Vol. 26 • Issue 15
• Page 24
Reflections on Practice
Amyotrophic lateral sclerosis (ALS), known commonly as Lou Gehrig's disease, is a progressively degenerative motor neuron disease with no known cause or cure.1,2,4Persons with ALS experience a multitude of symptoms that affect their ability to function physically, psychologically and socially.
Physically, ALS is characterized by muscle weakness;5atrophy of the structures of the thorax, trunk and extremities;2,4difficulty swallowing; dysarthria; and decreased endurance and dexterity.5Physical weakness, marked by distal to proximal loss,5progressively impedes a person's ability to complete most activities of daily living (ADL), instrumental ADL, work,6and educational tasks, as well as psychosocial engagement. Persons with ALS may also experience cognitive decline and psychological co-morbidities such as depression.4
My initial experience with ALS occurred when a family member who was very close to my heart was diagnosed in January 2007. Debbie, my aunt, died less than a year and half later; occupational therapy was not recommended by her doctor until two months prior to her death.
After Debbie passed away, I was admitted to an OT program. As I gained an understanding of occupational therapy, I began to research ALS from an OT viewpoint as often as I could. Despite the impact of the disease on patients' functional abilities, however, I found a dearth of OT research about the treatment of persons with ALS; further, existing literature offers little inclusion of the concept of spirituality.
In the few research articles available, recommended OT treatment for clients with ALS includes interventions aimed at maximizing client independence.2This may include environmental modification, energy conservation,2,5assistive technology, patient/family/caregiver education,2task adaptation, psychological services and assisting with the development and maintenance of the client's support systems.4
Further, occupational therapists should assist the client in developing a symptom management plan with a focus on pain control2,4and spasticity management.2The evidence is inconclusive regarding the effectiveness of exercise.4,5
Despite the seemingly obvious advantages of occupational therapy services, Lewis and Rushanan2assert that many physicians do not recognize the benefits of OT in improving the quality of life for persons with ALS and that there is little research to support the inclusion of OT services.
Until more research is available, I hope that my aunt's experience might inspire OT students, practitioners and educators to advocate for OT services and research for ALS. I share part of her story here, along with the occupational areas relevant to her experiences.
The first time I noticed something was "going on" with Debbie was the day before Christmas in 2006. I was at her house and she asked me to help her wrap a few presents. I was confused as to why Debbie had barely any of the presents wrapped. She was making a dip when I noticed her picking up the pan with two hands instead of one and that she was having a hard time maintaining her grasp.
A few weeks later, at the baptism of Debbie's first grandson, she relayed to the family that she had been diagnosed with ALS.
Debbie was a mother, a wife, a grandmother, a daughter, an aunt and a kindergarten teacher. She was active, enthusiastic and dynamic. However, a few months after living with ALS, Debbie declined functionally and transformed from having complete control of her motor function to needing maximum assistance from her husband and children.
Community mobility, toilet hygiene, religious observance: I was working at a restaurant around this time, and my aunt and family came to visit me. During their visit my aunt mentioned she needed to use the restroom, and I volunteered to assist her. Debbie braced herself on my arm and we made our way there. Once we entered the restroom, she was excited there was a railing to allow her to transfer on and off the toilet.
As we returned to the table, Debbie continued to hold my arm for support; the muscle atrophy she was experiencing had taken its toll on her ambulation independence. She looked me in the eyes and said, "I read the Bible and the only thing that will save me is God." Then her lower extremity musculature fatigued and she collapsed. Debbie did not have the strength to get back up and I used all my strength to lift her.
I have never in my life felt so helpless and scared about what the future would bring. I went home thinking about how my aunt's life was being cut short and wondering what the future would hold for me as her niece and a future OT student. It occurred to me that OT could bring meaning and hope to those for whom remediation of functional loss is not an option.
Family, leisure: The Easter after Debbie was diagnosed, my family was all sitting at the table coloring eggs. Debbie was having a difficult time maintaining grasp on such things as pencils, glasses, etc. Nonetheless, she was always determined to be involved in family events.
