William H. Macy is known as a "cleanup hitter" for his talent as a character actor. He did a laudable portrayal of the salesman with Cerebral Palsy (CP) in the 2002 original TV film Door-to-Door. The movie was based on the true story of Bill Porter, a door-to-door salesman born with CP.

Macy could “talk the talk,” whereas Americans with CP must “walk the talk” . . . daily. Still, CP has no cheerleaders, role models, or spokespersons to request more research funds or compassion; there’s no Michael J. Fox, Jerry Lewis, or Lou Gehrig for public service announcements.

In the 1860s, English physician William Little penned the first medical insight into a “strange malady that afflicted children in the first few years of life and seemed to cause stiffness or spastic muscle contractions in legs and arms.”

The United Cerebral Palsy (UCP) Foundation estimates nearly 800,000 U.S. children and adults have one or more CP symptoms. The Atlanta-based U.S. Centers for Disease Control and Prevention (CDC) states each year about 10,000 U.S. babies will develop CP.

‘No cure’
“It’s important to know that CP is NOT a disease; it’s NOT something you can catch, nor is it something that is progressive. Rather, CP is a group of conditions,” the Journal of Rehabilitation emphasizes. The March of Dimes notes spastic CP occurs in 70-80 percent of those affected. “In about 70 percent of cases, CP results from events before birth that can disrupt normal brain development.” Lack of oxygen reaching the fetus during labor and delivery contributes to a minority of CP cases, found a report by the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics.

Baltimore-based Johns Hopkins Health System claims CP “varies greatly in severity.” It may not be diagnosed until motor delay becomes significant, between the ages of six and 18 months. “There is no cure; the brain lesion can’t be repaired. Much can be done to diminish the motor deficits that arise due to the lesion: physical therapy, bracing and positioning, medications, nerve blocks, orthopedic surgery, or neurosurgery.”

The Mayo Clinic adds that most children with CP don't have apparent problems in the womb and birth, but some factors may increase CP risk: Babies that are premature or have a low birth weight; fetuses in a feet-first (breech) position at labor’s onset; complicated labor and delivery; maternal infection during pregnancy, and health problems in the mother during pregnancy that impair normal blood circulation to the uterus and placenta.

The placenta is an unborn baby's life support system, the March of Dimes stresses, and placental problems are among the most common complications in the second half of pregnancy. Foremost is abruption, where the placenta peels away from the uterine wall, partially or almost completely, before delivery. This boosts the risk of premature birth, and studies suggest abruption contributes to about 10 percent of premature births, risking health problems during the newborn period, lasting disabilities, and even death.

Wide variety
Because many people with CP need long-term services or care, CDC (1-800-232-4636) figures the average lifetime cost for one person with CP is $921,000 in 2003 dollars. Direct medical costs, such as doctor visits, prescription drugs, and inpatient hospital stays, make up 10 percent. Direct non-medical expenses, such as home and car modifications and special education, make up 9 percent. Indirect costs, which include the value of lost wages when a person dies early, can’t work, or is limited in the amount or type of work he/she can do, make up 81 percent of the costs.

The American Academy of Family Physicians says diagnosis including metabolic and genetic disorders, and “treatment goals are to improve functionality and capabilities toward independence. Multi-specialty treatment teams should be developed” around the needs of each patient to provide continuously updated treatment plans. Complications include spasticity and contractures, feeding difficulties, drooling, communication difficulties, osteoporosis, fractures, pain, and functional gastrointestinal abnormalities contributing to bowel obstruction, vomiting, and constipation.

Doctors claim “it’s important to realize CP is a spectrum of movement disorders, not a specific disease, and consists of a wide variety of physical manifestations, (plus) a wide variety of causes.” To add confusion, in many cases the cause is never found and there is a “spectrum of associated findings that are commonly found.”

CP is the most common motor problem in children, and is relatively uncommon in the overall population. Authorities say “it’s important to realize CP is a motor deficit from a non-progressive lesion of a developing brain; significant worsening of function isn’t always what the future holds.”

CDC asserts CP causes “can include bacterial meningitis and other infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury.” Some “can be prevented.” Helmets and car seats can prevent head injuries that might result in CP; another is kernicterus, a kind of brain damage that happens when a newborn baby has too much jaundice. Fetuses exposed to herpes B, which causes chicken pox and shingles, and infants exposed to the virus immediately after birth have a higher risk of CP than other infants, noted a study in BMJ (formerly the British Medical Journal).

Much improvement
With this in mind, UCP considers its mission to be: “advance the independence, productivity, and full citizenship of people with disabilities.” That includes The State of Disability in America, 65 pages of current research on life for the U.S. disabled, funded by the Life without Limits Project. It covers disability rights, healthcare, education, employment, housing, and organizing for change. There’s also been creation of a forecast designed by the Institute for the Future that identifies forces likely to have a major impact on the disabled.

Despite a CP diagnosis, doctors see “a host of opportunities” for treatment. One study showed half of the children diagnosed as having CP by 12 months of age “had so much improvement by the time they were 7 years old that they no longer had (Editor’s Note: something is missing here, but I don’t know what he means to say??) this will occur less frequently.”

