Where Are They Now? Orthotic Care of Adult CP Patients

What happens to those adorable poster children with cerebral palsy? They don't fade away. They grow up, they grow old; and they continue to have cerebral palsy and face its changing challenges every day of their lives. And yet many of them seem to disappear. Where have they gone? Isn't there a Volume II--a sequel to the continuing adventure/drama of their younger lives? To answer these questions, one must first acknowledge that CP is not a simple condition; it's not even a single condition. There is much to know about it, and research is helping us to discover more each day, as we fill in the blanks with some rather surprising new information. For orthotists to be able to do their best for the adult CP patient, they will want to know more about the complex challenges each patient may face -- and the related factors that affect their attitudes, their choices, their self-image, and the very course of their lives. Bracing alone, without consideration of the layers, textures, and colors that form each patient's life, is not nearly as effective as a bracing solution that takes into account the complete landscape of pertinent influences and experiences. The Problems of CP The vast majority of children with cerebral palsy will live to adulthood, agrees Mark P. DiFazio, MD , (chief, Child and Adolescent Neurology Service) Walter Reed Army Medical Center. "Adults with CP may have a shorter lifespan; however, this may not be because of cerebral palsy per se, but because of co-morbidities. For instance, if you have cerebral palsy, you may also have epilepsy, which requires treatment with anticonvulsants. Because these medications can be associated with bony side effects, fractures and, complications from fractures may occur." Mark DiFazio, Walter Reed Army Medical Center It's a chain reaction that spirals downward: A person who begins with thin bones because of epilepsy, poor weight-bearing, and orthopedic deformities, is also now at a greater risk for fracture. Many moderately to severely impaired adults ultimately make the choice away from independent ambulation and target more functional mobility instead such as a wheelchair, says DiFazio. Then, a more sedentary lifestyle may place them at greater risk for illnesses such asType II diabetes and heart disease. "There's a real push among exercise specialists to get at this population with disabilities because it will not only help their strength and balance, it may also help their cardiovascular health," says DiFazio. He points also to associated complications such as progressive orthopedic disability, which comes with a tendency for fracture during manipulation by a physical or occupational therapist. Progressive hip dislocation and then early hip degeneration are also possibilities, and may cause a need for femoral head re-section, where the femoral head is actually removed in an effort to resolve the patient's pain. "Chronic pain as a result of early hip arthritis is a frequent complaint of many patients with moderate to severe cerebral palsy," DiFazio observes. Duncan Wyeth, Adult CP Patient, Activist Consider another kind of chain reaction that leads downward: the effect of disability on emotional status and self-esteem, educational and employment opportunities, social activities and communication with others, and other important areas of life. Duncan Wyeth , executive director, Michigan Commission on Disability Concerns, cites the 2004 National Organization on Disability (NOD) Harris Survey of Americans with Disabilities ( www.NOD.org ): As a group, people with disabilities tend to experience a lower level of education and a higher level of poverty, and a higher level of unemployment, ergo, less disposable income, and more limited economic access to the recreational opportunities most likely to contribute to regular physical exercise, and consequently to their health and wellness. "The end result is an exacerbation of loss of range of motion, loss of stamina, loss of physical functioning among a group of people who in many ways can least afford to lose those attributes, says Wyeth, who is a 59-year-old adult with cerebral palsy. The influence of family and community can also have a vital influence on the future of the adult with cerebral palsy. "I've always said that if you are going to have a disability, choose your parents well," quips Wyeth. "I was fortunate to have parents who always allowed me to participate in a full range of activities as if I had not had a disability." The Variable of Age Murray Goldstein, DO, MPH, UCP Age, cruel and impartial, adds its own problems for adults, regardless of their health history. Recent statistics show that nearly 50 percent of people aged 65 or older have some type of physical, psychiatric, or cognitive disability. For adults with cerebral palsy, as for the rest of the "normal" aging public, it's only going to get worse. According to DiFazio, the number of cerebral palsy patients who are surviving into adulthood is increasing with improved medical careat least half a million adults have cerebral palsy. "Because of the difficulty with their body's mechanics, aging cerebral palsy patients develop earlier arthritis, earlier pain," says Murray Goldstein, DO, MPH, medical director for United Cerebral Palsy. "And, generally speakingthey seem to age at a faster pace: the usual dysfunctions associated with aging (gastrointestinal functions, bladder control, bowel control) become an increasing problem for everyonebut for many of those with cerebral palsy, it appears earlier in their lives than we would expect." Janet