Introduction
Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s disease, was named after a popular baseball player, who was diagnosed with it in the 1920s (Bromberg & Bromberg, 2017). The disease ended his career and eventually killed him a few years after the diagnosis. ALS is a rare progressive neurological disease that attacks and weakens the neurons controlling voluntary muscle movements. These are the muscles that a person chooses to move to produce movements such as chewing, talking, and walking. The symptoms of ALS get worse over time, and as there is no cure or an effective way to stop or reverse the progression, patients die after a few months and other years (Bromberg & Bromberg, 2017). The amount of support these patients require from caregivers increases as the disease progresses, and a time comes when they can do almost nothing by themselves. Therefore, ALS not only affects the patient but also causes irreparable physical, emotional, and financial damage to the caregivers, family and friends of the patient.
How ALS Affects the Body
ALS is classified under motor neuron diseases, which are all caused by the gradual degeneration and eventual death of motor neurons. Motor neurons (nerve cells) are divided into two types: upper motor neurons and lower motor neurons. Upper motor neurons are nerve cells located in the human brain and spinal cord (Bromberg & Bromberg, 2017). They are responsible for remitting signals to the lower motor neurons. On the other hand, the lower motor neurons are found in the human brain stem and spinal cord. After receiving signals from the upper motor neurons, they send instructions to the muscles to move. In most cases, ALS attacks all of these neurons, causing a weakness in the muscles, making it difficult to move around, talk, swallow, and then breath (Bromberg & Bromberg, 2017). Difficulty in breathing is usually the last stage for most people suffering from ALS, where the respiratory system fails due to insufficient oxygen supply to both the lungs and blood.
Symptoms of ALS
The early symptoms of ALS are mostly subtle making it easy for most people to ignore them. For example, one of the most common ones that people experience is awkwardness in walking or running, which causes them to stumble or trip more often. It is easy to ignore this as something minor until it becomes a problem. For most people, their hands develop difficulty in doing simple tasks such as writing or buttoning their shirts (Bromberg & Bromberg, 2017). The symptoms that first show on the patient’s arms and legs are referred to as limb onset. For those who first experience a problem with either swallowing or speaking, it is called bulbar onset.
As the disease progresses, this weakness of muscles spreads to the other parts of the body, with the rate of progression varying from one person to the other. However, for most people, the spread of ALS is very rapid and it quickly causes progressive paralysis. Further, people living with ALS tend to lose weight rapidly and become malnourished because their bodies burn calories at a faster rate compared to those without ALS. A good number of ALS patients suffer from depression and anxiety as they do not lose their ability to reason, understand and remember (Bromberg & Bromberg, 2017). This means that they remain fully aware of their progressive loss. Although their internal organs, sensory systems, and cognitive functions are not affected, their emotional components of empathy are damaged. Eventually, patients are unable to breathe on their own, and therefore, require the assistance of a ventilator. Chances of suffering from pneumonia increase during the final stages of the disease.
Effects of ALS on the Caregiver of the patient
The role of a caregiver is very crucial as they are involved in the immense provision of emotional, financial, and physical support. They are also involved in the process of decision-making on issues regarding the patient. This role is mostly represented by the patient’s partner. A caregiver’s role is quite demanding and can get overwhelming for them. They often undergo a heavy care burden and may develop somatic symptoms and psychological distress. According to D’Alvano et al., (2021), most caregivers experience long durations of caregiving and less social support, accounting for 42.6% of health deterioration cases among caregivers. Caregivers get little to no sleep at all on most days, especially in the late stages of the patient. Lack of sleep exposes caregivers to serious health risks such as high blood pressure, reduced immune system function, and heart failure. It also reduces their ability to think, remember details, pay attention, and complete simple tasks. This is not only dangerous for them but also for the patient and other family members in the house.
Further, the family members are constantly worried that they could inherit the same disease. 5 to 10% of ALS cases are familial and it only requires one of the parents to have the gene causing ALS (Bromberg & Bromberg, 2017). Studies have found that mutations in more than a dozen genes can cause familial ALS. In 2021, scientists discovered a unique form of genetic ALS that affects very young children with the youngest being 4 years old (D’Alvano et al., 2021). Additionally, managing ALS may be quite expensive, especially for those without any insurance coverage. Some families may end up drowning in debt even after the death of their loved one. These constant thoughts may cause a strain on the caregivers leading to chronic stress, depression, or anxiety.
Effects of ALS on the Children of the Patient
Once a person is diagnosed with ALS, the family has to make significant adjustments in their lifestyle, which hurts their social relationships and quality of life. While the primary caregiver of the patient is usually the partner, children have a major role to play. For example, they may be needed to assist in giving medication, and emotional support and do house chores. These children lack enough emotional and experiential competencies, causing very stressful reiterate experiences for them. This could seriously impact their sense of identity as they are faced with the strenuous responsibility of assisting others (Testoni et al., 2021). They have to face emotional experiences including anticipatory grief and ambiguous loss. The most difficult aspect of ambiguous loss is the emotions the children go through when they see their parent’s everyday struggle with communication difficulties and the paralysis of their facial expressions (Testoni et al., 2021). These emotions are damaging to the children’s self-esteem, and cause somatic disorders, a sense of guilt, social isolation, aggressive behavior, and anxiety.
Conclusion
In conclusion, ALS affects both the upper and lower motor neurons of the patient. It quickly progresses from one part to the rest of the body. It is characterized by progressive weakness and spasticity in the limbs, speech difficulty, and breathing problems. There is no cure for ALS but the care management of the disease has improved over the years. ALS does not only affect the patient, but it affects their families as well. For instance, their caregivers get very little rest and are isolated from the outside world as the patients require constant support. This may cause a deterioration of their health, causing diseases such as depression and heart attack. Also, their children get stressed by the situation the parents are in, and may be denied the opportunity to fully develop their identities.
References
Bromberg, D. B., & Bromberg, D. B. (2017). Navigating life with Amyotrophic lateral sclerosis. Oxford University Press.
D’Alvano, G., Buonanno, D., Passaniti, C., De Stefano, M., Lavorgna, L., Tedeschi, G., Siciliano, M., & Trojsi, F. (2021). Support needs and interventions for family caregivers of patients with amyotrophic lateral sclerosis (ALS): A narrative review with report of telemedicine experiences at the time of COVID-19 pandemic. Brain Sciences, 12(1).
Testoni, I., Palazzo, L., Ronconi, L., Rossi, G., Ferizoviku, J., & Morales, J. R. P. (2021). The experience of children with a parent suffering from Amyotrophic lateral sclerosis during the COVID-19 pandemic. Scientific Reports, 11(1).