May 17, 2013

Lou Gehrig is known for two things: being one of the greatest first baseman the world has ever seen, and his tragic diagnosis at age 36 of the disease that now bears his name–Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. A diagnosis of ALS can be devastating at any age, but older adults living with ALS face special challenges. And since May is National ALS month, it’s a great time to talk about ALS and for families impacted by the disease, how to best help a loved one manage the disease.

What is ALS?

ALS is a progressive degenerative disease that affects motor neurons, the nerve cells in the body that send signals to the muscles fibers that allow us to move. In the later stages, ALS often causes paralysis, and the disease is eventually fatal. While there is not a cure or a treatment that can stop the progress of ALS, there is one FDA-approved drug, called riluzole, that can slow the progression of ALS, and there are several other drugs currently undergoing clinical trials.

Who gets ALS?

An estimated 5,000 people in the United States are diagnosed with ALS each year. ALS affects people of all ethnic backgrounds. ALS is most often diagnosed in people between the ages of 40 and 60, but people of any age can develop the disease. In 90 to 95 percent of of ALS cases, there is no family history of the disease, and the diagnosed person’s family members are not considered to be at risk. In about 5 to 10 percent of cases, ALS is inherited.

How do I help a loved one manage ALS?

The first step to successfully managing ALS is to get expert help. The ALS association has chapters all around the country that help people living with ALS and their family members by providing information, support and access to resources available in your community.

One of the most difficult aspects of ALS can be the financial cost. Medications, doctor’s visits, equipment, and services add up quickly, and can be very stressful if you’re not prepared to deal with them. So another valuable resource for those dealing with ALS is a financial planner. A financial planner who specializes in special needs planning can work with you to form a plan that can help you manage the financial burden of ALS.

Another thing to consider is caregiving. Taking care of a loved one with ALS is a full time job and most caregivers need to continue to work to manage the costs of the disease. Typically a person with ALS would like to live in his or her home for as long as possible. One way to facilitate this goal is to enlist the services of an in-home caregiver, who can help with transporting your loved one to doctor’s appointments and physical therapy, and personal needs like bathing, dressing, and feeding.

Facing ALS can be incredibly frightening. With the right information, support, from friends and family and professional help, though, it is a challenge that can be met. For more information about ALS, visit these resources:

The ALS Association
The National Institute of Health’s ALS page
The Mayo Clinic’s ALS page