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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

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Margreth Burger-Saile, Diagnosed 2011,  ALS Schweiz,  Switzerland

    Margreth Burger-Saile, Diagnosed 2011, ALS Schweiz, Switzerland

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Dr Shelly Hoover

    Dr Shelly Hoover

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

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

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Shay Rishoni

    Shay Rishoni

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Liam Dwyer, England

    Liam Dwyer, England

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • 727747090571358167

    727747090571358167

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Hollister

    Hollister
    hollister

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Daniel Hare

    Daniel Hare

  • Lombana, Spain

    Lombana, Spain

  • Peng Yi-Wen

    Peng Yi-Wen

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

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