Lord, MD Berkeley, CA Janet Lord, MD, Berkeley, California, notes that over the last 10 to15 years, people have begun to question what happens to those with cerebral palsy once they reach adulthood. Virtually all groups participating in a Rancho Los Amigos study on adults with early onset disabilities experienced a kind of premature deterioration of their musculoskeletal functioning, reports Lord. "Spasticity doesn't actually physically worsen, but they get tighter because we all get tighter as we get older," Lord clarifies. Thus, persons who were marginal walkers in adolescence may require a wheelchair or a scooter at least part of the time as early as their 20s. People who are good walkers often don't experience trouble until they are in their 40s or even 50sstill younger than the general population. "The problem that we are seeing is that the orthotic and rehab community really doesn't know what to do about this. They may attribute it to the cerebral palsy without recognizing that there has been a functional decline. Sometimes that's correctable, and sometimes it's not." Todd Stone, CPO, Teter O&P Todd Stone , CPO, Teter Orthotics & Prosthetics, has worked with cerebral palsy patients for nearly 20 years, and although he treats a large population of children and adolescents with cerebral palsy, he admits that the adult patients tend to fall through the cracks. Children are generally in a mainstream program in which they receive structured care. They're continually being brought in for replacement of devices due to growth. By age 14 to 20, Stone notes, their growth slows and they don't need as many replacement devices. Also, at that time, many of them make a major lifechoice: Are they going to continue to try to be functionally ambulatory, or are they going to get a power chair and get bracing for positioning only? If they choose to use a wheelchair, Stone shifts focus away from the feet and concentrates on trying to find ways to keep their hands in a functional position. If they choose to continue striving to be functional, he says his task is then to keep them as functional and independent as possible for as long as possible. Despite the growing population of adults with cerebral palsy, the number receiving any kind of regular orthotic care is shockingly low. Stone offers an example: "For the last eight years, I have seen at least 60 or 70 kids for braces per yearsometimes as many as 100. The amount of adults I see on a normal basis is about five or ten a year." Stone's colleagues report similar findings. "Ideally, I try to watch them very closely when they start getting to that age," says Stone. "I've treated many of these people since they were little, and I always try to keep in contact with the therapist or the family and do some sort of follow-up at least once a year to determine if there is something we can do or something we can prevent." CP Management Recently, great strides have been made in the treatment of spasticity and lack of proper function over the last five years, including the use of Botox® (botulinum toxin), baclofen, and other therapies. Kimberly Anzelmo, a patient at Walter Reed Army Medical Center. Bracing and splinting are also an important part of patient treatment, believes DiFazio. "Although night splints for children are controversial, the data seem to show that you can't maintain range of motion just by doing some stretches once in a whilethat you really need to maintain that muscle in a stretched position. And when we do our interventions such as intrathecal baclofen, Botox, or oral medications to relieve tone an important adjunct is maintaining the muscle in a stretched position with splinting." DiFazio recommends coupling splinting with exercise when possible. DiFazio identified specific devices that appear to offer significant benefits. For instance, some braces, if used early, may actually change the history of hip deterioration, he observes. The SWASH brace has been shown at least preliminarily to change the natural history of hip dislocation in spastic cerebral palsy, he notes. Spastic adductors tend to push the femoral head posteriorally and superiorly out of the acetabulum. The SWASH braces appear to change that vector into a more normal direction, lessening the degree of hip dislocation, says DiFazio. In conjunction with Botox, it may actually change the growth of that femoral head and perhaps make it less likely to dislocate in the future, he adds. DiFazio feels that while intervention in childhood is important, it is equally important to take a long-term view and attempt to preserve the integrity of hips and bones throughout the life of a patient with cerebral palsy. Stone cites success with Cascade's DAFO®, and has shifted quite a bit of bracing to this type of dynamic AFO. The total contact design helps reduce unwanted muscle tone and maintains the feet in a somewhat better alignment, he explains. Easton Law, 20-year-old college student with spastic hemiplegia, with a goal of being a radio announcer. Walter Reed Army Medical Center. Lord has a number of patients who come to her for the first time in their 40s because they have gradually developed contractures and foot deformities which impede their ability to walk. For ankle contractures, Lord's recommendation is surgical. However, people who develop hip and knee flexion contractures are more difficult to resolve, she explains. Sometimes they can be released surgically, sometimes not. Especially in people who are still walking into adulthood, back pain is more common and more difficult than in the general population. Cerebral palsy patients' walking is