People living with ALS/MND may experience muscle weakness, pain, fatigue, or other symptoms that make everyday activities difficult. The ability to accomplish tasks people often consider “simple” or even automatic can be impacted by the progression of ALS/MND.
The symptoms of ALS/MND can impact a range of tasks such as grooming, dressing, sleeping, driving, and eating and drinking. Many tools, devices, and equipment are available for people living with ALS/MND to make these tasks easier. Ramps, lifts, wheelchairs, specialized utensils, and even clothing options can aid or support daily activities.
To maintain their quality of life, people living with ALS/MND can work together with their multidisciplinary healthcare team to manage difficulties with everyday tasks. The occupational therapist is the main point of contact for overcoming certain challenges a person may have with daily tasks. However, this team can also include the general practitioner, a physiotherapist, technical advisors, and a social worker.
As people living with ALS/MND have their individual needs, preferences, problems, and living arrangements, the occupational therapist works with the person to find appropriate solutions. Occupational therapists can support people with mobility, household tasks, self-care activities, home modification, work and occupations, socializing, communication, and other everyday activities.
For more information on the occupational therapist’s role and support for daily living, refer to the resources provided below.
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The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Occupational Therapy and Activities of Daily Living.
What Does the Occupational Therapist Do?
The ALS Centrum Nederlands provides information on the occupational therapist’s role and how they aim to help people with ALS/MND.
https://www.als-centrum.nl/kennisplatform/wat-doet-de-ergotherapeut/
Language: Dutch
Subject Areas: Occupational Therapy, For People with ALS/MND, For Caregivers, Multidisciplinary Healthcare Team
Occupational Therapy
The many applications and benefits of occupational therapy are discussed in this resource provided by the ALS Liga België. This page outlines the goals and outcomes of occupational therapy and discusses the occupational therapist’s role. People can find out more about the process of occupational therapy appointments within this resource. Common tools and aids that a person living with ALS/MND may use with occupational therapy are also discussed.
https://als.be/en/Occupational-therapy
Language: French, English, Dutch, German
Subject Areas: Occupational Therapy, Occupational Therapists, Multidisciplinary Healthcare Team, For People with ALS/MND
Occupational Therapy and MND
This resource for Occupational Therapists contains the PDF slide deck from a past presentation by Sarah Solomon from the International Alliance of ALS/MND Associations. This presentation discusses considerations for Occupational Therapists when working with people living with ALS/MND and tools and resources that can be beneficial.
Language: English
Subject Areas: Occupational Therapists, Tools for Daily Living, For Occupational Therapists, For Healthcare Providers
Daily Living Activities
This resource provides tips and strategies to accomplish everyday activities for people living with ALS/MND. The ALS Association (ALSA) covers various topics such as eating, transportation, and getting dressed. Within this resource is a downloadable manual to be used in conjunction with an occupational therapist or other healthcare providers. The manual provides detailed strategies for making everyday tasks easier. It also describes how people living with ALS/MND can use different equipment and tools to support daily living.
https://www.als.org/navigating-als/living-with-als/daily-living-activities
Language: English
Subject Areas: Daily Living, Daily Activities, For People with ALS, For Caregivers
Everyday Activities
The Irish MND Association (iMNDA) developed a detailed resource with information on everyday activities for people living with ALS/MND and caregivers. This resource introduces the multidisciplinary team that individuals may work with, including the occupational therapist, and their roles in supporting everyday activities. There is also information on strategies and tools that people living with ALS/MND and caregivers can use to make daily living and activities accessible.
http://imnda.ie/wp-content/uploads/2014/03/5-EVERYDAY-ACTIVITIES.pdf
Language: English
Subject Areas: Occupational Therapist, Multidisciplinary Healthcare Team, Daily Living, Physical Activities, For People with ALS/MND, For Caregivers
Oral Care
The ALS/MND Patients Association in the Netherlands, shares some useful tips and recommendations on how to manage oral care in people living with ALS/MND.
https://www.alspatientenvereniging.nl/zorg/mondzorg-bij-mensen-met-als-psma-en-pls/
Language: Dutch (webpage can be translated into other languages with Google translate tool)
Subject areas: Oral care, Daily Living, For People with ALS/MND and Caregivers
This personal scoping review explores oral health in ALS/MND through the dual lens of Dr. Maurits K.A. van Selms — a dental researcher and ALS/MND patient — highlighting care, research, and education priorities.
https://www.alspatientenvereniging.nl/zorg/mondzorg-bij-mensen-met-als-psma-en-pls/
Language: English
Subject areas: Oral care, Daily Living, For People with ALS/MND and Caregivers
Work and MND
The MNDA provides a thorough resource detailing the different aspects of ALS/MND diagnoses and their impacts on a person’s work. This resource details how ALS/MND may impact employment, how and when to decide to leave work, and how to have these discussions with your employer.
https://www.mndassociation.org/app/uploads/2015/07/10E-Work-and-MND.pdf
Language: English
Subject Areas: For People with ALS, For Caregivers, Daily Living, Work
Resources/Tools
This page from the ALS Centrum Nederlands supplies many resources for people with ALS/MND and caregivers. These resources include information on strategies and tools to aid daily living, such as in the home, work, and society.
https://www.als-centrum.nl/themas/hulpmiddelen/bewegen-hulpmiddelen-bij-als/
Language: Dutch
Subject Areas: Occupational Therapy, Activities, Tools for Daily Living, For People with ALS/MND, For Caregivers
Products to Aid in Daily Living
A list of products and links to more information on each item listed is provided by ALSA. Products listed may help in daily activities (i.e. eating, transportation) for people living with ALS/MND.
https://www.als.org/navigating-als/living-with-als/therapies-care/assistive-technology
Language: English
Subject Areas: Daily Activities, Daily Living, Tools for Daily Living, For People with ALS, For Caregivers
ALS & Activities of Daily Living
While no two people with ALS are alike or will progress the same way, there is a great deal of collective knowledge and wisdom available from your ALS Care Team, people living with ALS and caregivers. Our intention is to provide you with information that you may need today and tomorrow. You may not need some of the devices in this guide. Reading all the sections at one time can be overwhelming. We highly recommend that you focus on the information that pertains to your present circumstances. We created this information guide to help you navigate all the changes that may occur due to ALS. In this guide you will find information on devices that can help you complete your daily activities. Daily activities include eating and drinking, dressing, toileting, bathing, oral hygiene, grooming and recreation and sleep. This guide provides tips to make daily living a little easier, if you should need extra help.
https://lesturnerals.org/wp-content/uploads/2021/10/Daily-Living-Guide-Final.pdf
Language: English
Subject Areas: Care and Support Guides and Manuals, Equipment, Communications and Assistive Technology, For Clinicians, For Families and Caregivers