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P a r a l y s i s

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  Paralysis Index  
  Basic Conditions  
    Amyotrophic Lateral Sclerosissic Conditions          
    Brachial plexus injury          
    Brain injury          
    Cerebral Palsy          
    Friedrich’s Ataxia          
    Guillain-Barre Syndrome          
    Multiple Sclerosis          
    Muscular Dystrophy          
    Post-Polio Syndrome          
    Spina Bifida          
    Spinal Cord Injury          
    Stroke          
    Syringomyelia/Tethered cord          
    Transverse Myelitis          
  Rehabilitation and Recovery
  Rehabilitation Overview / How to Pick a Rehab
    Physiatrist          
    Rehab Nurse          
    Occupational Therapy          
    Physical Therapy          
  Functional electrical stimulation (FES)
    Aquatherapy          
    Bone density treatment          
    Bladder or bowel FES          
    Upper extremity          
    Walking          
    The future          
  NeuroRecovery Network (NRN)
  Military & Veterans Program
  Exercise and New Function
    Treadmill or locomotor training resources          
  As the resources are numerous, links to various sites are provided here
    Rehabilitation/Recovery                  
    Coping                  
    Specific Conditions                  
    Related Issues                  
    Clinical Trials                  
    Genetics                  
    Journal Articles                  
    Directories                  
    Organizations                  
    Law and Policy                  
    Statistics                  
    MedlinePlus Magazine                  
    Children                  
    Teenagers                  
    Patient Handouts                  
 
Also called: Hemiplegia, Palsy, Paraplegia, Quadriplegia 
There are several different types of paralysis.
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Basic Conditions
  Paralysis is not defined strictly in medical terms, but there are many health and wellness issues specific to people with mobility related disabilities. This portion of the PRC Web site deals with a wide range of health-related issues, from the many conditions that can cause paralysis, to some of the health related issues brought on by paralysis itself. 

Amyotrophic Lateral Sclerosis ALS, also called Lou Gehrig's disease, is a progressive neurological disease affecting 30,000 Americans with about 5,000 new cases occurring in the United States each year.

Brachial plexus injury Caused by excessive stretching, tearing, or other trauma to a network of nerves from the spine to the shoulder, arm, and hand.

Brain injury The brain serves as the control center for all of the body's functions including conscious activities (walking and talking) and unconscious ones (breathing, heart rate, etc.).

Cerebral Palsy Refers to a group of conditions that affect control of movement and posture.

Friedrich’s Ataxia Friedreich’s ataxia is an inherited disease that causes progressive damage to the nervous system.

Guillain-Barre Syndrome(ghee-yan bah-ray) A disorder in which the body's immune system attacks part of the peripheral nervous system.

Multiple Sclerosis MS is a disorder of the brain and spinal cord involving decreased nerve function associated with scar formation on the covering of nerve cells.

Muscular Dystrophy MD refers to the group of genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement.

Post-Polio Syndrome Poliomyelitis (infantile paralysis) has been eradicated from nearly every country in the world since the approval for use of the Salk (1955) and Sabin (1962) vaccines.

Spina Bifida A type of neural tube defect (NTD). The term means cleft spine, or incomplete closure in the spinal column.

Spinal Cord Injury Involves damage to the nerves within the spinal canal; most SCIs are caused by trauma to the vertebral column, thereby affecting the spinal cord's ability to send and receive messages from the brain to the body's systems that control sensory, motor and autonomic function below the level of injury.

Stroke Occurs when the blood supply to part of the brain is suddenly blocked or when a blood vessel in the brain bursts, spilling blood into the spaces surrounding brain cells.

Syringomyelia/Tethered cord The clinical symptoms for syringomyelia and tethered spinal cord are the same and can include progressive deterioration of the spinal cord, progressive loss of sensation or strength, profuse sweating, spasticity, pain and autonomic dysreflexia (AD). 

Transverse Myelitis TM is a neurological disorder caused by inflammation across one segment of the spinal cord.

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Rehabilitation and Recovery :
 

How do you choose the right rehab center?  What is a physiatrist?  When will your rehabilitation begin?  What’s the difference between an occupational therapist and a physical therapist? 

These may be just a few questions that run through your mind after you've acquired a spinal cord injury or developed paralysis.  You'll find your answers in this section along with an in-depth look at exercise and its relationship to improved function.

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Rehabilitation Overview / How to Pick a Rehab
 

How do you choose the right rehab setting once you or your loved one is past the very early or acute phase of paralysis or disease? While the nearest facility may be the most convenient, and may offer many advantages in terms of support from family and friends, it may not offer the level of service needed in a complex injury or disease.

