MAIN Health Diseases & Conditions ALS, Lou Gehrig's Disease

There are many names for this disease. It is known in the USA and Canada as Amyotrophic Lateral Sclerosis (ALS) and Lou Gehrig's Disease, and in Australia, New Zealand and Britain as Motor Neuron Disease (MND).

It is a neuromuscular disease resulting in the body gradually losing control of the muscles. Nerve cells in parts of the brain and spinal cord degenerate causing voluntary muscles to cease responding.

As the disease progresses people with ALS - MND lose the ability to move their arms and legs. Physical therapy and assistive devices allow patients to remain mobile even after the disease begins to affect their limbs.

Speech muscles are also affected and speech therapy or speech synthesizers and computers are helpful in keeping communication channels open. In the final stages of this disease the muscles needed to breathe stop working and respirators may be used to maintain lung function for as long as possible.

There are two forms of ALS - MND. The familial type is passed genetically. This type effects less than ten of every one hundred people who develop Lou Gehrigs Disease. If you have two or more relatives with ALS - MND, you may have an increased chance of getting Amyotrophic Lateral Sclerosis. The more common sporadic type is not a genetically inheritable disease. There is very little known about what causes people to develop this degenerative disorder.

Famous People with ALS

ALS first gained widespread public attention in the United States in 1939, when Hall of Fame baseball player Lou Gehrig of the New York Yankees was diagnosed -- which is why many people know it by the name of Lou Gehrig's Disease.

Theoretical astrophysicist Stephen Hawking has been living with ALS for many decades while producing some of the most brilliant theories in his field. He was first diagnosed in 1963. While it is unusual for a person diagnosed with ALS - MND to survive for many years after the diagnosis, it is possible. About 10 percent of those with motor neuron disease survive for 10 or more years. Early diagnosis is difficult, but the earlier treatments can begin the better.

Hope for a Cure

While no cure for ALS is on the horizon, there have been advances in the treatments and medications used to slow the progress of the disease. Riluzole is the primary drug used to slow the progress of ALS - MND and many other drugs, such as Myotrophin (somatomedin C), are currently being used or tested in clinical trials.

Most recently, a genetic cause may have been identified by Australian scientists, and related ALS stem cell research also looks promising, but definitive studies will take years.

People who are diagnosed with Lou Gehrig's disease can look forward to slowing down the disabling effects of Amyotrophic Lateral Sclerosis and living much longer than was the case even ten years ago. Support groups for patients and caregivers can provide ideas for successfully coping with the changes in lifestyle and the emotional stress of living with increasingly reduced mobility and a terminal illness...

The ALS Association - Information on advocacy for ALS, clinical trials, stories of personal courage in dealing with this disease, the latest research plus facts for the patient and professionals are just the beginning of the resources you'll find on this site.

International Alliance of ALS/MND Associations - This is the home page of an international group dedicated to funding research to find better ways to treat this disease and raising public and governmental awareness of the need for research. The links and informational resources are up to date, extensive and cover many countries in several languages.

ALS Society of Canada - Lou Gehrig's Disease - The focus is Canada but the resources are international and geared towards all ALS patients and their families. Latest news and research plus advocacyand support are all covered. A Guide to ALS Patient Care For Primary Care Physicians is geared to professionals to help familiarize them with symptoms and bring about an earlier diagnosis and better treatment.

Build-UK - The main page of this site gives the impression that the site is under construction - and so it is. As new information and sites are available, they are added. But the site is very well developed. The forum is active, the links are extensive, the gallery is filled with pictures of members and the information is top notch.

Treatment of Lou Gehrig's Disease at Mayo Clinic - An authoritative site on this disease and the latest treatment information.

National Institute of Neurological Disorders and Stroke Amyotrophic Lateral Sclerosis Information Page - NINDS is a US government site and many of the resources are limited to the US. They are a good source for information on ALS and have a good explanation in Spanish - Esclerosis lateral amiotrófica (ELA).

Clinical Trials. gov Amyotrophic Lateral Sclerosis - US government site listing clinical trials. Some are currently recruiting and others have not started yet. This is a good place to find out what the current research is and to obtain access to experimental treatments.

Les Turner ALS Foundation - This site has an extensive collection of resources on Lou Gehrigs Disease. The Resource Guide they have prepared is worth reading if you need specific information on effects and symptoms. The section on genetics in the resource guide is a good place to look for a clear explanation of familial ALS.

ALS Network - Put together by a family affected by ALS, this site has plenty of information from a patient and caregiver perspective. You'll find articles on creatine, travel, forums, exercises to help with stiffness and other information to help cope with Motor Neuron Disease

Prevention's Healing With Vitamins - Lou Gehrigs Disease - Good information on nutrition for those diagnosed with ALS. Vitamin E and other dietary factors are discussed in the context of supplementing traditional medical treatments.

This information is intended as reference and not as medical advice.
All treatment decisions should be made by medical professionals.