ALS: Life with Lost Communication Katie Nichols
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Intro: Culture can be defined in many different ways and arenas. To some individuals culture may only be something of ethnicity or the color of your skin, but this is far from the truth. Any unique group that you identify yourself with can be considered a cultural group. According to Mary Jane Collier’s Cultural Identity theory culture is “not the people but the communication that links them together” (1998, p. 37). For a distinct group of people to be considered a cultural group they must define themselves in a way that is different from other groups. Collier’s theory has different types of culture that can be put into different more general sets; ethnicity, gender, profession, geographical area, and physical ability or disability are considered general groups of this theory. The cultural group that I would like to focus on is those who have been affected by ALS or more commonly known as Lou Gehrig’s disease. When it comes to ALS, disability is the obvious cultural group that people with this disease would consider themselves apart of. This disease is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. (“What is ALS”, 2010) ALS is a terminal disease and there is still no cure or clear understanding to why this disease occurs. This disease decreases muscle function, impairs the use of the arms and legs, debilitates the use of the lungs, and diminishes the ability to speak. The onset of this disease is between ages 40 to 70 and 93% of patients are Caucasian. Not only do you lose to ability to speak but also the ability to move which can effect nonverbal communication immensely. To lose the ability to walk and to even talk later in life is devastating to the majority of patients. In 2004, my mother was diagnosed with ALS. Watching her loose her independence and ability to walk and was a very difficult to experience. While she never
lost her ability to speak, her communication was definitely affected in the later years of her life. In 2007, she lost her fight to ALS. Having lost her to such a horrible disease I became very involved in the ALS community. I have watched the effects it has on patients and their families as well as experienced it firsthand. It can be heartbreaking to see the frustration that is caused from the hindered communication between patients and their caregivers. I think it would be very interesting to take a deeper look into these processes and to explore what technological advances they are now coming up with that can assist with communication. Definition of Concepts: I think the best research lens for the purposes of exploring ALS and communication would be an interpretive approach. When using an interpretive approach you have a research question rather than a prediction. Asking “how?” and coming to understanding of how the process of communication happens for the group being studied is an approach that I think fits for my purposes of researching ALS. According to Marin & Nakayama (2010), “The goal of interpretive research is to understand and describe human behavior… using qualitative methods such as field studies, observations, and participant observations” (p. 59). The objective in interpretive is to explain themes within the communication arena that you are looking at. There are also three assumptions that are contributed to the interpretive approach, these include; “human experience is subjective, human behavior is creative rather than determined or easily predicted, and culture is created and maintained through communication” (Marin & Nakayama, 2010, p. 59). Every ALS patient has a different experience with the disease; the interpretive approach displays these aspects of the disease through its assumptions. Through the interpretive perspective communication and culture are interrelated. By informing one
another they are basically working together. Through communication you create your own culture. Research: In the ALS community a great amount of research has been done on the disease and the affects it has on communication. “ALS can be classified into three groups (spinal, bulbar, mixed) based on the presenting symptoms. Spinal ALS is diagnosed when the initial presenting symptoms affect the extremities. Bulbar ALS is diagnosed when the initial presenting symptoms involve speaking and swallowing. Mixed ALS is a combination of the two” (Ritcher, Ball. Beukelman, Lasker, & Ullman, 2003, P. 172). With the loss of the ability to move and speak, especially with Bulbar ALS, communication becomes extremely difficult. They have developed augmentative and alternative communication technology, which is often called AAC. AAC “includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas… we all use AAC when we make facial expressions or gestures, use symbols or pictures, or write” (“What is AAC”, n.d.). These can be anywhere from devices that your type and a computer voice speaks to just typing on a computer and having the other read it. According to Ball, Beukelman, and Pattee, “complex speech impairment are common [effects] of ALS, with 80% of persons with ALS experiencing such significant impairment that that require AAC strategies to support their daily communication needs” (2004, p.113). Because the use of AAC is so prominent in the ALS community, extensive research has been done on AAC, communication, and ALS patients and their caregivers. Having to use an outside resource to
communicate can be difficult and frustrating for ALS patients and the people they communicate with. Research has been done in many different areas concerning AAC including on the acceptance of ACC technology by persons with ALS, the different types of communication used with AAC technologies, the attitudes toward communication modes and message formulation techniques used for storytelling with people ALS, and many more.
Through the articles and research I have gone through I have become interested in my
own research question that I would like to look further into. I would like to know how does the impairment of speech/communication and movement affect the relationships between ALS patients and their caregivers (family/friends)? Although I did experience ALS in my personal life, my Mother’s conditions was not at the bulbar level. Through interaction with different patients of ALS and at different stages I have been able to take a look into this communication process and see the affects it has on the family, whether that is with children, siblings, spouse, or friends.
