TBI and higher education

With September upon us I can’t help but think of school and fresh starts. My heart goes out to anyone starting school and suffering from a traumatic brain injury or post concussion syndrome. These facts and figures from the Brain Injury Society of Toronto indicate that 30% of all traumatic brain injuries are sustained by children and youth, and is the leading killer and disabler of Canadians under 40. This would indicate to me that there are a lot of students returning to school this year with some pretty big obstacles in their life.

At a post secondary level there are a lot of accommodations that can be made to help with schooling. We were fortunate enough to be past this stage of our life when Jason sustained his injury. Rather than imagine how it would have felt I’d like to refer you to some links to help plan your schooling:

Here’s a video about why it’s a good idea to touch base with disability services post injury.

Not sure what help you might benefit from? Here are some ideas from Brainline.

I was stunned by the comprehensiveness of this page by Niagara College – check out what your school knows about TBI, with the prevalence of these injuries it’s very likely they have some ideas for accommodations.

For our readers – how did you cope with your brain injury while in school?

Happy birthday Husband!

Today marks my husband’s 31st birthday. This year we’ve been blessed to have 3 meals with small gatherings of friends and family to celebrate another year -and Sunday he’ll be sleeping all of them off.

I want to take a moment to brag about my husband. This past weekend I was asked how married life was treating us. I couldn’t help but start by saying how very lucky I am. Oldham07241527

He is brave beyond belief, he has faced every day of this journey head on. He lets me share his stories and our strategies for dealing with life post TBI without ever asking me to protect his feelings. He never hesitates to tell friends and family what he’s battling and has far more compassion for them than I do when they don’t get it.

He made the transition from travelling and working to staying home and concentrating on rehab look easy. There was never one day of anger or tears, just gratitude for the rehab options we’ve been granted. He gets out of bed every day, puts on clothes and does what he has to for his health.  He cleans and cooks so that I can work and never, ever brings up this change of roles against me.

He is amazingly kind. He’ll still take time to ask how others are doing or hold my hand when I’m having a bad day. He never makes me feel bad when my turn cooking dinner inevitably ends with ordering takeout.

Oldham07241540He’s a fantastically strong man and I am so happy to be celebrating him this year.  It’s easy on the bad days to get caught up in symptoms and forgotten tasks, a mistake I know I make more often than I’d like to admit. As a supporter I will never really understand how much energy it takes every day to keep being himself which just makes me more in awe of what he has accomplished this year.

Happy birthday Husband! I love you and respect you.

I need you

One of the hardest realities of life post TBI is the loneliness of it all. We miss out on big dinners and parties because it’s just too much stimulus. We had about 11 months of hermitting, just trying to get through life and when we were ready to venture out again, for the most part, people had already moved on in their life.

And so as adults, with some very real limitations on our ability to make commitments we are out there trying to make friends again. The joy of making new friendships is that they will learn to love us as we are now, with a 9 p.m. bedtime and a lack of nouns on bad days. They’ve probably seen one or both of cry as we talk about that first year of marriage. They learn our dog’s name in the same dinner date that they learn about Jason’s time at Toronto Rehab and so all these bits of our life are just us, and not a comparison to who we were before. It’s lovely and it’s weird and I have trouble putting it into words.

Then this blog called Amidst the Chaos came across my news feed and the first blog I read was I Need You More Than You Need Me. Our circumstances are completely different, where this author has moved and lives far away from friends and family we still live in our hometown with only a 7 minute commute to either set of parents. But the heart of her blog touched me, and I think it’s exactly how we feel. We need our new friends in a way they don’t need us. It feels so lovely to be welcomed into friend life again, I wish I could explain to them how very grateful I am for them to meet us where we’re at and support us along the way,

P.S. if you love how Christine writes on Amidst the Chaos read her posts on Lessons from the NICU.  We’ve lived through completely different medical issues but she sums up everything I’ve wanted to tell anyone that asks about those first few weeks of hell during Jason’s recovery.

Review: Mindstorms

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.

Finding the right fit

We’ve shared our bad experiences. We shared some tips on how to sever ties with the bad doctors. We were lucky enough to get a fantastic doctor to take Jason on. Here are some indications you have a good doctor in regards to brain injuries

  • The doctor should be patient (no pun intended) as you describe symptoms. Good doctors will recognize how hard it is for you to remember and communicate and will view those as other symptoms not just you being difficult or flighty.
  • The doctor should be aware of the best practices involved with brain injury cases – time off work, referrals in your area etc
  • The doctor should be prepared to refer you out to a neurologist, neuropsychologist and able and willing to explain the results of those appointments when you see them next
  • Ideally a good doctor will be flexible if you’d like to try private treatments or supplements but you MUST be honest with your doctor about what you are involving in your recovery
  • Empathy and good listening routinely top surveys about what Canadians most want from their doctors – and it makes complete sense. You don’t need a doctor to sit and cry with you but you do want them to understand where you are coming from and take your complaints seriously.
  • A good doctor will ask about how symptoms are affecting your activities of daily living, social life, mood etc. They want you to be a healthy well rounded individual.
  • A good doctor will recognize that you may have flawed self awareness post concussion or brain injury and will ask what others say your symptoms are. Sometimes this distinction makes all the difference in the world in how you report symptoms.

Here is a great doctor (American) speaking about patient’s rights with doctors and indications of good doctors – I encourage you to watch or read the transcript.