Personal Narrative: Amyotrophic Lateral Sclerosis

Steve Gleason’s battle with ALS hasn’t been easy, yet he shows us what courage really is. Steve remained strong and determined to beat ALS. What sets Steve Gleason apart from most others is that instead of becoming self focused on beating ALS, he became determined to beat it and help others win the fight. His choice to fight this disease is impressive enough but his work to bring worldwide awareness to ALS through his own organization, Team Gleason (slogan, “No white flags”) goes beyond

Imagine you are a 78-year-old man. A beloved professor from Brandeis University. Day by day, take notice of the increased difficulty of breathing, more so than the usual out-of-breath feeling from climbing a flight of stairs. About two or three weeks later, you start to feel muscles in your body cramping up, even while partaking in slight activity. After various testing, your results come back you have ALS, short for Amyotrophic lateral sclerosis.

Case Study: A thirty six year old male has developed severe muscle weakness throughout the body. The condition began fifteen months ago with a left foot drop and within a year, he described difficulty with speech and swallowing, muscle twitching and cramping, and muscular atrophy throughout the upper and lower limbs. Within the last two months, his breathing has become more difficult, and there has been a noticeable difference in his voice. Prior to the fifteen months, he presented little to no symptoms. The patient, a medical doctor, has a wife and two young children.

Amyotrophic Lateral Sclerosis (ALS) is a disease that attacks the nervous system causing paralysis to the patient’s body. The victim’s intellect, emotions, and memories lie unharmed by the disease causing emotional discomfort. Chronic Traumatic Encephalopathy (CTE) is a disease that attacks the mind, affects memories and emotions. It can lead to diseases such as Dementia, Alzheimer's, Parkinson's, and Huntington's. These are just a few CTEs that can affect athletes at competitive levels as well as combat veterans. Concussions are just as troublesome, causing physical and emotional harm to the victims whose symptoms may last a lifetime. Concussions may be the leading cause of ALS or other varying forms of CTE. Most of these diseases

Amyotrophic lateral sclerosis (ALS) presents as progressive weakening of all the voluntary muscles in the body due to the degradation of motor neurons. It is a severe motor neuron disease (MND) that is usually fatal within 5 years due to arrest of the respiratory muscles [Rowland, 2000]. It is only relatively recently that studies have defined specific gene mutations affecting protein function, giving some hope for finding an effective therapy for ALS. Currently there is no cure or treatment for the disease. Over the last five years discovery of mutations in two genes, transactive response (TAR) DNA-binding protein (TDP-43), so called because of its 43-kDa mass, and fused in sarcoma/transloacted in liposarcoma (FUS/TLS) have shifted research into trying to understand the roles of RNA metabolism in neurodegeneration. This micro-review will try to summarise what is known so far about TDP-43 and FUS/TLS and how they relate to pathogensis of ALS.

As a child, I thought my parents were invincible. I grew up believing they were superheroes who had the ability to whisk away all my problems. Unfortunately, when I was 15-years-old, my father was diagnosed with multiple sclerosis. The hardest part about his diagnosis was that his sister had been diagnosed with MS a couple years before and we had seen her health deteriorate so quickly that she was already wheelchair bound. During this time my family was scared. The little information we knew about MS did not seem hopefully and we were worried about what the future would hold for our family. Lucky, we were blessed with a great neurologist who eased the insecurity we felt and gave my father the strength to be optimistic about his diagnosis.

Mental health is a fragile thing and terminal conditions such as Amyotrophic Lateral Sclerosis (ALS) greatly impact it. ALS is a neurodegenerative disease that attacks a person’s physical function. It progressively saps a person’s strength and leads to the failure of organs. Unfortunately, this disease is not fully understood and is difficult to diagnose (Rosenfeld & Strong, 2015, pp. 318-319). Knowing fully well that this disease is a death sentence, ALS patients generally have a negative outlook and this significantly influences their mental health. Amyotrophic Lateral Sclerosis can be diagnosed mainly through the medical perspective and has been extensively researched to determine the components and controversies it contains.

