Living with ALS: Keep Your World Large

By Julia Henderson-Kalb, OTD OTR/L and Elissa Held Bradford, PT, PhD, NCS

What do you want to be able to do in a day? What activities are important to you? Everyone craves activity. It is part of our human experience (1). However, oftentimes when people are diagnosed with a disease like ALS, their world tends to shrink. They might isolate themselves, stay at home the majority of the time, and stop doing the things they love to do in exchange for activities that aren’t very meaningful to them, like watching TV for hours on end. As part of the therapy team at Saint Louis University’s ALS Certified Center of Excellence, one of our priorities is to help people diagnosed with ALS understand how to keep their world LARGE so that they can enjoy meaningful activity for as long as possible.

What causes the world to shrink for someone living with ALS? It might be physical. The loss of mobility due to muscle weakness, balance issues, or low endurance can make it more difficult to get from point A to point B. Getting into and out of a car or using public transportation can be a problem. Once you arrive at your destination, maneuvering around might be challenging for many reasons-if there is a great distance to cover, the terrain isn’t smooth, or there isn’t enough space to move comfortably, to name a few. Loss of fine motor coordination and gross motor coordination can make completing daily activities more complicated.

Other causes of isolation from the world might not be as physically obvious but are no less influential. People living with ALS often experience feelings of depression, loss of control, and loss of “sense of self” when they are having difficulty or no longer able to complete daily activities in the way they once did (2). A common example is no longer going out to eat with family and friends, despite enjoying and participating in this activity frequently previously. When searching out the reason for this change, it is often embarrassment related to challenges with eating such as dropping utensils or coughing a lot. Furthermore, the loss of ability to verbally communicate with others has been found to be linked to a decrease in quality of life (3).

So what can be done to overcome these barriers and keep your world LARGE for as long as possible? There are several strategies to be considered to stay engaged in meaningful activities.

1.    Exercise/Physical Activity

While it might not be right for everyone with ALS, studies have shown that moderate-intensity exercise helps to maintain the strength you already have. If a person with ALS is not active, greater weakness can occur on top of the weakness caused by the disease itself (4). Prior to starting an exercise program, it’s important to talk with your doctor. Referral to a physical therapist or occupational therapist (either at an outpatient clinic or through home health) will ensure that the exercise program is appropriate for your needs and will avoid further damage to your muscles.

2.    Activity/Environmental Analysis

Sometimes the difference between being able to complete a beloved activity or not is simply a matter of changing the approach to how you do it. Sitting rather than standing while cooking can reduce the amount of energy it takes. Moving gardening items to easily accessible locations and creating a raised garden bed can allow you to garden with decreased risk of falling or using too much energy on the task.  An environmental assessment by an occupational or physical therapist can make your home or office safer and more manageable. An occupational therapist can observe you completing a specific task and give you recommendations on how to make the task completion easier.

3.    Equipment

There is a piece of medical equipment for just about every issue you can think of, and that includes helping you complete your desired activities despite most physical limitations. Adaptive equipment can be used to help you do anything from brush your teeth to drive a car. Insurance covers a few items, but many have to be paid for out-of-pocket. It is recommended that you discuss equipment options with an occupational or physical therapist so that you get the items that best fit your needs. The therapist might have an idea of how to contain cost by equipment by using something you already have or can put together at home. If you do need to purchase equipment, it is a good idea to search the internet for best pricing options. The ALS Association also has a loan closet that might have the piece of equipment you want, which can reduce cost.

When walking becomes difficult due to decreased strength, balance, or endurance, mobility devices offer options for moving around the home or in the community in a safe and effective manner. Devices from straight canes to power wheelchairs can make it possible for you to get to where you need to go with a reduced risk of falls and decreased expenditure of energy. It is recommended that you see a physical therapist or occupational therapist in order to determine what type of device is best for your particular need.

4.    Delegation

When in doubt, delegate it out! ALS is a disease that allows you to only have so much energy in your energy bank every day, and once it is gone, it’s gone. Choose the activities that are most important to you and then ask other people to help you with the other tasks. If you really want to go to your grandson’s baseball game but know that you only have so much energy in the day, someone else might need to fold the laundry. If you want to go to lunch with friends, you might need help getting dressed and ready for the day. Consider your body and your energy level. In most cases, your friends and family want to help in any way they can. Use that help as it is offered so that you can do the things that matter most to you. Remember it takes a village. We all have different roles to play at different times in our lives.

5.    Focus on What Matters Most

ALS is a chronic, progressive disease. It changes the way a person is able to move, talk, eat, and even breathe. But it cannot take away who you are as a person and what you mean to those who love you. What matters most is different for every individual. But knowing what that is and really focusing on it can free person from worrying about other things. For example, if time spent with friends and family is what matters most to you, slurring your speech in front of them might seem less important than not seeing them at all. If being out in nature is most important to you, then does it really matter if you walk or ride in a power chair to get there? Letting go of what you can’t do and allowing yourself to focus on doing what you love regardless of your limitations can create a greater sense of control, identity, and appreciation of life (5).

Elissa Held Bradford, and Julia Henderson-Kalb are part of the multidisciplinary care team at the ALS Certified Center of Excellence at Saint Louis University Hospital.


References:

(1) Boyt Schell, B.A., Gillen, G., & Scaffa, M.E. (2014). Willard and Spackman’s occupational therapy (12th ed) Lippincott, Williams, & Wilkins: Philadelphia, PA.

(2) Radomski, M.V. & Trombly Latham, C.A. (2014). Occupational therapy for physical dysfunction (7th ed). Lippincott, Williams, & Wilkins: Philadelphia, PA.

(3) Felgoise, S.H., Zaccheo, V., Duff, J., & Simmons, Z. (2016). Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17, 179–183.

(4) Bello-Haas, V.D. & Florence, J.M. (2013). Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease (review). The Cochrane Collaboration: Johne Wiley & Sons, Ltd. doi: 10.1002/14651858

(5) Foley, G., O’Mahony, P., & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 8(3), 164-169.

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