Living with ALS: Staying active and staying safe

 

By Elissa Held Bradford, PT, PhD, NCS & Julia Henderson-Kalb, MS OTR/L

Staying active and staying safe are important goals to individuals and families living with an ALS diagnosis. As a person living with ALS you may wish to maintain your independence and participate in activities meaningful to you. This may be taking a trip, going to the park with your grand-kids or being able to go to the bathroom on your own. As a family member, you want to support your loved one’s independence but also his/her safety. As physical and occupational therapists, this goal is our priority too. A common challenge to achieving this goal is falls and concern about falling. This is often complicated by the fact that we may have different perspectives on what constitutes fall risk and independence. However, we can find a happy medium by communicating, planning, and making decisions together. In this short blog post we will discuss falls, fall risk, strategies to prevent falls, fall recovery, risk tolerance and even sense of self to help you stay active and stay safe.

Falls and fall risk

Falls are defined as an unexpected contact with any lower surface. Falls are common in ALS and may result in both minor and serious injury to both the physical and mental self. Physically, fall related deaths associated with head trauma in ALS have been reported at 1.7%.[1] Mentally, falls can decrease your self-confidence and cause you do curtail your daily activities because of concern of falling. Risk of falling in those with ALS has been reported for those who take longer (>14 seconds) to stand up from a chair and walk 3 meters (about 10 ft.) demonstrating weakness in the legs and impaired balance [2]. If you or your loved one has have fallen in the past 6 months, here are some strategies to consider implementing to stay active and stay safe.

Strategies to prevent falls

The Center for Disease Control and Prevention (CDC) recommends 4 key strategies to preventing falls and fall related injuries (https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html, Accessed 5.18.2017).

  1. Talk to your doctor

Talking to your doctor about your falls is important. They can help determine if there are other risk factors besides ALS that may be contributing to your falls, such as medications you may be taking. They can also refer you to see a physical or occupational therapist who can help develop an individualized plan to help you prevent falls. This is important because often your needs are different than others at risk for falls because of the progressive nature of ALS.

  1. Do strength and balance exercises

While strength and balance exercises may not be right for everyone with ALS depending on your fatigue and ability level, evidence in ALS shows moderate-intensity exercise is beneficial [3]. In the healthy older adult, strong evidence supports the role of exercise in fall prevention [4]. In ALS, proper exercise has a role to help you maintain your strength and be more effective in using the strength you do have.

  1. Have your eyes checked

Poor vision can impair your ability to detect and avoid obstacles. While vision loss is not a symptom of ALS, you may have impaired vision for other reasons. Make sure your eyeglass prescription is current.

  1. Make your home safer

This is important in ALS. Make sure your home is free of clutter, including the removal of throw rugs and pieces of furniture that might cause you to trip. Lighting should be bright enough to see your surroundings but not so bright that it impairs your vision. Items used frequently should be within reach. Rails on your steps or a ramp can make it easier to safely enter your home. Outside of the house, consider the environment: are there cracks in the sidewalk or roots/holes in the yard that could create a tripping hazard? Addressing these areas might be necessary.

These CDC strategies are important but for a person living with ALS there are few other key considerations.

  1. Be aware of your environment and yourself

Being aware and mindful of your movements and surroundings is key to making the right choice in the moment to stay active and stay safe. If you are feeling weak, take a rest, and avoid the rocky path.

  1. Trial use of equipment that helps you move

While using equipment can feel like giving in to ALS, it can also be liberating. Find the right fit of enough support when you need it to help balance and save energy, while at the same time building more activity into your day. We often say, ‘We care less if you walk there or roll there, we care more that you get there.’ Don’t let pride or uncertainty stop you from doing the things that bring your life meaning and joy. Equipment such as a walker or wheelchair can keep your world large.

  1. Know what to do in case you fall – fall recovery

Practice getting off the floor with the use of a chair or person to help you, putting your strong leg up first (http://www.webmd.com/healthy-aging/tc/how-to-get-up-safely-after-a-fall-topic-overview#2 ) Remember to check for injuries and ensure it is safe to get up after a fall. If you and your loved one struggle with rising from the floor, call for help from your local fire department or get a lift (Hoyer lift) that can help raise you from the floor.

 Risk tolerance

As we stated in the beginning, we may have different views on fall risk and independence. This is part of our risk tolerance. Risk tolerance is associated with perceived control. Initially if you live with ALS your risk tolerance may be higher because you have greater control on the day to day decisions impacting risk and you experience a greater impact by modifying how or if you do an activity. This can change as mobility becomes more limited and you may rely more on others to help you move. Family members and healthcare providers often have lower risk tolerance because they have less direct control, less direct impact, and may have seen more fall related injuries.  Remember to consider the other perspective and talk out the pros and cons of each decision to maximize both staying active and staying safe.

 Self-identification/Sense of self

Finally, who are you really and what matters most? What is often expressed to us by individuals living with ALS is how hard the loss is – not just physically but psychologically. One of those ways is how the loss of physical abilities in ALS may rob you of the very roles and activities that you use to define yourself as a person – your role as a caretaker or provider for instance, the one who cleaned the gutters, the one who took care of everyone else – your purpose in life. Part of what is hard about making decisions to stay active and stay safe is often a re-examination of your sense of self [5] and purpose. This goes deeper than most conversations about fall prevention but it can be an important one. We encourage you to have these reflections and conversations with yourself and your loved ones. Don’t shy from reaching out to a counselor or your spiritual leader if you are struggling. Your mental self is just as important as your physical self.

Staying active and staying safe is possible in ALS. By knowing your risk for falls, what you can do to reduce your risk, how others may perceive your risk and decisions and finally what is important to you, you and your family can make an informed choice each day that is right for you. Live your life with intent in the ways that matter most to you.

If you want more resources for physical or psychological help, please talk to your healthcare team or visit http://www.alsa-stl.org.

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] Gil J, Funalot B, Verschueren A, Danel-Brunaud V, Camu W, Vandenberghe N, Desnuelle C, Guy N, Camdessanche JP, Cintas P and others. Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study. Eur J Neurol 2008;15:1245-51.

[2] Montes J, Cheng B, Diamond B, Doorish C, Mitsumoto H, Gordon PH. The Timed Up and Go test: predicting falls in ALS. Amyotroph Lateral Scler 2007;8:292-5.

[3] Lui AJ, Byl NN. A systematic review of the effect of moderate intensity exercise on function and disease progression in amyotrophic lateral sclerosis. Journal of neurologic physical therapy : JNPT 2009;33:68-87.

[4] Gillespie L, Handoll H. Prevention of falls and fall-related injuries in older people. Inj Prev 2009;15:354-5.

[5] Charmaz K. The self as habit: The reconstruction of self in chronic illness. The Occupational Therapy Journal of Research 2002;22:315-415.

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