Exercise is an important component in the overall treatment plan of neuromuscular disorders. As a client becomes physically fit, his mind opens to additional challenges and his spirit strengthens. Lifelong physical activity will improve function, independence and self-efficacy and will assist in reducing the progression of secondary complications and degenerative changes that typically accompany neuromuscular disorders.
Individuals with neuromuscular disorders (spinal-cord injury, stroke, traumatic brain injury, multiple sclerosis, muscular dystrophy, polio, postpolio and Parkinson’s disease, to name a few) are often released from medical care after receiving only a few months of rehabilitation. Many have very little hope of regaining more functional mobility or improving their level of independence. Speaking from more than 15 years of clinical exercise physiology and personal training experience, I know there are many stories worth telling and many achievements worth applauding that are fueled by medical science, university research and—most important—human determination. There has been considerable success in helping individuals with neuromuscular disorders advance to higher levels of function through consistent, dedicated, long-term assisted (one-on-one) exercise programs that provide physical and emotional support with appropriate exercises. This article’s purpose is to demonstrate that therapeutic exercise is highly personalized and carefully programmed and also to share my best procedures and practices.
There are a few primary elements that should be considered when training clients with neuromuscular disorders:
1. Client and Trainer Must Mesh. A client’s condition must be matched with the experience of the trainer and/or exercise physiologist. Select clients based on their diagnoses and their physicians’ approval (see “Questions to Ask Referring Medical Professionals” on page 59). Fitness professionals must have experience and confidence (demonstrated ability) with the exercise protocol for any given neuromuscular disorder.
2. Programming Must Be Personalized. The exercise program is custom designed according to the findings of the evaluation process for each client. A well-designed exercise program should be challenging and achievable, enjoyable and rewarding, intense and interesting. Using personalized training in two to three 60- to 120-minute sessions per week for 8–12 weeks can result in considerable improvement in speed, coordination, agility, quickness, balance, reaction time, musculoskeletal strength, musculoskeletal and cardiovascular endurance, flexibility, power, body composition and motivation to exercise.
3. Consider Each Client’s Fitness Level and Age. Clients should be able to exercise without becoming completely fatigued. Use of a reliable heart rate monitor along with Borg’s Rating of Perceived Exertion Scale is helpful for monitoring the intensity of exercise sessions. For these clients, a 10-point scale is recommended; this will be discussed further in the “Cardiovascular Training” section. (For general information on the Borg scale, see “Comparing Intensity-Monitoring Methods,” IDEA Fitness Journal, April 2005, pp. 38–41).
4. Progress Exercise Programs Safely. Customize each client’s program based on the physician’s recommendation, the client’s personal short- and long-term goals, and a comprehensive evaluation that includes a manual muscle and joint range-of-motion (ROM) test; a cardiovascular assessment; a posture and gait analysis; and a balance and body composition test. The extent of dysfunction for clients with a neuromuscular disorder may not be known for several years postinjury, as dramatic returns of function have occurred with the diminution of shock to the central nervous system. Hence, training programs for such individuals require ongoing physical assessments and adjustments.
When designing and adjusting a client’s exercise program, give careful consideration to helping the client develop functional skills that will improve his level of independence. A useful model to follow is the SAID principle (Specific Adaptations to Imposed Demands). Basically, this means that the more similar the training activity is to the target activity, the greater the carryover from training to performance. SAID takes into consideration three elements: the specific action (what is the target activity?); the joint angle/motion (what anatomical term would be used to describe the motion of the joint?); and the body position (what position is the body in during the movement of the target activity?). Many individuals with neuromuscular disorders share the goal of walking, and SAID can keep you focused on designing exercise programs that will help clients either relearn how to coordinate gait mechanics or relearn gait.
