ALS Facts & Resources
Amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.
As of today, the cause of ALS is unknown. There are no known preventative measures, and there is no recognized cure.
- About 30,000 people nationwide suffer from ALS.
- ALS strikes nearly 5,600 people in the U.S. each year.
- Symptoms can include twitching, cramping, or stiffness of muscles – muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing.
- The disease most commonly strikes people between 40-60 years of age.
- Young adults and older individuals can also develop the disease.
- Average lifespan after diagnosis is two to five years.
- The disease crosses all ethnic, racial and socioeconomic boundaries.
- Men are affected more often than women.
- Eventually all muscles under voluntary control are affected.
- Because ALS affects only motor neurons, the disease does not impair a person’s mind, personality, intelligence, or memory.
- Patients usually maintain control of eye muscles and bladder and bowel functions.
- Patients lose their strength and ability to move their arms, legs, body, and when the muscles in the diaphragm and chest wall fail, the patients lose the ability to breathe without ventilatory support.
- Beginning symptoms show in one of three areas: lower extremity, bulbar area, or upper extremity.
- No one test can provide a definitive diagnosis or ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive.
- The diagnosis of ALS Is primarily based on the symptoms and signs the physician observes in a patient and a series of tests to rule out other diseases.
- ALS CARE – Started by “the ALS Nurse,” Mary Beth Geise. Specializes in the care for ALS patients and ALS caregivers. Offers information, tips, and techniques to help patients overcome the challenges of living with ALS. Learn more.
- ALS Therapy Development Institute — Provides free, Web-based informational programs to update patients, caregivers and their families on ALS research. Includes the ALS Forum, monthly webinars and quarterly research webcasts as well as an annual Leadership Summit.
- ALS Worldwide — A not-for-profit organization created by Stephen and Barbara Byer for ALS patients and their families. Offers information, advice, direction, support, guidance and hope. Learn more.
- CaringBridge — Provides free, personalized websites that support and connect loved ones during critical illness, treatment and recovery. Learn more.
- Focus on ALS – An excellent website for information that is more detailed than other sites on things like nutrition and communication. Learn More.
- Health Line – This site offers a great deal of information about ALS that is well organized. There is additional information on medications and some images of neurons and how ALS affects them. Learn More.
- Mayo Clinic – Good information with tabs for definition, symptoms, tests, treatment, coping/support, and others. Learn more.
- National Institute of Neurological Disorders and Stroke- Good information that is technical and in large quantities. Learn more.
- Nebraska Neuromuscular Consultants – Vahid Taghavi, MD – Nebraska Neuromuscular Consultants & Electro diagnosticsis the only clinic in the region that uses advanced electro diagnostic testing; EMG, quantitative sensory testing and autonomic reflex screen in diagnosis and management of patients with various Neuromuscular disorders and provides specialty clinic for patients with ALS and other neuromuscular disorders. Learn more.
- Neurology Channel – This website has a great deal of information about ALS. In addition to the usual tables of symptoms, diagnosis, etc, the site also has a tab for questions to ask your physician, living with ALS, and a personal story. Learn More.
- Patientslikeme — A community of patients, doctors, and organizations that inspires, informs and empowers individuals with life-changing conditions. Download free documents to use as support group meeting handouts, community postings and event presentations. Learn more.