Emotional Journey Resource Guide

People impacted by stroke often face dramatic changes to their lives and opportunities. Recovery from a stroke is simultaneously a physical and emotional journey. While many resources exist to support physical recovery, far fewer exist to support the sometimes even more challenging aspect of recovery — the emotional journey to rebuild your identity and a rewarding life.

The resources on this page are intended to provide stroke survivors and their carepartners with more information to help them navigate this critical aspect of recovery. This is not intended to be an all-inclusive list but a starting point.

General Emotional Wellness Post-Stroke

Emotional Journey in Stroke Recovery – Stroke Onward
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Emotional and Behavioral Effects of Stroke – American Stroke Association
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Emotional Changes After Stroke – Stroke Association (UK)
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Hope: The Stroke Recovery Guide – American Stroke Association
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Mental Health Professional Disciplines and Directories

Section Intro

Provider Directory – Psychology Today
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Provider Directory – American Psychological Association
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Provider Directory – American Board of Professional Psychology
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Therapist Directory – Open Path Collective
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Find a Rehabilitation Counselor – Commission on Rehabilitation Counselor Certification
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Support Resources

If you or someone else is experiencing symptoms of depression, anxiety, or emotional distress, it is important to let your healthcare providers know so that they can support you both physically and emotionally.

For immediate help, call or text 988 or use the chat on 988lifeline.org. The 988 Suicide & Crisis Lifeline is a US network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week.

Support Group Finder – American Stroke Association
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Virtual Support Group Listing – Brain Injury Association of America
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List of Support Groups on Facebook – Strokecast
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Service Animals (FAQ) – Americans with Disabilities Act
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Resilience and Living with Grief

On Grief and Grieving – Elisabeth Kübler-Ross, M.D. (book)
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Finding Meaning: The Sixth Stage of Grief – David Kessler (book)
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The Five Stages of Grief – Psycom
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Option B
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Coping With a Life Threatening Illness – Help Guide
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Terrible, Thanks for Asking (podcast)
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Rebuilding Identity

What is Identity? – Stroke Onward
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Identity Theft: Rediscovering Ourselves After Stroke – Debra Meyerson, PhD and Danny Zuckerman (book)
This book was written by our co-founder Debra Meyerson’s stroke recovery journey and explores the process of rebuilding identity after a trauma like stroke. It is an accessible, insightful, and hopeful look at the impact of stroke and aphasia on identity. The book website includes additional information and survivor stories.

Identity Theft Book Group Discussion Guides – Stroke Onward
Reading Identity Theft in a group setting is a great way to support ongoing emotional recovery and identity rebuilding. We created our guides to be utilized in a well-supported group setting like support groups or book clubs run by skilled facilitators, so please review the guides and share them with your group and group leader so that you may participate in these supportive conversations.

Our Columns and Blogs – Stroke Onward
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Exploring Loss of Identity Post-Stroke – Psychology Today
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The Emotional Journey to Recover from Stroke – Dr. Liz Hoover of Boston University with Stroke Onward co-founders Debra Meyerson and Steve Zuckerman (video)
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Aphasia

National Aphasia Association
The NAA is a non-profit dedicated to advocating for individuals with aphasia and their families. The website offers a range of information and resources, including an affiliate (resource) search feature.

Aphasia Access
AA is the professional organization for those providing care to people with aphasia such as speech-language pathologists, support group leaders, and those working and learning in academic programs. They offer an informative podcast, Aphasia Access Conversations, covering a variety of topics; we have included a few of our favorite episodes on our listing here.

Aphasia Institute
AI is a Canadian organization that provides direct service, research, education, and training. Check out their “Resources and Tools” section for access to a great variety of materials to help support communication and understanding. Of particular interest is their video and handout entitled “Talking to Your Family Member/Friend with Aphasia: Conversation Basics.”

