ALS strikes both men and women, generally between the ages of 40 and 75, although many patients are young adults in their 20's and 30's. Fifty percent of patients with ALS live three to five years, 20 percent live five to 10 years, and 10 percent survive 10 years or more.

ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries. In the U.S., there are currently more than 30,000 people living with ALS and over 5,000 people in the U.S. are newly diagnosed with ALS each year. In Michigan, it is estimated that there are between 800 - 1,000 people with ALS (pALS) and 200 who are newly diagnosed on an annual basis.

Sporadic ALS is the most common form and accounts for 90 to 95 percent if all cases of ALS. It occurs randomly throughout the population. "Familial" ALS suggests the disease is inherited. Only five to 10 percent of all pALS appear to have some form of inherited ALS.

Early symptoms vary with each individual and ALS is very difficult to diagnose. There is no one test or procedure to establish the diagnosis. However, once a diagnosis is made, much can be done not only to help PALS live with the disease, but also to live more productively and more independently.

Rehabilitation techniques and assistive devices are helping patients learn how to work around the weakness and functional disability caused by ALS. Plus local organizations, such as ours, ALS of Michigan, can provide PALS with support groups, necessary information and caring ears.

As of today, there is no known cause for the majority of people diagnosed with ALS. However, several genes have been indentified in familial ALS, which accounts for approximately 10% of ALS cases.

About 90% of pALS are diagnosed with sporadic ALS, which has no known cause.

While there is no cure for ALS, physicians experienced with ALS will work with the patient and family to manage ALS symptoms. Two medications, Rilutek®, and Radicava have been approved to help slow the progression of the disease. Additionally, there are medications to relieve other symptoms such as, muscle cramping, excessive saliva, depression, and anxiety. Physical Therapy and Range of Motion exercises can be done to ease any stiffness or cramps.

Dieticians are able to show ways to promote good eating habits and what to do if swallowing becomes an issue. Meeting with the ALS of Michigan speech pathologist can also teach techniques to help pALS continue to speak or use devices to communicate are available. Durable medical equipment (DME), that is available in our loan closet, such as bath equipment, eating utensils, walkers, and wheelchairs are forms of DME and can be used when mobility becomes an issue. Emotional support and counseling by our licensed social workers can provide to help deal with the many changes and challenges of ALS.

There are many types of assistive devices to help with everyday tasks such as getting dressed, eating, walking and speaking. ALS of Michigan provides a comprehensive durable medical equipment loan closet that is available free of charge to our Michigan pALS. Equipment includes ramps, lifts, wheelchairs, communication devices, and more.

We are also proud to provide Michigan’s only Augmentative and Alternative Communication Center specifically for pALS. This Center showcases many of the most commonly used augmentative communication devices, both low and high tech. We also have a speech pathologist on staff who specializes in communication evaluations and equipment. For more information about our communication center and loan closet, call (800) 882-5764.

We offer monthly support groups around the state for pALS, their family members and caregivers. View upcoming meetings »