The following excerpt has been taken from the Christopher & Dana Reeve Foundation Paralysis Resource Center website. http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4452343/k.2B93/Amyotroph ic_Lateral_Sclerosis.htm
Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, is a progressive neurological disease affecting 30,000 Americans with about 5,000 new cases occurring in the United States each year.
ALS belongs to a class of disorders known as motor neuron diseases. Motor neurons are nerve cells located in the brain, brainstem, and spinal cord that serve as controlling units and vital communication links between the nervous system and the voluntary muscles of the body. The loss of these cells causes the muscles under their control to weaken and waste away, leading to paralysis. It is usually fatal within five years of diagnosis.
ALS manifests itself in different ways, depending on which muscles weaken first. Symptoms may include tripping and falling, loss of control in hands and arms, difficulty speaking, swallowing and/or breathing, persistent fatigue, and twitching and cramping. ALS strikes in mid-life. Men are about one-and-a-half times more likely to have the disease as women.
Because ALS affects only motor neurons, the disease does not impair a person's mind, personality, intelligence, or memory. It does not affect a person's ability to see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions.
There is no cure for ALS, nor is there a proven therapy that will prevent or reverse its course. The Food and Drug Administration (FDA) recently approved riluzole, the first drug that has been shown to prolong the survival of ALS patients. Riluzole is believed to reduce damage to motor neurons by decreasing the release of glutamate. Clinical trials showed that Riluzole prolongs survival by several months, mainly in those with difficulty swallowing. The drug also extends the time before a person needs ventilation support. Riluzole does not reverse the damage already done to motor neurons, and patients taking the drug must be monitored for liver damage and other possible side effects.
1 Physical therapy and special equipment can enhance independence and safety throughout the course of ALS. Low-impact aerobic exercise such as walking, swimming, and stationary bicycling can strengthen unaffected muscles, improve cardiovascular health, and help patients fight fatigue and depression. Range of motion and stretching exercises can help prevent painful spasticity and muscle contractures. Occupational therapists can suggest devices such as ramps, braces, walkers, and wheelchairs that help patients conserve energy and remain mobile.
When the muscles that assist in breathing weaken, use of ventilatory assistance (intermittent positive pressure ventilation [IPPV] or bilevel positive airway pressure [BIPAP]) may be used to aid breathing during sleep. When muscles are no longer able to maintain oxygen and carbon dioxide levels, these devices may be used full-time.
Social workers and home care and hospice nurses help patients, families, and caregivers with the medical, emotional, and financial challenges of coping with ALS, particularly during the final stages of the disease. Social workers provide support such as assistance in obtaining financial aid, arranging durable power of attorney, preparing a living will, and finding support groups for patients and caregivers.
Sources:
National Institute on Neurological Disorders and Stroke, National ALS Association
Web Sites http://www.alsa.org ALS Association (ALSA) 1275 K Street NW, Suite 250 Washington, DC 20005 Phone: 202-407-8580 Care services (providing information and referrals): 800-782-4747 (Toll-free) E-mail: [email protected] ALSA is a national not-for-profit voluntary health organization dedicated solely to the fight against amyotrophic lateral sclerosis. This site is rich with news, research support, resources and connections. They publish a 6-volume set of books free to those with ALS called Living with ALS (What’s It All About, Coping with ALS, Managing Your Symptoms, Functioning When Your Mobility is Affected, Adjusting to Swallowing and Speaking Difficulties, Adapting to Breathing Changes) . http://www.outcomes-umassmed.org/als The ALS C.A.R.E. Program ALS C.A.R.E. is a voluntary, physician-directed program to improve outcomes for patients diagnosed with amyotrophic lateral sclerosis sponsored by Sanofi-Aventis Pharmaceuticals .
2 http://www.alshopefoundation.org/ ALS Hope Foundation 1333 Race Street, Suite 202 P.O. Box 40777 Philadelphia, PA 19107 Phone: 215-568-2426 E-mail: [email protected] The mission of the ALS Hope Foundation is to provide long-term support to 1) basic and clinical research programs leading to a cure, 2) clinical centers of excellence for the care and treatment of patients with ALS, 3) support programs for patients and care-givers that optimize care and promote independence of the patient, and 4) programs that promote patient and physician education about the diagnosis, treatment and caring for the patient with ALS. The Foundation funds clinical research and education at the MDA/ALS Center of Hope and the Neuromuscular Research Laboratory at Drexel University College of Medicine. http://www.als.ca ALS Society of Canada 3000 Steeles Avenue East, Suite 200 Markham, Ontario L3R 4T9 Phone: 905-248-2052, 800-267-4257 (Toll-free) The ALS Society is committed to: supporting research towards a cure for ALS, supporting provincial ALS societies in their provision of quality care for persons living with ALS, and building public awareness of ALS and its impact.