To reach strength training goals, clients must follow a consistent, well-designed program that provides balanced development to all parts of the body. A client’s body will do what the client trains it to do. This is why it is important for clients to define their goals and stay focused on them. Work with clients to develop short-term (6-week), long-term (6- to 12-week) and ultimate strength goals. An example of a short-term goal would be to develop sufficient muscle strength to lift a bag of groceries or a small child. A long-term goal might be to develop the muscular strength to work on one’s feet all day. An ultimate goal could include learning the biomechanically sound method of improving a motor pattern for skill development; for example, gaining enough strength in the specific muscles at the proper joint angles to become an efficient expert in the art of cross-country skiing.
Use a strength training protocol that keeps repetitions between 8 and 12. My program uses a 1- to 2-set protocol, because of time constraints. The focus is on a balanced program that includes aerobic conditioning, muscular strength training, muscular endurance training, balance training, functional activity training, mobility activities, flexibility and posture.
The types of strength training you can use are isometric, isotonic, isokinetic and/or manual resistance. In manual resistance strength training, the trainer acts as a “human isokinetic machine” by adjusting her resistance according to the client’s capability. For a client with a neuromuscular disorder, assistive movement with mental practice is particularly effective in stimulating the damaged neural pathways. As the fitness professional moves the client’s joint structure through its full pain-free ROM, she verbally encourages the client to practice that movement in his mind.
Additionally, powered equipment providing continuous repetitive motion of the involved extremity along with mental practice will facilitate greater neurological adaptations (increased motor unit recruitment, increased rate of firing and increased neural-impulse synchronicity at the neural-muscular junction).
Flexibility is the ability to move the joints of the body through the ROM for which they are intended.
Individuals with neuromuscular disorders should be stretched to prevent and alleviate adaptive shortening of the muscles; to reduce the frequency and severity of muscle spasms; to alleviate problems associated with joint contractures; to increase blood flow; and to correct postural deviations.
In my program, the primary flexibility exercises are passive and are manually carried out by a trained fitness professional. In passive stretching, the fitness professional applies the external force to the client, thereby controlling the direction, speed, intensity and duration of the stretch. The objective of passive stretching is to have the muscle permanently adhere to a lengthened position.
The following protocol can be used for flexibility training:
- Before beginning the exercise, tell the client to inform you if, at any time during the stretch, he can move the joint further into the ROM.
- Perform 3–5 repetitions for all stretches, unless indicated otherwise; hold each stretch for 5–10 seconds.
To ensure 10 seconds of stretching, gently move the joint to the point of slight discomfort (point of stretch) or until the client tells you to hold or stop. At this point, maintain the joint position and begin your count, constantly reassessing the client’s flexibility during the stretch. Close communication helps determine whether the stretch is sufficient or whether further continuation into the ROM is appropriate. If the client gives a positive signal, move the joint into a new point in the ROM until the client reaches a new point of slight discomfort. Continue counting at that point to complete the repetition. Finally, take the tension off the muscle for 1 second and proceed with the next repetition.
Keep the following safety measures in mind when manually stretching clients:
Never Exceed the Specified Degrees of Motion for Any Exercise. Exceeding the degrees of motion will cause laxity in the ligaments, which will compromise the structural integrity of the joint and could even lead to an injury such as a subluxation or dislocation of the joint.
Stretch Slowly. Moving into a stretch too fast can elicit the myotactic stretch reflex. This reflex protects the joint from injury by preventing the muscle from stretching too far, too fast. The stretch reflex is mediated through the muscle spindle. When stretched too fast, the muscle spindle sends a message to the muscle, instructing it to contract. When this occurs, the muscle becomes shorter, stiffer and less pliable.
Do Not Stretch to the Point of Pain. Only move the joint to the point of slight discomfort. Allow the joint structure to reach a new point of slight discomfort in the ROM. If the client has loss of sensation and is unable to communicate that he is experiencing slight discomfort or pain, look for the following signs: The client reports pain in the abdomen or back; he starts perspiring; he displays distorted facial expressions; or you feel the muscle begin to resist the stretch.
Do Not Stretch Through the Onset of Muscle Spasms. Instead of trying to stretch through a spasm, gently reduce the stretch until the spasm subsides. Once the spasm is resolved, proceed slowly and gently with the stretch.
