Annotated Bibliography

Amyotrophic Lateral Sclerosis

Jessica Curry
10/28/13 Dr. Marie Thompson COM 4250

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrigs disease, is a fatal disease that affects the motor neurons in the body. According to the ALS association, an average of 15 people are newly diagnosed with ALS every day. This is more than 5,600 people per year. The average life expectancy of a person with ALS is two to five years from time of diagnosis. ALS can cause inability to use limbs, speech difficulty, shortness of breath, and trouble eating. There is no cure to this disease but are therapies that can be used to help with some of the symptoms. For this project, I am curious to research what the communication is between the doctor and the patient who is suffering from this disease. I also intend to learn more about the end of life care involved and the communication between the patient and the family. The themes provided explain what the disease is, how it affects the patient and family, and the end of life care. I want to explore these themes because I had an uncle who died from this disease. There is a lot we do not understand about ALS. I am curious to find out

more information on how this disease affects the body, not only physically, but also mentally and emotionally as well. I have organized my themes by the order in which they occur and because I would like to learn more about each theme and get a better understanding of what my uncle had to go through.

What is Amyotrophic Lateral Sclerosis (ALS)? The following websites explains what the disease is and the affects it has on the body and parts of the body that are affected.

Amyotrophic Lateral Sclerosis Association, Fighting Lou Gehrigs disease. (2010). What is ALS?. Retrieved from http://www.alsa.org/about-als/

This website explains what the disease is and how it affects the body. It lists some of the symptoms and what parts of the body the disease affects. The site also goes back to the history of the word itself. It explains that Amyotrophic comes from the Greek language and A means no or negative. Myo means muscle, and Trophic means nourishment, therefore getting no muscle nourishment. The word lateral identifies the areas in a persons spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it causes hardening or scarring in the region, which is where the word sclerosis comes from. This website has pictures and visuals to better understand the information and see how it destroys the body.

National Institute of Neurological Disorders and Stroke, Reducing the burden of neurological disease. (2013). NINDS Amyotrophic Lateral Sclerosis (ALS) information page. Retrieved from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/ALS.htm

This website explains what the disease is and how it breaks down the body. It also explains what it does not do to the body such as affecting the patients hearing, smell, ability to see, taste, and recognizing touch. The disease does not usually impair a persons mind or personality, but the symptoms and affects from the disease can impair them physically. This site also answers many other commonly asked questions and answers them in a detailed and easy to understand way. This site also has links to see who is affected by the disease in the U.S. and worldwide and gives some history of the disease.

How the disease affects the patient and the family The following authors explain the emotions and toll the disease takes on the family mentally and emotionally.

Brown, R. H., Swash, M., & Pasinelli, P. (2006). Amyotrophic Lateral Sclerosis (2nd ed). Abingdon, Oxon: Informa Healthcare.

This book explains that the diagnosis of ALS is a shock to the patient and the family. They may not know much about the disease, if anything at all. This can lead to fear and many questions and concerns. Providing more support systems and information available

would help the families and the patients feel a little more relaxed and understand the disease in a better way. This can help lower stress levels as well as anxiety. Patients are faced with horrible symptoms and the family has to watch without being able to do much to help them. The patients suffer and the family hurts from seeing the patient in so much pain and the changes in their physical state.

Family Caregiver Alliance, National Center on Caregiving. Living with ALS. Received from http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=566

This website explains what it is like to live with the disease and how it impairs mobility, communication, and breathing. It provides information on how to deal with these issues and keep the patient comfortable and content. The site also mentions nutrition and reaching out. This gives people an idea of how they can help their loved one who is suffering and how it may affect their life as well. This disease not only affects the patient, but the whole family also.

End of life care The following authors explain what the end of life care is like for both the patient and the family and describe the situations they may have to deal with.

Talbot, K., Turner, R. T., Marsden, R., &Botell, R. (2010). Motor Neuron Disease: A practical manual. New York: Oxford University Press.

The authors wrote this book as a guide or a manual for patients suffering from ALS as well as the families taking care of the patient. The text has a lot of insight on the background of the disease, what to expect with the disease, the genetics, therapies, symptoms, nutrition, disability management, end of life care, and much more. This book is important to my research as I am trying to find what the end of life care is like for both the patient and family. Specifically what the communication is like; what the patient says or how they feel, how the family feels and what they are doing to take care of the patient. The book explains what the disease physically does to the body when end of life is near and how the patient specifically dies. The patient ends up suffocating due to their inability to breathe and swallow from the nerves breaking down.

Mitsumoto, H., & Norris, F.H. (1994). Amyotrophic Lateral Sclerosis: A comprehensive guide to management. New York: Demos Publications, Inc.

The two authors wrote this book to help patients and families manage with the ALS disease. The text shares information on many of the topics the previous book has to offer as well as hospice care, life support systems, different aspects of dealing with the disease, long term care, financial resources, and much more. This book is very useful to my research because I am interested in learning more about hospice care, the multiple aspects of dealing with the disease, and long- term care. This text can help explain what hospice does for these specific patients and how helpful they are to the family. Also learning about the different aspects of how the family and patient deals with the disease and the fact they are dying.