What are executive functions?

I’ve gotten cocky lately. We have names for symptoms. We know what to expect on hard days and make modifications to limit hard days altogether. Jason isn’t working while he’s recovering. He has enough easier days to help me out around the house – suddenly over the last couple of months everything hasn’t been on me. It’s been lovely and I’ve gotten cocky.

And then it comes up again, and is in our face and reminding us that we’re still SO early in the recovery process. Pretty much without fail the symptoms that pop up are executive functions. And since I know I’ve written that term about 80000 times in the last year, I wanted to be sure to clarify what that means. Fortunately there are some very intelligent people over at Understood.org that made a beautiful infographic relating executive functions to kids. 

 

KeyExecutiveFunctions

I was delighted to find this page and near the bottom there are links to learn more about some skills and how to help. It’s been a huge part of shaping my approach to conversations with Jason and reminding me that certain situations are still just symptoms – not my husband choosing to be difficult.

 

No sleepy, no talky

I’ve posted some professional opinions on why sleep is so important post TBI and lots of ideas for how to make sleep work for you. Today I wanted to write a bit about how a lack of sleep presents itself in our life. Jason often tells people that fatigue is the first domino in his symptoms. Once fatigue starts to set in all his other symptoms tumble out, a year into this life I’m starting to be able to pick out the order of symptoms he commonly has and the warning signs to put an end to our activities.

If Jason runs himself to exhaust his A batteries in a day we can usually notice some symptoms. The first thing to go is usually his words. He’ll start interchanging words, missing words completely (in his case often nouns), or just drift off in the middle of sentences. In general he doesn’t notice these things which makes communication frustrating at times. More than once I’ve begged for nouns to be thrown into the conversation because I’m completely lost. At this stage there are also usually some concentration limitations, instead of verbal cues for things that need to be done we absolutely need to write down Jason’s list.

When Jason gets to his B batteries and uses them up concentration goes out the window. Jason might start out trying to get a glass of milk and end up cutting the lawn. Based on Clark Elliott’s book we make the comparison that Jason’s brain is like a computer and when he gets to this stage of fatigue it’s like new computer programs are opening up and he can’t close the window/program until he’s completed the task. So while he may want a glass of milk, if he looks out the window and sees the lawn needs to be cut that thought may take over and between fatigue and the learned fear of forgetting to do something he wants, cutting the lawn becomes priority #1. Weirdly, around the transition from B to C batteries Jason loses some ability to initiate tasks. It’s a thin line between being so tired that he switches tasks too easily and so tired that he can’t switch to a new task. This often happened at the end of the work day, knowing that he had to get to his car, drive home and be awake until dinner, he would often become stuck at his desk. I can not explain how these two things can both be signs of fatigue but they are and it seems like when Jason speaks to others with concussions or traumatic brain injuries they know EXACTLY what he means.

Once C batteries are being used and depleted it’s a bad situation. In another weird dichotomy Jason usually flips from anger (which was never an issue in his life pre TBI) to anxiety pretty quickly. The anger was really prevalent during the first 5 months when we weren’t receiving any care and he was working 50-60 hours a week in a management position. I’m sure there were a lot of other factors contributing to the anger such as denial of symptoms and confusion due to the lack of information we had. The anger now usually comes out at our cupboard that has cookie trays (does anyone know how to store those without them falling out if you need one?). Anxiety is more common at this point in our life and we do everything we can to help Jason find a way to rest before a panic attack becomes inevitable.

While these are purely our experiences we’ve heard from many others with traumatic brain injuries that can track their progression of symptoms and fatigue in a similar fashion. Almost 100% of the time everyone agrees that symptoms get worse with fatigue and that tracking early symptoms and planning a rest period can prevent full break downs.

Sleep position

Recently I’ve read a few studies linking poor sleep to Alzheimer’s and dementia. We have heard many times that brain injuries increase the risk of Jason and other survivors suffering from these conditions in the future, and scientists are speculating that that is partially related to the poor sleep they often suffer from. When we sleep our body clears waste out of our bodies and our brains, and if not cleared out these solutes lead to an increased risk of neurological disease.

A more recent study just published that your sleep position can also have an effect on the efficiency of your body at clearing out these solutes. Want to see their recommended position for excellent waste reduction? Check out this link.

Sleep deficits

This infographic was gaining a lot of traction in the TBI support groups I’m a part of this week:

Sleep deficit

 

Created by Science.Mic this infographic focuses on the effects of lack of sleep on the brain. Most of the symptoms discussed are already issues for those with brain injuries – anger, lost memories, risky decisions, head in the clouds are some of the most discussed among TBI survivors. They struggle with these things on a daily basis so one could expect that they feel these symptoms all the more with a lack of sleep.

The broken phone lines in your brain

Sticking with our theme of analogies regarding fatigue here’s one we learned when we needed to explain why thinking can be so fatiguing. This is not to say it’s the only reason, but it does allow you to create a relatable image for friends and family.

