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International Alliance of ALS/MND Associations

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    • Fundamental Rights for People with ALS/MND and Caregivers
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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

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

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

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Art Eggert, USA

    Art Eggert, USA

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

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

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

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

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Ali Var, Turkey

    Ali Var, Turkey

  • Mauril Belanger

    Mauril Belanger

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

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

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

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

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

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Mark Miller

    Mark Miller

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Daniel Hare

    Daniel Hare

  • Willi Klein

    Willi Klein

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • 727747090571358167

    727747090571358167

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

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

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

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Liam Dwyer, England

    Liam Dwyer, England

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Michael Lee, Australia

    Michael Lee, Australia

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

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