Finding a Way—Occupational Therapists Are the Problem-Solvers of the Multi-Discipline ALS Treatment Team

There are times, for whatever reason, when the English language can be confounding. The examples of everywhere. We drive on a parkway and park on a driveway. This can apply to professions as well. Take for example, occupational therapy. That has to do with work, right? After all, “occupation” is right there in the name. And that’s correct, but only to an extent, because the role of an occupational therapist is that and so much more. In broad terms, occupational therapy focuses on a person’s ability to perform activities of daily living—to live life to its fullest. For people with ALS, an occupational therapist (or OT) is there to help patients maintain their independence for as long as possible as well as to improve their quality of life. The work an OT does can take on many forms as we’ll soon see, but in some ways their role can be summed up by this quote from the movie Patch Adams: “You treat a disease: you win, you lose. You treat a person, I guarantee you win—no matter what the outcome.”

April is Occupational Therapy Month, and what better way to mark the occasion than to hear from someone who knows the role of an OT inside and out: our Associate Director of Care Services Melissa Smith, who just so happens to be a licensed OT.

By Melissa Smith MSOT, OTR/L,

April is Occupational Therapy Month and I am honored to write about the profession that I absolutely love. I went into this profession wanting to make a difference in people’s lives. I loved the idea of teaching and the medical field and OT is the best of both worlds. OT is a very broad discipline offering specializations such as assistive technology practitioner, driving and community mobility, environmental modification, hand therapy, low vision, mental health, physical rehabilitation, school systems, advocacy, and much, much more.

OTs work in a variety of settings including inpatient/outpatient hospitals, schools, community practice, private practice, home health, and nursing homes. I found my niche in the non-traditional role of OT working in the non-profit community-based setting.

I began my career right after graduating Washington University School of Medicine Program in Occupational Therapy. I was blessed that my mentor Dr. David Gray was looking for someone to fill a research position in his lab. I was already familiar with the expectations as I completed my fieldwork rotation at the Enabling Mobility Center (EMC). I met with people who used mobility devices such as canes, walkers, scooters, manual and power wheelchairs and got to interview them on participating in all life areas. I also assessed their ability to operate their device by taking them through a mobility skills course. I enjoyed getting to know people and how their environment played a huge role in their independence.

The EMC was a joint collaboration between Washington University Program in Occupational Therapy and Paraquad Independent Living Center. In 2005 they received a grant to create an accessible gym for people with mobility limitations. This was such a great need in the community. It was wonderful to have on-boarding sessions with potential participants and hear their goals for their health and wellness. It was also amazing to watch the smile on their faces when they worked out for the first time with an adapted piece of equipment. For 14 years I managed and expanded an accessible health and wellness program in the city. I loved meeting new people and working with them to set realistic goals for their future. As an OT this was such a fun occupation. I on-boarded, set goals with participants, worked 1:1 with them, taught modified exercise classes, coordinated with other community partners, and so many other non-OT but very necessary skills.

In 2019 I was offered the opportunity to join The ALS Association St. Louis Regional Chapter as the Associate Director of Care Services. My OT heart was so happy to find a purpose here. My skills have prepared me well for all of my duties at the chapter. I manage various aspects of the department and also work directly with people with ALS and their families. We set up home visits (now virtual visits during COVID) with people to meet with them and introduce them to the many services we have to offer. I will typically ask about their home environment and how they navigate around. This gives me an idea of where people are and allows me to brainstorm some things (equipment, modifications) that they may need to consider down the road. We also talk about activities of daily living (ADLs), and how they navigate through the day.

The ALS Association has several loan closets throughout our service territory, with one being in our St. Louis office. I will often brainstorm with colleagues to find the best piece of equipment for a person. I have gone into homes to install some equipment and to educate the caregiver on how to use equipment safely. Sometimes a piece of equipment does not work and we have to problem solve on what the best solution is for a person. We are hopeful that someday in the future we will be able to hold trainings for new caregivers to help them become confident in the skills needed to care for their loved ones.

I also hold the role of clinic liaison to the VA ALS Clinic at John Cochran, which The ALS Association has deemed a Recognized Treatment Center. When the clinic operated in person before changes due to COVID, I would check in with our veterans and their families and have them fill out assessments to qualify for services with the chapter. I would assist them in traveling to the different members of the multi-disciplinary team throughout the hospital. Due to the pandemic, we have switched to virtual visits with our veterans. Although I am not able to attend the clinic in person, the veterans are still able to visit with the neurologist, nurse, social worker, speech therapist, dietitian, physical therapist, occupational therapist, Paralyzed Veterans of America representative, psychologist, and representative from Hill Rom for breathing equipment. Often I will lead the conversation by reviewing the veteran’s status and completing the ALSFRS: ALS Functional Rating Scale with them, which monitors progression of disability in people with ALS. Pat Niewoehner is the OT on our team at the VA. Here is what she had to say about our profession:

“As an OT at the VA I work in several different areas including driver rehabilitation and mental health. Working with the ALS veterans and their families is one of the most enjoyable parts of my job! We have an extraordinary St. Louis VA ALS clinic team! We work together on all aspects of care. As an OT, I look at the person’s ability to perform activities of daily living and how their environment can be modified with the use of adapted equipment or structurally to preserve their independence, conserve energy and lessen the burden on their caregiver. I also provide education on VA benefits and help prepare the veteran for transitioning to utilizing modified ways of doing things. I am honored to be able to serve the ALS veteran population!

   ̴ Pat Niewoehner, OTR/L, CDRS, VA St. Louis Health Care System

In addition to these duties, I keep up with the day-to-day tasks in and out of the office. I am involved in outcome measures of the Care Services program, Caregiver Appreciation Month, creating procedures for the department. I frequently assist with grant writing, strategic planning and keeping the budget for our loan closet and equipment repairs. I collaborate with other departments to facilitate our mission and goal in working with people with ALS.

Occupational Therapists have a huge role in making sure the person with ALS is supported in his/her environment through the use of mobility devices, communication devices, mental health support, safe transfer techniques, and energy conservation techniques. I am honored to be a part of people’s lives as they navigate through this disease.

Thank you Melissa for sharing some insights into the role of OTs in the care of people with ALS, and thank you to all the OTs in the ALS community who work tirelessly to make a difference in the lives of people with ALS. ALS does not stop, but as we’ve learned, neither do you.

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