http://www.als.ca/en/node/140/manual-people-living-als ALS Society of Canada: A Manual for People Living with ALS The sixth edition of the Manual for People Living with ALS Manual is educational resource and tool that helps readers to organize personal health information and stimulate discussion between patients, family members, and their health-care providers about managing ALS care and coping with an often rapidly progressive neurological condition. The manual covers: ALS, signs, symptoms, and research; tips and tools for patients and family caregivers; where to go for help and support; disease management information about who makes up the ALS health-care team, mobility and independence, swallowing and nutrition, speech and communication, breathing and lung function, oral care, end-of-life issues, and advance-care planning; assistive equipment and activities of daily living; legal and financial considerations; and education and support resources. The manual can be searched and read online. Physical copies are free when ordered by people living with ALS, their caregivers, or their healthcare providers. http://www.als.net/ ALS Therapy Development Institute (ALS TDI) 300 Technology Square, Suite 400 Cambridge, MA 02139 Phone: 617-441-7200
3 E-mail: [email protected] ALS TDI is a nonprofit biotechnology organization dedicated to developing effective treatments for ALS.
http://golf.als.net/ ALS TDI Golf (formerly Driving for Life) 300 Technology Square, Suite 400 Cambridge, MA 02139 Phone: 617-441-7205 E-mail: [email protected] ALS TDI Golf is a fundraising campaign of the ALS Therapy Development Institute that consists of dozens of events each year. Professional golfers Tom Watson and Jeff Julian launched Driving for Life in honor of Watson’s caddy, Bruce Edwards, who has ALS. Supports research for a cure for ALS. http://www.alsworldwide.org ALS Worldwide Stephen and Barbara Byer, Co-Executive Directors 125 North Hamilton Street Madison, WI 53703 Phone: 608-663-0920 ALS Worldwide is a non-profit organization for ALS patients and their families to obtain information, advice, direction, support, guidance and hope. Support for both patients and family members is available through individual telephone and email contact. http://www.theangelfund.org/ The Angel Fund 649 Main Street Wakefield, MA 01880 Phone: 781-245-7070 A non-profit organization whose mission is to support research and scientific investigations at the Cecil B. Day Laboratory by raising funds through events, campaigns, foundation grants and numerous other community outreach activities, to aid in finding a cause, treatment and cure for ALS. http://www.brigancebrigade.org/ Brigance Brigade Foundation P.O. Box 437 Finksburg, MD 21048 Phone: 410-878-2030 OJ Brigance, a former NFL player, founded this non-profit organization after his diagnosis with ALS to equip, empower and encourage people living with ALS. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=566 Family Caregiver Alliance: ALS
4 This fact sheet has general information on ALS, symptoms, diagnosis, and treatment as well as recommendations for living with ALS. http://www.alsmndalliance.org International Alliance of ALS/MND Associations E-mail: [email protected] The International Alliance was founded in November 1992 to provide a forum for support and the exchange of information between worldwide ALS or Motor Neurone Disease (MND) associations. It now numbers more than 50 national patient support and advocacy groups from over 40 countries worldwide. http://www.lesturnerals.org Les Turner ALS Foundation 5550 W Touhy Avenue, Suite 302 Skokie, IL, 60077-3254 Phone: 847-679-3311 E-mail: [email protected] The Les Turner ALS Foundation is a leader in research, patient care, and education about ALS and other motor neuron diseases. The Foundation serves more than 90% of the ALS population in the Chicago area and reaches the ALS community worldwide through wide-ranging research and symposiums for health care professionals. http://www.mommamaryfoundation.org/ Momma Mary Foundation 631 Grove St. Jersey City, NJ 07310 Mary Valastro, mother of Buddy Valastro of Cake Boss TV fame, was diagnosed with ALS and the family started a non-profit organization in her name. http://mda.org/disease/amyotrophic-lateral-sclerosis Muscular Dystrophy Association – ALS Division Muscular Dystrophy Association - USA National Headquarters 222 S. Riverside Plaza, Suite 1500 Chicago, IL 60606 Phone: 800-572-1717 E-mail: [email protected] MDA offers a comprehensive range of services to people with ALS and has a worldwide research program. The site has ALS-related publications. http://www.cdc.gov/als National ALS Registry Phone: 800-232-4636 TTY: 888-232-6348 The CDC hosts the National ALS Registry which started in Fall 2010. The goal of the registry is to collect information to help scientists learn more about ALS.
