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Tapping Into Technology

PT isn't just about exercises. It's also about technology and modifying the environment. Canes, walkers, wheelchairs, scooters, neck supports, and ankle-foot and knee-ankle-foot orthoses (AFOs and KAFOs) are among the more common devices used in neuromuscular conditions.

Motor Neurons and Muscle Fibers When a motor neuron dies, a neighboring motor neuron can "sprout" new nerve endings to control the muscles fibers "orphaned" by the dying neuron, but these new connections aren't as strong as the original ones.

But sometimes modifying an armchair so that it has more support or constructing a way to hold a book at eye level can make an enormous difference to someone's physical well-being.

"A therapist can try various devices and see what works the best," Hayes says. "ALS patients are a challenge, because some of the assistive devices have to be modified if they have hand weakness. You may have to put forearm platforms on a walker, for example. There's a lot of equipment available; you just have to know what to try with each patient."

And, says Hayes, you have to be alert to changes in the patient's condition, a common factor in neuromuscular disorders.

A popular intervention in many conditions is the AFO. AFOs are typically constructed out of molded plastic, with a support that goes up the calf and continues under the sole of the foot. The AFO holds the foot in a functional position, preventing "foot drop" (the foot flopping down because of weakness in lifting it) and slowing the development of contractures at the ankle joint.

An ankle-foot orthosis (left) and a knee-ankle-foot orthosis (right)

Pandya says she calls AFOs night splints when she's thinking about DMD, because in this disease they're more often used to prevent contractures than to aid walking and are worn overnight for this purpose. (Pandya says she thinks they probably aren't needed if the boys are still standing several hours a day and if the parents and child are willing to do regular stretching exercises.)

In other conditions, such as myotonic muscular dystrophy (MMD), they're used to aid walking by preventing foot drop, Pandya says.

Pandya and Robison are both involved in the prescription of wheelchairs and other mobility devices and in the particulars of their modifications and seating. Robison has a special certification in wheelchair seating from the Rehabilitation Engineering Society of North America, but even without special credentials, wheelchair seating and modification is an area that falls squarely in the physical therapist's domain.

A scooter may be fun to "zip around in" for the person with ALS who isn't too far along in his disease, Hayes says, but therapist and patient have to be realistic: The person is likely to need the more complete support of a wheelchair in time, and his insurance isn't going to be thrilled about paying for two expensive devices within a few years of each other.

In DMD, Pandya says, she likes to see a child start with a lightweight, flexible wheelchair that's relatively inexpensive and easy for everyone to maneuver.

In fact, she says, some children can push it themselves with their remaining arm strength, which is good exercise. Then, in high school, when the child has reached his full size, she recommends getting a power wheelchair for maximum mobility. By then, weakness usually mandates its full-time use. Pandya is also conscious of insurance restrictions and says the companies aren't going to pay for too many vehicles in too short a time.

Specialized Knowledge

Finding a physical therapist these days is fairly easy. But finding one with the specialized knowledge it takes to treat the problems in neuromuscular disorders and one that an insurance company or government health plan (such as Medicare or Medicaid) will cover is another story.

The MDA clinic is a good place to get a referral to a therapist who knows about neuromuscular disorders and to set up a free yearly consultation with one.

But insurance or personal resources are required to finance an ongoing therapy program that's not connected to a school or early childhood program, and that's where the going can get tough. MDA clinic physicians can help you appeal to insurers regarding the need for a therapist who specializes in neuromuscular conditions.

Financial concerns aside, finding the ideal person is doubly difficult if you don't live near a big city, Robison says. The American Physical Therapy Association (see "Getting Started") may be able to help you find a specialist in your area. Where children are concerned and you can't find someone with neuromuscular disease expertise, Robison advises parents to search for a pediatric physical therapist.

Yvonne Nichols advises parents who are searching for a physical therapist: "It's important that it's a physical therapist that the child likes. They talk and joke together, and they need to do that. Scott is not demonstrative in any way, but he runs through the clinic and hugs Shree." (Scott sees Shree Pandya for evaluations as part of a drug study.) She says he also loved the private pediatric therapist the family was temporarily able to see.

