May 28, 2015
By the time a diagnosis of amyotrophic lateral sclerosis (ALS) is handed down from a physician, a battery of tests and procedures have been performed and other diseases ruled out, likely resulting in a whirlwind of emotions and concerns. While it’s true that ALS is life-changing, we at Continuum believe in the power of a positive outlook and focusing on ensuring the highest quality of life and independence possible for our clients with ALS and their loved ones. Here are some of our recommended strategies:
- People with muscle diseases, such as ALS, are capable thinkers even if they can’t communicate clearly. Discuss choices openly and make joint decisions regarding the person’s medical care.
- Ask if the person wants help before helping. Don’t take over tasks that still can be performed if the person is given adaptive devices and time.
- While sometimes it seems faster and easier for you to take over certain tasks, be patient and let the person complete the tasks that he or she can.
- Set up a computer and Internet access. Help locate and install adaptive technologies that enable computer use when movement is limited or absent.
- Computers provide entertainment and social interaction and enable the person with muscle disease to help with tasks such as paying bills, tracking down information, hiring services, and grocery shopping.
- Use adaptive devices. The use of assistive equipment like wheelchairs is a move toward independence, not away from it. Adaptive devices are available for many everyday tasks such as eating, opening jars and doors, buttoning or zipping up clothing, writing and taking a bath.
Most importantly, we impress upon those with ALS and their families that there’s no need to go it alone. With a five-person team assigned at no extra charge, including a primary caregiver, supervisor, scheduler, nurse and social worker, our clients are surrounded with a blanket of support and encouragement. If someone you love is struggling with an ALS diagnosis and you don’t know where to turn, contact the experienced and compassionate team at Continuum of St. Louis and St. Charles. We’ll provide a free in-home assessment at your convenience and share more strategies with you to make life easier and more fulfilling for your loved one.