5 http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/ALS.htm National Institute of Neurological Diseases and Stroke: ALS Information Page This page has information on ALS, including treatment, prognosis, research, and links to other organizations and publications. http://www.alsconsortium.org Northeast ALS Consortium (NEALS) Att: Tara Lincoln 50 Staniford St., 4th Floor Room 401I Boston, MA 02114 Phone: 877-458-0631 (Toll-free) E-mail: [email protected] NEALS’ mission is to rapidly translate scientific advances into clinical research and new treatments for people with ALS and motor neuron disease. NEALS offers live, online seminars (webinars) on ALS research for people with ALS and other motor neuron disease. The site provides a clinical trial database and allows people to find an ALS specialist. http://www.promotingexcellence.org/als/als_report Promoting Excellence in End-of-Life Care: Completing the Continuum of ALS Care – A Consensus Document Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation charged with the task of improving the end of life for dying patients. The Promoting Excellence program office recognized ALS as a disease that requires special attention at the end of life and worked with The ALS Association (ALSA) to identify the current state of end-of-life care for ALS patients and establish recommendations on how to improve the end of life for patients and their families. The Executive Summary and Report to the Field can be read online or downloaded as a PDF. http://www.teamgleason.org/ Team Gleason The Gleason Initiative Foundation PO BOX 24493 New Orleans, LA 70184 Email: [email protected] Team Gleason is a non-profit organization whose mission is to help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services. Additionally they work to raise public awareness toward ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries. Steve Gleason is a former NFL player who founded the organization when he developed ALS.
CD-ROM
6 21 st Century Complete Medical Guide to Amyotrophic Lateral Sclerosis (ALS) . Progressive Management, March 2004. ISBN 1592486738 A privately collected compilation of U.S. government documents on ALS from sources like NIH, CDC, etc.
Internet Forums http://www.als.net/forum/ ALS Forum The purpose of this forum (managed by the ALS Therapy Development Institute ) is to exchange information about ALS, scientific advances, and treatments. Forum members include people living with ALS today as well as their caregivers, family members, friends, neurologists as well as neurodegenerative disease researchers and pharmaceutical executives. http://www.alsforums.com ALSforums The ALS support forum is an open support community for individuals directly or indirectly affected by ALS and MND. http://health.groups.yahoo.com/group/living-with-als Yahoo! Groups: Living with ALS This forum provides an avenue for persons living with ALS and their caregivers to share information, ideas, support and fellowship. (Need to be a member to view page) http://neurotalk.psychcentral.com NeuroTalk NeuroTalk has an ALS support group, listed under Health Conditions A-L. http://www.patientslikeme.com/conditions/9-amyotrophic-lateral-sclerosis Patients Like Me: ALS Patients Like Me has discussion forums. Founded by Ben and Jamie Heywood after their brother was diagnosed with ALS.
REEVE FOUNDATION
7 LENDING LIBRARY
The following books and videos are available for free loan from the PRC library. For more information, please visit the online catalog at: http://www1.youseemore.com/ReevePRC/default.asp
Books
• Abramovitz, Melissa. Lou Gehrig’s Disease . (Diseases and Disorders series). Farmington Hills, MI: Lucent Books, 2006. For older children
• Albom, Mitch. Tuesdays with Morrie . New York: Broadway Books, 2002.
• ALS: Lou Gehrig’s Disease Patient Advocate . Riverside, CA: HealthScouter/Equity Press, 2009.
• Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature . Washington, DC: National Academies Press, 2006.
• Amyotrophic Lateral Sclerosis Medical Guide . Filiquarian Publishing, 2008.
• Appel, Vicki, Sandy Calvin and Imelda Otte. ALS: Maintaining Nutrition . Houston, TX: MDA ALS Center, 1991.
• Appel, Vicki, Sandy Calvin, Gena Smith and Donna Woehr. MeALS for Easy Swallowing . New York: Muscular Dystrophy Association, 1987.
