Principles of energy conservation
Energy conservation depends on the elimination of unnecessary steps in an activity. In ALS, muscle fatigue becomes a problem any time you make greater demands than your muscles can handle. By understanding the cause of your fatigue, and incorporating energy-conservation techniques into daily life, you’ll be able to live more independently and do more for yourself with less fatigue.
But you also should be aware that frequent fatigue, headaches and lethargy may indicate weakness of breathing muscles. See Chapter 5 of this guide for more information about respiratory issues and ALS. Fatigue also can have emotional roots; depression symptoms or stress are common in ALS. Help is available for these challenges, so don’t hesitate to talk to your doctor about these issues.
The following are tips for avoiding fatigue, and modifying or streamlining simple tasks so that you can conserve energy.
Avoid unnecessary motion
Arrange your work center
Use proper working conditions
Household tasks, errands and other routine activities comprise a large part of daily life. As fatigue becomes more of a problem, modification of ordinary tasks is necessary. By prioritizing and simplifying routine tasks you can conserve your energy for more enjoyable activities.
Cooking and meal preparation
Cleaning and housework
Discuss with your employer in advance the need to redefine your duties or put you in a position with fewer physical demands.
Simple modification of daily self-care tasks can significantly reduce energy expenditure while helping you to maintain your independence.
Review the basic principles listed in Principles of Energy Conservation above. The following techniques can help you save energy and can make assisting you more efficient and less tiring for your caregiver.
Bathing and showering
Getting into bed
Getting out of bed
Other helpful hints
|Spotlight on Care Circles|
Care circles have made a big difference in the lives of many people affected by ALS.
Described in the how-to book Share the Care by Cappy Capossela and Sheila Warnock, care circles are groups of volunteers organized to do daily, weekly or occasional tasks such as shopping, preparing meals, lawn mowing, making phone calls about insurance issues, or even something as simple as becoming an e-mail buddy.
At the heart of this concept is that a care circle is designed so that tasks are appropriate for the volunteer, and no volunteer takes on too much.
One of the hardest parts of a care circle is getting started, which means asking for help. A simple first step is to create a list of things you need help with, and a list of people or groups that you think might be willing to volunteer (beginning with those who’ve asked, “Is there anything I can do to help?”). Another tip: Download the Spotlight: Checklist for Getting Help, which helps keep your list of volunteers organized for activities such as chores, grocery shopping, respite and housework.
MDA’s myMuscleTeam is a free online service that helps MDA families receive strength from a personally created community — their “Muscle Team” of family and friends. Users create private, secure myMuscleTeam Web pages that enable them to post journal entries to keep friends and loved ones updated, and to utilize a “care coordination calendar” where they turn general offers of help into scheduled assistance.
The EZ-Use Kitchen, Quest, January-March 2012
Keeping It Clean: Toothbrushing Tips, MDA/ALS Newsmagazine, January-February 2011
Accessible Workspaces: Make your workspace work for you, Quest, October-December 2009
Think Mobile, MDA/ALS Newsmagazine, September-October 2009
Fighting Off Fatigue, MDA/ALS Newsmagazine, April 2009
Arming You with Tips for Living with Arm Weakness, MDA/ALS Newsmagazine, February 2006
Fatigue, Quest, January-February 2005
The Practical Chef’s Cooking Tips, in Design Your Kitchen to Fit You, Quest, September-October 2003
Share the Care Circles: Keeping the Circle Unbroken, MDA/ALS Newsmagazine, July 2003
Share the Care Circles: Who’s Going to Do What? MDA/ALS Newsmagazine, June 2003
Share the Care Circles: Asking for Help Can Be the Hardest Part, MDA/ALS Newsmagazine, May 2003
ALS Care. Suggestions and practical tools for coping with daily issues faced by people with ALS, their families and health care providers.
myMuscleTeam. MDA's online community helps individuals and caregivers recruit and coordinate in-home help.
Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill, by Cappy Capossela and Sheila Warnock, Simon and Schuster, 2004