Virtual Connections
Virtual Connections is a free program that offers daily Zoom calls for people with aphasia and their carepartners. Sessions focus on conversation, social connection, and quality of life. Sessions are hosted by speech pathologists, music therapists, rehab professionals, and aphasia experts. Topics include travel, hobbies, book clubs, food, holidays, music, and more.

Aphasia Simulations – Voices of Hope for Aphasia
Ever been curious what living with aphasia is like? These simulations are intended to provide a different perspective on and greater understanding of the issues encountered by a person with a language disorder.

Carepartners

Identity Theft: Rediscovering Ourselves After Stroke – Carepartner Discussion Guide – Stroke Onward
We created a carepartner specific version of our Identity Theft discussion guides as we know carepartners face unique challenges and need support. Two different versions of carepartner book support material are available: an abbreviated list of discussion prompts and more detailed Points for Reflection for each chapter.

Family Caregivers Resources – American Stroke Association
American Stroke Association offers a robust selection of materials to help support carepartners in caring for their stroke survivor and themselves.

Brain Injury Association of America
BIAA is a national non-profit in the US with numerous local/regional chapters; they provide awareness, research, treatment, and education with the goal of improving the quality of life for all people affected by brain injury. They offer a robust resource library for carepartners, including a guide specifically for Families and Caregivers.

National Aphasia Association
The NAA is a non-profit dedicated to advocating for individuals with aphasia and their families. They offer a great variety of resources and information; of note, check out their Caregiver Guide (available as a download from their website for free or from Amazon for print and ebook versions) and the Caregivers Bill of Rights.

Caregiver Action Network
CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. They offer a great stroke caregiver/carepartner resource called Stroke Caregiver GPS to help navigate life after stroke.

Family Caregiver Alliance
They provide services to family caregivers of adults with physical and cognitive impairments; services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. Check out the FCA CareNav service and Services By State features.

Carepartner Online Community – Caregiving.com
Caregiving.com is an online community for family caregivers. This community is created and run by people who are former, current, and future caregivers. They have developed caregiving tips, tools, and access to aging resources that help family members take care of themselves and their loved ones at every stage in the caregiving journey.

Today’s Caregiver
Caregiver.com provides information, support, and guidance for family and professional caregivers. They produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, caregiving books, the Fearless Caregiver Conferences, and their website.

Self Compassion
Self Compassion can be a helpful tool in balancing the challenges and stress that can come with being a carepartner. This article speaks specifically to the needs of carepartners and provides helpful information; the rest of the website also provides information and sessions to practice self-compassion.

Relationships and Intimacy

What is Intimacy in a Relationship? – VeryWellMind
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Intimacy After Stroke – American Stroke Association
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Sex and Intimate Relationships After Stroke – Stroke Association (UK)
This article covers a range of related topics and includes additional resources at the end (Note: many of the additional resources may be UK based).

How Does Having a Stroke Affect your Sex Life? – Patient
This article shares the story of a survivor and her journey to rebuild intimacy and connection in her marriage after her stroke.

Sex and Relationships – Different Strokes (UK)
Personal account of how a stroke survivor navigated sex after stroke; see links to more resources at end of article.

Relationships – Stroke Association (New Zealand)
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Parenting & Families

Parenting for Adults with TBI – Brain Injury Association of America
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Five Ways to Talk to Children about Brain Injury – Brainline
It can be challenging after a relative or friend experiences a stroke and it can be especially hard for children. Children can have a hard time understanding what has happened, how to cope, and how to help. This article offers ideas of how to explain brain injury to your child after one of their family members or friends is injured

Parenting after Brain Injury – Headway
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Parenting after TBI – Brainline
A carepartner shares her experience in parenting after her spouse experienced a traumatic brain injury.

Resources for Parenting After Brain Injury – Queensland Government (Australia)
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Sibling Leadership
This organization offers a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan.