• Atkinson, David. Hope Springs Eternal – Surviving a Chronic Illness . Virginia Beach, VA: A.R.E. Press, 1998.
• Bobo, Connie Crozier. On Eagle’s Wings: Fulfilling the Needs of Your Terminally Ill Loved Ones . North Las Vegas, NV: Freefall Factory, 1998. Bobo’s husband Perry passed away from ALS.
• A Booklet For Young People . Toronto: ALS Society of Canada, 1998.
• Bradley, Walter G. Gib’s Odyssey: A Tale of Faith and Hope on the Intracoastal Waterway . Guilford, CT: Lyons Press, 2011.
8 Shortly before his death, Gib Peters took a 6 month voyage from Key West to New York and back. The author is the neurologist who treated him.
• Cohen, Richard M. Strong at the Broken Places: Voices of Illness, a Chorus of Hope . New York: HarperCollins, 2008. One chapter is about a woman with ALS.
• Conte, Joseph J. and Constance J. Schneider Conte. Down the Yellow Brook Road: An ALS Victim’s Quest for Oz . Mustang, OK: Tate Publishing, 2006. Connie is diagnosed with ALS and she and her husband go to China to look for a cure.
• D’Amore, Martin J., M.D. Joy & Suffering: My Life with ALS . 2014.
• Dixon, Paige. A Time to Love, a Time to Mourn . New York: Scholastic Books/Vagabond, 1975. Fiction.
• Donalds, Sandra. ALS Caregivers Guide & Journal: A Caregiver’s Guide for Patients and Caregivers . Pickerington, Ohio: SLDonalds, LLC, 2013.
• Edney, Eric. Eric Is Winning: Beating A Terminal Illness With Nutrition, Avoiding Toxins And Common Sense . Xlibris Corporation, 2004.
• Eig, Jonathan. Luckiest Man: The Life And Death Of Lou Gehrig . New York: Simon & Schuster, 2005.
• Estess, Jenifer and Valerie Estess. Tales from the Bed: On Living, Dying, and Having it All – A Memoir . New York: Atria Books, 2004. Jennifer Estess was the founder (with her sister) of Project ALS. She passed away in December 2003.
• Feinstein, John. Caddy for Life: The Bruce Edwards Story . New York: Little, Brown and Co., 2004. Edwards was Tom Watson’s caddy when he was diagnosed with ALS.
• Ford, Elaine. Life Designs . Cambridge, MA: Zoland Books, 1997. Fiction
• Gold-Babbins, Bonny. Grandpa, What Is ALS? Calgary, Alberta, Canada: ALS Society of Alberta, 2000. Children’s book.
• Guion, Lee. Respiratory Management of ALS . Sudbury, MA: Jones and Bartlett, 2010.
9 Written for health care professionals.
• Hamilton, Diane. Tomato Juice: A Tribute to My Mom . Charleston, SC: Booksurge, 2006. Hamilton’s mother had ALS.
• Hanlan, Archie. Autobiography of Dying . New York: DoubleDay & Company, 1979.
• Harrison, Jim. Returning to Earth . New York: Grove Press, 2007. Fiction. Main character is part Native American and has ALS.
• Hawking, Stephen. My Brief History . New York: Bantam, 2013. A biography of Stephen Hawking, renowned cosmologist, who was diagnosed with ALS at the age of 21.
• Horn, Robert C. How Will They Know if I’m Dead? Delray Beach, FL: CR/St. Lucie Press, 1997. Autobiography.
• If They Could Only Hear Me: A Collection of Personal Stories About ALS and the Families That Have Been Affected . Ed Rice, editor. Wakefield, MA: The Angel Fund, 2005. www.theangelfund.org
• Jorgensen, Karen. Falling Practice: What Illness Teaches Us . Berkeley, CA: Silent Press, 2005.
• Larsen, Kristine. Stephen Hawking: A Biography . Westport, CT: Greenwood Press, 2005.
• Lindquist, Ulla-Carin. Rowing Without Oars . London: John Murray Publishers, 2005. Memoir. Translated from Swedish.
• Lippert, Marion. Walking on Central Boulevard . Cape Canaveral, FL: Blue Note Books, 1998. A mother’s story.
