Maintaining independence while living with ALS with the help of occupational therapy

Amyotrophic Lateral Sclerosis (ALS) attacks motor neurons that control different muscles of the body. Those living with ALS gradually lose strength in their muscles and become weaker, which can limit movement and the ability to live an independent life.^[i]

Ensuring that people living with ALS maximize their independence and control in their daily lives for as long as possible requires the support of a multidisciplinary care team, in which Occupational Therapists (OTs) play an integral role.

Krista MacMillan, an OT at the Stan Cassidy Centre for Rehabilitation Centre in Fredricton, New Brunswick, explains that occupational therapy is instrumental in empowering ALS patients to maintain their independence and provide the support they need to navigate the numerous challenges ALS presents.

A lot of individuals think occupational therapy is assisting with return to work and ergonomic assessments, and that is a very, very small piece of the work we do.

According to Krista, occupational therapy is a multifaceted discipline that addresses the physical, cognitive, and emotional needs of ALS patients as they navigate the progressive challenges of the disease. It can span from assisting with mobility challenges to facilitating daily activities, such as bathing and eating, and also seeks to address emotional and mental well-being.

OTs also ensure clients have access to digital content through assistive technology as well as alternative ways to access information and carry out everyday activities such as shopping, paying bills or attending virtual healthcare appointments. This access to smart devices and technology can also facilitate control of one’s home, such as lights, TVs or fans, or to communicate with friends and family.

One of the key pillars of occupational therapy is its personalized approach, which recognizes the unique needs and preferences of each individual. Krista emphasizes tailoring interventions to meet the specific requirements of her clients which optimizes the outcomes, especially with ALS patients where the disease progresses differently for each individual.

Moreover, OTs play a crucial role in educating both patients and their caregivers about managing the various aspects of ALS. By providing practical strategies for self-care, instrumental activities of daily living such as driving, meal preparation, and community access, OTs empower ALS patients to navigate the challenges of the disease with resilience and adaptability. OTs also provide strategies for sleep, fatigue management, evaluate and provide strategies for any cognitive challenges, and promote emotional well-being.

In addition to traditional interventions, Krista embraces innovation and creativity in addressing the unique challenges of living with ALS. Whether it is designing custom adaptive aids or exploring alternative leisure activities, OTs play a vital role in enhancing the overall quality of life for individuals living with ALS.

The impact of occupational therapy extends beyond the individual living with ALS to their caregivers and families. By offering guidance on care needs, caregiver support, and equipment to promote safety and independence, OTs help alleviate the burden on caregivers and foster a supportive environment for all involved.

“We’re looking at the big picture, which includes family and caregivers, not just the client,” Krista explains.

However, to maximize the benefits of occupational therapy for ALS patients, early intervention is critical. “A lot of individuals may feel that some of the changes they’re having are minor and they’re not important enough,” Krista says, sharing that persons in the early stages of their diagnosis often say things like, “I didn’t want to bother you. This is such a small difficulty for me when you’re probably working with others who have a lot more difficulties.”

By initiating contact with an OT early in the diagnosis process, individuals can access timely support and resources to address their evolving needs. Regular check-ins and assessments allow for ongoing adjustments to treatment plans, ensuring that interventions remain aligned with the progression of the disease.

OTs often help with setting up a patient’s home in a manner that allows them to continue to carry out daily activities for as long as possible as well as ordering different equipment and adaptive aids they will need as the disease progresses. The equipment can take a while to secure, but initiating the process early on ensures that patients have access to the tools they need, when they need it, rather than waiting until it becomes a necessity to begin that process.

Despite the profound benefits of occupational therapy, access to these services remains limited in some regions across Canada. Krista explains that OT services are not available at all ALS clinics, and part of her role in the ALS community is advocating on the importance of OT services and ensuring quality of care for all individuals living with ALS.

In some cases, persons living with ALS may need to conduct their own research to identify available OT services in their area, considering both public and private options. Exploring community-based services is also beneficial, or contact your provincial association of occupational therapy. Krista recommends the following resources for support with ALS and provide information on Occupational Therapy:

• • Canadian Association of Occupational Therapy
  • ALS Society of Canada or your provincial ALS association
  • ALS Association
  • Les Turner ALS Foundation
  • National Institute of Neurological Disorders and Stroke

Additional Resources

For those in need of assistive devices and equipment, ALS Canada offers an Equipment Program which provides access to basic and essential assistive equipment through the following options:

• • Loan equipment program
  • Funding assistance programs for some leased and rented equipment
  • Flexible funding program for small bathroom equipment

To find out more about the program and see if you are eligible, please review the Program Overview.

Provincial ALS associations also provide equipment and resources to support those with ALS within their province.

Resource for Occupational Therapists

As part of the ongoing efforts to maximize care by Occupational Therapists for ALS patients across Canada, Krista and other OTs at the Stan Cassidy Centre for Rehabilitation Centre have developed a Guide for Occupational Therapists in both English and French [link guide]. This guide helps educate on the care needs and equipment needed for those living with ALS.