How to Cope With ALS

ALS (amyotrophic lateral sclerosis) is a deadly neurological disease that causes weakness of the muscles and disability. It is also known as Lou Gehrig's disease (after a famous baseball player who died of ALS in 1941). ALS symptoms begin with a twitching and weakness of leg or arm muscles, accompanied by a slurring of speech. ALS affects the muscles needed to move, speak, chew, swallow and breathe. The nerve cells that control the muscles die, and they weaken until they're finally paralyzed. Most people with ALS eventually die from respiratory failure.

Patients who learn they have ALS can be devastated. Because ALS is a fatal illness and so debilitating, both patients and their families need tremendous support and coping mechanisms.

Instructions

• 1

  Take time to absorb the information, understand what you'll be dealing with and get over the shock when you are diagnosed with ALS. Allow yourself the time you need to feel sad and come to terms with your grief. Take advantage of professional support from psychologists, counselors, social workers, ALS organizations, support groups and your local hospice. You can get a lot of support and information from others who are familiar with what you and your family are facing.

• 2

  Try to be hopeful. You may have only three to five years of time, but perhaps more than ten years. Make the most of the time that you have. Many people find a spiritual awareness that they were lacking before their diagnosis. You can look at ALS as a slow death or an opportunity to enrich your life to the fullest for the time that you have.

• 3

  Talk often to your family members and friends. ALS can bring you closer to them. Keep the lines of communication open so that you all feel comfortable expressing your feelings. Encourage your loved ones to express their feelings. Children in your life will have lots of questions and anxiety. A social worker or counselor can help you with any communication issues you might have.

• 4

  Make decisions and plans for your medical care. Work with your doctor, hospice and family to plan whether or not you want life-extending treatments in your final days. This will take a great burden off your loved ones. If you talk about the future now and make plans, you can then relax and enjoy the time you have knowing that you will be provided the care you want.

• 5

  Your attitude is everything. Don't let ALS define you. You are still the same interesting, wonderful person that you are. Don't let ALS take away your intellect, personality or spirit. Think of it as a part of your life, not your life.