ALS (Amyotrophic Lateral Sclerosis)
Caring for a loved one with ALS is no easy task. Not only does it require physically caring for someone you love at home, but it also means facing your own concerns about the diagnosis and eventual outcome of the disease. You may be concerned that there is no cure for your loved one's disease. You may also worry about how quickly the disease will progress. Physical and emotional care can be time-consuming and exhausting. Most caregivers of people with ALS have concerns about their loved ones' illness and future health prospects. Practical concerns, such as worries about financial issues and time management, are also common. The goal of this chapter is to address some of these concerns. Learning more about ALS is an essential first step in your caregiver role. This can be important for caregivers who are often caring for partners. It may be overwhelming to think of your loved one being helpless and dependent upon you. Understanding the disease and knowing what to expect can help you feel more in control. It can be difficult to learn about a disease when you do not know where to start. This section provides general information about ALS, including what caregivers can do to help their loved ones.
What Is ALS? ALS, also known as Lou Gehrig's disease, refers to a type of motor neuron disease. Motor neurons control muscles. Patients with the disease lose their ability to move as the neurons die. As motor neurons die, the muscles they control begin to twitch and weaken (atrophy), eventually losing their ability to function. Patients with ALS lose strength all over their bodies. Eventually they may not be able to move or to breathe without assistance. ALS does not affect the ability to think or remember. It will not affect the personality of your loved one. Although the patient may become frustrated and saddened by the disease, he/she will remain the person you have always known. He/she will be able to move the eye muscles and retain control of bladder and bowel functions. The senses of taste, touch, smell, sight and hearing also remain intact and can continue to bring great pleasure to your loved one. (Adapted from a National Institute of Health ALS Fact Sheet, August 2000) Who Gets ALS? According to the National Institutes of Health, about 20,000 people in the United States have ALS. An estimated 5,000 people per year are diagnosed in the United States. It affects all races and age groups, although it is more prevalent in men and in people aged 40 to 60 years old. Your family members and friends may wonder if they can "catch" ALS from the patient. The disease is not contagious. It cannot be spread from person to person through the air, by contact or via blood transfusions. In about 5 to 10 percent of all cases, ALS is inherited. This means that it is passed through the family from parent to child. This is called familial ALS. In the other 90 to 95 percent of ALS cases, the cause is not known and no risk factors have been identified. This is known as sporadic ALS.
(Adapted from Forshew, D. and Hulihan, S. Living with ALS: What's It All About?. ALS Association, 1997) Diagnosing ALS Doctors use various means to make a diagnosis:
(Adapted from information provided by the Muscular Dystrophy Association, 2001 and from a National Institutes of Health ALS Fact Sheet, August 2000) Hearing that your loved one has ALS may be frightening. It is difficult to know how quickly the disease will progress. You may worry about whether he/she will suffer. This disease will eventually make your loved one dependent upon others for care. You may want to take care of him/her but wonder if you can. There is so much for you to think about, yet you might be reluctant to talk to your loved one about your worries. It is important that you get support when you feel like this. Click here for more information on obtaining support, taking care of yourself and using relaxation techniques.
Treatment for ALS Although there is currently no cure for ALS, there are treatments that can slow the progression of the disease and improve its symptoms. Treatment options, some of which depend on the symptoms, include:
Drug therapy Riluzole (Rilutek) is the first drug treatment approved by the Food and Drug Administration (FDA) for the treatment of ALS. This drug has been shown to reduce the damage ALS does to motor neurons. However, Riluzole does not reverse the damage already done. In clinical trials with ALS patients, Riluzole prolonged survival by several months. Patients on the drug also survived longer without needing ventilation support. (Adapted from a National Institute of Health ALS Fact Sheet, August 2000) Non-drug therapy Non-drug therapies can be very important for ALS patients. They can help improve patients' quality of life and provide relief for caregivers as well. Learning about the therapies, including when and where to obtain them, is a valuable way for you to help your loved one cope with ALS.
Click here for more information on relaxation techniques.
