There’s no easy way to hear, “You have ALS,” but approximately 15 Americans1 hear those words every day. If you or someone you love has been recently diagnosed with ALS, know that there are things you do can today and along the way to enjoy the highest quality of life possible.
As with most diseases, the course or progression of ALS can vary greatly from person to person. Although the average life expectancy is two to five years1, some people live much longer. That’s why it’s so important to take charge early, giving yourself the best opportunity to live your life to the fullest. Here are 8 things you can do for yourself.
- Take time to adjust. Everyone responds differently—there is no one right way to feel. Allow yourself time to work through emotional reactions such as denial, anger, sadness, and grief.
- Learn about ALS. Becoming educated about the disease and your care options can be empowering; however, make sure you’re seeking information from reputable, credible sources such as The ALS Association (ALSA), the National Institute of Neurologic Disorders and Stroke, or the Muscular Dystrophy Association. These resources can provide the latest, accurate information, will answer many of your questions, and direct you to other local and national resources.
- Take charge of your care. Visit an ALSA-certified clinic for access to a health care team trained to work with people with ALS and their families. Physicians, other professionals on your health care team, and family can help with health care decisions, but remember that you are in charge throughout your illness. Don’t be shy about asking questions or communicating your preferences.
- Reach out to family and friends. Many people may want to help and not know how. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver.
- Join a support group. You don’t have to face this alone. You and your family can get a lot of support and useful information from others who have faced this disease. Contact your local chapter of The ALS Association as well as other agencies about support groups in your community.
- Stay active: Gentle exercises can help maintain muscle function and joint flexibility. However, as ALS progresses, energy conservation is important so that you have the energy needed for breathing and eating. Range of motion exercises, arm exercises, bicycling on a stationary bike, and walking are usually worthwhile, but check with your doctor first to make sure they are safe for you.
- Do everything you can for your health. Improve your diet, quit smoking, take up meditation to reduce stress, get plenty of sleep. Every little effort will help you, both physically and mentally.
- Do things you have always wanted to do. If you’re well enough and your doctor gives you the go-ahead, take that trip to Europe or the Grand Canyon. If your desires aren’t that adventurous, it doesn’t matter. Do what’s important to you whether it’s writing a book, volunteering at a food bank, going to a baseball game, taking a cooking class, or just spending time with the people you love.
As time goes on, you will find that you’ll need more support with everyday tasks. Rest assured, the help is available. BAYADA’s specially-trained nurses, therapists, and home health aides can help you continue to live at home with comfort, independence, and dignity.
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