Debbie colored her egg yellow, one of her favorite colors, and then grasped the pen with the invisible ink. I was the only one who saw her write, "I love my family." I was struck by the fact that she did not show anyone. It was truly an act that exemplified personal meaning; a moment of reflection. She wrote this message for herself and despite what she was going through, she was still considering those around her and her love for those people.
Later, I would reflect on this event and think about how difficult it must have been for Debbie to have those who she loved so much be responsible for so many of her occupations.
Work, feeding, social participation: Debbie's courage throughout her journey was incredible and a testament to her ability to identify occupations and contexts which were most meaningful for her. She attended every wedding, graduation and holiday event despite losing almost all independence.
She also continued to teach her kindergarten class beyond the point when she could no longer walk. She taught her students until the children could no longer hear her speak when she would ask them to quiet down. During lunch periods, the school cooks would bring her tray because she could no longer hold it herself. Family, friends and co-workers made many environmental adaptations so Debbie could continue teaching as long as possible; however, none were implemented by an occupational therapist.
Toilet hygiene, personal hygiene, grooming, care of others and family: Eventually, Debbie lost her ability to complete all transfers related to toileting tasks. Debbie's son, mother or husband would pick her up and place her on the toilet. This is when my heart sank; it was humiliating for her to require her loved ones to help her use the restroom.
Eventually, she was also unable to maintain her independence in grooming and required assistance. Debbie's husband went to the beauty shop where she had gone for 40 years. He learned the proper way to style Debbie's hair and how she liked to have her makeup applied. Other family members also pitched in. We all knew Debbie found meaning in caring for her appearance and were happy to assist her. However, I believe that an occupational therapist should have been involved to assist Debbie and my family in addressing her self-care needs. This may have enhanced her feelings of self-worth and allowed all of us to enjoy other occupations that held greater meaning for Debbie and our family unit.
Religious observance: Entwined throughout her meaningful occupations was Debbie's spirituality. She relied on faith to assist her through her journey and did not miss a church service, sometimes attending twice a day. Her husband went to church every day during lunch; together they used faith to endure their struggle.
How wonderful it would have been if there had been an occupational therapist available to assist my aunt and her husband in addressing community mobility issues including access to the church, to encourage my aunt's discussion of spirituality with her priest and family, and to nurture Debbie's quest for meaning.
Feeding, dressing: At the end of her life, Debbie was receiving nutrition through a feeding tube. Debbie was quite fragile and had not received education on using the feeding tube. It overflowed onto her favorite sweater and she was unable to clean herself. This may seem like an unimportant event; however, at that moment, her favorite sweater meant a great deal to her and she was horrified. With proper family education on feeding tubes and how to adapt if such an issue was to occur, my aunt's feelings of despair could have been prevented.
My mother was with Debbie at a doctor's appointment when OT was first recommended. Less than two months later, Debbie passed away. There were a number of OT interventions that could have been implemented throughout the course of Debbie's illness to enhance the quality of life and meaningfulness she experienced during this time. For example, implementation of the Canadian Model of Occupational Performance, with focus on spirituality and meaning,7may have provided an appropriate foundation from which to develop treatment planning for Debbie.
Advocacy and Spirituality
The scant amount of scholarly literature on the effectiveness of occupational therapy for patients with ALS belies the benefits OT can provide this population. OTs need to advocate for clients with ALS, educate physicians about OT services for this population, pursue an ALS research agenda, and provide clients (and families) with sense of meaning through engagement in meaningful occupations, including spirituality if it is important to the client. Spirituality must be considered when working with clients with fatal diseases. It has been linked closely with occupational engagement12and improved quality of life.13
References available at www.advanceweb.com/OT or upon request.
Nicole J. Nelson, OTS, is student in the master's program at the University of North Dakota School of Medicine & Health Sciences; she will graduate in 2011. Her interests include a number of OT practice areas including adult rehabilitation. Anne M. Haskins, PhD, OTR/L, is an assistant professor at the university.