affected because they have pain and are developing increasing tightness around their hips and their knees so their crouch gets worse. Although surgery sometimes can be useful to help them loosen up again, the convalescence may be too difficult and their walking too marginal before surgery. They just don't have enough recovery power and choose to go into a wheelchair. However, good bracing is useful, she adds, "if people can keep after it." Lord notes that she has had success with using Botox injections coupled with a Dynasplint® for adults who develop upper-extremity contractures. "It's harder to do that work with Botox in the lower extremities because the muscle groups are so large it's hard to really get enough Botox in there to be meaningful." Since the anti-spasmodic effects of Botox only last for about three months after the injection, it allows the patient to stretch during that time. It's a mechanism to facilitate a rehabilitation programbut not a selfcontained treatment. As the patient ages, Lord observes that in practical reality, more equipment is needed. For instance, the patient starts to use a walker, then a manual wheelchair, then, if able, an electric wheelchair or scooter. He gradually becomes more equipment-dependent. "Proactive bracing and activity is really the way to keep them going as much as possible, and that requires dedicated ongoing monitoring every two to three years." Mark Taylor, University of Michigan The orthotist's focus, of course, is to prevent deformity from developing, but often adult patients are already dealing with multiple deformities, points out Mark K. Taylor , MLS, CPO, University of Michigan. "We're trying to prevent further progression and to keep them as comfortable as possible, while still trying to figure out if there is anything orthotically that we can do to make them more independent or more stable." He stresses the importance of spending as much time as necessary to evaluate patients with severe abnormalities, and deciding what will work, what can be corrected, and what must simply be accommodated. "Sometimes the contractures are such that no amount of orthotic intervention is going to bring them back to normal without some sort of surgical intervention," he admits. "The last thing you want to do is throw all this new expensive technology at patients who are not candidates for it." Taylor advises, "In dealing with new cerebral palsy patients, get acquainted with each patient and find out what their level of disability is as far as their biomechanical challenges," he advises. "Really understand their biomechanical needs and then try to determine honestly if you have the skills, knowledge, and technology to be able to provide something for them that would be beneficial." "The old saying is, regarding older patients with plantarflexion contractures: 'If you can't get their heels to the ground, you get the ground up to their heels!' You do that by utilizing wedges and supports, among other things." Lateisha Green, 21-year-old with spastic hemiparesis. Walter Reed Army Medical Center. Aging patients often wind up with knee-flexion contractures and hip-flexion contractures, notes Taylor. "When you have those three jointsthe ankle, knee and hip suspended, and as you are getting weaker, it becomes very difficult to stay upright with those three joints having tightness, and that tightness progressing. Orthotically, the key is can we prevent that progression; and can we do it in a tolerable manner, something that patients will use?" Stone reminds us that the one constant in a cerebral palsy patient's life is the perpetual need to address contractures. After five years of wearing a brace, the patient may return and complain of a developing sore on his heel and ask that the brace be fixed. However, what has happened is that the patient has lost that battle and the contracture is worsening so that the brace no longer fits appropriately. Stone tries to help patients to stay ahead of the game as much as possible, encouraging them to sleep with a brace at night. There are many hand splints and braces, and some good night-time splintsincluding sheepskin-lined devices that can be adjusted for contractures. On one hand, the prospect of sleeping with a boot on your foot every night might seem pretty grimbut consider the alternatives: repeated surgeries to relieve the contracture, or simply giving up the battle and sacrificing ambulation for a wheelchair. One way or another, something must be done to keep the muscle imbalance at bay, Stone emphasizes. Botox may help to delay the inevitable, but at some point, almost all cerebral palsy patients are going to have to have surgery, he believes. Weight gain can be a problem. Ambulation becomes less functional for them, and they just decide to use a wheelchair. "Sadly, that's a significant percentage of the cerebral palsy population," says Stone. "Nevertheless, you're always trying to do the DAFOs, get them in some sort of night splint, make sure that they maintain follow-up with you, and at some point, make sure they go back into therapy." The bottom line? Just do the best you can, Stone advisesa maxim that applies to both orthotist and patient. Judith Philipps Otto is a freelance writer who has also assisted with marketing and public relations for various O&P industry clients. She has been a newspaper writer and editor and has won national and international awards as a broadcast writer-producer.

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Focus on Advocacy: The 2005 ACA Annual Educational Conference & Exposition

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