Individuals with neuromuscular disorders need aerobic conditioning in a (preferably) daily exercise program to decrease the risk of coronary artery disease; to increase energy and decrease fatigue; to increase cardiovascular and musculoskeletal endurance; and to break up the vicious circle of disability.
The vicious circle of disability operates like this: Following a neuromuscular disorder, an individual characteristically adopts a sedentary lifestyle that typically leads to a decreased incentive to exercise. A decrease in activity leads to physical deconditioning. A decreased physical work capacity is the outcome from the secondary deconditioned disuse syndrome. Consequently, the individual’s % body fat increases, which increases the risk for coronary artery disease.
I use the Karvonen formula instead of the standard “(220 − age) × relative intensity” to determine the client’s target heart rate zone. The Karvonen formula takes into account the client’s resting heart rate, whereas the standard formula compares the client to the age-matched norm within the general population. (For more information on the Karvonen formula, please see “Comparing Intensity Monitoring Methods,” April 2005 IDEA Fitness Journal, pp. 38–41.)
Owing to limitations imposed by disability, a client may be unable to reach his lower target heart rate. For example, an individual with a high-level spinal-cord injury may lack cardioacceleration and myocardial contractility owing to an absence of sympathetic stimulation to the cardiac muscle. On the other hand, the client may exceed his upper target heart rate because of an anticipatory response to exercise and/or a variety of heart-rate-altering medications. In both cases, concurrently taking the client’s working heart rate and eliciting his subjective rating of perceived exertion is instrumental in making the appropriate adjustments to ensure that the client is training at a safe and effective intensity.
To decrease internal core temperature and avoid overheating in your clients, coach them to wear loose-fitting clothing; to drink water liberally before, during and after exercise; to make use of a fan and/or a cool damp towel draped over the shoulders; and to void prior to the exercise bout in order to reduce the risk of an autonomic dysreflexic (AD) episode. Autonomic dysreflexia can occur in individuals who have either incomplete or complete spinal-cord injuries with lesions of the seventh thoracic segment (T-7) and above. AD is present when the individual’s blood pressure suddenly increases from 90/60 millimeters of mercury (mm Hg) to 300/160 mm Hg. It is a life-threatening condition with the following physical findings: anxiety, flushing above the level of the injury with excessive sweating, pallor below the level of injury, goose skin, bradycardia or tachycardia, arrhythmias, change in the level of consciousness, visual-field defects and maybe penile erection.
Mode. Clients should have a variety of cardiorespiratory equipment to use. Some examples include an arm cycle ergometer, a Reebok Body Trec elliptical trainer, a Cybex Fitron Bike, the Kinetron Exercise and Training System, a NuStep® Recumbent Cross Trainer, Precor fitness equipment, a Schwinn Airdyne Bike, a Stairmaster Spinnaker exercise bike, a treadmill and an EasyStand Glider.
Conditioning Intensity. Detrained, sedentary individuals should train at 50%–60% of heart rate maximum (HRmax); those with a low cardiovascular fitness level should aim for 60%–70% HRmax; persons with recent, consistent cardiovascular fitness programs should train at 70%–80% HRmax.
Duration. When an individual is able to complete up to 12 minutes of continuous, rhythmical activity, increase duration in accordance with the client’s short- and long-term goals. Sedentary, deconditioned individuals should follow a discontinuous protocol until they can complete 12 minutes continuously.
Frequency. Train a minimum of 2–3 days per week. Encourage daily cardiovascular exercise.
