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International Alliance of ALS/MND Associations

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  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
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    • Drugs in Development
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    • Approved Drugs
      • Nuedexta
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      • Rozebalamin/Methylcobalamin
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
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Mental Health Support

A person living with ALS/MND may be challenged emotionally at all stages of the disease. Therefore, a multidisciplinary healthcare team includes support for mental health for people living with ALS/MND and their families. Mental health support throughout the progression of the disease can help a person cope with emotions that can be difficult to manage. Multiple healthcare professionals are available for mental health support for people living with ALS/MND and their families. The multidisciplinary healthcare team that can provide mental health support include:

  • General Practitioner
  • Counsellor
  • Psychologist
  • Psychiatrist
  • Social worker
  • Neuropsychologist
  • Occupational therapist
  • Spiritual or faith leader/counsellor
  • Complementary therapists

This multidisciplinary healthcare team can help a person living with ALS/MND cope with emotions regarding various aspects of their lives. Coping and coming to terms with a diagnosis, relationships, both familial and intimate, religious or spiritual faith, and managing symptoms of ALS/MND as they progress all impact a person living with ALS/MND.

Individuals with ALS/MND can also access their multidisciplinary healthcare team for treatment and management for anxiety, depression, and other mental health disorders. Medications are available for mental health in people living with ALS/MND.

In addition, the multidisciplinary healthcare team is available to help treat and manage potential symptoms of ALS/MND that affect cognition and behaviour, such as frontal temporal dementia symptoms.

Living with ALS/MND does not mean a person is alone. Support is always available.

For more information on mental health support, refer to the resources provided below.

Click on the icon below to visit our playlist of videos related to Mental Health Support.

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

Psychological Treatment Program

Psychological support services are provided by a group of ALS trained, dedicated Psychologists and Registered Clinical Counsellors who volunteer their time to provide much-needed therapy and counselling to people affected by ALS. For people without extended health benefits, this service can be provided Pro Bono.

https://www.alsbc.ca/programs-services/psychological-treatment-program/

Language: English
Subject Areas: Mental Health Support, For People with ALS/MND, For Caregivers

What Can the Social Worker Do For You?

This resource discusses the social worker’s role as part of the multidisciplinary healthcare team for families affected by ALS/MND and for people living with ALS/MND. In addition, the type of support that a social worker can provide is discussed.

https://www.als-centrum.nl/kennisplatform/wat-doet-de-maatschappelijk-werker/

Language: Dutch, English
Subject Areas: Social Work, Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND, For Caregivers

What Does the Psychologist Do?

The ALS Centrum Nederlands discusses the role of a psychologist as part of the multidisciplinary healthcare team in this resource. In addition, information on the support a psychologist can provide to the patient, the caregiver and family of the person living with ALS/MND, and their healthcare team is discussed.

https://www.als-centrum.nl/kennisplatform/wat-doet-de-psycholoog/

Language: Dutch
Subject Areas: Mental Health Support, Psychologist, Multidisciplinary Healthcare Team, For People with ALS/MND, For Caregivers

Emotional Support for People With or Affected by ALS/MND

Information on supporting and managing emotions for people living with ALS/MND is provided in this guide. The guide, created by the MND Association (MNDA), outlines the multidisciplinary healthcare team that can help support mental health for a person living with ALS/MND. Tips and strategies for managing difficult emotions and emotional lability are also provided.

https://www.mndassociation.org/app/uploads/2020/07/Emotional-and-psychological-support.pdf

Language: English
Subject Areas: Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND

Coping with ALS/MND

This is a brief resource for people living with ALS/MND to help identify signs that they may need mental health support. The ALS Association (ALSA) discusses these signs and the treatment and support options available.

https://www.als.org/navigating-als/coping-with-als

Language: English
Subject Areas: Mental Health Support, For People with ALS/MND

Spiritual Guidance with ALS

The ALS Centrum Nederlands provides information about the spiritual counsellor’s role in supporting mental health and treatment for people living with ALS/MND. The impacts of spiritual guidance are also discussed and outlined in this resource.

https://www.als-centrum.nl/kennisplatform/geestelijke-begeleiding-voor-mensen-met-als/

Language: Dutch
Subject Areas: Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND

FYI: ALS, Cognitive Impairment, & Dementia

This resource provides detailed information for the multidisciplinary healthcare team about the effects of ALS/MND on cognition and frontal temporal dementia. In addition, information for care and management for people living with ALS/MND with these symptoms are discussed. The ALS Association (ALSA) also provides input on communicating these symptoms to people living with ALS/MND.

https://www.als.org/navigating-als/resources/fyi-als-cognitive-impairment-dementia

Language: English
Subject Areas: Mental Health, Dementia, Multidisciplinary Healthcare Team, For Healthcare Professionals

Changes in Thinking and Emotional Lability

The ALS Association provides this resource with information on symptoms of ALS/MND related to cognition, dementia, and depression. This information is intended for people living with ALS/MND and caregivers. People with ALS/MND and caregivers can find out more about these symptoms and how to manage and cope with them.

https://www.als.org/navigating-als/coping-with-als/changes-thinking-emotional-lability

Language: English
Subject Areas: Mental Health, Dementia, For People with ALS/MND, For 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

  • Willi Klein

    Willi Klein

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Hollister

    Hollister
    hollister

  • Christian Bär, Germany

    Christian Bär, Germany

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

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

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

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

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

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

  • Fabio Correia

    Fabio Correia

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • IMG_2658

    IMG_2658

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

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Liam Dwyer, England

    Liam Dwyer, England

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

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

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

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Nicholas (Nic) Bowman, MND Association of South Africa,  Diagnosed 2016,  Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

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

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

  • Bayley, Australia

    Bayley, Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

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

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

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

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

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Tison, USA

    Tison, USA

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Chen Chun-Chin

    Chen Chun-Chin

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

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

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