Some questions to consider: Does the facility have experience with the particular diagnosis or condition? Usually the more patients a facility treats, the higher the expertise level of the staff. Is the place accredited – that is, does it meet professional standards of care for your specific needs?

Generally speaking, a facility with accredited expertise is preferable to a general rehabilitation program. For example, accreditation by the Rehabilitation Accreditation Commission (CARF) for spinal cord injury indicates that the facility meets a minimum standard level of care. Programs seek CARF accreditation when they feel their programs are exceptional.

CARF promotes outcomes-driven, value-based services for people with disabilities due to disease or injury. CARF accreditation is important for both privately and publicly financed rehabilitation care.

Another aspect of good rehab is the breadth and quality of the professional staff on hand.

Among the professions you can expect to find on a rehabilitation team:

Physiatrist

A physiatrist (fizz-ee-AT-trist, or more commonly pronounced fizz-EYE-a-trist) is a doctor specializing in physical medicine and rehabilitation. Physiatrists treat a wide range of problems from sore shoulders to spinal cord injuries. They treat acute and chronic pain and musculoskeletal disorders. They may see a person with back pain, an athlete who sprains an ankle or a typist who has carpal tunnel syndrome.

Physiatrists coordinate the long-term rehabilitation process for patients with spinal cord injuries, cancer, stroke or other neurological disorders, brain injuries, amputations and multiple sclerosis.

A physiatrist must complete four years of graduate medical education and four years of postdoctoral residency training. Residency includes one year spent developing fundamental clinical skills and three years of training in the full scope of the specialty.

Rehab Nurse

Nurses with special training in rehabilitative and restorative principles work collaboratively with the rest of the rehabilitation team to solve problems and manage complex medical issues. Rehabilitation nurses are experts in bladder, bowel, nutrition, pain, skin integrity, breathing, self care, coordination of medical regimens and related issues. They provide ongoing patient and family education, set goals for maximal independence and establish plans of care to maintain optimal wellness.

Rehabilitation nurses begin to work with individuals and their families soon after the onset of a disabling injury or chronic illness and they continue to provide support after return to home, work or school. According to the Association of Rehabilitation Nurses, "rehabilitation nursing" is a philosophy of care, not a work setting or phase of treatment. Rehabilitation nurses take a holistic approach to meeting patients' medical, vocational, educational, environmental and spiritual needs.

Occupational Therapy

An occupational therapist (OT) is skilled in helping individuals learn, or relearn, the day-to-day activities they need to achieve maximum independence. OTs offer treatment programs to help with bathing, dressing, preparing a meal, house cleaning, engaging in arts and crafts or gardening. They make recommendations and offer training in the use of adaptive equipment to replace lost function.

OTs also evaluate home and job environments and make recommendations for adaptations. The occupational therapist also guides family members and caregivers in safe and effective methods of caring for people. Occupational therapy not only helps to restore basic physical skills, but also facilitates contact with the community outside of the hospital.

Physical Therapy

The physical therapists (PT) treat disabilities that result from motor and sensory impairments. Their aim is to help people increase strength and endurance, improve coordination, reduce spasticity, maintain muscles in paralyzed limbs, protect skin from pressure sores and gain greater control over bladder and bowel function.

PTs also teach paralyzed people techniques for using assistive devices such as wheelchairs, canes or braces. In addition to "hands-on" exercises and treatments, physical therapists also educate people to take care of themselves. PTs may also work with joints and assure their range of motion. Physical therapists also use methods such as ultrasound (which uses high frequency waves to produce heat), hot packs and ice.

Other therapists you should find on the rehab unit include:

Recreation therapists help people discover the wide range of recreation options available in their community.

Vocational therapists help people assess their job skills and to work with the state Vocational Rehab or other agencies to obtain equipment, training and placement.

Many rehab facilities have seating and positioning experts to help people select the best wheelchair, cushion and positioning gear.

Most facilities have rehab psychologists to assist people with the often-dramatic life changes that follow disease or trauma.

Sex and family counseling are integral to most rehab programs, in order to help patients better understand sexual function, family planning, etc.

 Sources:

American Occupational Therapy Association, American Physical Therapy Association, American Academy of Physical Medicine and Rehabilitation, Rehabilitation Accreditation Commission, Association of Rehabilitation Nurses

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Functional electrical stimulation (FES)
 

Functional Electrical Stimulation (FES) applies small electrical pulses to paralyzed muscles to restore or improve their function. FES is commonly used for exercise, but also to assist with breathing, grasping, transferring, standing and walking.

