This was hands down the best book I have read about treatments for brain injuries. When I picked it up at my library I didn’t expect much, it was not a book I’d heard of before, I only picked it because our library has no other books about brain injuries. But then I started reading and I was blown away by it’s layout, clear language and thoroughness.
It can be found by it’s longer title, Coping with Concussion and Mild Traumatic Brain Injury: A Guide to Living with the Challenges Associated with Post Concussion Syndrome and Brain Trauma, and is written by Diane Roberts Stohler and Barbara Albers Hill. I think the language and thoroughness of this book may be overwhelming to those that have a brain injury but it is the perfect resource for any support person.
The book begins by discussing the anatomy and physiology of the brain and a variety of brain injury terms and injuries. This section is probably the most clear and concise version I have ever read and should influence how health care practitioners start speaking to their patients. A real understanding of what’s going on under the skin can do wonders for friends and family members’ compassion.
The book continues by breaking down symptoms into physical, mental, and emotional. The authors list the widest scope of symptoms that I’ve ever found in one resource and break each down into how it looks/feels, typical interventions, alternative interventions and what can be done at home as interventions. I found the format easy to follow and makes it easy to come up for a plan for moving forward – whether it is questions to ask a doctor or behaviours and routines to start practicing at home. This book succeeds in making treatments seem accessible and giving even this jaded writer hope for those new to the brain injury world.
Wrapping up the authors continue to explore all aspects of brain injury by discussing what recovery can look like, how to live together post brain injury and what advances in medicine are on the rise for brain injuries.
This is an incredibly helpful book that navigates brain injuries from a clinical rehab point of view. Unlike my other favourite books it does not include sympathy or funny stories to help the support system understand how hard rehab is, but it is the perfect guidebook for coming up with a plan of action.
A few weeks ago I shared a touching blog post by Rosemary Rawlins and realized I never published my review of her book. Learning by Accident: A Caregiver’s True Story of Fear, Family and Hope is her touching real life story of life after her husband Hugh was injured while cycling.
Rosemary writes beautifully and chooses her words carefully, so that with every description of an experience my heart was aching right along with her. I started this book multiple times during the first year of Jason’s injury and had to put it down every time I got to the chapters about being in the hospital immediately following Hugh’s accident. The fear and sadness was written so enchantingly I couldn’t help but relive Jason’s incident. If you have ever wanted to step into someone else’s shoes and understand the fear of losing your love, give this book a read. Likewise, if you want to understand the frustration that can come when dealing with the legal system and a brain injury, immerse yourself in her stories on dealing with the driver that hit Hugh. Rosemary’s candor will give you insight into situations you hopefully never have to live through.
Rosemary and Hugh’s story includes many, many acts of kindness and love from friends and family. It’s inspiring and a beautiful story of community. Unfortunately, this was an area I couldn’t see our story and I probably wept as much for the lovely acts of their friends as I did for our loneliness during Jason’s recovery. I think (based on many conversations, but no real research to speak of) that many families going through brain injury recovery become isolated and so I found it really lovely to hear about friends stepping up and showing love in a really concrete way. The friends and family described in Rosemary’s book are to be admired. For those of you going through as a caregiver I’m sure it’s not at all passive aggressive to highlight some of the stories and hand out copies to your own friends and family!
Finally, as much as I’ve discussed Rosemary’s writing technique, she includes a lot of information on brain injury recovery in general. She describes therapies and symptoms succinctly in a very accessible way.
Norman Doidge is a Canadian Psychiatrist and the author of The Brain That Changes Itself and The Brain’s Way of Healing. His non fiction books introduced the concept of neuroplasticity to the general public and changed the way many thought of brain injuries and neurological problems.
If you ask health care professionals most either loved these books and were reinvigorated by the treatment options for those they had lost hope for, or they scoffed at these ideas of new science. I think it’s safe to say you want to be treated by the group that has hope for you and a new dedication to reading literature and research. That’s not to say each treatment Doidge discusses will work for everyone but certainly there are options available now that we didn’t know about 10 years ago. It’s exciting to have hope and to feel acknowledged by the health care community and that is what I’ve heard most often from readers of these books -they are delighted to have options. The idea that they will never improve has vanished and they are left feeling excited about recovery again.
