Emotional Journey Resource Guide – DRAFT

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.

**NOTE – this resource is still a work in progress and we need your help.**
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General Emotional Wellness Post-Stroke

Emotional Journey in Stroke Recovery – Stroke Onward
We created this guide to introduce emotional recovery after a stroke and how to support yourself or someone else during this journey to rebuild.

Emotional and Behavioral Effects of Stroke – American Stroke Association
This section of Stroke.org provides more details about the emotional and behavioral changes after stroke and provides recommendations for finding solutions.

Emotional Changes After Stroke – Stroke Association (UK)
This site shares detailed information about the connections between stroke and mental health. Topics including anxiety, grief, anger, and more are covered.

Hope: The Stroke Recovery Guide – American Stroke Association
HOPE: The Stroke Recovery Guide provides valuable information in four sections: Helpful information, self-advocacy, preventing another stroke, movement and exercise.

Mental Health Professional Disciplines and Directories

Provider Directory – Psychology Today
A detailed list of therapists and psychiatrists in the United States by state and major cities.

Provider Directory – American Psychological Association
A detailed list of psychologists who are members of the American Psychological Association in the United States by state and major cities.

Provider Directory – American Board of Professional Psychology
This directory lists all current ABPP board certified psychologists.

Therapist Directory – Open Path Collective
A detailed list of therapists in the United States with affordable prices. Open Path Collective is a nonprofit that serves clients who lack health insurance or whose health insurance doesn’t provide adequate mental health benefits.

Find a Rehabilitation Counselor – Commission on Rehabilitation Counselor Certification
Rehabilitation counselors help people with physical, mental, developmental, or emotional disabilities live independently. This site lists certified rehab counselors by type and location.

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
Looking for a support group to assist in your recovery? ASA’s group finder can help. This site keeps an ongoing record of groups across the country – search for yours today by zip code.

Virtual Support Group Listing – Brain Injury Association of America
BIAA offers a listing of “brain injury support groups.” Stroke is an acquired brain injury and stroke survivors are welcomed in brain injury support groups. This listing details available virtual support groups.

Service Animals (FAQ) – Americans with Disabilities Act
Information on how to acquire a service animal or get an animal trained to become a service animal is in the link above. Many people with disabilities use a service animal in order to fully participate in everyday life.

Resilience and Living with Grief

On Grief and Grieving – Elisabeth Kübler-Ross, M.D. (book)
While there is no singular model for the emotional journey to recover after a stroke, many people find it helpful to consider the Five Stages of Grief included in this book.

Finding Meaning: The Sixth Stage of Grief – David Kessler (book)
Finding Meaning is a helpful addition to grief literature and a vital guide to healing from loss. This is an inspiring read for anyone looking to journey away from suffering, through loss, and towards meaning.

The Five Stages of Grief – Psycom
This is a helpful, short article on the Five Stages of Grief.

Option B
In a world of platitudes like “Everything happens for a reason” and “What doesn’t kill you makes you stronger,” Option B talks openly and honestly about hardship—from grief to infertility to mental health struggles—so that you and the people you care about can feel less alone. And they share tools and practices to help you navigate these challenges in your day-to-day life.

Coping With a Life Threatening Illness – Help Guide
This guide discusses the impact of receiving a diagnosis and how an illness may affect your mental health. It also covers the ways to cope with emotional distress and preserve your quality of life.

Terrible, Thanks for Asking (podcast)
“Terrible, Thanks For Asking” is a podcast by author Nora McInerny that shares the stories of real people and the challenges that we experience in life. It’s sometimes sad, sometimes funny, and almost always both. Although it’s not specific to stroke, there are many connections that can be to the stroke recovery journey.

Rebuilding Identity

What is Identity? – Stroke Onward
Identity is our sense of self, how we define who we are. In this section of our Emotional Journey in Stroke Recovery, we discuss the key factors of identity.

Identity Theft: Rediscovering Ourselves After Stroke – Debra Meyerson, PhD and Danny Zuckerman (book)
This book, written by our co-founder Debra Meyerson and her son Danny, shares her stroke recovery journey, along with that of more than a dozen of other survivors, 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
We write columns several times a year for the American Stroke Association that cover a variety of topics relating to emotional recovery and rebuilding identity. Find all our columns here as well as some older blogs.

Exploring Loss of Identity Post-Stroke – Psychology Today
This blog explores the question – “What to do when I’m not sure who I am now?” Struggling to grapple with your identity after a stroke? This blog may help you to start the journey of self-discovery.

The Emotional Journey to Recover from Stroke – Dr. Liz Hoover of Boston University with Stroke Onward co-founders Debra Meyerson and Steve Zuckerman (video)
In this excerpt from a September 2020 interview by Dr. Liz Hoover of Boston University, Stroke Onward co-founders Debra Meyerson and Steve Zuckerman discuss the emotional journey to recover from stroke and define the role of identity in this process.

