Good News: My Book is OUT!!

At long last, my book, Mild Traumatic Brain Injury: The Guidebook, is published and available at Lulu.com. (You can also find it on Amazon.) Here's the blurb:

Mild Traumatic Brain Injury: The Guidebook is an indispensable resource for people living with the consequences of Mild Traumatic Brain Injury (MTBI). In this concise, comprehensive manual, Cognitive Rehabilitation Specialist Mary Lou Acimovic draws from over thirty years of clinical experience to validate and demystify the symptoms of MTBI, offering a unique approach to treatment designed to educate, empower, and inspire. The mission: Help the millions of people struggling with this potentially devastating condition understand their injuries and regain control their lives. It is a guide to recovery.

Pretty cool, huh?! Get it HERE

The "Ultimate Empathy Experience"

Why the radio silence on this blog? Well, I'll tell you: In August 2010, I was felled by a virus that went into my spine, causing swelling in the c5/c6 vertebrae. The culprit: West Nile. That's right, a tiny little mosquito got the best of me, and now I'm going through what my family and I are calling "The Ultimate Empathy Experience" as I embark on my own journey of neurological recovery.

As a result of the nerve damage, I have limited use of my arms (my left is totally gimpy; my right is a little bit better), and I am, as my husband says, "weak as a kitten." Now that I'm out of the hospital, I have physical therapy and occupational therapy five days a week, and I'm dabbling in alternative therapies like acupuncture and hyperbaric oxygen. I feel totally helpless. (My daughter is typing this post for me.)

On an intellectual level, I know from working with Mild Traumatic Brain Injury clients that the Road to Recovery is long, progress is subtle, and patience is critical. But man, are these things hard to accept. Like so many of my clients over the years, I want a miracle. I want to wake up one morning and have everything be back to the way it was "Before." The advice I've given so many clients over the last thirty-five years—"Don't push yourself too hard!" "Adjust your expectations!" "A good attitude goes a long way!"—seems extra hard to swallow, and yet, I'm choking it down. All in all, the experience has validated a lot of the things I understood as a clinician about this type of recovery.

I wrote about many of these things in my NEW book, Mild Traumatic Brain Injury: The Guidebook. In a brilliant stroke of irony, I received the first published copy while I was an in-patient at Boulder Community Hospital's Mapleton Rehabilitation Center, where I worked as a cognitive rehabilitation specialist for thirteen years. Life is strange, isn't it?

BUY THE BOOK HERE!!!

I do that all the time…

Have you heard this one? You complain about a mistake you made or something you forgot to do, and your friend laughs it off, saying, "oh, I do that all the time!" Infuriating, right?

Here's the deal: people can relate to the problem because these faux pas do happen occasionally to most people. But, I can promise you, if it was indeed happening all the time people would be concerned. They'd be coming in to my office or going to see their psychologist. They would recognize that something was wrong. Because, with MTBI, it's a matter of degree and impact on functioning. Sure, it used to happen from time to time but now it occurs several times a day. Most of my clients were pretty darned efficient and really didn't make too many mistakes of this sort. Now, they just plain have trouble getting anything done. Of course they're upset!

I think people who respond by saying "that happens to me all the time" may be well-intentioned, trying to reassure you, or maybe in some sort of weird denial. And if really pressed, they'd admit that they're not really messing up "all the time." But, when you're asking for support, it's not helpful.

A psychologist (I think) by the name of Lees-Haley did some studies in the mid-nineties in which he gave questionnaires to non-brain injured people, asking them if they experienced things like anxiety, fatigue, sleep problems, etc. A lot of them said "yes". Unfortunately, these studies have been used a lot to show that people with MTBI are just complainers or making up symptoms because they are involved in lawsuits. But, again, although we can all relate to occasional problems with forgetfulness (and, yes, it does increase with age), the cognitive problems people have with MTBI are much worse and represent a huge change compared with pre-accident functioning.

So when someone says, "that's normal" just smile and say, "not for me!"

Contact me!