• Living with ALS . Calabasas, CA: ALS Association, 2002. 6 volume set (What’s It All About, Coping with ALS, Managing Your Symptoms, Functioning When Your Mobility is Affected, Adjusting to Swallowing and Speaking Difficulties, Adapting to Breathing Changes)
• Lund, Howard. Walking Through the Valley: Dealing with the Prospect of Death with Bulbar ALS . Howard Lund, 2005.
10 • Malcolm, Andrew. This Far and No More . New York: Times Books, 1987. A biography.
• Martin, Joe and Ross Yockey. On Any Given Day . Winston-Salem, NC: John F. Blair, 2000. Autobiography.
• Maurice, Michael. Mumbles and Me: A Tribute to the Woman I Loved . Cape Canaveral, FL: Blue Note Books, 1999. Maurice’s wife Carole died of ALS.
• McGill, Frances. Go Not Gently . New York: Arno Press, 1980. Letters from a patient with ALS.
• Miller,Robert G. et al. Amyotrophic Lateral Sclerosis . New York: Demos Medical Publishing, 2005.
• Mitchell, Kristee Smith. My Father’s Heroic Battle with ALS . 2003.
• Mitsumoto, Hiroshi and Theodore L. Munsat. Amyotrophic Lateral Sclerosis: A Guide for Patients and Families . New York: Demos Medical Publishing, 2001.
• Murray, Jan. How ALS Changed Everything: Learning to Keep on Keepin’ On . Middletown, Del. 2014. Murray’s husband Bill and two of his brothers have or had ALS.
• Nichols, Helene E.D. Bigger Than the Sky: The True Love Story of Emilie and Her Grandfather . Xlibris Corp, 2003. Emilie’s grandfather has ALS.
• Nielson, Stuart. Motor Neurone Disease: The “At Your Fingertips” Guide . London: Class, 2003.
• Nieto, Augie and T.R. Pearson. Augie’s Quest: One Man’s Journey from Success to Significance . New York: Bloomsbury USA, 2007.
• Oliver, David. Motor Neurone Disease: A Family Affair . London: Sheldon Press, 1995.
• Palliative Care in Amyotrophic Lateral Sclerosis: From Diagnosis to Bereavement . David Oliver, Gian Domenico Borasio, Declan Walsh, editors. New York: Oxford University Press, 2006. 2 nd edition.
• Paquin, Susan L. I Don’t Know How to Die: A Daughter’s Story . Baltimore: PublishAmerica, 2003. The author’s mother is diagnosed with ALS.
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• Parker, James N. and Philip M. Parker. The Official Patient’s Sourcebook on Primary Lateral Sclerosis . San Diego, CA: ICON Publication, 2002.
• Paulson, Robert E. Not in Kansas Anymore: A Memoir of the Farm, New York City and Life with ALS . Winnipeg, Maintoba, Canada: Gemma B. Publishing, 2008.
• Rabin, Roni. Six Parts Love: A Family’s Battle with Lou Gehrig’s Disease (ALS) . New York: Charles Scribner’s Sons, 1985. True story written by the daughter of an ALS patient.
• Riggs, Angela. When the Music Stopped I Kept on Dancing . Wilsonville, OR: BookPartners Inc., 1995.
• Robillard, Albert B. Meaning of a Disability: The Lived Experience of Paralysis . Philadelphia,: Temple University Press, 1999. An autobiography.
• Robinson, Ian and Maggie Hunter. Motor Neurone Disease . New York: Routledge1998.
• Rouelle, Jay A. Terminally Sane: One Man’s Journey Beyond Lou Gehrig’s Disease . Montpelier, VT: Jarou Publishing, 1999.
• Saran, Linda. In My Dreams “I Do” . Chicago: Effie & Marina Publishing, 1999. Children’s book.
• Schwartz, Aloysius, Monsignor. Killing Me Softly: The Inspiring Story of a Champion of the Poor . New York: Alba House, 1993. Schwartz dictated the book and passed away one week after completing it. He was a missionary in Korea, the Philippines, and Mexico.
• Schwartz, Morrie. Letting Go . New York: Walker and Company, 1996. Autobiography.
• Schwartz, Morrie. Morrie: In His Own Words . New York: Dell Publishing, 1997. Autobiography. Previously published as Letting Go .
• Shapiro, Leslie. Another Bump in the Road: One Woman’s Journey Through ALS . Self-published, no date. [between 2006-2009] Biography of Shapiro’s friend Linda Burge who had ALS.
• Shaw, Linda Chute. A Legacy of Faith: A Journey Through ALS . Bloomington, IN: AuthorHouse, 2006.
