Occupational Therapy and ALS: How It Can Work in the Telehealth World

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Elizabeth Tatum
Elizabeth Tatum

Social distancing and stay-at-home orders in response to the COVID-19 pandemic are upending many facets of daily life. In recognition of Occupational Therapy Month, we checked in on ways this critical piece of multidisciplinary care can continue during quarantine and innovative ways telehealth can be adopted by occupational therapists.

Occupational therapists are key members of the mobility team for a person living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.

Elizabeth Tatum, occupational therapist at the Outpatient Rehabilitation Department and the Phil Smith ALS Clinic at Holy Cross Hospital in Florida shared her thoughts and experiences she’s had with her patients and families and insights about how her job has changed because of COVID-19.

Can you explain what occupational therapy is as a practice?

Occupational therapy aims to help people successfully complete the functions of daily life and to live their life to the fullest. We assess a person holistically to identify the deficits limiting them from engaging in the things that they want and need to do on a daily basis. These things include self-care and daily living, work, leisure tasks, and community engagement. Whether it’s adapting a person’s environment, helping a person manage or regain skills after injury, or adapting a task and or type of equipment used. Occupational therapy can look different across the settings as we can be found in hospitals, schools, outpatient clinics, nursing homes, and in the community. Regardless of what setting an occupational therapist is found in, the goal is always to optimize and promote an improved quality of life.

Although no two cases are alike, what does a typical appointment look like with a person living with ALS? What are you typically assessing and/or looking at and how do you provide assistance? 

When working with my ALS patients I begin with assessing range of motion, strength, fine motor skills, energy levels, and the ability to complete their activities of daily living (dressing, bathing, grooming, feeding, toileting, and mobility). Post evaluation, the first session typically focuses on initiating a good home exercise program and education on energy conservation and how to implement techniques into their daily life. In this session I also have my patient rate their activities of daily living from the hardest to the easiest. I then focus on one activity of daily living per session beginning with the activity rated the hardest by the patient. We analyze the activity, identify the areas of difficulty, and figure out what they need to be successful with the activity. This may be to incorporate the use of adaptive equipment or use of adaptive techniques or positions. Each ALS patient presents differently and there is no protocol. Understanding the correlation between the patient’s deficits and their success level with a certain activity is the foundation for being able to adapt, create, and improve quality of life for these patients.

How has the COVID-19 pandemic changed your everyday practice treating people living with ALS? 

The coronavirus has completely changed how I treat my ALS patients as they are now all being seen via telehealth. Due to the compromised immune and respiratory systems of these patients, we are currently not seeing anyone in the clinic. The biggest challenge and change I have come across is the ability to assess and treat without being able to touch. Finding creative ways to assess strength, range of motion, and function are different but not impossible!

Can you still help people living with ALS via telehealth? And if so, what does that look like? In your opinion, do you think this virus will change the future of telehealth in this country? If so, how?

Yes, I can definitely see the future of telehealth for all medical professions changing after this experience. We, especially in the therapy world, are being given a rare opportunity to trial telehealth and see which diagnoses and techniques can and cannot be treated virtually. I can already see how telehealth is truly beneficial for a diagnosis such as ALS. Due to the nature and progression of the disease, it is often very hard on both the patient and the caregiver to get to and from a number of medical appointments. Being available to the patient and their caregiver in the comfort of their home is helpful in more ways than one. They save time, conserve energy, limit the amount of exposure to germs, and are able to show how they function in their everyday environment. I do feel that an initial assessment in person is necessary and most beneficial, but I am seeing how follow-up virtual visits are very effective. The ability to be able to observe a patient completing their daily activities in their everyday environment and help them to adapt with the tools that they have around them is a valuable aspect that you cannot get in an outpatient clinic.

How long have you been an occupational therapist and what made you choose the practice as a career?

I have been practicing occupational therapy for a little over 2 years. When I was growing up helping at a church event, a family friend told me that I would be a great physical therapist one day. That idea was engrained into my mind and when it was time to get my bachelor’s degree, that was the path I started down. My senior year we were assigned to internship sites for a semester. Due to the high volume of students wanting to do physical therapy they were unable to place me with a physical therapist. Instead they placed me with an occupational therapist, and I was devastated to say the least. By the end of my first week my eyes were opened, and my future was changed. The ability to be a “MacGyver”– to create, to adapt, and to help others — was totally me! I truly feel this was my calling and the journey I was meant to be on.

Elizabeth Tatum is an Occupational Therapist at the Outpatient Rehabilitation Department and the Phil Smith ALS Clinic at Holy Cross Hospital, recently certified as a Center of Excellence with The ALS Association. Elizabeth graduated from Clemson University in 2013 with a Bachelor of Science in Health Sciences and from The University of Saint Augustine for Health Sciences in 2017 with a master’s in occupational therapy.