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:

Aphasia Recovery Connection
ARC is a non-profit offering programs and resources for people with aphasia and their carepartners. They also manage the largest online support group with over 13,000 members on Facebook.

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 from Lingraphica and Aphasia Recovery Connection 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
The 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
This article covers the different types of intimacy and how you can create more of it in your relationship. Intimacy often changes after a partner has experienced a stroke – discover how intimacy can still be part of your relationship in this new chapter of life.

Intimacy After Stroke – American Stroke Association
Stroke can cause big changes in the lives of couples who are sexually active — in body and in mind. This resource from the American Stroke Association discusses common issues and tips on overcoming them.

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)
A 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)
The Stroke Association of New Zealand’s guide describes how inner qualities that make a person a unique individual are not necessarily lost with stroke, but their expression (verbal or through body language) may be altered or limited by the consequences of stroke. The guide also shares how family members, friends, or spouses can support the loved one who has had a stroke.

Parenting & Families

Parenting for Adults with TBI – Brain Injury Association of America
Parenting can be challenging for anyone. The challenges that happen after traumatic brain injury (TBI) and stroke can make parenting even more difficult. This brochure talks about the challenges you might encounter and tips to help.

Five Ways to Talk to Children about Brain Injury – Brainline
Children can have a hard time understanding what has happened, how to cope, and how to help after a stroke happens to a loved one. This article offers ideas of how to explain brain injury to your child.

Parenting after Brain Injury – Headway
This booklet has been written to help those parents who have had a brain injury understand how their injury has affected them in their role as a parent.

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)
These fact sheets have been developed to assist parents with a brain injury and their partners to improve their knowledge and skills to meet the ongoing challenges of parenting.

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
Returning to work is a big decision after you’ve experienced a stroke. The resources provided here will help guide your decision process.

Getting Back to Work After Stroke – Stroke Association (UK)
This site aims to provide you with all the information you need to help you think about working after a stroke. They have tips on planning for your return and getting the support you need at work. There’s also information on changing career, retirement, and volunteering. (Note: many of the resources may be UK based/focused).

Returning to work after brain injury – Headway, the brain injury association (UK)
You may find that you can no longer do the job that you once did in the same way, or that you can no longer do it safely. This does not mean that you are no longer able to work, but that you may require adaptations to be made to the workplace to accommodate your needs. Read about your options at the website above. (Note: many of the resources may be UK based/focused).

Five Things You Should Know about Returning to Work – Brain Injury Association of New York
This article details five important aspects of returning to work and services and supports that are available to help assist.

Volunteer Match
If you are retired or unable to return to paid work but still want to contribute in a community, you may find anappropriate group to volunteer with in your area through this search engine.

Guide to Requesting Reasonable Workplace Accommodations – US Federal Government/Job Accommodation Network
This website provides detailed information about seeking reasonable accommodations that can help the employee meet the job requirements.

Adaptive Sports and Recreation

Directory of Adaptive Sports Organizations – Challenged Athletes Foundation
The Challenged Athletes Foundation believes that involvement in sports at any level increases self-esteem, encourages independence and enhances quality of life. Get connected with a group of people using adaptive equipment to enjoy activities through their search engine.

Directory of Adaptive Sports Programs, Organizations, Equipment, and other Resources – National Center on Health, Physical Activity and Disability
This is a directory available for people with disabilities and health conditions. NCHPAD’s overall mission is to help people with disabilities find accessible programs, sports, equipment, and more – this list will give you a good starting point.

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 a large, 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 which can be helpful to many people, regardless of life circumstances.

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.

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.

Apps / Websites with Fee-Based Content

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)

American Music Therapy Association
Music therapy can be a powerful way to support your recovery from stroke. This organization’s mission is to advance public awareness of the benefits of music therapy and increase access to quality music therapy services in a rapidly changing world. To locate a music therapist, consult their directory here.

The Power of a Story: A Conversation with Katie Strong – Aphasia Access (podcast)
In this episode, aphasia expert Dr. Katie Strong discusses the healing power of storytelling and how story construction can support both language and identity recovery.

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/live.

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

Book Recommendations
There are numerous books, including memoirs, that can be very supportive during the emotional journey. We have compiled this list as a starting point in your reading exploration.

Movies about Stroke, Aphasia, and Brain Injury
Movies and shows, whether documentary or scripted, can help illustrate the impact that stroke, brain injury, and aphasia has on one’s life while sharing a story of recovery and hope. In our curated list, we share some of those that have been most impactful to us.

Podcasts about Stroke, Aphasia, Brain Injury, and Emotional Recovery
Podcasts, on-demand audio programs, are a very popular medium for sharing information and stories.

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 [email protected] 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.