Heart Rates. To monitor the improvement in a client’s cardiovascular fitness, record pretest and working heart rates and a 1-minute recovery heart rate. If necessary, record a 5-minute recovery heart rate. Count the number of beats felt in 10 seconds and multiply by 6. This is especially effective for recording the working heart rate, because of the tendency for heart rate to decline rapidly at the completion of the exercise bout. The Borg scale is used in conjunction with the recorded heart rates. The client rates his subjective perception of effort on a 10-point scale, which is recommended for subjects with nervous system disorders that can interfere with an increase in heart rate. Any number of neuromuscular disorders can have heart-rate-altering effects independent of the effects of the heart-rate-altering medications that clients with neuromuscular disorders are typically taking. Furthermore, the 10-point scale correlates well with peak oxygen uptake, mechanical work and maximal heart rate.
Individuals with neuromuscular disorders typically have impaired balance owing to deficiencies in movement capability and a partial or complete absence of sensation and proprioception resulting from damage to the central nervous system. The focus of balance training is to realign the center of gravity. Like any fitness component, balance must be challenged with a progressive program in order to improve. Subsequently, balance progresses in a cephalocaudal direction (head to toe); from static to dynamic; and from a wide to a narrow base of support. The visual, somatosensory and vestibular systems are challenged by performing the balance activities with eyes closed, on an unstable surface and with an upward posterior head tilt, respectively.
Individuals with neuromuscular disorders have a higher risk of developing secondary anterior, posterior and lateral postural deviations. The anterior and posterior deviations that might develop are forward head, forward shoulders, kyphosis, winged scapulae, flat back, lordosis, abdominal ptosis, hyperextended knees and drop foot. The potential lateral postural deviations are scoliosis (C-curve, reverse C-curve, reverse S-curve, S-curve), bowlegs (total bow, lower bow), knock-knees, tibial torsion (internal or external) and/or inverted or everted feet.
These postural deviations are progressive. If left to advance, functional deviations can develop into structural deviations. Furthermore, secondary postural deviations can eventually become the source of chronic muscle pain, nerve root compression and restrictive lung disease. The potentially life-threatening effect of developing secondary postural deviations can be obviated by adherence to a formal corrective exercise program. The program should include specific exercises to stretch muscles that have adapted to a shortened position and to strengthen muscles that have adapted to a lengthened position. Even more important, preventive corrective exercises should be routinely implemented to prevent the postural deviations from occurring in the first place.
There are a variety of devices for the preliminary stages of gait training. Continuous passive motion (CPM) machines continuously move clients’ body parts through full ROM to help the clients relearn correct patterning relative to walking. We encourage clients to try to take over the action of the machine instead of passively allowing it to move their joints through the full range. As some individuals with neuromuscular injury regain function, they will progress from CPM to harness-assisted treadmill walking and eventually to the parallel bars—their first actual walking experience postinjury.
To help a client ambulate in a continuous-motion pattern with a contralateral movement pattern, trainers who work with me analyze several aspects of gait, including step length, step width, stride length, step height (1⁄4-inch ground clearance) and weight distribution. We also make sure we correct the following deviant gait patterns: drop foot, hip circumduction, inverted/everted feet, walking without reciprocal motion, straight-line walking, scissor gait, walking with hyperextended knees and step-to-gait.
To correct improper gait mechanics, we address the factors that inhibit walking ability: We identify the pathophysiology of the neuromuscular disorder—for example, the level of spinal-cord injury; correct bad habits; help clients overcome fear of falling; and help them develop confidence.
“Speaking generally, all parts of the whole body which have a function, if used in moderation and exercised in labors to which each is accustomed, become thereby healthy and well developed, and age slowly; but if unused and left idle, they become liable to disease, defective in growth, and age quickly.” This quote from Hippocrates, the “father of medicine,” is engraved on a plaque hanging in my office. The observation was theoretically true in his time and is proven more true with each new scientific study on exercise and physical well-being. Try posting the quote in your office and watch what happens. I’ve observed that my clients instantly feel more motivated to exercise after reading it.
As Socrates demonstrated, important fundamentals become clear when they are stated in response to a series of questions. As a clinical exercise physiologist and an educator, I try to respond to the needs of my clients and my students. I impress on each group the importance of preventive intervention in order to stave off disease.