If you have a question or would like to hear about a specific topic related to mild traumatic brain injury, you can shoot me an e-mail and my new dedicated gmail address!! mtbitheguidebook@gmail.com

I look forward to hearing from you!

What is a mild traumatic brain injury, anyway?

I've been thinking about the title of my book (which is now with the printer! Just waiting for little details, like an index …). Who should read it? What do I mean by mild? I'm a little concerned that folks will hesitate to dig in if they have not been diagnosed as "mild" or if they have had a more (medically) severe injury but are trying to function in the world and are having some of the problems that I address in the book.

So, I want to talk a bit about the labels we use in the medical community to describe brain injuries.

When a person in first injured, the doctor will evaluate the severity based on several criteria.

First, loss of consciousness: A Mild traumatic brain injury involves loss of consciousness of 0–30 minutes, sometimes none at all. Moderate: LOC from 30–24 hours. Severe: >24 hours. The problem with this designation is that sometimes the patient is heavily sedated because of other injuries. How do we really know how long the loss of consciousness would be if nothing were done? The medical procedures can be life saving but they alter what the brain would do if left alone.

A second guideline: post-traumatic amnesia which refers to the length of time after the brain injury for which the person has no memory. Again, given medical procedures, this can be misleading although it continues to be a diagnostic standard. Mild: PTA of 1 day. Moderate: PTA 1–7 days. Severe: > 7 days. If a person has sustained a relatively mild brain injury, but has physical injuries requiring sedation, and the medication is something like versed which essentially wipes out memory (did you ever have a colonoscopy? right!), is it really memory loss or the effects of the medication?

You may have heard of the Glasgow Coma Scale. This is a numerical scale which describes the stages of cognitive recovery from a severe brain injury—very useful. Helps us monitor progress and predict recovery based on the stage and the rate the patient proceeds up the scale. But, it's not very useful for mild traumatic brain injury: 13–15 means "a little disoriented but pretty much OK". And as, you know, if you have an injury, you're not OK.

So, that brings us to something useful: a functional scale. My colleagues and I (at Mapleton Rehabilitation in Boulder, Colorado) argued that what's important is the level of functioning regardless of the medical severity of the initial brain injury. There are people who've had absolutely horrific brain injuries by all definitions who have resolved to "mild" functionally. For all practical purposed, they have resumed a high degree of participation in all areas of their lives. They are back to work, managing the family, have finished school, riding their bikes, etc. etc. They may have some minor cognitive "inconveniences" and they can certainly benefit from the information in the book.

On the other hand, there are those folks who have had a "ding" in a motor vehicle accident or a series of "little concussions" playing football over the years, but seem to be fine from a medical perspective. Within this category, however, there are people who have not been able to go back to work; or have become complete "ditzes", or emotional messes; or haven't been able to go back to any of their previous activities. At Mapleton, we classified these cases as functionally moderate to severe and our treatment was specifically focused on helping them resolve these issues. You see, medically, they had been "cleared" but they still needed a lot of help to get back on their feet.

When you read the book, you may notice that I avoid the word "survivor". This is deliberate. A lot of people refer to themselves as survivors of MTBI, and that's fine. Most of the people I now see have certainly been through a traumatic experience; it's true. Most of them were never medically "in danger". I think, sometimes, that others look askance at a person who looks "just fine" but is referring to himself as a survivor ("where's the scar?" "you don't talk/walk funny."). It can add to the misperception. Sometimes I think "survivor" applies more to the recovery from MTBI than the actual medically diagnosed injury. Recovery from the assault to the ego, the self-confidence, the attitudes of others … and, yes, people do survive this!

Ear plugs: fer 'em or agin 'em

A good way to get a lively discussion going with a doctor is to request he write a prescription for ear filters for a person with mild traumatic brain injury. Often the reaction is pretty dramatic. "You're going to make her dependent on ear plugs! She just needs to improve her tolerance for noise!"

I think this approach fails to take in to consideration the effect of over-stimulation on a person with mild traumatic brain injury and how it limits his or her ability to re-engage with the world. It's true that some people are naturally more sensitive to noise than others. As I mentioned in the previous post, we depend upon the brain to adjust to auditory input so that it is tolerable; otherwise we'd never venture into a busy restaurant or a football stadium.