Through observations and interviews I have had a great deal of insight in the ALS
community and the use of communication. I attend a fundraiser meeting one to two times every month. Many times ALS patients are there and observing their communication can be difficult at times. When bulbar ALS patients are getting used to their AAC equipment, it can be frustrating and hard to adapt to. Commonly, ALS patients talk much slower than a person without speech impairment would. It can weaken communication on both ends. When an ALS patient is talking slow the listener may have a hard time keeping focused because of the speed of the speech. It may also become discouraging for a person with ALS because they can tell the communicating is not going as well as planned. A person with ALS can choose the way they
communicate AAC technology can be very helpful, but not all patients will choose to use it. Though theoretical application, an ALS patients decision on how to communicate can be explained. Theoretical Application:
Mark Orbe’s co‐cultural communication theory is one that I think applies to the
interaction between ALS patients and their caregivers. This theory describes “how language works between dominant and non‐dominant groups or co‐cultural groups” (Martin & Nakayama, 2010, pg. 234). Within this theory there are different strategies that the co‐cultural group uses to communicate and interact with the dominant group, these include; separation, accommodation, and assimilation. Within each of these strategies are different subgroups called nonassertive, assertive, and aggressive. An ALS patient would definitely be considered a non‐dominant group. When interacting and communicating with others, ALS patients using AAC technology are specifically using an assertive assimilation method. According to Martin & Nakayama, “co‐cultural individual taking this strategy may downplay co‐cultural differences and try to fit into the existing structures (2010, pg. 234‐235). By using AAC technology they are trying to still be able to “fit in” and communicate as the dominant group does. AAC technology that mimics voices and sentences is their way of using their differences and trying to be part of the norm or dominant group.
In a study done on the acceptance of AAC technology by persons of ALS, the majority of
the patients were willing to use the AAC technology, “only 4% of the participants in the study completely rejected AAC technology” (Ball, Beukelman, and Plattee, 2004, P. 117). The group that rejected the AAC technology would be using a different strategy within the co‐cultural
theory. These particular ALS patients are using a nonassertive separation strategy when communicating/ or lack of communicating with a dominant group. This strategy is, “often used by those who assume that some segregation is part of everyday life in the United States. For those in dominant groups, it is easier to live, work, learn, socialize, and pray with those who are like them. For co‐cultural members, it may take more effort to live as much as possible among those like them” (Martin & Nakayama, 2010, pg. 236‐237). An ALS patient that rejects an opportunity to be able to communicate with the dominant group is most likely thinking it is easier to just not try. By not using AAC technology, they are accepting that separation will happen with a dominant group and communication will not be possible in most cases. This can be testing to friends and family who wish to still communicate. I think this is a person’s way to accept their fate with a terminal disease. Certain factors of the disease can influence an ALS patients decision to move forward with AAC technology such as, “the rate f disease progression, time from initial symptoms to diagnosis, expectations and attitudes of communication partners, experience and attitude toward technology, and access to early intervention” (Ball, Beukelman, and Plattee, 2004, P. 114). If a patient is older, not comfortable with technology, or has fast progressing symptoms they are much less likely to use AAC technology. There may alsot not be enough time to become familiar with the technology before the end stages of the disease and eventually death. Assertive assimilation and nonassertive separation strategies are the individual’s decision when it comes to communication. While caregivers and communication partners would probably prefer the use of an assertive assimilation strategy it just may not be possible for particular ALS patients.
Methods:
ALS does not affect a very large community. It is estimated that only 30,000 Americans
will have ALS at any given time, 60% of them being male. As age progresses the incidence of diagnosis is more equally distributed between man and women. The average age of an ALS patient at the time of the diagnosis is 55, but patients can develop the disease anywhere from age 40 to 70. In the ALS database, is has also been reported that 93% of patients are Caucasian. This leaves the population of those with ALS to a much smaller group then other cultural groups. (“What is ALS”, 2010) This made observing this cultural group easier because they were mainly around that same age group and at the similar points in their lives.
My main method of research was interacting with ALS patients and their friends/families at ALS events and during my volunteer work. As I mentioned before, I am on a committee for an ALS fundraiser. Many times ALS patients will come to the meetings to interact and help the group. This is a perfect opportunity to interrelate with ALS patients and observe there modes of communication. Because I have been interacting with the ALS community in the past, I also have quite a bit of background knowledge. These made interacting with this cultural group more of a straightforward process. While at the meeting, observing was the best way to see the way that ALS patients are interacting with groups. By sitting back and observing the way people interact you can learn a lot. When a person doesn’t know you are watching them they are more likely to act themselves and more naturally. Also, it can be difficult for an ALS patient to communicate in large groups but it is important to watch every aspect of their communication to fully understand how it affects them.