FES can help some to improve bladder and bowel function. There's evidence that FES helps reduce the frequency of pressure sores.FES made a splash in 1983 when Nan Davis, a paraplegic student at Wright State University, got out of her wheelchair and "walked" to get her diploma. She was powered by an FES system and inspired a TV movie called "First Steps."

The Wright State technology soon emerged commercially in the form of a stationary bicycle (ergometer) called the Regys; users pedaled the bike using FES-stimulated leg muscles. Researchers soon noted that this form of FES provides real aerobic exercise in people who otherwise can't move on their own; it boosts heart and lung function, improves strength and circulation, builds muscle mass, even in people with high quadriplegia.

Two companies make FES bikes in the U.S. Therapeutic Alliances, Inc., which originated the Regys 25 years ago, makes the Ergys 2 (www.musclepower.com). Restorative Therapies, Inc. offers the RT300-S which is operated from the wheelchair without the need for a transfer (www.restorative-therapies.com). RTI was started by Dr. John McDonald, the physician who got Christopher Reeve on an FES bike and who has claimed that FES helped Reeve get significant function back seven years after his C1 injury. According to McDonald, the FES bike can be more useful than just exercise. "We propose to use them for a totally different reason -- to promote regeneration and recovery of function." There is to date no support in the medical literature that FES affects recovery.

A doctor's prescription is needed for FES biking; each individual is given a program customized for run times, resistance, etc. The bikes cost in the range of $15,000. The manufacturers have yet to convince Medicare to pay for the devices. Some private insurance companies have reimbursed for them but many people access FES exercise in community settings, at health clubs and rehab clinics.

There are some risks associated with FES. Fracture of leg bones is possible due to loss of bone mineral density. Also, FES can trigger autonomic dysreflexia in upper-level injuries. People with severe spasticity, contractures, or osteoporosis are not good candidates.Reeve did one hour of exercise at least three times a week on an FES bicycle. This technology allows persons with little or no voluntary leg movement to pedal a stationary leg-cycle called an ergometer. Computer generated, low-level electrical pulses are transmitted through surface electrodes to the leg muscles; this causes coordinated contractions and the pedaling motion.

FES bikes are not new; they have been on the market for over 20 years. Moreover, FES systems have been deployed in research centers throughout the world for the last several years.  Here in the U.S., there are a couple of companies currently producing the bikes. Therapeutic Alliances, Inc., one of the oldest manufacturers, makes  the Ergys 2.  A newer company called Restorative Therapies, Inc. offers the RT300-S which is operated straight from the wheelchair eliminating the need for transfer. (Electrologic, original maker of the StimMaster Orion, has gone out of business.)

FES bikes are also not cheap – they are in the range of $15,000. Some insurance companies have reimbursed for units. There are bikes available in some community settings, at health clubs and rehab clinics. See below for contact information; the Paralysis Resource Center has a list of clinics that use FES bikes.

The first step is to choose a bike that is mechanically sound. All the electronics are upgradeable from the manufacturers. Each bike has a program cartridge set up for the specific needs of each rider, including run times, resistance, etc. A prescription is needed to get the cartridge. For safety reasons, it’s not recommended that FES bike riders use another’s cartridge.

Abundant medical literature documents the effectiveness of FES to increase muscle mass and improve cardiopulmonary function. There are studies that also link FES to a reduced frequency of pressure sores, improved bowel and bladder function and decreased incidence of urinary tract infections. Until now, there have been no reports in the literature linking FES to functional improvements of the sort Reeve experienced.

According to Dr. McDonald, the FES bike can be more useful than for just building muscle mass. “We propose to use them for a totally different reason -- to promote regeneration and recovery of function. We now have data demonstrating that [FES] activity can enhance regeneration in animals and is associated with recovery of function in humans.”

Treadmill or locomotor training, also known as weight-supported ambulation:

Locomotor training is a rehabilitation approach that has been emerging over the last decade. It involves a kind of activity-triggered learning whereby practicing a series of specific movements (in this case, stepping) triggers the sensory information that somehow reminds the spinal cord how to initiate stepping.

Treadmill training uses repetitive motion to teach the legs how to walk again. A paralyzed person is suspended in a harness above a treadmill; this reduces the weight the legs will have to bear. As the treadmill begins to move, therapists move the person’s legs in a walking pattern. The theory that drives the work is that paralysis causes “learned non-use” of muscles. But the injured nervous system may be “plastic,” that is, capable of recovery when certain conditions, including the patterned neural activity that accompanies treadmill walking, are optimized.

Research from the University of California at Los Angeles and in Germany, Switzerland and Canada, notes that the spinal cord itself appears to act like a small brain and is thus capable of controlling ambulation. The spinal cord makes many routine decisions about the correct way to walk. When a paralyzed person is retrained to walk, both the brain and spinal cord figure out new ways to do it.

