When living with ALS, everyday activities like bathing, dressing, grooming, and eating can use a lot of energy. The physical and occupational therapists at your ALS Clinic or home health agency can suggest strategies and recommend assistive devices that can help you conserve energy so you can continue to do the things that are most important to you.

​Physical and occupational therapists often use the analogy that you begin each day with a full tank of gas (or charged battery), and that you will need to decide how you want to spend that energy. Understanding that your energy level may be different each day, it can be helpful to begin by reflecting on your priorities. How do you want to spend your energy? What is most important to you?

If you notice that certain daily activities like dressing​ or grooming are taking longer or requiring more energy, you can ask your caregiver for assistance. If you find that some nonessential activities require a significant amount of energy, you can choose to not do them at all, or ask for assistance. For the things that you really want to do, you can try to find more efficient ways to do them. The idea is to work smarter, not harder.

​In addition to prioritizing, it is important to be mindful of your typical energy levels when planning future activities. Try to be realistic about how much you can do in a day without overexerting yourself. Try to schedule time for naps and rest so you can recharge between activities as well as between busy days.

Energy Conservation Strategies and Devices

One way that you can save energy every day is to sit instead of stand when doing things like dressing, bathing, and grooming. Once seated, position yourself so you can rest your arms or elbows on the table, desk, or counter for support. If you are able to sit on a seat where your hips are higher than your knees, it will require less effort to move between seated and standing positions.

If you notice that you’re getting more tired when walking, you can use walking aids for greater support and endurance. For longer distances, you can save energy by using manual or transport wheelchairs.

You can also conserve energy by developing systems and thinking ahead about what you will need to carry or move around your home. To limit unnecessary trips up and down stairs, for example, you could put things in a basket that will need to go up or down at a later time. It can also be helpful to keep the main things you will need throughout the day in a bag or pouch on your walker or wheelchair.

​Transferring between your bed, wheelchair, chairs, recliner, and other locations can use up a lot of your energy. Your physical and occupational therapists can teach you transfer strategies and recommend transfer devices that can help you move from place to place more efficiently and safely. Also, when possible, try to think ahead so you can avoid any unnecessary transfers.

​If your neck muscles are getting weaker and you are finding it hard to hold your head up, a neck brace, or cervical collar, can help support the weight of your head. You can also try positioning yourself in a way that takes the load off your neck muscles, such as tilting back in a lift chair recliner while using a U-shaped travel pillow to support your head.

​You can also put the things you use most often in places that are easily accessible to you. This may mean reorganizing drawers and shelves and leaving some things out on the bathroom counter.

Rejuvenating with Breathing Support

As the disease progresses and the muscles around your diaphragm weaken, you may notice that you have more trouble breathing at night while lying down. Using a bilevel machine (commonly called a BiPAP) at night can help you breathe better, sleep better, and have more energy the following day. You can also use a bilevel (BiPAP) machine intermittently during the day to rejuvenate and give your diaphragm a rest.

​Your respiratory therapist should be monitoring your breathing and recommending specific respiratory devices as you need them.

Finding Ways to Recharge

It is also important to find ways to manage and boost your energy level. In addition to recharging by taking naps and breaks and using a bilevel machine, getting a good night’s sleep can improve your mood and give you more energy for the day.

Making sure you are consuming enough calories every day, which can be challenging for people living with ALS, is very important. Your dietitian, speech language pathologist, and occupational therapist can recommend strategies and devices that can help your body get the calories and energy it needs.

In general, whenever you feel the need to recharge, remember that it is okay to reschedule or change plans, modify your activities, delegate tasks, and ask for assistance.