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WHAT IS ALS?

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Amyotrophic lateral sclerosis, commonly referred to as ALS, is a disease that affects nerve cells in the brain and the spinal column. Specifically, the disease attacks motor neurons, the nerve cells that control the movement of muscles throughout the body. ALS causes the neurons to slowly die over time, and as they do, the patient loses the ability to control or use his or her muscles.

 

ALS is sometimes called Lou Gehrig’s Disease in reference to the famous baseball player who developed the disease in the 1930s. Unfortunately, there is no cure for the disease, and it is eventually fatal. However, some treatments may extend the life expectancy of some patients.

SYMPTOMS

On average, it takes about 12 months from the initial onset of symptoms until the disease is actually diagnosed.  Early signs and symptoms of ALS include:

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-difficulty swallowing

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-changes in pitch or vocal tone

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-trouble grasping or lifting items

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-abnormal fatigue of the arms and/or legs

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-slurred speech

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-uncontrollable periods of laughing or crying (this is referred to in the script  of 33 Variations as emotional incontinence)

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-muscle cramps and twitches

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Fast FActs

-In a given year, about 30,000 Americans suffer from amyotrophic lateral sclerosis (ALS). Approximately 5,600 new cases of the disease are diagnosed each year. 

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-ALS most commonly develops in patients between the ages of 40 and 65, and the risk increases with age.

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-Men under the age of 65 are more likely than women to develop ALS. After the age of 70, both men and women are equally likely to develop the disease.

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-About 10% of people who develop ALS have a genetically inherited form of the disease, and children of these patients have a 50% chance of developing the disease themselves.

 

-More than half of those diagnosed with ALS will die within two to five years of the onset of symptoms. About 20% will survive for five years or more, and about 10% will survive for more than 10 years.

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assisted living devices & EQUIPMENT

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 At some point most ALS patients end up immobile and in need of a wheelchair full time. Motorized, high-backed wheelchairs (also called complex rehab or Level 3 power chairs) are custom fitted to support a patients body and postural needs. They have the ability to tilt/recline, have feature, power leg rests, and alternate driving modes and controls, and are able to adapt to evolving needs. Portable respiratory and communication devices can be mounted or attached.

 

The custom fitting and tilt/recline function of your power wheelchair  allows ALS patients to be in it up to 10–12 hours a day, thus allowing you them tp spend more time around people and less time in bed. 

At some point during the advancement of ALS  symptoms, the patient if often faced with progressive speech loss, which requires them to rely on speech generating devices for communication. In current research titled "Voice Conversion for Persons with Amyotrophic Lateral Sclerosis" by Yunxin Zhao, they explain the various methods of voice conversion and the importance of protecting these patients vocal identities.

When an ALS patient can no longer speak, speech-generating devices can speak for them. On a digital screen, they can select the letters, words, and messages using the method that works best. This may be using their hands to touch the screen, type on a keyboard, or move a joystick. It may be moving their head to operate a head mouse or optical head pointer. Or, they can use their eyes by looking at and selecting specific letters, words, and messages. The device will then speak the messages you create. SGDs are also computers that allow you to email, text, and browse the Internet.

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Coping STrategies

Although there is some evidence that a form of dementia is present in some cases of ALS, the cognitive function does not usually decline as muscle deterioration progresses. The fact that the sufferer’s mental functions remain intact as their physical abilities decline often leads to depression and/or anxiety.

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Coping is defined as the set of cognitive-behavioral efforts to manage external and internal demands that arise from stressful situations, and it is assessed as exceeding the personal resources. According to a recent research study conducted by Georgiana Soares Leandro that took a large sampling of patients from 1992 to 2019 to asses coping strategies, there are eight major coping strategies for ALS patients. The first is confrontative coping—aggressive attempts to change the stressful situation followed by seeking social support which is categorized as efforts to seek information, emotional support, or instrumental support. The third is planful problem solving described as a patient adopting an analytical approach to outline strategies to change or take control of the situation. Distancing is next,  which is when a patient makes efforts to distance from the situation and minimize its meaning. Two of the more self regulating strategies include self-controlling—efforts to control one’s attitudes and emotions and accepting responsibility—recognition of one’s contribution to the problem even if there is none applicable. The final two coping mechanisms identified are escape and avoidance which is define as  efforts to escape or avoid the problem or use of wishful thinking followed by positive reappraisal—efforts to create positive meanings to the situation by focusing on personal growth (it also includes spiritual dimensions).

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Why is this information so crucial to our production? In 33 Variations, Katherine, who is suffering from ALS, utilizes many of these strategies at one point or another within the play. Identifying these coping techniques and when they occur is imperative. To get a better understanding of how and when let's break it down by strategy and provide  contextual evidence.

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Planful Problem solving. Katherine spends the majority of the play avoiding or distancing from her illness but in Act two, she makes secret plans with Gertie to end her life at a specific deteriorative stage that has been previously discussed unbeknownst to Clara. This is a clear example of Katherine using plans to deal and cope with her terminal illness.

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Distancing. Katherine utilizes this in one simple word. Bonn. She plans a trip to continue her research in another country away from her doctors and attempting to distance her self from the situation and minimize its significance.

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Self controlling emotions. With the exception of a rare glimpse of emotion during "XRAY", Katherine refrains from emotional reactions towards her illness or deterioration. In her monologue in the beginning of Act Two she resorts to sarcasm and wit rather than explain the emotional toll the disease is having on her.

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 Escape and avoidance. This is one of Katherines most utilized coping mechanisms, she plans and continues ways to move forward in her research avoid any conversation or notion that she is ill. Katherine quickly changes the subject in scene "Research" with her daughter Clara when being confronted with Clara's concern for her health. She continues to avoid any conversation with Clara ignoring her phone calls, etc. as Clara is prone to bringing up the illness as seen in "Research" in the beginning of Act One.

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Positive reappraisal. This strategy manifests in the area of spirituality for Katherine. Out of all of the coping mechanisms, this one has the visible arc, shifting throughout the second Act. Katherine begins her speech  about transfiguration in Act Two, by claiming that she is not religious. By the end of the Act, laying upon a gurney during an MRI, she recites the Kyrie, a prayer said during Mass.

 

Information on the Kyrie translation can be found here: 

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