning to buy or rent a van, check the resources below for finding mobility experts in your area.
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Air Travel with ALS: Advance Planning Is the Key , MDA/ALS Newsmagazine, September-October 2010
Getting from Here to There  (series on accessible travel and transportation), Quest, July-September 2009
Turning Seats Can Enhance Mobility , Quest, July-August 2008
Wheelchair Cushions Can Save Your Butt , Quest, July-August 2008
Wheelchair Control Upgrades Keep You Moving , MDA/ALS Newsmagazine, January 2008
Cane, Crutches and Walkers , Quest, November-December 2007
Equipment Corner: Programs make vehicles more affordable , MDA/ALS Newsmagazine, June-July 2006
Equipment Corner: Scooters not always wise in ALS , MDA/ALS Newsmagazine, September 2005
Equipment Corner: Get time on your side when obtaining major equipment , MDA/ALS Newsmagazine, January 2005
Determined to Drive: Taking matters in hand , Quest, March-April 2004
When Your Plan is a Van , Quest, March-April 2004
In addition to these articles, browse the following Quest departments at quest.mda.org :
Also, be sure to browse the MDA/ALS Newsmagazine Travel category  online.
American Physical Therapy Association , (800) 999-2782. APTA can help you find a specialist in your area.
Rehabilitation Engineering and Assistive Technology Society of North America , (703) 524-6686
Association for Driver Rehabilitation Specialists , (866) 672-9466
National Mobility Equipment Dealers Association , (866) 948-8341
National Registry of Rehabilitation Technology Suppliers , (800) 976-7787
Americans with Disabilities Act 
New Horizons: Information for the Air Traveler with a Disability , U.S. Department of Transportation
Federal Transit Administration 
For local transportation services, check in your phone book under “Wheelchair & Special Needs Transportation” or “Taxicabs.” For vans, look in the phone book under “Van Conversions” or “Handicapped Equipment.”
Search the Internet for “accessible vans” or “wheelchair vans.” You also can rent accessible vans through local or national services.
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