We had the opportunity to hear Doidge speak about his second book, The Brain’s Way of Healing, and he is a very compelling speaker. I encourage everyone to google him and check out some of his interviews. In this second book he mentions two treatments specifically that relate to traumatic brain injuries – Matrix Repatterning and Dr. Kahn’s Bioflex lasers. We’re in a pretty luck position as to live 30 minutes from the founder of Matrix Repatterning and about an hour from Dr. Kahn. At this point we have pursued Matrix Repatterning and will discuss Jason’s results in the near future.
These books may not provide the same insight into symptoms or lifestyle that others I’ve reviewed do but they provide a very progressive view of the brain that I think is essential to recovery. The broad strokes are that the brain can rewire and fix itself if you provide it with the opportunity too, so your journey with TBI is never finished unless you decide it is. In each book certain treatments may seem applicable to you, others won’t but the science behind it all is compelling and deserves to be understood.
Mindstorms: Living with Traumatic Brain Injury by John W. Cassidy serves as an excellent Coles notes version of TBI care. If you have no experience with traumatic brain injury this is an excellent introduction to the doctors and types of rehab you may encounter in your journey.
With chapters discussing diagnosing brain injuries, treatments for brain injuries and re-entry into a full life this book truly does touch on a lot of topics that people starting their journey with brain injuries are curious about. It is a great book to read through and make notes of things you want to ask your doctor about. At just over 200 pages it is a handy guidebook but doesn’t go in depth into anything, it covers many stories of others with injuries but doesn’t follow their progress long term. Published in 2009 I do believe it was probably the best resource out there in language families could understand at the time. It seems that treatment of traumatic brain injuries has changed a lot since it’s publication with much more discussion on neuroplasticity and rest. There seems to be less emphasis on symptoms correlating to a specific area of the brain and more discussion of rehab for a full life regardless of imaging or old expectations.
I still think this book is a good read but don’t see it as the whole story. Use it to start guiding your research and questions with doctors and health care professionals and you’ll make this book go far.
This book by Clark Elliot, an artificial intelligence professor in Chicago, has made its mark as one of my favourite books of all time. I’m sure those that know me are sick of hearing me talk about it but honestly if you love someone with a brain injury you NEED to read this book.
- Notice how the title includes the word CONCUSSION? That’s because every concussion is a traumatic brain injury. This is the first book I’ve read that really acknowledges this and I hope it starts becoming common knowledge. There’s no such thing as “just a concussion” as this book illustrates.
- Elliott has kept stunning notes about his symptoms and has been able to record his experiences with such clarity and specificity that it really helps the “normals” understand the “concussives” (his terms not mine!)
- His understanding of artificial intelligence provides him with insight and analogies that help bridge the gap between normals and concussives. He is able to dismantle seemingly easy mental tasks into all of its parts and compare to computer tasks which makes a lot of sense. More than once (more than ten times?) Jason and I were shocked to suddenly have words to explain symptoms he has struggled with.
- After exploring his situation and symptoms he found help! The later chapters discuss his treatments from Dr. Deborah Zelinksy, an optometrist specializing in neuro-optometric rehabilitation and Dr. Donalee Markus for cognitive exercises. His explanations of the treatments and information provided by each of these doctors is incredibly interesting and gave us hope about Jason’s treatment options.
Without a doubt this is a must read for anyone supporting someone with a brain injury. It can be a bit heavy and complex, making it not the ideal book for anyone suffering from acute symptoms to read themselves. Our next post will be about our own experience with neuro-optometric rehabilitation.
Check out this link for a radio show (approx. 53 minutes) with Clark Elliott and Dr. O’Shanick from the Centre for Neurorehab Services.
Head Games: Football’s Concussion Crisis from the NFL to Youth Leagues by Christopher Nowinski
This book rocked my world early on in Jason’s recovery. While I expected little from a book written by a wrestler I was so pleasantly surprised by the amount of research and advocacy he has done for brain injury awareness.
Nowinski has suffered brain injuries himself and has lived through the dark days of seclusion post injury and the hard battle back to a version of his life that he can live with. He describes his own experiences in this book with such precise language it offered me a lot of insight into how my husband was suffering. This was the first account I had heard from a male’s perspective and it was disarming how vulnerable Nowinski allowed himself to be.