This philosophy rings especially true for training clients with neuromuscular disorders. Preventing conditions from manifesting themselves will allow clients to continue living an active, unrestricted lifestyle. Remember, the purpose of exercise is twofold: injury prevention and performance enhancement.
Enjoy the process of watching your clients grow—from taking their first steps to developing an exceptional fitness level along with superb athletic skills. Fundamentally speaking, the process is the progress!
To reach strength training goals, clients must follow a consistent, well-designed program that provides balanced development to all parts of the body.
Clients will probably feel better and perform better if they comply with the exercise programs you design for them. Each program should be designed in accordance with the type of neuromuscular disorder and its level of severity. It is of utmost importance that the client’s physician continually assess the effect of exercise on the individual. Before you begin training a client with a neuromuscular disorder, contact her physician and ask the following questions.
- How well controlled is my client’s neuromuscular disorder?
- How often has my client been to your office over the past 2 years?
- Does my client have any coexisting conditions (hypertension, hypercholesterolemia, coronary artery disease or health challenges) that I have to pay attention to?
- My client has indicated that she is taking medications. Will these medications influence the ability to control the neuromuscular disorder and/or engage in regular physical activity?
- Are there any precautions or considerations that I should be aware of before beginning my client on a regular physical activity program?
- If I am concerned about any events or problems, is it okay to contact your office for advice or recommendations?
How big a difference can an exercise training program make? Here and on page 61 are two case studies of clients who reported their physiological milestones and the status of their psychosocial issues after 12 weeks of formal exercise (2–3 sessions per week, 1–2 hours per session).
Referral Diagnosis: incomplete quadriplegia, C4, C5, C6, with central-cord compression syndrome.
- Sleep has improved. He consistently sleeps uninterrupted for 8–10 hours per night.
- Strength has dramatically increased. He is able to load and unload his 45-pound scooter into his sports utility vehicle. He can manage his own luggage when traveling. He can carry a 20-pound backpack while walking. He can step into extremely high vehicles unassisted. He is able to ride a Jet Ski™ independently.
- Sensation is improving. He can distinguish between hot and cold in his upper extremities, including both hands. Thermoregulation in his left hand is i ntact. Perception of light touch and pressure in his lower extremities is normal.
- Cardiovascular endurance has increased. His walking is not limited to short distances. His time and distance to fatigue have greatly improved. His stamina has improved. He has more energy, less fatigue and more endurance.
- Functional mobility has improved. He can walk 600 yards unaided and without looking at his feet at a self-selected pace, including climbing up and down stairs.
- Balance has improved. He can stand and reach in all directions for objects in his environment.
- He can now drive a Ford Explorer SUV without any adaptive equipment.
- Speed, acceleration, agility, quickness and power have increased. He can initiate movement from a seated to a standing position and also from standing to walking more rapidly.
- He was underweight when the program began. His total body weight has increased by 3 pounds. Nutrition status has improved.
- Independence has increased. He can transfer from the floor to an upright standing position without assistance. He finds it easier to dress, bathe, walk and exercise.
- He has far fewer episodes of postural hypotension and has not had an autonomic dysreflexic episode in 2 years.
- Spasticity occurs less frequently and with less severity, especially when he wakes up in the morning. He can sleep through the night without having intense muscle spasms. He can walk for longer periods at a quicker pace without triggering a muscle spasm or clonus in his lower extremities.
- Flexibility has improved in his cervical region, spinal region and upper and lower extremities.
- Postural alignment has improved. His low-back pain has been completely resolved, and there has been a decrease in lumbar lordosis and abdominal ptosis.
- Mental status has improved. Confidence has increased. Learning about his body and his spinal-cord injury has given him the confidence to travel and lead an independent lifestyle. He is much happier with his physical appearance. He has become more socially active. He is once again able to write and to compose and play songs on his electric and acoustic guitars. He is painting on a regular basis.
- Improved status of secondary complications: He has not had any urinary-tract infections or decubitus ulcers since entering the program.
- Pain is completely resolved.