12 Biography
• Shelton, Barbara with Bob Terrell. Woody . Chappaqua, NY: Christen Herald Books, 1979. A family’s courageous victory over ALS.
• Smith, Brian A. Closing Comments: ALS – A Spiritual Journey into the Heart of a Fatal Affliction . Toronto: Clements Publishing, 2000. Autobiography.
• Spencer-Wendel, Susan. Until I Say Good-Bye: My Year of Living with Joy . New York: HarperCollins, 2013. Memoir
• Stuban, Sandra Lesher. The Butcher’s Daughter: The Story of an Army Nurse with ALS . College Station, TX: Virtualbookworm, 2009. Stuban went from being an Army nurse to being a vent -dependent quadriplegic because of ALS.
• Sturtz, Elaine J. Clinger. The Final Dance of Life: Our Journey with Judy . Mustang, OK: Tate Publishing, 2006. Biography of Reverend Judy Shook and how her ministry helped her through the last 15 months of her life.
• Tank, David. River of Hope: My Journey with Kathy in Search of Healing from Lou Gehrig’s Disease . Eau Claire, WI: Planert Creek Press, 2008.
• Van Riper, Guernsey, Jr. Lou Gehrig: One of Baseball’s Greatest . Aladdin Paperbacks, 1986. (Childhood of Famous Americans series). Focuses on Gehrig’s childhood.
• Vejjajiva, Jane. The Happiness of Kati . New York: Atheneum Books for Young Readers, 2006. Fiction. Nine-year old Kati lives with her grandparents because her mother has ALS. Set in Thailand.
• Wade, Mary Dodson. ALS- Lou Gehrig’s Disease . Berkeley Heights, NJ: Enslow Publishers, 2001. Nonfiction for teens.
• Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted and ALS. New York: Marlowe & Company, 2005.
• Warner, Delores M. Don’t Buy Too Many Green Bananas: Living with ALS (Lou Gehrig’s Disease) . Auburn, Wash.: Lady Peacock Press, 2012.
13 • Wedemeyer, Charlie & Lucy with Gregg Lewis. Charlie’s Victory . Grand Rapids, MI: Zondervan Publishing House, 1993. Autobiography.
• Weiner, Jonathan. His Brother’s Keeper: A Story From the Edge of Medicine . New York: HarperCollins, 2004. Stephen Heywood was twenty-nine years old when he learned that he was dying of ALS. His older brother, Jamie, became a genetic engineer to try to save his life.
• Whaley, Shirley. Chris’ Miracle . Greenville, SC: Chris Whaley Ministries, 1983.
• When a Loved One has ALS: A Caregiver’s Guide . Tucson, AZ: Muscular Dystrophy Association, 2002. 2 nd edition.
• Wildgen, Michelle. You’re Not You: A Novel . New York: Thomas Dunne Books, 2006.
• Wise, Terry L. Waking Up: Climbing Through the Darkness . Oxnard, CA: Pathfinder Publishing of California, 2003. Wise was widowed at 35 when her husband died of ALS. Explores the impact the disease has on family members.
• Woodard, Bert. Living with It—Not Dying of It: A Guide for Living with ALS and Other Degenerative Disorders . Nashville, TN: Westview Book Publishing, 2007. Woodard has had ALS for 25 years.
Videos
• ALS: A Reason for Hope . Princeton, NJ: Films for the Humanities and Sciences, 1997. (19 minutes)
• ALS Disease: Living with Terminal Illness . Sherborn, MA: Aquarius Healthcare Videos, 2004. (28 minutes)
• ALS: Lou Gehrig’s Disease . Princeton, NJ: Films for the Humanities and Sciences, 2004. Doctor is In series. DVD (29 minutes)
• A Brief History of Time . Hollywood, CA: Paramount, 1992. (84 minutes) Based on the best -selling book by Stephen Hawking
• Bearing Witness: Robert Coley-Donohue . A National Film Board of Canada Production, 2004. VHS and DVD. (90 minutes)
• David Mairs: A Remarkable Man in a Challenging World . Pebble Beach, CA: Morgan Stock Co., 2004. (30 minutes)
14 Mairs was diagnosed with ALS fifteen years ago. He is a former Jefferson Airplane roadie who became the head of a major electric company.