Professional/Volunteer Life After Stroke

Return to Work – American Stroke Association
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Getting Back to Work After Stroke – Stroke Association (UK)
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Returning to work after brain injury – Headway, the brain injury association (UK)
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Five Things You Should Know about Returning to Work – Brain Injury Association of New York
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Volunteer Match
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Disability Employment Information – US Federal Government
This website provide detailed information about seeking a job with the Federal Government, including information about reasonable accomodations which can help the employee to meet the job requirements.

Adaptive Sports and Recreation

Directory of Adaptive Sports Organizations – Challenged Athletes Foundation
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Directory of Adaptive Sports Programs, Organizations, Equipment, and other Resources – National Center on Health, Physical Activity and Disability
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National Ability Center
NAC has adaptive programs to make recreation and outdoor adventures accessible to people of all abilities across the state of Utah. They offer a variety of programs from outdoor and indoor opportunities, military, camps, community, horseback riding, and more.

Move United
A national non-profit providing year-round sports and recreation opportunities to people with a wide range of disabilities offering more than 70 different adaptive sports. Their website has a comprehensive directory of recreation programs and opportunities.

Adaptive Sports: Limitless Opportunities (podcast)
Conversations around physical disabilities often focus on what a person can’t do. Adaptive sports turn that line of thought around by celebrating and exploring what people with disabilities can do. This podcast provides more details and the benefits of adaptive sports.

Meditation and Mindfulness

Apps / Websites with Free Content

Insight Timer
Offers the largest free library of more than 180,000 guided meditations by 17,000 teachers. Content is available from their website and smartphone apps.

Mindfulness Coach – US Department of Veterans Affairs (smartphone app)
The VA developed and released this app to help manage the symptoms of posttraumatic stress disorder (PTSD) that they frequently see in veterans. The app helps you learn about and begin to practice mindfulness.

Tara Brach, Ph.D.
Dr. Brach has a background in both Clinical Psychology and as a Buddhist Meditation Teacher. Her work focuses on emotional healing and spiritual awakening through mindful, loving awareness as well as the alleviation of suffering in the larger world by practicing compassion in action. Her website offers numerous free meditations and talks which are also available as podcasts in your favorite podcast app.

Apps / Websites with Fee-Based Content

Lori Gray, Ph.D.
Dr. Gray is a stroke survivor who provides a Mindfulness-Based Recovery from Stroke series, an 8-week set of classes tailored for those who have experienced a stroke and are seeking additional support in rehabilitation and living well in stroke recovery.

Love Your Brain
Research-backed meditation, yoga, and mindfulness courses developed for people with brain injuries and their loved ones.

Calm
Offers guided meditations, narrated Sleep Stories, and other health and meditation videos.

Headspace
Provides guided meditation resources through its website and smartphone app. They offer a variety of audio and video content as well as books and a Netflix three-part series. 

Expressive Therapies (music, art, story telling)

The Power of a Story: A Conversation with Katie Strong – Aphasia Access (podcast)
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Healing Strokes Art Therapy Class – Stanford University Healthcare
Healing Strokes is a Stanford student-led art therapy program that facilitates relaxation-based art therapy for stroke patients and their caregivers. All services are free and open to the community, regardless of where you receive care.

Poems in Speech
A free Zoom-based Poetry Program for people with aphasia, but anyone who loves poetry is welcome. Participants write their own poems (or those written by others), read them aloud, and tell the group about it. A great space to work on creativity and speech.

Sing Aphasia
Aphasia Choirs can be a fun way to connect with others and work on recovery. Sing Aphasia is a weekly choir rehearsal held on Zoom. They also have a listing of other choirs available across the globe.

Books, Podcasts, Movies

ADDITIONAL RESOURCES + FEEDBACK

These resources will be reviewed and updated from time to time. If you would like to submit a resource for consideration for this list, please email connect@strokeonward.org so that we may review it. We cannot guarantee that all submissions will be posted, but we do guarantee they will be appreciated.

The links included are current as of October 2023. Other than our own work, we do not specifically endorse any of the organizations, facilities, programs, or services listed.