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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

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • unnamed

    unnamed

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Chen Chun-Chin

    Chen Chun-Chin

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Lombana, Spain

    Lombana, Spain

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

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

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

  • Andrietta

    Andrietta

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

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

  • Ian Roberts

    Ian Roberts

  • Fabio Carvalho

    Fabio Carvalho

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Ali Var, Turkey

    Ali Var, Turkey

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

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

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

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

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

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

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

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