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.
I’ve already mentioned the newer protocol for after a brain injury – complete rest, no stimulation (visual or auditory). This sounds painful and we were really fortunate that Jason managed to sleep for most of his first 3 weeks out of the hospital. The no stimulation piece is really hard to enforce when people are awake and bored and sick of lying in a dark room alone. Very early on in his recovery we got to see how essential rest was to Jason’s recovery.
On his first full day home July 7 – Jason got up to go to the washroom and then I had him sign some paperwork for short term disability. Without exaggerating this was maybe 7 minutes out of bed. Within a half hour he was throwing up which is a huge red flag for brain injuries. Fortunately my sister in law was with me and we were able to wrangle Jason into the car and get to the hospital. We were informed that that 7 minutes out of bed with having to walk, and read some papers and sign some papers – was enough to over stimulate his poor healing brain which caused the vomiting. 7 minutes and what any of us would consider low stimulation. Post brain injury you have to completely re set your expectations.
A few days into his seclusion Jason became unable to tolerate light in the house when he walked from his bedroom to the bathroom. This meant all windows and doors had to be closed and covered so that he didn’t experience sharp, shooting pain from the light. I refer to this time affectionately as “when I lived with a mole person” or “the time I was bruised all over from running into things”. This was not a sign of him getting worse – intolerance to light and sound seem to be quite common symptoms post brain injury and I think that’s why they have the recovery protocol that they recommend now.
To give you a long term point of view Jason was sent back to work 5 weeks after his brain injury and maintained 5 days of work a week from August 2014-March 2015. Once we got in with the rehab team at Toronto Rehab they speculated that some of his symptoms might not be as severe had he taken the recommended 6 months off to recover.
One of the first “weird” symptoms I remember was that for that first month and a half or so Jason seemed unable to regulate his temperature. The first few days I was shocked that I could have the air conditioning on, the fan on in his room and he would still sweat through the sheets every couple of hours. With a new ice pack on his head every 45-60 minutes (yes this means waking up every 45 minutes during the night to get him an ice pack) he would sweat less. I discussed this with an osteopathic practitioner friend of mine and learned that this is actually quite common because of the impact on his hypothalamus (area in the brain that regulates temperature among other things). This certainly was not a symptom I had heard of when I’d learned about TBI but once I knew about it and could ask others about it I learned it was common. This article details some other hormone regulation issues that can occur due to brain injury: http://www.hormone.org/questions-and-answers/2013/traumatic-brain-injury
Night sweats, or sweating in general can be a symptom of PTSD (post truamatic stress disorder) which is also common after a brain injury. PTSD can not be treated on your own and it isn’t something you can will better for yourself. It’s important to bring this symptom to your doctors attention so they can investigate if it is a hormonal issue or PTSD related and begin to work out treatment options with your medical team.
We’ve almost reached one year post TBI.
If you had asked me when I was sitting beside Jason in the hospital to imagine our life now: I would never have expected us to be doing as well as we are. Some would attribute that to my being a pessimist but I think that’s unfair. I had just read enough articles and studied enough anatomy to know that brain injuries are very scary, very bad things.
And then we went to our first follow up doctors appointment and our family doctor said we could get married 3 weeks post TBI as planned. And then Jason’s neurosurgeon said he was fine to go back to work 5 weeks post TBI. An osteopathic manual practitioner suggested that 85% of individuals are completely normal within 3 months of a traumatic brain injury. One article said anything that wasn’t “cured” 6 months post injury would never get better. Another doctor said our life one year after the injury would be our life forever.
Jason is a remarkable man and so when doctors gave us the statistic about returning to normal within 3 months we both assumed he would be one of those amazing recoveries. I couldn’t imagine our life being awful forever so we both expected a quick recovery and to be back in our routine within weeks of his return to work. It didn’t work out that way and I truly believe those false timelines that were thrown at us made our year (or at least my year) harder than it had to be.
When doctors made decisions about what Jason should be able to do based on their timeline I swallowed my complaints and tried to stop seeing symptoms. When 3 months and then 6 months passed us by and things were still bad I was heartbroken. My husband wasn’t better – this has to mean either he was defective or I was. He wasn’t getting better and I blamed each of us, and I dreaded the rest of our life.
I do believe that that was not the intention when those dates were thrown at us by health professionals. I’m sure they a) believed what they were saying to be the truth and b) thought it would give us hope.
But having lived through this year I feel like each of these milestones set us up for failure. The frustration at not having a normal recovery (how was Jason, a strong, young, intelligent man not in that 85%?), the fear of our future being miserable – those are BIG feelings to deal with. And they shouldn’t have been our burden. We should have been taking each day as it came and dealing with symptoms as they presented. This article could just as easily be called “The danger of listening to your doctor” because we took our doctors at their word and didn’t acknowledge it when things didn’t make sense to us. To be honest, after all the research I’ve done I have no friggin’ idea how these dates were thrown out at us. All the “new” science indicates that individuals with traumatic brain injuries can notice improvements YEARS post injury. The research about neuroplasticity and brain injury recovery periods is compelling and really indicates we shouldn’t be putting any timelines on ourselves.
In fact since dealing with doctors that specialize with brain injuries the only time line thrown out at us was that anyone with a TBI should be off work for 6 months minimum, and only returning when they are ready and on a gradual basis. This information is so far from where we started our story and yet it makes so much more sense. Having lived through our first year I can say I wish we’d never been given a date or timeline for recovery. So if you are suffering, please don’t look at the “big days” that have passed and see how you failed to accomplish what the medical community had planned for you. They’re just days, like any other, and you have a whole lifetime to get your brain back .
There are a lot of sources about vitamins and foods that help keep your brain healthy but it can be a bit harder to find out which foods are bad for you. I know in our situation it took us about 6 weeks and going to an osteopathic manual practitioner that had studied post concussion syndrome to find out some of these things.
- Alcohol – It can slow healing and exacerbate symptoms (none of us think clearer or are more effective after a few drinks!). Individuals will often find that they are more sensitive to alcohol after a brain injury so even “just one beer” can have an effect on your recovery. It’s also an easy choice to help cope with the emotional disturbances that can come after a TBI which can be dangerous because it often increases the symptoms of depression and anxiety. If seizures are a risk for you post TBI it is even more important to stay away from alcohol because there are studies that suggest that alcohol can lower your threshold for a seizure. Alcohol can not be mixed with most medications.
- Caffeine – Caffeine and other stimulants should be avoided while you take the time to rest and recover. Beyond the sleep disturbances that can be caused by caffeine, a lot of sufferers have also found an increase in headaches and post concussion symptoms when they consume caffeine. Further on in recovery (after the first few weeks) some doctors indicate that a cup of coffee a day is not harmful but it really comes down to your individual tolerance. Studies on rats have shown that it can slow recovery of brain injury but this is an area that is still being researched.
- Refined sugar and artificial sweeteners – Sugar can increase inflammation which can be problematic for healing from a brain injury. Drastic changes in blood sugar levels can spark mood imbalances ( high blood sugar can lead to anxiousness, low blood sugar can lead to feelings of depression). During recovery from brain injury these emotional changes can feel traumatic and exacerbate other symptoms.
These are just some simple rules of thumb to help with your healing.