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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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Technology

Advances in technology, specifically for health and disease, have skyrocketed over the last few decades. Research and development for technology have made daily living activities and healthcare more accessible for people living with ALS/MND. However, it is important to note that not all technology is accessible to everyone and, at times, may be a barrier for certain individuals.Technological devices and equipment are constantly being developed to help with various symptoms for people living with ALS/MND. Common symptoms such as muscle weakness, loss of speech, and fatigue can make it difficult or impossible for a person with ALS/MND to achieve daily living activities. There are various options for individuals for technological aid for mobility, speech and communication, environmental controls, and access to other technology such as computers and phones. Overall, these devices are designed to improve a person’s quality of life throughout ALS/MND disease progression.There are various input modality technologies that can benefit PALS when they can no longer perform the traditional input such as using their fingers to type or speak for voice command. The various types of input can include:

  • Infrared Sensing: Use of light transmission
  • Electromyography: Using body movements such as facial expressions
  • Oculography: Eye movements used similarly to a cursor
  • Electroencephalography: Using brain signals

This list is by no means exhaustive but gives insight into the range of technological advances for people living with ALS/MND. The multidisciplinary healthcare team can be considered a resource for navigating certain technologies and finding an option that best suits individuals based on their needs.

Technology in the form of telehealth can also benefit individuals with ALS/MND. Telehealth allows for people with ALS/MND to have access to healthcare in a virtual format. This can reduce the stress and work of physical, face-to-face appointments and allow appointments to be made more easily. They may also increase accessibility for people living with ALS/MND who live in rural areas or areas where accessible public transportation is limited. Telehealth advancements are an ongoing development and are constantly being improved.

Numerous apps and at-home-technologies are available that allow people living with ALS/MND to test, track, document, and upload various aspects of their health. These apps can help people living with ALS/MND with many aspects of their lives. The use of this technology has also made for advancements in telehealth and telemedicine in which technology is used for ongoing disease progression assessments and documentation for people living with ALS/MND. These have allowed healthcare professionals to safely monitor their patients’ disease progression and can improve communication between healthcare professionals, carers, and people living with ALS/MND.

Clinical trials have also been able to make use of technology for similar purposes. This has allowed for ongoing care for people living with ALS/MND, in some cases has increased healthcare access for individuals, and also greater enrollment for clinical trials.

In addition, as new technology arises, it becomes abundantly clear that there are also barriers for certain individuals. Costs and financing for technological programs can create a divide. Age and adjustments to using technology can also prevent people living with ALS/MND from accessing or benefitting from certain advances. Discussions with the multidisciplinary healthcare team can provide more information on training for technological devices, insurance coverage in certain regions. They can also answer any other questions individuals may have.

For more information on technology, refer to the resources provided below.

Click on the icon below to visit our playlist of videos related to Technology.

The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Technology.

Free or Low Cost Apps

The MND Association (MNDA) has gathered a list of various apps available to people living with ALS/MND. Various apps for topics such as health, appointments, nutrition, and communication are provided.

https://www.mndassociation.org/support-and-information/information-resources/free-or-low-cost-apps/

Language: English
Subject Areas: Technology, Apps, For People with ALS/MND, For Caregivers, For Multidisciplinary Healthcare Team

Software Tools

The ALS Liga Belgium provides a list of different software applications that can make technology and everyday tasks more accessible for people living with ALS/MND. These include speech and communication and computer use.

https://www.als.be/en/software-tools

Language: French, German, English, Dutch
Subject Areas: Technology, Software, For People with ALS/MND, For Caregivers, For Multidisciplinary Healthcare Team

Smart Home Technology and ALS

This is a blog post written and posted by the ALS Association (ALSA). In this blog, Smart Home technologies are discussed pertaining to aids for people living with ALS/MND.

https://www.als.org/blog/smart-home-technology-and-als

Language: English
Subject Area: Technology, For People with ALS/MND, For Caregivers

Telehealth, ALS/MND, and COVID-19

This is a podcast by Connecting ALS produced by the ALS Association (ALSA). This podcast discusses the advances in telehealth, the benefits of telehealth, and concerns and issues for people with ALS/MND and access to telehealth. Note that this resource is concerning advancements in telehealth as a result of the COVID-19 pandemic. Any views or opinions presented in this podcast are solely those of the authors. They do not necessarily represent those of The ALS Association.

https://www.connectingals.org/episodes/telehealth-and-the-evolution-of-clinical-care-during-covid-19?_ga=2.72525072.2045315913.1625135551-567082341.1625135551

Language: English
Subject Area: Telehealth and Telemedicine, Technology, For Multidisciplinary Healthcare Team, For People with ALS/MND, For Caregivers

How Telemedicine is Intergrating into ALS Multidisciplinary Care

In this interview report with Dr. James Berry, provided by the ALS Association (ALSA), telemedicine is discussed. Dr. James Berry explains the benefits and uses for telemedicine and also discusses the ALS Clinic Telemedicine for People living with ALS.

https://www.als.org/blog/how-telemedicine-integrating-als-multidisciplinary-care

Language: English
Subject Area: Telehealth and Telemedicine, Technology, For Multidisciplinary Healthcare Team For People with ALS/MND, For Caregivers

Developing Technologies to Help People with ALS Live Better Lives

The ALS Association (ALSA) provides a blog post that outlines different technological advancements that are a part of the Managing ALS Research Program. A link within the blog leads to a podcast by Connecting ALS (produced by ALSA) that discusses technologies for people living with ALS/MND in more detail.

https://www.als.org/blog/als-association-furthers-commitment-develop-technologies-help-people-als-live-better

Language: English
Subject Area: Technology, Research, For People with ALS/MND, For Multidisciplinary Healthcare Team

ALS Assistive Technology Blog

Alisa Brownlee, ATP, CAPS’ blog offers recent articles and web information on ALS, assistive technology, augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS. Email abrownlee@alsa-national.org. Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of The ALS Association.

http://alsassistivetechnology.blogspot.com

Language: English
Subject areas: Equipment, Communications and Assistive Technology

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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

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • IMG_1211

    IMG_1211

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

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

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

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

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

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

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

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

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

  • Mauril Belanger

    Mauril Belanger

  • Liam Dwyer, England

    Liam Dwyer, England

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Tison, USA

    Tison, USA

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Brian Parsons

    Brian Parsons

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Art Eggert, USA

    Art Eggert, USA

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

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

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

  • Ian Roberts

    Ian Roberts

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Fabio Carvalho

    Fabio Carvalho

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Wilfried Leusing

    Wilfried Leusing

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

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

  • Marcel R. Wernard, Diagnosed 2016,  ALS Patients Connected,  The Netherlands

    Marcel R. Wernard, Diagnosed 2016, ALS Patients Connected, The Netherlands

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Willi Klein

    Willi Klein

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Bayley, Australia

    Bayley, Australia

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

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

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