My Favorite Books, Support Groups and Other Resources for Stroke Survivors
I know when I left the hospital after my stroke, I was full of questions. What’s life going to be like after I get home? How will all this affect me emotionally and financially? Will this have an effect on my family? Will my friends stay in touch with me? Will life ever be “normal” again?
These are all things the nurses, doctors, and therapists didn’t really prepare me for. They helped me learn how to get up if I fell, but if I fell emotionally, I didn’t know where to pick up the pieces. Pamphlets and names of stroke support groups are great, but some people don’t have rides to these events. Some are totally on their own without a family or friend’s support. I had altered as a person both externally and internally and although my family was around, I felt very much alone.
One thing I did to help was to search for books written by stroke survivors. I looked at articles, blogs, websites, anything that would help me see life after stroke through the eyes of those who had lived it. It took much time on the internet, but I finally found an array of information that I wish people had told me while I was in the hospital. At the same time, it helped to know I wasn’t alone, and several had the same questions as me. Success stories inspired me to work hard because if they could improve, so could I.
I decided to compile a list of these resources for other stroke survivors, hoping to make it easier for you to find them. The important thing to remember is that while we all have one thing in common (stroke), the type of stroke, where it took place in our brain, our rehab and family situation, are all different. There may be commonalities, but everybody’s stroke journey is unique and we’re all not going to heal the same amount or at the same rate. As long as we give it our all, then we have victory!
I hope that you will enjoy one or all of these resources and that it helps you, whether you are a new stroke survivor just coming out of rehab or have been a stroke warrior for 20 years. Either way, there are people out there who feel the same joys, frustrations, ups and downs as you.
Books With Survivor Stories and Caregiver Tips (all are available on Amazon):
“Different Strokes” by Steven Boorstein – This book has it all. It covers his own personal stroke journey at age 55. Then it goes into how other stroke survivors have dealt with their own strokes (how friends and family relationships changed). Lastly, it covers many therapies and resources stroke survivors can find helpful after their return home.
“My Stroke of Insight” by Dr. Jill Bolte Taylor – At 37, Dr. Taylor was a brain scientist working at Harvard when she had her stroke. She tells her stroke journey through the eyes of someone who really understands the workings of the brain and how it can heal.
“The Diving Bell and the Butterfly” by Jean-Dominique Bauby – A 44-year-old man survives a brainstem stroke. But he is locked in, only able to blink. He writes his book by blinking while someone goes through the alphabet over and over again.
“A Mind of My Own: Memoir of Recovery From Aphasia” by Harrianne Mills – A professor is in a motorcycle accident and sustains a TBI. The one thing that defines her, her ability to speak, is altered and she has to learn how to find it again.
“Coping With Stroke: 50 Answers to Everyday Caregiver Challenges” by Monica Vest Wheeler – The main theme in this book is that not only did the stroke survivor go through the stroke, but the caregiver/family did too. Full of everyday tips to remind you that your stroke survivor needs to be watched after, the caregiver does too.
“A Piece of Her Mind: A Mother-Daughter Journey Through Stroke and Recovery” by Mona Gupton and Stacy Gupton – An interesting perspective as a 21-year-old college student has a stroke and her mom helps her through rehab and her return home.
“Stroke: Brain Assault” by Madelina DePaz – This woman provides her stroke story, life after stroke and advice on exercises that helped in her recovery. She was a former nuclear engineer.
“Take Brave Steps for Stroke Survivors and Families: A Message of Motivation and Hope” by Ron Gardner – After his stroke, he became a motivational speaker and tries to help people see the positive side of stroke.
“I’ll Carry the Fork! Recovering a Life After Brain Injury” by Kara Swanson – She shares her TBI/stroke story by talking about the struggles of both the survivor and the caregiver.
“Hope Heals” by Katherine and Jay Wolfe – A young model has a stroke a few months after she has her baby. Life is not easy, but this book is uplifting and full of inspiration, and written through the husband’s eyes as well.
“Left Neglected” by Lisa Genova (fiction) – A middle-aged woman notices nothing on her left side of vision after a car accident. Instead of giving up, she adapts.
“The Calm Before the Storm: A Stroke Survivor’s Story” by Delanie Stephenson – A 33-year-old and her sister both have strokes in less than a year. This account talks about how this young woman lost it all through her brain stem stroke but worked hard to gain it back.
Children’s Books
Younger and younger people are having strokes. They do not just affect elderly people. Here are some books for children whose parents have had a stroke or just explaining what a stroke is in simpler terms.
“Now One Foot, Now the Other” by Tomie dePaola – This is a picture book where a young boy’s grandfather has a stroke. It helps to explain why Grandpa is different and how the boy can help him.
“Beamer Learns the Signs of Stroke and How to Help” by Cindy Chambers – Beamer is a therapy dog and helps young children learn the signs of stroke.
“Mom Had a Stroke” – This book accompanies The Calm Before the Storm and is told through the eyes of the 6-year-old daughter who watched her mom have a stroke. It reinforces the idea that the “New Mommy” may be different than the “Old Mommy” but one thing has stayed the same, Mommy still loves her.
Websites and Other Resources
American Stroke Association — Find a list of local stroke support groups, information on stroke prevention, and stroke recovery. You can sign up for the monthly newsletter dedicated to information just on stroke and stroke survivors.
Different Strokes – This site is geared more to young stroke survivors. It offers online exercise classes, talks on health and wellbeing, as well as survivor stories.
World Pediatric Stroke Association – This site is dedicated to raise awareness of prenatal and childhood strokes, helping people know it is not just the elderly who are susceptible to having a stroke.
World Stroke Organization – Their vision “is a world where people live free from the effects of stroke.” It brings people together from around the world to help with stroke education.
Home After a Stroke – Rebecca Dutton is a stroke survivor who blogs about life after the return home. She’s very open about some of the pitfalls of life on your own after stroke.
Support Groups
Not everyone can drive to a local support group. The internet is a great tool to find out information and make connections. I have made some great friendships through Facebook groups and other sites. It helps to have someone to talk to who understands.
Facebook Stroke Support Groups
There are several, so pick the one that suits you.
Stroke Support Group With Flint Rehab
The Stroke Exercise and Rehabilitation Group
United Stroke and TBI Survivors
Strive for Greatness – Let’s Talk Stroke
Brain Stem Stroke Support Group
Getty image by Nutthaseth Vanchaichana.
A young woman, wife, and mom who's life changed at the age of 33 due to a brain stem stroke. She's the author of The Calm before the Storm and Mom Had a Stroke.
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