Doctors contend that “even if a loved one does have a very poor diagnosis, the body can change with development. With improvements in brain imaging, it’s quite likely that with optimal care the outlook can be much brighter than what a parent may have seen as an uninformed observer. There are wheelchairs for mobility, medications for drooling, many feeding alternatives, communication devices, and “there are new treatments for spasticity.”

Antispasmodics are the most common medications used and can help relax tight muscles and reduce muscle spasms. Most antispasmodics are taken orally. CP treatments may include: Physical, occupational, or speech therapy; vision and hearing aids; orthotics; medications; surgery, and assistive technology.

MRI scans
A study in the Journal of the American Medical Association noted British and European researchers recommend magnetic resonance imaging (MRI) brain scans for all children with CP. The scans may help predict CP’s effects, giving parents more data about a child's condition. Researchers studied 431 children with CP at eight European study centers. The kids were born between 1996 and 1999, and all got checkups; 351 of them also got MRI brain scans. The scans were only for kids at least 1.5 years old and showed abnormal areas in the brains of all but 11 percent of the kids. The abnormal areas weren't all alike; some were bigger or smaller or in different parts of the brain.

Even better, the Mayo Clinic believes “you can help prevent CP before and during a pregnancy by adopting and maintaining healthy habits: eat nutritious foods, don’t smoke, avoid exposure to harmful substances, and see your health professional regularly.

Help prevent CP in a young child by minimizing the child's risk for sustaining a brain injury: take measures to prevent accidents: Make sure you’re familiar with the signs of jaundice in newborns; know how to prevent lead poisoning; keep a child away from people who have serious contagious illnesses, such as meningitis, and make sure a child's immunizations are up to date.

As for clinical trials, the Bethesda, Md.-based National Institute of Neurological Disorders and Stroke is doing physiologic studies of spasticity; Shriners Hospital for Children in Philadelphia is studying Botox for children with CP; the National Institute of Neurological Disorders and Stroke has been testing brain control of movements in CP; the University of Pittsburgh Medical Center has been checking power wheelchair joystick use in spastic CP, and the University of Arizona Dept. of Pediatrics, with Beijing Children's Hospital, has been studying acupuncture as complementary therapy.

Data, not advice
Children needing help with rolling over, sitting, crawling, walking, babbling, using words, feeding, learning new social or play skills, or meeting other developmental milestones may be referred to the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at Baltimore’s Kennedy Krieger Institute. Plus, the Family Resource Center at Nemours Children's Clinic in Jacksonville, Fla., has information and assistance for patients and their families. It offers audio tapes, videotapes, books, and staff assists patients and families by providing medical data resources. The center doesn’t give medical advice.

Also, the National Information Center on Children and Youth with Disabilities (800-695-0285) has a fact sheet with data on signs of CP and treatment, plus tips for parents and teachers. The National Institute of Neurological Disorders and Stroke has a brochure with data on early signs, diagnosis, causes, treatment, and where to go for more information.

Be an advocate
In Wilmington, Del., the Alfred I. duPont Institute says parent's expectations are “probably realistic and unrealistic” but in time, with professional help, the parent will have “mostly realistic goals.” By the time the child is 2 years old, a doctor can decide “whether the child has hemiplegia, diplegia, or quadriplegia. Based on this, predictions can be made. Children with CP don’t stop doing activities once they’ve begun to do them. Such a loss of skills, called regression, isn’t characteristic of CP.”

At the Mayo Clinic, it’s suggested that when a child is diagnosed with a disability, such as CP, parents should “encourage any try at independence, no matter how small. Be an advocate; don’t be afraid to speak out on your child's behalf or to ask tough questions of your physicians, therapists, and teachers. As a parent, you may feel grief and guilt over your child's disability.  Find a circle of support—it can make a big difference in helping you cope with CP and its effects.”

People with CP can achieve: Mike and Wendy Orzel, of Albany, N.Y., were born with CP. For the New York State Office of Mental Retardation & Developmental Disabilities, Mike is the Interstate Contact person, “helping to move people with developmental disabilities to and from the state while retaining necessary services. I’m also the person helping to ensure people with DD have a chance to register to vote, and I talk to providers and people with DD about various benefits they could receive while being employed.”

Wendy works with the Self Advocate Association, and was appointed by former Gov. George Pataki to the Developmental Disability Planning Council. “It provides funding to different organizations to apply for grants for new and innovative programs for people with DD so they can live as independently as possible,” Wendy adds, “and I do presentations for people in the community.”

‘Greatest challenge’
Going back to Bill Porter, he was told for many years he was unemployable, but with maternal support and an indomitable spirit, he supported himself as a door-to-door salesman. His CP made walking extremely difficult and painful. For more than 40 years, he walked eight to 10 miles a day, selling products for Watkins Co., and wove himself into the lives and hearts of the people along his route.

For others, the Journal of Rehabilitation argues the “greatest challenge that faces many persons labeled cerebral palsied isn’t physical, cognitive, or behavioral. The real challenge for most people with severe disabilities is attitudinal discrimination.”

As a review of the movie observed, “Sometimes the true heroes in our lives are those people who inspire us not with superhuman accomplishments but simply by their refusal to give up in the face of seemingly insurmountable odds, and the dignity in which they go about their lives. Bill Porter is one of those heroes.”

In his wheelchair in Jacksonville, FL, Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy. One of his best friends has CP.