But when a person has a mild traumatic brain injury, noise is more than just annoying. It can be painful. It can cause extreme anxiety. And this happens all the time: when driving, in the classroom, when working on the computer ("I can hear the sound of the drive. It's so distracting. I've developed hearing like a dog!").

So, here's the deal. Of course the eventual goal is to help a person improve tolerance for noise. But, at first, I think we have to reduce input to the brain while it heals. Otherwise too much effort will be expended trying to react to the stimulation. The result is anxiety and avoidance of certain places and situation. I'm pretty sure it interferes with healing. When we fit a person with ear filters, they report an immediate reduction in anxiety. They are able to go out in public again. Teachers report that the noise in the classroom no longer drives them crazy. I always suggest that people try to go without the filters sometimes to gradually increase their tolerance for noise. Since people generally would prefer not to have to wear them, they go along with this plan.

I like the product made by Westone. They make a custom fitted ear filter with various degrees of protection: 8 dB for low level ambient noise; 15 dB for places like stores, restaurants; 25 dB for situations where people really need most distracting noise reduced, and "total blocks" for sleep (I use these -- I can hear really important sounds but no longer am awakened by cars going by on the street: a left over from the days my kids were out past my bedtime). They're called "musicians earplugs" or "defend ears" and, yes, "normal" people use them to reduce auditory input.

The downside: they have to be individually molded by a technician and they can get pricey. But, I have been able to convince some insurance companies to cover the cost when I explain how effective the ear filters are.

Worth it? A lot of clients would say emphatically "YES".

Hypersensitivity. Lights are too bright. Noise is too loud. You avoid certain places because they are just too uncomfortable. Painful even. Sure, some people are naturally more sensitive than others. But why, with MTBI, is this such a problem?

Another concept from Psych 101! Remember "adaptation"? Here's what's normal: You walk in to a crowded bar on Friday night. You's first impression: "Whoa, it's loud in here!" But rather quickly your brain adjusts. The background noise morphs almost to silence as you focus on a conversation with your friends.

What has happened is that your brain has decided it doesn't have to pay attention to the "noise". It has automatically, quickly, screened out information which isn't immediately relevant. But, wait, there's more! The mental antennae are out: what if something relevant happens? Your name is mentioned in the crowd. Something interesting is said in the group next to you. Your brain is on the lookout for interesting tidbits, almost as if it has a list of what you need to be notified about. When that happens, your attention will shift, bring the morsel out of the soup up to the surface without letting everything else in.

What if this automatic filtering process doesn't happen because the brain isn't processing information as quickly and efficiently? This is precisely the issue with MTBI. The result: overstimulation. People with MTBI often find they have to avoid some places or situations because this basic brain function, adaptation, doesn't occur.

The good news is that it should get better with time and you can do things to manage the problem. The first step is to understand why it's happening.

You learn things in psychology 101 that are actually useful even if you don't become a shrink. Because, of course, psychology is the study of brain basics. Here's something that will ring a bell:

Intermittent reinforcement. Remember the three little rats in their cages pressing levers? The first rat never got a food pellet, so he quit pressing the lever. The second rat always got a food pellet, so he lost interest and also quit pushing the lever. Rat #3, however, sometimes got a food pellet, and sometimes didn't. He just kept on pushing that lever. The lesson: intermittent reinforcement is the most powerful kind.

I remind clients of this when they are having memory issues: specifically sometimes they remember and sometimes they don't. People with actual damage to the brain which causes no possible memory storage use memory systems all the time because they never remember without help. People without MTBI generally can rely on themselves to remember most of the time ("I used to have a really good memory!"). If you have an MTBI, however, sometimes that memory is pretty good, sometimes it fails entirely. This is really frustrating.

And when your memory actually works as it's supposed to, you are (altogether now!) intermittently reinforced! Yay! But this makes it harder to use those memory strategies and systems your cognitive therapist insists on. Because you don't always need them. You resist. You say, "Oh, I'll remember that." And it's embarrassing when you don't.