Many people with paralysis, regardless of time elapsed since onset, have improved their walking after receiving locomotor training. The level of recovery is different for each person, although almost all those with incomplete injuries showed gains.

It is important to understand, however, that locomotor training is an evolving procedure and may not help everyone to walk better. Scientists, physicians and therapists are still learning the best way to train and which patients can benefit the most. While locomotor training is part of the rehab experience for many Europeans, there is little expertise on how to do it and it is not widely available in the U.S. This is due to change soon as the commercialization of the technology moves forward.

As treadmill units filter out into the community, it is important for people to recognize that a locomotor training program must include highly trained therapists to work with patients. Maximizing a patient’s ability to step after injury depends to a very large extent on the skill and precision with which the therapists deliver locomotor training.

Aquatherapy:

Christopher Reeve demonstrated the ability to move his legs and arms in a pool. The effects of gravity are greatly reduced in water so that small body movements can be more easily detected and therapists can determine a person’s maximum ability to move without the full resistance of gravity. Also, when people are beginning to recover movement, water makes practice easier. When time permitted, Reeve did aquatherapy once a week for approximately two hours.

Bone density treatment:

Since people with paralysis don’t typically put weight or pressure on their bones, they tend to lose bone density and often develop osteoporosis. With drugs and exercise on the FES bicycle, Reeve’s osteoporosis was reversed to normal bone density.

 

Bladder or bowel FES:
Sacral stimulators are surgically implanted FES systems for on-demand control of the paralyzed bladder and bowel; these have been implanted in more than 1,500 paralyzed people, mostly in Europe. The stimulator, called the Finetech-Brindley device, has a strong track record for improving bladder and bowel control in the vast majority of users.

In 1999 a company called NeuroControl licensed the Brindley system and got FDA approval as the Vocare system. A company called NDI Medical more recently obtained the marketing rights to Vocare in the United States. See www.ndimedical.com.

  Upper extremity:
About 15 years ago the FDA also approved an FES implant system to restores some hand and arm function to quads. The FreeHand system was well liked by the quads who used it; they gained significant function in grip, writing, eating, computer work, etc. Alas, NeuroControl dropped this from the market.
  Walking:
There is a commercially available device called Parastep that is FDA approved for some paraplegics (T4 to T12 ) for "ambulation." Parastep, which has been approved by Medicare for reimbursement, facilitates gait by firing leg muscles; a front-wheeled walker fitted with a control pad is used. Contact www.sigmedics.com.
 

The future:
Brain-wave communication, it's the next big leap in neuroprosthetics and it's nearly here: in clinical trials, people area already controlling computer cursors and opening email with just their thoughts. Monkeys can precisely move robotic arms using only brain waves.

BrainGate is an investigational brain implant system from a biotech company called Cyberkinetics that places a computer chip into the brain; this monitors brain activity and converts the intention of the user into computer commands. The company is currently recruiting people with spinal cord injury, stroke or muscular dystrophy conditions for pilot clinical trials in Boston, Chicago and Rhode Island. Call the company for more: 508-549-9981.

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NeuroRecovery Network (NRN)
 

A cooperative network of cutting-edge rehabilitation centers designed to provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis. Funded by the Reeve Foundation through a cooperative agreement with the Centers for Disease Control and Prevention, the NRN translates the latest scientific advances into effective, activity-based rehabilitation treatments.

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Military & Veterans Program
 

The Reeve Foundation helps our service men and women, whether they are paralyzed through combat related, service related, or non-service related events.

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Exercise and New Function
 

Christopher Reeve demonstrated to the world that he had recovered some movement and sensation. While he could not walk, did not regain bowel, bladder, or sexual function, nor could he breathe without a ventilator, his limited recovery was significant. The scientific literature on spinal cord injury predicts that most recovery will occur in the first six months after injury and that it is generally complete within two years. Reeve’s recovery, coming five to seven years after his injury, defies these medical expectations and had a dramatic effect on his daily life.

Why did he get better so long after his injury? Reeve believed his improved function was the result of vigorous physical activity. He began exercising the year he was injured. Five years later, when he first noticed that he could voluntarily move an index finger, Reeve began an intense exercise program under the supervision of Dr. John McDonald at Washington University in St. Louis.

Reeve included several activities in his program. He used daily electrical stimulation to build mass in his arms, quadriceps, hamstrings and other muscle groups. He rode a Functional Electrical Stimulation (FES) bicycle, did spontaneous breathing training and also participated in aquatherapy. In 1998 and 1999, Reeve underwent treadmill training to encourage functional stepping.