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that causes devastating debilitation and raises many ethical questions. Many of these questions revolve around quality of life and end of life issues. ALS, specifically, complicates theses issues because of the natural progression of the disease. Patients gradually loose their ability to move, breath and communicate, while retaining, for the most part, their cognitive function. There is currently no cure for the disease and very little in the forms of treatment options, with the average life span after an ALS diagnosis only about three to five years with a small portion of the population living beyond 10 years. As a result, caring an ASL patient can put a lot of stress on their caregivers. Consequently, there is also the risk to the patients, who wishes can be ignored due to their inability to advocate for themselves.

The two components of the central nervous system (CNS) are the brain and the spinal cord. Communication between the brain and the spinal cord happens through motor neurons, which are nerve cells that enable motor movement. Each motor neuron is made up of a cell body, which holds all the cell components, dendrites which send information it receives to the cell body, and an axon which sends nerve impulses to the muscle (Porth & Matfin, 2009). As electrical impulses are sent through the motor neuron, it stimulates the muscle fibers in the body to move. This is the process in which motor function happens. Therefore, the basic abilities to breathe, speak, swallow, walk and button a shirt are

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurological disorder that destroy nerve cells causing death of motor neuron cells in the brain and spinal cord controlling voluntary muscle movements. It is considered a rare disease as only two out of 100,000 in a general population can develop it and there are approximately 20,000 to 30,000 cases in the United States (Miller et al 2004). It has also been shown that the disease affect men more than it does women with a ratio of three to two (Kiernan et al 2011).

I interviewed my aunt, Erica Wright-Smith about her experience having Multiple Sclerosis and how her life has changed because of the condition.

We sent him to the orthopedist that had done such wonders for me but were turned away. He could not help us. Weeks passed followed by months and as my father’s condition continued to do nothing but deteriorate, it seemed as though doctors were only struggling more to find out what was wrong. They weeded out possibilities one by one but with each prospect eliminated, ten more unanswered questions seemed to follow. That August I was practically forced to return to school by my parents for my Junior year. The distance suddenly felt like a lifetime away. My concern was constant and my ability to focus on anything else apparent. My school work, my professional life, and even my social interests suffered. It was only after I returned home for winter break later that year that I realized just how warranted my concerns were. In January 2010 my father was diagnosed with ALS.

It was a raw, blustery March day and I was leading four classmates to my house to hash out the remaining details of our current English presentation. When I opened the door, however, I received a surprise. I had not anticipated my mother still being home and neither had my group members. Their faces turned slightly blank, as if they were trying to hide their confusion and surprise. The previously relaxed atmosphere had become very formal and quiet. I had seen this before.

Evidence Based Medicine (EBM) is one of the most important skills for the heath profession in this era. In this paper two occupational therapy on Amyotrophic Lateral Sclerosis (ALS) are critically analyzed to test its validity for further evidence-based practice on the occupational therapy of ALS patients. The two articles used for the critical appraisal of EBM are one, Interaction of physical function, quality of life and depression in Amyotrophic lateral sclerosis: characterization of a large patient cohort by Körner, Kollewe, Abdulla, Zapf, Dengler and Petri (Körner et al). Two, Systematic review of the Effectiveness of Occupational Therapy-Related Interventions for People with Amyotrophic Lateral Sclerosis by Arbesman and

June 13, 1939 could be considered a historic day in amyotrophic lateral sclerosis (ALS) history. On June 13, 1939, society renamed ALS for one of ALS’s most famous victims of the time, Lou Gehrig. Before the dawn of the internet, Gehrig’s diagnosis and story was made public due to his fame. Today, aided by internet, people have the ability to tell their story regardless of social status. On March 28, 2012, April Moundzouris (n/d) was diagnosed with ALS. In an effort to raise awareness, Moundzouris wants to share her blog, the ALS Express. In a humanitarian effort, Moundzouris hopes to spread awareness about ALS and its encompassing effects. Moreover, she would like the blog to act as a resource for the newly diagnosed and their caregivers.