Personal injuries (56 page)

Finally, I owe my greatest debt to the community of persons afflicted with and concerned about ALS. The cruelty of this disease cannot be overstated, but the intense support that PALS, their families, their doctors, and other caregivers provide to one another is inspirational. An ALS patient, Doug Jacobson, maintains a remarkably informative Web site (which I reached through www.phoenix.net/ jacobson) where I began my research. Patients, physicians, nurses, family members, speech pathologists, and social workers were extraordinarily frank in responding to my inquiries, no matter how ill informed or prying my questions were. Three neurological experts answered repeated queries and directed me to resource material: Jerry Belsh, M.D., Director of the Neuromuscular and ALS Center at the Robert Wood Johnson Medical School of the University of Medicine and Dentistry in New Jersey; Professor Lanny J. Haverkamp, Ph.D., of the Department of Neurology at Baylor College of Medicine in Houston; and Lewis Rowland, M.D., of the Neurological Institute of Columbia-Presbyterian Medical Center in New York. Lisa Krivickas, M.D., daughter of an ALS patient and a member of the Department of Physical Medicine and Rehabilitation at Spaulding Rehabilitation Hospital, Boston, and Harvard Medical School; Simon Whitney, M.D., of Stanford University; and Matti Jokelainen, M.D., of Central Hospital Lahti, Finland, also provided generous responses to questions.

Two speech pathologists, Kristi Peak-Oliveira of Children's Hospital in Boston and Iris Fishman, Executive Director of CINI (Communication Independence for the Neurologically Impaired), helped me learn about voice augmentation devices. If I have incorrectly attributed later innovations to 1993, that is the result of a novelist's liberties and not any misinformation from them. Three professionals with experience in nursing those with ALS-Peary Brown, R.N., of Jonesboro, Maine; Meraida Polak, R.N., Neuromuscular Nurse Clinician at the Department of Neurology at Emory University; and Ovid Jones-shared poignant reflections.

Alisa Brownlee of the ALS Association's Greater Philadelphia Chapter and Claire Owen, Patient Service Coordinator of Les Turner ALS Foundation near Chicago, both helped guide me to sources of information about the disease.

Nothing, however, was more moving to me or of greater importance than the communications I received from those who live with ALS. Family members-Kathy Arnette of Fenton, Missouri; Linda Saran of Lake Zurich, Illinois; and Sherry Stampler of Weston, Florida-offered loving and unflinching accounts of the daily accommodations ALS requires. Those afflicted simply broke my heart with the courage, honesty, and eloquence of their responses. Of them all-Martin Blank, now deceased, of Mundelein, Illinois; Arturo Bolivar of San Juan, Puerto Rico; Jim Compton of Bethany, Oklahoma; Tom Ellestad of Santa Rosa, California; Ted Heine of Waverly, Iowa; David Jayne of Circle Rex, Georgia; Eugene Schlebecker of Indianapolis; Philip E. Simmons of Center Sandwich, New Hampshire; and Judy Wilson of Stamford, Connecticut -I will remain forever in awe. That is doubly so of my faithful correspondent Dale S. O'Reilly of Philadelphia, an articulate advocate and a spirited example of the vitality, wit, and imagination that survive this disease. I have had such openhearted support and encouragement from those affected by ALS that it would sadden me enormously if any part of this novel, especially its conclusion, were regarded as disrespectful of them. More than 90 percent of end-stage ALS patients choose not to accept ventilation, but I cannot imagine a decision more personal or one which, no matter how resolved, requires greater bravery. To the very end, ALS deserves its grim nickname as the Cruelest Disease. Again and again, I was told that ALS obeys no rules. Nonetheless, I am sure there are inaccuracies in my portrayal, just as there are likely to be in other parts of the book that depend on technical information. For all such errors I bear sole responsibility.

Document Outline

• THE BEGINNING
  
• CHAPTER 3
  
  • JANUARY 1993
    
• CHAPTER 6
  
• CHAPTER 7
  
• CHAPTER 8
  
• CHAPTER 9
  
  • FEBRUARY
    
• CHAPTER 11
  
• CHAPTER 12
  
• CHAPTER 13
  
• CHAPTER 14
  
  • MARCH
    
• CHAPTER 15
  
• CHAPTER 16
  
• CHAPTER 17
  
• CHAPTER 18
  
  • APRIL
    
• CHAPTER 19
  
• CHAPTER 20
  
• CHAPTER 21
  
• CHAPTER 22
  
• CHAPTER 23
  
• CHAPTER 24
  
  • MAY
    
• CHAPTER 25
  
• CHAPTER 26
  
• CHAPTER 27
  
• CHAPTER 28
  
• CHAPTER 29
  
• CHAPTER 30
  
• CHAPTER 31
  
• CHAPTER 32
  
  • JUNE
    
• CHAPTER 33
  
• CHAPTER 34
  
• CHAPTER 35
  
• CHAPTER 36
  
• CHAPTER 37
  
• CHAPTER 38
  
• CHAPTER 39
  
• CHAPTER 40