Individuals with neuromuscular disorders typically have impaired balance owing to deficiencies in movement capability and a partial or complete absence of sensation and proprioception resulting from damage to the central nervous system.
Referral Diagnosis: cerebrovascular accident (CVA), right cerebral hemisphere
- Sensation has improved in both feet and especially in his right toe. Sensation has returned along the lateral aspect of his upper and lower legs. Sensation is intact up to 4 inches below his knees.
- Strength has improved. He can bend forward from a standing position to pick up a free weight, a barbell and other objects from the floor.
- Walking time and distance to fatigue have increased. He can walk half a mile unassisted at a self-selected pace.
- Balance has improved significantly. He can stand still for up to 60 minutes without feeling unstable.
- Stamina has improved. He has more energy, less fatigue and increased musculoskeletal and cardiovascular endurance.
- Low-back pain is almost completely resolved. Occasionally, there is a slight awareness in this area. His friends have noticed an increase in the circumference of his chest, shoulders and arms and a decrease in his waist circumference.
- Of most meaning to him is his ability to once again ride his Harley-Davidson motorcycle.
- His nutrition status has improved. He has adopted healthier eating habits.
- Flexibility has improved, especially in his lower extremities.
- Sleep has improved. His quality and quantity of sleep are almost the same as before his CVA.
- His power, strength, agility, acceleration and quickness have improved. He initiates movements more quickly; he walks faster; and he can decelerate movement without feeling unstable.
- He can initiate a change of direction forward, sideways and backward.
- Spasticity is completely resolved. It has been months since he has had a muscle spasm, especially in his right foot.
- Secondary complications have been nonexistent, with the exception of one urinary-tract infection.
- His social life has improved. He was single before the injury. He was married this past spring!
With clients who have neuromuscular disorders, the guiding principle is to practice preventive intervention in order to attenuate the risk of developing degenerative changes and/or secondary complications. Passive static standing for 20–60 minutes per session benefits every organ system in the body. A variety of standing frames can be used for this purpose, including standing tilt tables, hydraulic standing frames, electric standing frames or EasyStand standing frames. Passive static standing has many benefits:
- 1. It retards the osteoporotic changes that take place in the bone tissue of the paralyzed or paretic area/s. The interest must be in preventing bone loss as soon as possible following a neuromuscular disorder in order to reduce the risk of fracture.
- 2. It improves anterior/posterior and lateral postural deviations.
- 3. It improves flexibility, especially of the individual’s hip flexors, knee flexors and plantar flexors.
- 4. It improves strength in the extensor (antigravity) muscle group, includiung the cervical, spinal, shoulder-horizontal, hip and knee extensors.
- 5. It helps clients accrue psychological benefits from standing at the same height as they did prior to the neuromuscular disorder.
- 6. It decompresses the diaphragm, which improves breathing and voice quality.
- 7. It decompresses the organs, particularly the small intestine and urinary bladder. The small intestine aids in the digestion and absorption of food, and the urinary bladder relieves the pooling of urine in the base of the bladder, decreasing the risk of urinary-tract infections.
- 8. It disimpacts the bowels, thus attenuating the gas and gastrointestinal distress associated with impacted bowels.
- 9. It improves circulation, which can decrease pedal edema and help protect against abnormal thrombus formation. Heart rate increases with standing, since the heart has to work harder to overcome gravity.
- 10. It improves trunk balance, especially as chest support is gradually removed. As the harness is removed or loosened, symmetrical weight distribution along the right and left leg begins to develop.
- 11. It decreases fatigue. Individuals with neuromuscular disorders experience fatigue from excessive prolonged sitting.
- 12. It decreases the risk of decubitus ulcer formation. It is common for persons with neuromuscular disorders to acquire decubitus ulcers through prolonged wheelchair sitting, owing to continuous shearing forces applied to the vulnerable areas of the olecranon process, ischial tuberosity and calcaneus. Impress on each group the importance of preventive intervention in order to stave off disease.
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