Reeve and Dr. McDonald suggested that these activities may have awakened dormant nerve pathways. The fact is, however, that it is not possible in a single experiment to know just what did occur in Reeve’s nervous system. To be sure, his recovery may have been related to exercise. Dr. McDonald and other researchers and clinicians caution not to over-interpret Reeve’s results. Clearly, not all people with paralysis would benefit from a similar program.

Said McDonald in the Journal of Neurosurgery – Spine, “Although we cannot conclude that the activity-based recovery program produced the functional benefits, we believe it was responsible for the physical benefits.”

It is true for any of us: exercise is related to better health. Because there are few, if any, negative side effects of exercise, even people who don’t experience recovery in the way that Reeve did are likely to improve their well-being. For Reeve, a high quad on a ventilator, improved health was the single most important benefit of his exercise and therapy program.

Reeve’s participation in exercise was motivated by the well-known benefits on cardiovascular function, muscle tone, bone density, etc. Indeed, he had fewer medical complications such as bladder and lung infections. Before 1999, Reeve frequently required hospitalization – he had a total of nine life-threatening complications and required almost 600 days of antibiotic treatment. After 1999, he was rarely hospitalized, had only one serious medical complication, and needed only 60 days of antibiotic treatment. These improvements in his health boosted Reeve’s emotional well-being and enabled him to commit to a variety of work projects knowing he could give them his uninterrupted attention.

If Reeve’s recovery of function was due to the exercise, it was a wonderful side effect. Now, scientists are undertaking detailed studies and working with large numbers of people in centers across the country to give them the chance for similar benefits.

Christopher Reeve’s experience is an example of what can happen when one refuses to accept the “get used to it” dogma. Although it is not clear what caused his recovery, his improvements in function provide a source of hope and inspiration for others.

Reeve was a strong advocate for making FES technology more widely available. “I have the staff and the equipment,” he said. “But what I really hope comes out of my experience is a paradigm shift in the way insurance companies do business. If insurance companies would pay for proactive therapy and equipment they would save money keeping people like me out of the hospital. People with lower level injuries would get up and get out of their chairs. It’s a win-win proposition.”

Here is a rundown on the various activities that were in Reeve’s exercise program: (Note: Before considering participation in advanced rehabilitation therapies, such as FES or treadmill training, it is important to be evaluated by one’s own physician to ensure that the therapies are appropriate and safe.)

Therapeutic Alliances, Inc. makes and markets the Ergys 2 and supports the older Regys bikes. Contact the company at 937-879-0734 or visit the Internet site, www.musclepower.com.

Restorative Therapies, Inc. was founded by one of the leading proponents of restorative therapy, Dr. John McDonald, who supervised Reeve's  rehabilitation program. The company recently introduced the RT300-S. Pedals with leg guides are accessed directly from the wheelchair so no transfer is required.  Phone them toll free at 1-800-609-9166 or visit the Internet site,  www.restorative-therapies.com.

A list of clinics and facilities that use FES bikes is available from Paralysis Resource Center Information Specialists.

Treadmill or locomotor training resources:

The UCLA group has developed a treadmill training being manufactured by Robomedica, Inc . The advantage of this system is the depth of expertise in the development team, led by prominent researchers Reggie Edgerton and Susan Harkema. This is the unit Reeve used. It has also been used extensively in clinical trials for spinal cord injury in the U.S. and Canada. Contact Robomedica at 949-788-0525 or visit the Internet site http://www.robomedica.com/

Mobility Research, based in Tempe, AZ, has been selling a harness and treadmill training set up for several years. The LiteGait system can be rented or purchased directly (a pediatric model is $2250; various other models are priced up to $10,500, plus the treadmill, at $2950). The company says it has many stories of paralyzed users getting function back. Its treadmill trainers are available around the U.S. Contact them at www.litegait.com or toll free 1-800-332 WALK (9255).

Other locomotor systems are coming to the market. The Lokomat, from Switzerland, is being tested at the Rehabilitation Institute of Chicago and the National Rehabilitation Hospital in D.C. The Miami Project to Cure Paralysis also has a Lokomat. The device is described as an exoskeleton (an external skeleton) with robotic joints at the hip and knee to guide the user’s legs as they step along the treadmill. The technology is intended to reduce the need for some of the therapists during a training session. See the device at http://www.hocoma.ch (click on the English version).

HealthSouth, the big rehab center chain, has introduced the AutoAmbulator, a harness and treadmill rig inspired by a visit to UCLA’s treadmill program several years ago. The company rolled the product out in 2003, beginning at their inpatient rehab facilities. Contact www.autoambulator.com for more information.
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