Imagine you are making a call from Toronto to Denver. The phone companies have built towers and lines that make that call easy, straightforward and quick. Now imagine one of their towers breaks. Your call ends up needing to be sent through towers in Texas and Florida to be sent back up to Denver. That would take longer, and use up far more energy.

Neurons in the brain function similarly. You may have been able to listen to instructions and write them down at the same time in the past. Now some of the neurons that are needed for those actions are damaged and your brain compensates by using other pathways and neurons. It may take longer and use up more energy but eventually you will have some variation of the instructions written down.

Fatigue

Understanding the way fatigue effects an individual after a brain injury is, in my opinion, one of the most important parts of recovery. I’ve read about, and witnessed, how all other symptoms can get significantly worse once fatigue sets in.

Fatigue post TBI seems to be different than pre TBI life.

First, it sets in earlier. Where pre-TBI Jason could fly across the world for a few meetings and never miss a day of work upon return – post TBI Jason struggles if we change his sleep schedule by half an hour. Before Jason could survive on 5-6 hours of sleep a night for months on end, he now needs at least 10 hours a night to function. I speak of our experiences but in each book we’ve read the authors experiences mirror Jason’s. In support groups it seems to be one of the symptoms that is hardest to live with.

Second, it set in unexpectedly. Post TBI having to carry out a conversation, or answer emails can prove to be exhausting. It is also sometimes called cognitive fatigue because it tends to be brought on by completing “brain work”. For Jason skills such as multitasking, planning, decisions making, prioritizing, listening to instructions, remembering lists are all extremely tiring now. We have literally had days where Jason might “only” need to make two calls with specific questions for each caller and write an email about the responses and completion of that task might require that he take a nap. These were tasks that were done while also making dinner and training our dog before!

Third, it takes longer to recover. This has been the hardest lesson for us (in fact one year later we have only just learned a good analogy for this, it will be a separate blog post!). Previously a quick twenty minute nap might have been enough to recharge Jason if he was tired (usually this only happened after coming back from China or Australia). Now if he’s pushed his limits it takes a 1-2 hour nap. If he stays up a half hour late it seems to take another hour or two in the morning to make up for it.

Fourth, it can’t be ignored. Without fail I have heard this message from people with TBI and strokes. Once fatigued they are done. Pushing through it (as everyone seems to try) tends to lead to a worsening of other symptoms. I know back when we were naive and working with a doctor that didn’t understand brain injuries we tried to push Jason through the fatigue. Tasks would take longer, Jason’s way of doing things would baffle me, and on really bad days Jason would have a panic attack. Jason is not prone to panic or anxiety and in fact tests showed he is emotionally “resilient” but once fatigue has taken over all bets were out the window.

It is really essential to start re shaping one’s ideas about fatigue and rest post TBI to make the most of recovery. It can be hard to understand so we will be posting a few of the analogies that helped us understand and explain to others in separate posts.

Here are a few other links to understand the prevalence of fatigue post TBI (you really aren’t alone in this!):

http://www.msktc.org/tbi/factsheets/Fatigue-And-Traumatic-Brain-Injury

http://www.brainline.org/content/2010/02/fatigue-after-brain-injury-brainline-talks-with-dr-nathan-zasler_pageall.html

 

Regulating temperature after a brain injury

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.

Terminology Lesson: Symptoms

I remember being acutely unaware of post traumatic brain injury symptoms during Jason’s few months. Literally months where I wasn’t clear on what I was looking at. Doctors and friends would often tell me that what I thought were symptoms were actually my unfulfilled dreams of being a controlling wife.

Okay, they never used those words, more like “Husbands are just like that”. Because getting married would obviously change my husband more than his traumatic brain injury.

So here’s my list of symptoms that I wish I knew then. This may not be a complete list, but just the symptoms that were more relevant to Jason’s injuries. They are not listed in any order specifically.

  • Headaches, pressure in his head
  • Dizziness
  • Choking on some foods -also diagnosed as dysphagia
  • Inattention – when stimulus overwhelmed him physical symptoms (such as the choking) would increase
  • Sequencing issues – trouble deciding what order to do tasks at work or while cooking dinner etc.
  • Initiation – failure to start tasks without being asked/ordered
  • Due to initiation and sequencing issues needing to stay on a strict schedule
  • Cognitive fatigue
  • Taking longer than pre TBI to complete tasks
  • Preservation -the repeating of one activity
  • Fixating on certain tasks or activity
  • Concentration issues
  • Self awareness impairments (which makes monitoring these symptoms the duty of the spouse or support person)
  • Emotionally labile – some breakdowns, crying, anger, especially when cognitive fatigue kicks in
  • Difficulty making decisions
  • Difficulty seeing the outcomes of his decisions
  • Lying
  • Time management issues
  • Memory loss
  • Mild aphasia. Aphasia has a variety of sub categories as listed by the National Aphasia Association http://www.aphasia.org/aphasia-definitions/
  • Difficulty with change of plans
  • Lateral thinking limitations
  • Interrupting during conversations