Cerebral Palsy: The Struggles Of The Patients And The Caregivers Within Our Nation
Cerebral palsy (CP) is one of the top twelve neurological diseases that change the livelihood of millions within our nation. CP is caused by abnormal brain development or damage to the developing brain, affecting a child’s ability to control his or her muscles. According to MyChild™ (at Cerebral Palsy Organization) website, nearly seven hundred forty-six thousand children and adults have been diagnosed; five hundred thousand of those are under eighteen years old. There are eight thousand to ten thousand babies and infants, along with five hundred preschoolers, being diagnosed with CP annually, and it is estimated that almost ten thousand newborns will develop it each year. This disease not only presents physical challenges for the patients, but it also limits the caregivers due to the extensive care that the severe cases may require. Furthermore, CP’s medicines, therapies, and medical treatment have an estimated cost of up to one million dollars per patient without accounting for their regular human necessities. Moreover, the psychological toll that the family members must endure is not just heartbreaking but a lifelong selfless act that requires a strong emotional support system. Besides, the lack of medical and scientific knowledge limits our doctors from diagnosing this disease almost irreversibly late. As a member of our community, I want to bring awareness to us, the people of this great nation, of the physical, financial, psychological, and medical struggles of the patients and their caregivers.
CP patients’ physical challenges will depend on the type they are diagnosed with and their severity. Dr. John Little first studied cerebral palsy in 1853. According to the Cerebral Palsy Guide website, CP has two main categorizations: hypotonia and hypertonia. While hypotonia means low muscle tone (floppiness), hypertonia means high muscle tone, both of which cause a loss of strength and firmness. The most common type of CP is Spastic; it occurs in about 70 – 80% of patients. The Cerebral Palsy Research Foundation states that these types of patients experience exaggerated jerky movements (hypertonia), muscle tightness, and joint stiffness. Patients with CP spastic have difficulty with tasks such as walking or picking up small objects. Athetoid (also known as “dyskinetic cerebral palsy”) is another common type of CP characterized by abnormal, involuntary movement such as spasms. Patients with Athetoid CP experience dystonia (twisting and repetitive movements), athetosis (slow, ‘stormy’ movements), and chorea (dance-like irregular, unpredictable movements). The third most common type of CP is ataxic, characterized by balance and coordination problems. Patients with Ataxic CP struggle with precise movements, such as writing and grasping small objects. Ataxic CP can affect the hands, arms, legs, feet, eyes, and even speech. CP can be quadriplegic, affecting both arms and legs; hemiplegic, having only one side of the body affected; or diplegic, affecting both legs. Regardless of the type or the combination of Cerebral Palsy, all patients struggle with movement coordination and balance.
CP patients and their caregivers are at a high risk of social and psychological problems. Although not all the CP patients are tested due to their condition’s severity, 75% of those given the psychiatric disorder test are diagnosed with ADHD. Annals of Internal Medicine organization published a cross-sectional analysis of adults that correlates mental health disorders to CP. According to the Medical Health’s Lab research team found that adults with CP have a higher prevalence of schizophrenia (2.8% vs. 0.7%), affective mood disorders (19.5% vs. 8.1%), anxiety disorders (19.5% vs. 11.1%), and personality and behavior disorders (1.2% vs. 0.3%), compared to adults without CP. Caring for a child with this disease can sometimes put caregivers at risk of experiencing their own physical and mental health challenges. According to an article published by the CDC (Centers for Disease Control and Prevention), caregivers spend innumerable hours a year taking their kids to countless appointments with multiple doctors and therapists, dealing with insurance companies, searching for the needed equipment and services, performing therapy at home; addressing behavioral issues; schoolwork; and arranging an additional time for them to do things other kids do faster and easier. In February 2017, NCBI (National Center of Biotechnical Information) published a study conducted in Europe where it was found that about a third of parents living with an adolescent with CP showed clinically significant high stress requiring professional assistance.
Caregivers often struggle with meeting the financial cost of CP patients’ treatments, therefore causing a significant impact on our nation’s economy. In 2004, CDC and RTI International published an MMWR (Morbidity and Mortality Weekly Report), where the study examined the direct and indirect medical expenses associated with CP, and it was found that it would cost our government a grand total of 11.5 billion. From $11.5 billion, 80.6% ($9.241 billion) are indirect costs accounting for productivity loss due to inability to work, limitation in the amount or type of work, and premature mortality. 10.2% ($1.175 billion) will cover direct medical costs, which include physician visits, prescription medications, in-patient hospital stays, assistive devices, therapies, rehabilitation, and long-term care; lastly, 9.2%, or $1.054 billion will go to direct non-medical costs which include special education, home, and automobile modifications expenses. The same study also published that it would cost caregivers an additional nine hundred twenty-one thousand between the indirect, direct medical, and direct non-medical. However, this number does not include out-of-pocket expenditures, emergency room visits, lost wages of family members caring for those with the disability, and psychosocial effects.
Cerebral palsy is not an entirely medical condition known, and scientists are still studying it. Most of the time, it takes up to a 2-year-old mark for a diagnosis. In cases where a child’s symptoms are mild, it will take up to 4 to 5 years to be diagnosed. An early diagnosis is important because it can alleviate the financial burden that comes along; at the same time, it can help to prove malpractice more easily. In some cases, the cause of CP is still unknown. According to an article published by NINDS (National Institute of Neurological Disorders and Strokes), there are controlled clinical trials involving some of the therapies that have been inconclusive or showed no benefit. The therapies have not been accepted in mainstream clinical practice. Treatments such as Stem cell therapy research are still in the early stages, and large-scale clinical trials are needed to learn if stem cell therapy is safe and effective in humans.
Cerebral palsy is a broad term used to describe various conditions of a neurological disease that causes patients and their caregivers to struggle with physical, psychological, financial, and lack of medical knowledge and technology. The different types, like spastic CP, which describes tight muscles, dyskinetic CP, which denotes spasms, and ataxic CP, which describes shakiness, are a big physical challenge for the patients. Studies have reported that caregivers are often overwhelmed and inconvenient/tiresome, followed by family adjustments and work adjustments to the point that they require outside emotional support. CP patients’ needs are not just a financial burden on caregivers but also take a toll on our government’s financial budget. This neurological disease is still without a quick and efficient method to diagnose and a cure or surgical procedure that can permanently restore the patient’s health. As a member of our community, I want to bring awareness to the people of this great nation that cerebral palsy is not a struggling matter for the patients and their caregivers but for us all and a challenge to our scientific community.
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