• Driving Force: A Story of Life . EdTech Associates, 2000. (18 minutes)
• In Sickness and in Health . New York: Women Make Movies, 2007. DVD. (56 minutes). A documentary that follows gay rights activists and longtime partners Marilyn Maneely and Diane Marini as their battle to legalize their same -sex marriage becomes a race against time due to Marilyn’s ALS.
• The Lou Gehrig Story . Millennia Entertainment. (50 minutes) Documentary.
• Life…So Precious . West Falmouth, MA: Compassionate Care. The saga of ALS (Lou Gehrig’s Disease) 4 Lives 4 Families 4 heartmoving stories
• Living Fully Until Death: Find Meaning in the Final Days of Life . Sherborn, MA: Aquarius, 1997. VHS. Features a person with ALS as well as ones with leukemia and lung cancer.
• Living With ALS: Adapting to Breathing Changes and Use of Noninvasive Ventilation . Calabasas Hills, CA: The ALS Association.
• Living With ALS: Adjusting to Swallowing Difficulties and Maintaining Good Nutrition . Calabasas Hills, CA: The ALS Association.
• Living With ALS: Clinical Care Management Discussion Among ALS Experts . Calabasas Hills, CA: The ALS Association.
• Living With ALS: Communication Solutions and Symptom Management . Calabasas Hills, CA: The ALS Association.
• Living With ALS: Mobility, Activities of Daily Living, and Home Adaptations . Calabasas Hills, CA: The ALS Association.
• Living with Lew . New York: Cinetic, 2008. DVD. (88 minutes) Documentary of filmmaker Scott Lew who was diagnosed with ALS at the age of 33.
• A Love Affair: The Eleanor and Lou Gehrig Story . Worldvision Home Video, 1985. (96 minutes) Cinema film based on a true story. Starring Edward Hermann, Blythe Danner, and Patricia Neal.
15 • Morrie, Lessons on Living . ABC News, 1999.VHS. (57 minutes) Nightline episode. Anchored by Ted Koppel.
• Morrie Schwartz: Lessons on Living . ABC News, 2005. DVD. (60 minutes) Nightline episode. Anchored by Ted Koppel
• The Man Who Learned To Fall . Quebec. Beitel/Lazar Productions Inc.: 2004. DVD (77 minutes) This documentary is about Phil Simmons, a gifted writer and teacher who celebrates the wonder of life even as he is slowly dying of ALS. Filmed in the foothills of the White Mountains, this is an intimate portrait of Phil and his family and the odyssey they shared over the final months of his life.
• The Pride of the Yankees . MGM, 1942. DVD. (128 minutes) Film starring Gary Cooper as Lou Gehrig.
• Professor Hawking’s Universe . Princeton, NJ: Films for the Humanities and Sciences, 1993. (50 minutes) Follows Hawking and his students in their quest for ultimate knowledge.
• Project A.L.S. Medfield, MA: Aquarius Health Care Videos, 2003. (16 minutes) About the 5 women who organized Project ALS.
• So Much, So Fast . West City Films, 2007. Documentary. Stephen Heywood has ALS and his brother Jaime becomes obsessed with finding a cure.
• The Theory of Flight . New Line Home Video, 1998. (98 minutes) Helena Bonham Carter stars as a woman with ALS. Billed as a comedy. Film introduction courtesy of the ALS Association.
• Tuesdays With Morrie . Harpo Films & Touchstone Home Video, 2000. DVD (89 minutes) Cinema film based on a true story. Starring Jack Lemmon and Hank Azaria.
• Ventilation: “The Decision Making Process” . Skokie, IL: The Les Turner ALS Foundation. (22 minutes)
• Who Owns My Life? The Sue Rodriguez Story . New York: Filmmakers Library, 1994. (47 minutes) Documentary about physician -assisted suicide.
• You’re Not You . Entertainment One, 2015. DVD (102 minutes). Drama When an accomplished pianist is diagnosed with ALS, she hires a directionless young woman who becomes her full-time caregiver. The two form a life changing bond inspiring each other to live life to the fullest.
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The information contained in this message is presented for the purpose of educating and informing you about paralysis and its effects. Nothing contained in this message should be construed nor is intended to be used for medical diagnosis or treatment. It should not be used in place of the advice of your physician or other qualified health care provider. Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly. Always consult with your physician or other qualified health care provider before embarking on a new treatment, diet or fitness program. You should never disregard medical advice or delay in seeking it because of something you have read in this message.
This project was supported, in part by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorships are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.
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