This is why I tell my clients to be more like Rat A. Act as if you don't have a memory, particularly when it's important. That's why we tell you to write it down. Safety net.

I went along with a client to an IME last week. That's an independent medical examination for those of you who haven't had the pleasure...Your insurance company has a right to request these evaluations to determine if the treatment you are receiving is appropriate (the actual terminology is "reasonable, necessary, and accident related"; this gives them lots of room to differ with your own doctor's opinion). This doc was pretty good, seemed to be a patient advocate.

But what was interesting to me was that the insurance company sent him pictures of the car! And he said, "well, it doesn't look like there was much damage to your car" as if this has any bearing on the person inside the car. Lawyers refer to these sorts of accidents as "low impact" even though there really isn't any way of telling if the person inside was shaken up.

A few years ago, there was a segment on 60 minutes that must have been sponsored by the insurance industry that showed an "experiment" where people were sitting in a car, holding a cup of coffee, then purposely hit by another car. Surprise! Not only were they not injured but they didn't even spill the coffee! So, obviously, it's not possible to be injured in low impact accidents.

But the reality is that people do get injured in low impact accidents. Fairly often. The point is that there are a lot of variables. How was the person sitting? How long is the persons neck? Was she bracing (like the people in the "experiment") or taken by surprise? Did the impact cause her to hit the headrest sharply? Even accident reconstruction engineers have a hard time coming up with these facts.

Do you remember the old Volvo ads: they showed a crumpled front end to prove how safe the cars are. The car absorbed the forces! Now, I'm not a physicist, but my friend, Joe, who is, commented once: "the forces have to go somewhere." And if the car doesn't absorb some of them, doesn't it make sense that they might radiate through a body sitting in the car (soft tissue, brain, jaw -- uh oh)? Kind of like an earthquake.

Once I "bumped" a car that had stopped sharply in front of me. No damage to either vehicle. But when I got back in the car, I saw that a heavy ceramic coffee mug in the cup holder had shattered. Not that I needed convincing. But sometimes I use it as an example to illustrate the point.

while waiting for the book!

Getting the book ready to print has taken much longer than I imagined it would. Somehow I thought all that stream of conscious writing would magically coalesce into a coherent masterpiece. Anyone who's done this will tell you it ain't so!

While waiting for it to come together (and it will before you know it), I thought I'd write some thoughts as things come up for my clients.

I've been talking to people about "stupid mistakes". Of course, we all make stupid mistakes and that's often what we remember about our day ("I discovered a cure for cancer. Helped a bunch of children learn to read. Planted a marvelous garden. But wait until I tell you the STOOPID thing I did!") That's what we focus on, right?

When people are recovering from MTBI, there are phases when they seem to make a lot more of these stupid mistakes. I think it's because they're actually getting better, doing more, moving faster in in their daily activities. Exceeding the resources available to keep track of what they're doing. (You'll read more about this in the book.)

People forget more often. Put the cereal in the frig, the milk in the cabinet. Drop things more often. Maybe trip (even fall). It feels as if they're getting worse. But actually, they're just moving too fast, at this point, for the system to keep up.

I tell them, slow down a bit. Be a little more conscious of what you're doing. Maybe cut a few things out. They don't like to hear it but it works!

Coming Soon: Mild Traumatic Brain Injury: The Guidebook

I have written Mild Traumatic Brain Injury: The Guidebook for everyone living with the consequences of mild traumatic brain injury. If this has happened to you, you know it can be scary, confusing, frustrating not only figuring out how to get through your day but trying to find someone who understands what's going on.

I am a cognitive rehabilitation specialist. Over the last 30+ years I have met with hundreds of people who have had concussions. Some have been injured recently. Others have been struggling alone for months or even years. After we talk they say: "Put that in the book!" or "I wish I'd known this earlier!" or "Why didn't anyone tell me this?!"

Right now, I'm trying to figure out how to get my manuscript published and out there as quickly as possible. Hopefully, it will be ready in June.