I was able to have one‐on‐one interaction with ALS patients through and organization called Extra Hands. This program allows volunteers to go into the homes ALS patients and either help out with simple tasks around the house or just spend time with them. I volunteer once or twice a month for an ALS patient in her 60’s. She lives with her daughter and her husband and their 11 year old girl. In this home I am able interact with the family in a quiet and comfortable setting. I decided for the purposes of this paper to not interview them with specific questions but observed their interaction with their family as well as me. This particular patient had the onset of bulbar ALS and had begun using AAC technology.
Results: Through my observations and interacting with ALS patients and their caregivers I discovered that the disease definitely has an effect on their relationships but not necessarily in a negative way. Obviously friends and family will be understandingabout the disease and will do anything in their power to keep the relationship and communication going. AAC technology can be difficult to use and delays the communication process at times but it is one of only ways to still communicate. From observing people with ALS, I also noticed that one‐on‐one communication is much easier then group communication. When using a device that you need to type out the words it can take time to fully articulate what you want to say. When many people are talking at once and conversing back and forth the delay of communication makes it difficult to keep up with the conversation. Colin Portmuff, and man that has been affected by ALS agrees, he states “group conversations are a great challenge because conversation is fast and unstructured, and it’s very difficult to participate when my pace is so much slower than the
group (2006, p. 32). He also expresses the difficulty when people are reading what he is typing on his AAC device, he explains
“I feel uncomfortable when someone sits next to me or behind me and reads my words on the screen… if they read as I type, it takes away my ability to get ahead, slows down the conversation, and at worst catches me saying something I don’t want to say” (2006, p.32).
I usually only observed this at the ALS fundraiser meetings that I attended. When a patient came in that was using an AAC device there was always a level of uncertainty about the communication process. People still interacted with the ALS patients with AAC devices but because it was more difficult to do some people avoided communicating and hindered the relationships.
During my one‐on‐one interaction with an ALS patient I visited, the shift in relationships
was not quite as noticeable. Because it's easier for ALS patients to communicate in a quieter setting, they are more likely to communicate and more often. Family members are also more comfortable around each other allowing for an ALS patient to be relaxed when communication. According to Fried‐Oken et al., “face‐to‐face communication was reported most critical in the care giving setting” (2006, p. 217). Ultimately I think that with immediate family, the loss of communication due to ALS does not affect the relationship as considerably as other relationships.
Conclusion:
Through observing ALS patients and applying the co‐cultural theory I have come to a
better understanding of their communication methods. Although ALS is not a very common disease, it is still important to recognize that communication with anyone with a disability or someone that uses an AAC device can be challenging. By realizing that it is possible for relationships to change negatively because of a disease and the effect is has communication it will be easier to prevent this from happening. ALS can be a very devastating disease and to lose or hinder relationships over it can make a tough situation even worse. When it comes to a terminal disease the best thing you can do is make the last years of that person’s life the most enjoyable and communication and relationships can make a world of a difference.
References Ball, Laura, Beuklman, David, & Pattee, Gary. (2004). Acceptance of augmentative and Augmentative and Alternative Communication, 20(2), 113‐122.c Collier, M.J. (1998) Cultural Identity and Intercultural Communication. In L. Samovar & R. Porter (Eds.) Intercultural Communication (8th ed.). Boston: Wadsworth. Fried‐Oken, Melanie, Fox, Lynn, Rau, Marie, Tullman, Jill, & Baker, Gary. (2006). Purposes of aac device use for persons with als as reported by caregivers. Augmentative and Alternative Communication, 22(3), 209‐221. Martin, J. N. & Nakayama, T. K. (2010).Intercultural Communication in Contexts (5thed.). New York: McGraw‐Hill Pormuff, Colin. (2006, November 7). A personal journey through als. A Partnership for Communication, 31‐33. Richter, Melanie, Ball, Laura, Beukelman, David, Lasker, Joanna, & Ullman, Cara. (2003).Attitudes toward communication modes and message formulation techniques used for storytelling by people with ALS. Augmentative and Alternative Communication, 19(3), 170‐186. What is ALS?. (2010). Retrieved from http://www.alsa.org/about‐als/what‐is‐als.html What is AAC?. (n.d.). Retrieved from http://www.asha.org/public/speech/disorders/AAC.htm