Treatment for disease-related symptoms As ALS progresses, your loved one will develop new symptoms. The good news is that there are treatments for these symptoms. You can help by understanding each symptom and related treatment options. You can also help by knowing when to contact your loved one's health care team. Click here for more information on how and when to effectively communicate with the health care team.
Click here for more information on the symptoms listed below. The sections on emotional needs and learning how to relax describe techniques that can help patients relax and cope with emotions.
Click here for information on the symptoms listed below.
(Adapted from Gelinas, D. Living with ALS: Managing Your Symptoms and Treatment. ALS Association, 1997) Clinical trials Clinical trials are research studies that evaluate new treatments. Those who take part in clinical trials are some of the first to receive and benefit from new approaches to ALS therapy. These treatments have usually been tested with good results. Patients in trials are watched closely by physicians and researchers. For more information on how clinical trials and ALS research might benefit your loved one, contact the National Institute of Health and/or the Muscular Dystrophy Association. Click here for information on these organizations and other helpful ALS resources.
Complementary or alternative therapy Complementary and alternative therapies are treatments that do not use known ALS drugs. Rather, therapy comprises techniques not common in the medical community. Some complementary therapies (such as relaxation, visualization, and acupuncture) are so common that they are considered mainstream, and used along with traditional medical therapies. It is important to research and understand the risks and benefits of these therapies, and to discuss their use with the doctor. The National Center for Complementary and Alternative Medicine (NCCAM) Clearinghouse is a good source of information for these approaches. Click here for information on this organization and other helpful ALS resources.
What You Can Do to Help
For more information on relaxation techniques, click here.
Helpful ALS Resources Organizations National Institute of Neurological Disorders and Stroke NIH Neurological Institute P.O. Box 5801 Bethesda, MD 20824 (800) 352-9424 http://www.ninds.nih.gov/health_and_medical/pubs/als.htm This is the primary National Institute of Health organization for research on ALS. It provides excellent, up-to-date, and easy to understand information on the disease. ALS Association of America (ALSA) 27001 Agoura Road, Suite 150 Calabasas Hills, CA 91301-5104 (818) 880-9007 (800) 782-4747 Patient hotline (818) 340-2060 Fax http://www.alsa.org This is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS. It provides a library of free manuals on living with ALS and videos that you can borrow for a small fee to learn more about the disease. The material provided includes information on the management of disease-related symptoms. Some support group and caregiver information is also provided. The Website has a forum for sharing stories about the disease. The Muscular Dystrophy Association 3300 East Sunrise Drive Tucson, Arizona 85718-3208 (520) 529-2000 (800) 572-1717 http://als.mdausa.org This organization provides a comprehensive Website with information about the disease, research information (including clinical trials), an "Ask The Expert" service, online videoconferences, referrals to support groups and access to publications, including an excellent online caregivers' guide and an ALS newsletter. Information is also provided in Spanish. U.S. National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 (888) FIND-NLM (888) 346-3656 (301) 594-5983 (local and international calls) http://clinicaltrials.gov/ct/gui/action/FindCondition?ui= D000 690&recruiting=true This service, which is provided by the National Institute of Health, posts information on ALS clinical trials. National Center for Complementary and Alternative Medicine (NCCAM) Clearinghouse P.O. Box 8218 Silver Spring, MD 20907-8218 Toll Free: (888) 644-6226 TTY/TDY: (888) 644-6226 FAX: (301) 495-4957 http://nccam.nih.gov/ This is the National Institute of Health organization dedicated to exploring complementary and alternative healing practices. Websites MEDLINEplus Health Information http://www.nlm.nih.gov/medlineplus/amyotrophiclateralsclerosis.html MEDLINE is a service of the National Library of Medicine that provides excellent links to Websites, journals, and abstracts for a variety of topics related to ALS. ALS Survival Guide http://www.alssurvivalguide.com/ This is a patient-run ALS Website. It provides a unique glimpse into the disease through the site founder's journal entries and the sharing of other ALS stories. The site also offers other information including an "Ask the Expert" service and some caregiver information. Español/Spanish Information Hechos Sobre la Esclerosis Lateral Amiotrofica (ALS) (Muscular Dystrophy Association) http://www.mdausa.org/espanol/esp-fa-als.html
