Traumatic Brain Injuries and Neuropsychological Testing

Neuropsychological testing was performed on Jason at Toronto Rehab. From what we understand this is an assessment only done for those in the program that are planning on returning to work or school. As we mentioned in our posts on Brain FX, some of the results overlapped but it seemed to our uneducated perspective that they did cover different skills and situations at times.

Treatment type: Neuropsychological testing

How to find: Referrals from your doctor or specialist, https://members.cpo.on.ca/public_register/new and select Neuropsychology as the category you are searching

Price: in a hospital setting covered by OHIP, private often above $200.00 an hour as far as I can find

Credentials: Look for someone that is registered with the College of Psychologists of Ontario, with Clinical Neuropsychology as an area of practice

What is it? Neuropsychological assessment is a performance-based method to assess cognitive functioning. This method is used to examine the cognitive consequences of brain damage, brain disease, and severe mental illness.

Notes from our assessment:

This testing was done in two 1.5-2 hour sessions but can be implemented in a variety of time frames, I’ve heard of some people paying for 8 hours of testing to have data for lawsuits etc. Jason said most of the testing was intriguing and task/game based. He had to find patterns, remember words and lists, navigate games without knowing rules based only on the response from the neuropsychometrist who gives the testing.

After each appointment he was EXHAUSTED. To be fair, just hearing about the tasks he had to do made my brain tired so it certainly is not easy testing. The neuropsychologist met with me to go through symptoms and provided Jason and I questionnaires on his symptoms and self awareness and all of this information was combined with the testing data to give us a thorough report on Jason’s strengths and limitations post injury.

The testing is done in a quiet room, one on one, with no distractions. The neuropsychologist and neuropsychometrist made it very clear to us that these results are only indicative of how Jason is able to navigate these tasks to in this specific environment. If you pursue testing I think that is a really important piece to keep in mind, real life (especially most workplaces) is rarely uninterrupted or calm and those confounding factors can change how one is able to think in those environments. Nonetheless it is a thorough report and helpful to keep in his file and in our minds as Jason prepares to navigate the return to work.

A break for the Emmy’s

This post is coming a bit late to the game but a few months ago I wrote a post mentioning Tracy Morgan’s traumatic brain injury and I can’t help but follow up now.

Last week Tracy returned to the stage as a presenter at the Emmy’s and was received with a standing ovation by all. It was beautiful and his speech seemed honest and thoughtful and sprinkled with just enough jokes to keep me from getting weepy. If you haven’t seen it yet, please check it out.

It’s so exciting to see survivors returning to their life, or stealing a few minutes with friends to remember the good things they have to live for. But even more exciting to me was to see all those colleagues excited for Tracy and honouring his journey over the last 15 months. Imagine how much good we could do for TBI survivors if we started greeting them with cheers and friendship instead of frustration that they aren’t further in their recovery faster? Imagine how we could affect our loved ones if we honoured each step they take as a triumph? It was a beautiful moment for me and a good reminder to be supportive of my husband and friends as they navigate their new normals.

Kids of TBI

When Jason switched to his new family physician one of the first things she said was that there was no way we could have children while he was in such an early recovery phase. As frustrating as it is to be told what we are allowed to do as adults I recognize the wisdom of this advice. I can only imagine how exhausted parents must feel when dealing with a spouse with TBI and children. I struggle to balance our life and we have no children and I control my own work schedule! There are some parents out there doing some amazing things. Recently a few posts about how to cope as a child in this situation have come across my desk and I wanted to share for those that find themselves in this position.

This beautiful letter was posted on Brainline by Janna Layde to kids like her with a parent with TBI.

Seven Truths – the ripple effect of TBI lists some of the realities that parents need to be aware of.

 

Teaching those with traumatic brain injuries

Sticking with this week’s theme of things I know nothing about….my heart goes out to those teachers that are going to have their life touched by traumatic brain injury in their kids this year. I think it’s really important that teachers are given information from parents about how their child shows fatigue and symptoms and what accommodations might work for them or have worked in the past. I know nothing about being a teacher but I was pleasantly surprised to find quite a few resources. Here are some of the best I looked at,

A Fact Sheet for School Professionals

Classroom Interventions

The Transition from Hospital to Community

Reintegration of Students with Traumatic Brain Injury

TBI and public school

Watching Jason live with a traumatic brain injury has been saddening and he has the ability to understand what is going on most of the time. I can’t imagine being a parent supporting a child with a brain injury. As such, as with yesterday’s post I won’t try to imagine what would be good advice but provide some references to help guide the start of school for you.

Make sure you understand the requirement for rest.

Check out the Parents’ Guide listed on Brainline. They’ve also posted this great video with ideas for making school more manageable.

Make sure you have an understanding of the varied symptoms that can occur so you can find help early.

Learn to advocate for your child! They are going to need your help more than ever.

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.

When doctors fail (part 2)

Firing a doctor

In our last post, we shared the unfortunate experiences we had with Dr. D. In January we made the decision that we could not put up with his lack of care anymore but we couldn’t fire him out of anger. While we had to fight for referrals with Dr. D, we would have no referrals without him or another doctor lined up. Here’s how we navigated the system

  • The first suggestion by the physicians college and the ministry of health is to try to talk to your doctor about the disconnect you are feeling. I fully admit after the “move to work” comment we did not do this, in my opnion we had given Dr. D 6 months to shape up. I still understand why this is the first recommendation and if you feel like you have the ability to have this conversation please do. Continuity of care if usually helpful so if you can find a way to work with your doctor you should.
  • Don’t fire your doctor until you know someone else will take you on. Going to emerge and walk in clinics is a bad use of your time, more likely to cause problems if you are sensitive to noise etc and often won’t get you the referrals you need (it depends on how the doctor feels about your symptoms, medical and prescription history etc). If you are taking any narcotics for pain it’s really hard (impossible perhaps?) to get refills without a regular doctor.
  • If you feel that your doctor has been negligent you can file a complaint with the physicians college. We weren’t sure if our situation fit into this and frankly were too exhausted to worry about it.
  • If you have a good relationship with the support staff/office manager at your doctors clinic you can try writing a letter stating that you have lost trust in your doctor and would like to work with someone else and they may move your file to someone new. This would be extremely amazing but not always possible so don’t get upset with the staff if they aren’t able to make this call.
  • In Ontario, there aren’t that many doctors that don’t have full rosters so this may mean some asking for favours and begging but please don’t end up without any care. Ask for help from friends and family (yep, this is one time you can be THAT guy!).
  • If you do end up in emerge or a walk in and you think the doctor is a good fit for your case ask for their contact information in case you have any follow ups. Not every doctor will hand this out but it’s worth asking. Don’t try to get them to take you on when they are pressed for time in either of these environments, send them a brief thank you note and ask if they would be willing to take you on after the fact.

Tomorrow I’ll share some thoughts on how to know if a doctor is going to be a good fit for you. Make sure you are also being the best patient you can be and check out my thoughts on doctors appointments.