After “recovering” (I’m still unclear on if we can ever use the word recovery for a brain injury) Nowinski dedicated himself to learning about brain injuries in athletics and the statistics he discusses in the second half of his book are shocking. I was aware of the injuries in the NFL and NHL but had yet to consider the injuries to kids in lower levels of these sports. Nowinski investigates multiple injuries in youth and their coaches’ abilities and willingness to pull them from their games. His stories reveal a shocking ignorance in youth athletics by both parents and coaches which is extremely dangerous for kids. This book explores different options for youth athletics as well as new tests to diagnose concussions and new protocols for care.
This book was also the first time I heard of second impact syndrome and chronic encephalopathy – both scary sequelae of traumatic brain injuries despite. Reading this book helped me get serious about advocating for my husband and encouraging him to acknowledge symptoms and take them seriously. Despite it’s personal relevance to our situation I think this was an outstanding book that would have been fascinating anytime. It’s changed my perspective on youth sports and I can’t count how many times I’ve recommended it to friends with kids in soccer or hockey (sorry friends if you find me preachy – I just want everyone to be informed!).
It’s available for less than $10 on Amazon and is my best purchase since Jason’s injury.
Nourish Your Noggin: Brain-Building Foods & Easy-To-Make Recipes to Hasten Your Healing from Mild Traumatic Brain Injury by Tina Sullivan
This book written by a mother who helped her son recover from a mild traumatic brain injury is wonderfully informative and written in terms most people can understand. She has made the journey from being a scared (I imagine!) mom to an advocate for making informed food choices and it’s clear she has done a lot of research.
She starts by laying out foods to avoid and gives REASONS (it makes turning down coffee in the morning much easier when you can picture how much trouble you are saving yourself). In addition to making her statements she offers websites and references to look up information for yourself.
This book also includes how to make smarter choices, laying out benefits of organic vs. regular produce, gluten vs gluten free, free range vs conventional eggs. It’s a very interesting read that allows you to be more informed while grocery shopping and meal planning. There are also some recommendations for vitamins, and foods to add in to your diet to maximize your ability to heal.
Finally Sullivan includes almost 60 pages of recipes that suit her various recommendations – including options for breakfast, snacks, lunch, dinner and dessert. So far all the recipes we’ve tried have been a hit, she truly succeeds to make healthy foods flavourful and enjoyable to eat even if you aren’t recovering.
If you’d like to check out some samples of Sullivan’s writing she contributes to brainline here: http://www.brainline.org/content/2012/06/nourish-your-noggin-nutrition-and-your-brain.html . Nutrition can help with recovery and is definitely worth researching – Sullivan has done the work for you. I’d recommend buying the book so you can access all her recipes – it’s for sale here.
Each post it note marks a symptom I had noticed in Jason. Once I had marked each one and read the whole book I made a list (nearly two pages long with examples) of symptoms and provided copies to each of his health care professionals.
This account by Cathy Crimmins of her husband’s recovery from traumatic brain injury was a stunning book to read while we were still early in Jason’s recovery. Crimmins is a humourous writer by trade so her sarcastic remarks and funny intelligence stopped me from drowning in too many tears while reading. The flip side was that she too actually knew what it felt like to be the wife wondering when her husband will come back and she stayed refreshingly honest throughout the book about that pains that come with that role. Where others in my life sought to offer comfort they thought would help, Crimmins helps by saying the way things actually are
“Mourning for the man who used to be my husband, who’s now been replaced by a very odd stranger, sometimes leaves me so weak with anguish i can barely get out of bed in the morning”
Crimmins’ seemingly natural instinct for research means that this book is a true guide to symptoms of a brain injury – more comprehensive than anything doctors told us early on. She has questioned doctors and read reports and now uses brain injury terminology with ease and takes time to explain each so that the reader can truly imagine what she was dealing with (or perhaps it just struck too close to home for me).
I read this book looking for comfort and hope for our marriage when I was feeling abandoned by Jason’s doctors. Crimmins delivered hope and better yet provided me with a two page list of symptoms that I now knew without a doubt we could attribute to this injury. Using the proper terminology and feeling more confident played a significant role in how I approached future appointments and meetings with his rehab team.
Shockingly this novel was also the first time I learned about self awareness impairments being a symptom of brain injury. This alone made so many issues between Jason and I more clear and gave me permission to start speaking up to my husband when he had no idea he was symptomatic.
I highly recommend this book for anyone that loves someone with a brain. I think you will do yourself a favour if you read it for fun, and just store the information away in your brain in case you ever need it. If you read it with a loved one in mind, you will need more and more kleenex as you build an image of their life before and after TBI.