Helpful Reading
The problem with awareness of ALS is evident in the amount of literature available to those who choose to learn more about the disease. I searched libraries in four counties and found only one book which gave a combination summary of the physical and social effects of ALS on the patient. Most books about ALS are personal memoirs and do not educate from a third person point of view. There are a few works, however, that I believe can help us understand more about the effects society has on ALS. They also educate us to rise above these societal stigmas to help those who suffer from ALS and need it most.
"Whose Deaths Matter? Mortality, Advocacy, and Attention to Diesease by Elizabeth Armstrong, Dan Carpenter, and Marie Hojnacki
This work explores the media attention different diseases receive, and what factors may contribute to the amount each one receives. The reasons the authors present for a disease receiving or not receiving air time on tv and the radio describe why ALS awareness is not commonly relayed through the media. First of all, diseases such as AIDs have received media attention because they are sex related and will attract the public's attention. Getting HIV through unprotected sex is more interesting to the American population than an uncurable disease slowly killing your body. Second, there is a correlation between number of deaths and media attention. Although being diagnosed with ALS is a death sentence, it is not one of the top ten killers such as heart disease or suicide. Those affected by ALS believe it is an epidemic, but the media will not give it the attention it deserves. Third, no great celebrity has been affect by ALS since Lou Gehrig's diagnosis in 1939. Other diseases have celebrity advocates, including NBA star Magic Johnson who suffers from AIDs. Unfortunatley, it will take a celebrity death or a rise in the number of ALS cases for media attention to increase.
AIDS and Stigma by Gregory Herek
Although this work is not directly related to ALS, I believe there is room to apply some of the main ideas of the AIDS stigma to the stigma that affects those who suffer from ALS. Some people place a stigma on ALS sufferers thtat they cannot contribute to society and cannot understand their surroundings, but these are both not true. One example is Steve Pesto, an engineer from Alabama who was diagnosed with ALS after receiving patents for his designs and advancing in his career. During his decline, he invented a lift for himself made of a bed sheet, a fan motor, and roller skate wheels. People with ALS have intact cognitive function, and they cannot control how the disease affects their body. ALS sufferers definitely do not bring the disease upon themselves, and society needs to learn to treat these people as they were treated before their diagnosis.
The Experience of Illness Series: Motor Neurone Disease edited by Ray Fitzpatrick and Stanton Newman
This book in the Experience of Illness Series provides insight to the medicinal and social sides of motor neurone diseases, and most specifically ALS. The first chapter of the book introduces the basic medical background for the disease. I found this information very easy to read because the editors did a good job of selecting laymen's terms for the reader to understand more clearly what the disease involves. I was slightly disappointed by the outdated information in the book. Since its production in 1994, the statistics have changed from what the book offers. Aside from this discrepency, the medical information was very precise and explained well.
The second chapter of the book, "MND in the context of life: onset and diagnosis," presents information about how the diagnosis process works. I enjoyed reading this section because stories from actual patients were included in the text. This chapter also identified one of the the major faults of modern medicine: this disease is very hard to diagnose. When patients complain to their doctors that they feel weak, the first response the doctor has is to change the patient's diet or to advise him/her to get into shape. Unfortunately, the patient rapidly declines, and the only way he/she can be diagnosed with ALS is by ruling out other illnesses through many tests. The chapter goes into depth about how doctors commonly misdiagnose other ailments instead of ALS, especially when dealing with an older age group.
Chapter three explores the management of the disease. Many ALS sufferers feel as though doctors can give death sentences, but they can also take them away, especially with this disease. ALS can be a very tricky diaseas, and different doctors can disagree about prognosis, treatment and expected life span. When one doctor gives the patient longer to live than the one before him, the family feels almost as if the doctor has given them these years. It is hard to manage a disease when it is a death sentence, as this chapter discusses.
"Everyday life in the early stages of MND" is, in my opinion, the best chapter to read for those recently diagnosed with the disease. It provides examples of yearly progression of the disease and how specific patients feel at certain points in their decline. The hardest part of dealing with this disease is the paradox presented in the book: patients are constantly trying to manage the present while inevitably focusing their attention on their impeding death in the future. Patients know what is coming to them, so it is hard for them to manage the present. This chapter also presents one of the hardest parts of dealing with the disease: how one is treated by friends and strangers after their diagnosis. Many people are disappointed by friends after the diagnosis of ALS because most of them just don't seem to have the time to visit. One woman describes her frustration with those who say they would call, but they have no words to express what they want to say. She just wants these people to treat her and her husband as they did before the diagnosis. Also, this is not a glamorous disease. The symptoms are viewed as strange and sometimes vulgar by the outside world. Patients struggle with the battle to maintain a normal status in society when suffering from symptoms such as uncontrollable laughter on a public bus.
Chapter five explores the search for causes, cures, and effective treatments for MND/ALS. This basically says in a lot of words that the cause and cure are not being found. There are many speculations about contributors such as stress and environment to the onset of ALS, but nothing is proven. It is especially hard for those diagnosed to suffer from a disease that they believe should be cured in such a scientific world. They are at a loss because scientists are finding cures for cancers and infectious diseases, but they are making little headway with ALS. This chapter also briefly discusses the role the internet plays in a patient's life. The writers come to the conclusion that this is a hub of ALS information, both legitimate and false, because it is one of the last methods of communication that a patient has.
Chapter six simply describes what later progression of the disease is like. A major section of the chapter discusses the choices to be made at the end of life, incluing ventilators and feeding tubes. The information is mostly general things that I already encountered through internet sources. The last chapter stressed the importance of making ALS known as a 'real disease' so that it is taken seriously. Hopefully, the realm of those with ALS and the realm of those trying to find a cure can work together to make a difference.
I enjoyed reading this book, but I would not recommend it simply because it was published fourteen years ago. I would recommend an updated version of the book that includes more recent controversies with the disease, such as olfactory stem cell procedure, Bu Nao Gao, and recent issues with Medicare/Medicaid. I mostly enjoyed the way the stories of patients and their families were woven into the text because it provided a personal touch to the reading that made me want to read more.