Associate Professor, Department of Rehabilitation Medicine
University of Washington, Seattle
Mobility challenges can interfere with every aspect of everyday life. This can be true for people who are just beginning to experience difficulty with balance and walking, for those using walking aids such as canes or walkers, and for those who use wheeled mobility to get around. Strategies to improve or maintain the ability to move around are certainly important. However, there are multiple other small changes people with MS can put into place that can have a big impact. This is one place where thinking small and taking it one step at a time can be effective.
A budget approach allows you to take charge of how you spend your energy and spend it on what matters most. Think about it in the same way as budgeting money. Begin by learning how to estimate the energy cost of different activities by noticing how tired you feel during and after those things that you do regularly. Keep in mind that fatigue is not just a result of spending physical energy. There can be cognitive and/or emotional energy costs that are just as important to consider.
Next, evaluate how much energy you have available. Then decide where you want to spend that energy –what activities do you consider to be the most essential, have the most value to you, or have a high priority for another reason? Consider if you can reduce energy costs by doing things in a different way (for example, shopping online). Finally, you should plan your day or week so you spend your energy on the things that matter most to you. Be proactive and decide what you want to drop, delegate to others, ask for help with, or move to another day or time to avoid “going in the red.”
In MS, the amount of energy available can vary from day to day, or even within a day, for reasons that are not always obvious or predictable. Be prepared for these unexpected fluctuations by keeping some energy on reserve in your “energy bank” and having a back-up plan that focuses on your highest priority activities.
It can be tempting to rush to finish something before you get tired or to try to do just one more thing. However, with MS, it is critical to stop and rest before you start feeling tired. This may mean taking a “micro-break,” stopping to sit for a few minutes before continuing with an activity, or scheduling a regular nap or quiet time into your day. This can be hard to do when you feel like you have enough energy to keep going. However, not taking a rest before feeling tired can backfire and make you more fatigued in the long run.
You can use less energy by positioning objects and materials so they’re within easy reach. Store the objects you use most often in heights between shoulders and knees to minimize reaching and bending. Taking care in how you position yourself in relation to what you are doing can also reduce energy expenditure. Use the support of furniture (for example, arm rests) when you can and make sure you face the task directly. This uses less energy than working from a strained or awkward position. You can also sit on a chair or stool instead of standing to do some tasks. This includes tasks that are fairly quick, like brushing your teeth in the morning, to those that take longer, such as washing the dishes. Put chairs or stools in those locations ahead of time to make it more likely that you will use them.
Set up activity stations in your home to save steps and energy by putting the objects and materials used for a task together in one place. Activity stations can be for any routine task—getting dressed, making sandwiches, leaving the house, or washing the car. Start with something you do often. Get help as needed to move everything you use for that task to the place where it makes sense to do the bulk of the work. Then identify the things in that area that are not needed. Move the unneeded objects to where they’ll be used and either toss or give away the things you don’t use on a regular basis. This approach can reduce not just your physical energy expenditure, but also how much thinking is needed and emotional stress.
Slide objects along countertops instead of lifting and carrying or use a utility cart to transport objects. Or, save steps by using a transitional “staging area” when moving multiple items from one location to another, for example, when unloading the dishwasher or setting the table. Replace heavier objects and tools with ones that are more lightweight. Use tools and devices that increase leverage, such as a long-handled jar opener, or increase friction, such as a rubber gripper. Use electrical appliances and power tools stored within easy reach for both big and small jobs.
It can be surprising how quickly clutter can accumulate. Clutter makes it more difficult to move around and can also make it more difficult to think clearly. Clearing out clutter is one way to give you enough room to get around safely. Moving furniture and electrical and phone cords out of the way is also helpful. Aim for clear, wide pathways with enough space for you and your mobility aid to move forward, change direction, and turn freely. If a narrow doorway is getting in your way, widen it by installing off-set hinges. Most hardware and home supply stores carry this inexpensive solution.
Make walking and standing surfaces safe so there is nothing to trip over, slip on, or tip over. Flooring should be level with carpet edges that are taped or tacked down. Get rid of loose rugs. If that is not an option, anchor them securely to the floor with tacks or tape. Door thresholds should be low—level with the floor is best. If needed, a mini threshold ramp can be installed.
The goal here is sufficient lighting without glare. Aim for even lighting within and between rooms. Turn on the lights before you go into a room. If there isn’t a light switch within reach, move a lamp close to the entry or use night lights to make it easier to see where you’re going. It’s especially important to have enough lighting in areas such as entry ways, hallways, and stairs and places, like the bathroom, where you might be navigating at night.
Adequate support can reduce the risk of falls. Install stair handrails on both sides of stairs so you can hold on while going up and coming down. Use heavier furniture without caster wheels so it will stay put when you sit down or stand up, or position it against a wall to keep it in place. Transfer poles that go between the floor and ceiling are another option when there isn’t a place for a grab bar.
Falls in the bathroom often result in injury. This is not surprising given the hard, slippery surfaces; frequent need to move quickly; low heights; need to step over fixtures; and the possibility of overheating. A raised toilet seat can make it easier to get up and down from the toilet or an over-the-toilet commode chair can provide additional support. Grab bars can make it safer to use the toilet and tub or shower, while non-skid mats or decals in the tub or shower can make those floors less slippery. A shower chair or a bench that goes over the edge of the tub, along with a hand-held shower nozzle, can make it possible to take a shower in a seated position when standing is more risky.
Many of the changes described here are relatively minor in scope and can be done with a “do-it-yourself” approach. However, when faced with major remodeling and decisions about permanent changes, people with MS have found it helpful to “expect the best and prepare for the worst.” This avoids having to go back and make costly changes later. Avoid person-specific solutions when possible and use universal design principles instead. These allow you to put solutions into place that work for everyone—you, your family, and guests in your home, as well as future buyers should you decide to move.
Time, energy, physical, and financial challenges can make it difficult to know where to begin. For most people, making or reviewing an energy management budget is a good first step. Then, look at the changes that give you the “biggest bang for your buck” and put those in place with the help of family, friends, and others in your support network. If you need more assistance with knowing what’s best for you or how to go about making changes, a referral to an occupational therapist for additional guidance and specific suggestions may be helpful. While mobility challenges can seem overwhelming, taking one step at a time can make a difference.