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International Alliance of ALS/MND Associations

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Occupational Therapy and Activities of Daily Living

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.

Click on the icon below to visit our playlist of videos related to Occupational Therapy and Activities of Daily Living.

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.

https://www.alsmndalliance.org/wp-content/uploads/2020/01/0900-W1-Sarah-Solomon-International-MND-Symposium-OT-presentation-SOLOMON-2019.pdf

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

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

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Care services

  • Genetic Counselling & Testing
  • Mental Health Support
  • Nursing and Symptom Management
  • Nutrition and Swallowing
  • Occupational Therapy and Activities of Daily Living
  • Physiotherapy and Mobility
  • Respiratory Care
  • Speech Therapy and Communication
  • Support for Family & Caregivers
  • Technology

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Art Eggert, USA

    Art Eggert, USA

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Jon Newsome, USA

    Jon Newsome, USA

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Cath Muir

    Cath Muir
    Cath

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Tison, USA

    Tison, USA

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Liam Dwyer, England

    Liam Dwyer, England

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Daniel Hare

    Daniel Hare

  • Bayley, Australia

    Bayley, Australia

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Steve

    Steve

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

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