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International Alliance of ALS/MND Associations

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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

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Cath Muir

    Cath Muir
    Cath

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

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

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

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Jean

    Jean
    jean

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • 83

    83

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Lombana, Spain

    Lombana, Spain

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Tison, USA

    Tison, USA

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

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

  • Peng Yi-Wen

    Peng Yi-Wen

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • Hollister

    Hollister
    hollister

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

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

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

  • Dick Dayton, USA

    Dick Dayton, USA

  • Ali Var, Turkey

    Ali Var, Turkey

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • unnamed

    unnamed

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Jon Newsome, USA

    Jon Newsome, USA

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • David Bishop

    David Bishop

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

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

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

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

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

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