Schools can be a good source of help and advice, Robison says, but you have to be on your guard. "Some schools are great and some will do as little as they have to do. Some of these schools will run you over if you don't learn to fight for yourself."

Robison strongly endorses parent advocacy groups that interpret disability law for families and help them make school systems comply with regulations.

Social workers associated with medical centers or school systems can also be a help. "The more informed parents are the better they can advocate for the child," Robison says.

Robison and Pandya see the role of the physical therapist as more of a consultant to the parents and the school staff than as someone who necessarily does hands-on therapy during the school day (although sometimes they do conduct therapy sessions this way).

"Therapists in the schools can act as a bridge between us [at university medical centers] and the school and parents and help the school staff understand the changes in function and how to handle the child," Robison says.

"Occupational and physical therapists in the school system are important," she says, but these days, they're usually "more in a consulting role in the school system, usually not in a direct therapy role. "They can be an advocate for the child in the school system, because they understand the disease and the equipment. They can go to the principal and say why he really needs to have a computer. They're a medical bridge to the school."

For children under 3 who aren't yet in regular school programs, state-administered, federally mandated programs, generally called early intervention for children under 3, and preschool education programs for children 3 to 5, are part of IDEA. Therapies can be conducted in the home, preschool, daycare center or other settings. Such programs "help with equipment, with therapy, with getting the right things for children," Robison says.  

GETTING STARTED WITH PHYSICAL THERAPY AND MORE

Getting started with a physical therapist can take some work on your part, but it's worth the time and effort to improve your or your child's quality of life.

One way to find a therapist in your area is through the American Physical Therapy Association in Alexandria, Va., which maintains a state-by-state listing of certified therapists with specialties. Call (800) 999-2782 or visit www.apta.org.

Help From MDA

Your MDA clinic is always a good place to start with physical therapy. MDA covers one visit with a therapist a year, designed to help you set up a home physical therapy program or work with a community or school-based therapist. These therapists are knowledgeable about neuromuscular disorders and can serve as consultants for local therapists, teachers and families.

MDA also covers some of the expenses associated with leg braces (orthoses) and wheelchairs. Call your local MDA office, the national office at (800) 572-1717, or visit MDA's Web site at www.mda.org for details about MDA's programs.

Government, Schools and Other Agencies

Prior to the implementation of the Individuals with Disabilities Education Act (IDEA) in 1975, most children with serious disabilities were shut out of public education. The IDEA of 1975 was significantly amended in 1997, and today it's a comprehensive federal program, administered separately by each state, designed to provide a "free, appropriate public education" to every student regardless of disability.

The law now covers infants and preschool children as well, on the theory that what happens before school starts has a major influence on educational success.

Services judged necessary for a student to take full advantage of the educational system, even if they're primarily "medical" in nature, such as physical therapy, can be included in a child's IEP, the individualized education program that each school system sets up for a child with a disability.

For more information about the IDEA, see the Web site at www.ed.gov/offices/OSERS/IDEA. For more on IEPs - the cornerstone of special education - see "ABCs of an IEP," Quest, vol. 3, no. 3, 1996.

To set up an IEP, you can contact your local school district, usually working through a Committee on Special Education. Call your local school and speak to the principal or the person in charge of special education. If you don't have success (or even if you do), you may want to involve yourself in a parent advocacy group.

A list of parent advocacy groups, usually called parent training and information programs, can be found for each state on the Web site of the National Parent Network on Disabilities (NPND) at www.npnd.org. You can call NPND at (202) 463-2299 or e-mail NPND@cs.net.

A program for an infant with a disability is known as an individualized family service plan (IFSP). To set up an IFSP, contact the agency in your state that's in charge of early intervention services for infants and toddlers with special needs. Therapists, social workers, pediatricians and support groups can help direct you to the right agency.

You can also find information through the National Information Center for Children and Youth with Disabilities, a clearinghouse for information and referrals on disability-related issues for children and youth from birth to age 22. Contact NICHCY at (800) 695-0285 or nichcy@aed.org, or visit www.nichcy.org. For lists of agencies in your state, go to State Resource Sheets on the site.

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