Sep 222009
 

One day I walked into my psychologist’s office, sat in the chair across from him at his desk, looked up and into his eyes, and before he could mask them, I knew. I knew. I knew. I knew. He could no longer help me. The medical model had long since discharged me after helping me with the basics. The insurance company was more interested in throwing thousands of dollars at licensed doctors to say I’m a liar than in helping me. And now the only one left to give me back my mind had reached his limit.

The dark cloud that sat around my head, obscuring my perspective of the world, keeping me from being in the world, seemed to be a permanent part of me now. I was very, very angry. That’s pretty much all I could feel as an emotion in my usual state of no emotion. That and irritation. The anger too was the only thing to fire up my brain enough to use it. And that’s what I did. I spent another 5 months searching for help somewhere, somehow, on Google 5 minutes, sometimes 15 minutes, a day before I conked out from exhaustion. And I did it all over again the next day, probably the very same search term with the very same results, and I didn’t know it. This could not be my fate, was the desperate thought that drove me.

One day, I turned on my computer, launched Firefox, looked at the Google search box and thought. Hard. For years now, I had often thought that my brain injury felt like ADD. Maybe instead of searching for brain injury help, I should search for ADD. I don’t know if this was the first day I stopped doing the insane thing of searching for brain injury treatment and expecting to find it when I hadn’t before, and started searching for ADD treatments. But that day I did; I found my answer: the ADD Centre.

I wrote down the phone number, sat next to the phone with notebook and pencil at hand, and dialled. (All my phones have spiral-bound notebooks next to them with a pencil, a tip I learnt when still in rehab for being able to follow and later look up conversations so I at least sounded like I remembered stuff.) To my utter shock, the medical doctor who co-runs the clinic answered, not the voice mail machine. I learnt later that him answering was a rare thing. But he was exactly the right person for me to speak to. That was my first clue I was on the right track.

He told me that they had not treated many with closed head injuries like me. Their primary clients were those with ADD. But they had had some success with brain injuries like mine, and he was very interested in seeing what they could do for me. It took all my effort to focus on the conversation, yet I felt even more that this was the opportunity I was looking for. And when he told me that a Saudi family suddenly having to cancel meant they had an opening for an assessment only 3 weeks hence, I knew that I had hit pay dirt. I believed that God had finally made an opening for me to get help. About damn time too.

The ADD Centre is why I’m here now. I don’t mean physically, I mean able to write, able to blog, able to engage with people on Flickr and Twitter, able to take photographs again. Unlike the medical model (or even the psychologist) who teach compensating strategies and whose methods only temporarily boost brain performance, the ADD Centre’s protocols actually treat the brain. They stimulate it, teach it, get those snoozy areas to work again.

This approach is radical.

Brain injuries seem to be the one type of injury not treated, beyond immediate surgical repair that is. Instead, doctors and therapists teach you to compensate for it. In contrast, the ADD Centre went in the natural direction, the direction of healing. Like any great medical explorer, they took their expertise in one brain dysfunction and applied it to another kind of brain problem and ended up saving my life.

I don’t think I could have lived the rest of my life with that dark cotton batting round my head, with no curiosity, with no ability to make a decision, with no emotion except when my brain suddenly took off on a roller coaster, dragging me with it, before hitting the flats again. I couldn’t have lived with attentional abilities so impaired that I thought listening to someone for 15 straight minutes was a bit much. One was more like it. I couldn’t stand the fact that reading was something I’d come to fear, me who can’t remember a time I didn’t read. I was so slow, frozen molasses moved faster than my brain thought. And worst of all, despite having relearnt how to write, I still could not finish my book. Writing is much more than the simple act of writing.

Though beyond exhausted, I knew I had found my salvation at the end of the assessment. Their assessment comprises several tests, the biggest one a 19-point EEG, a much more comprehensive overall look at the brain than the kind of tests the doctors and therapists had done. These ones got to the heart of the matter. The computer analyses the EEG readings — one program even creates a 3D model of the brain that looks just like an MRI — and then they devise a treatment plan for brain biofeedback. (Can you believe that it was my first comprehensive non-sleep-study EEG. No doc had thought to do one on me before, just scans.) It is a long process, their way, but brain healing is not swift, even when stimulated. They assessed me several times. And every time, the objective tests showed remarkable improvement. It wasn’t just me being optimistic. It took about 2 months before I started noticing any improvement, and as usual it was in my speech first. And then my emotions woke up. And then I lost my fear of reading (though reading remains problematic — they weren’t sure they’d be able to help that at all, but they were able to tell me why I was having issues, unlike all the docs and medical therapists — but then that’s why EEGs are so good).

I underwent 2 years of brain biofeedback, with a summer off in between. It’s not for the faint of heart, that’s for sure. Basically you play games on the computer with your brain, not your hands, with the idea being you want to stimulate certain brain waves in certain parts of the brain. Or you want to normalize coherence between the different sections of the brain. They worked on many parts of my brain since, being in a car crash with 3 impacts, I had diffuse injuries. After each session, I’d drag myself home, suck back an uncharacteristic-for-me can of pop (straight glucose to my brain), and sit unmoving in front of the TV for hours, I was so tired. But it was worth it. Still, after 2 years, though I needed more treatment, I ran out of steam and money. That was 2 years ago. I still have functional issues. I look and sound compis mentis, but it is an invisible problem for a reason. I suppose it’s like the difference between the knowledge exams of university and competency exams for a trade license. You may sound like you know what you’re doing, but having knowledge or smarts doesn’t mean you can do.

But things are not static. As they had predicted, their brain biofeedback has stimulated spontaneous healing at an accelerated rate. Constant change like that makes life a bit difficult to navigate and predict. But I gotta tell you, it is awesome!

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  • Nice article. Just spent 3 years with insurance companies calling me, in their roundabout ways, a liar… Long story. And 24 years ago I was told I would never “read my lips, I mean never…” walk again. Or talk properly. I do both. And when I had my 3 sons tested for ADD (which was positive) I realized how similar it was to me? The same psychologist did the testing?! Anyway, I’m sure there are thousands just like us and I would so love to be in touch? Hence my website – which I hope will help many others. Good luck and I would love to hear from you.

  • Nice article. Just spent 3 years with insurance companies calling me, in their roundabout ways, a liar… Long story. And 24 years ago I was told I would never “read my lips, I mean never…” walk again. Or talk properly. I do both. And when I had my 3 sons tested for ADD (which was positive) I realized how similar it was to me? The same psychologist did the testing?! Anyway, I’m sure there are thousands just like us and I would so love to be in touch? Hence my website – which I hope will help many others. Good luck and I would love to hear from you.

  • Could I use this blog? It would make a wonderful ‘inspiration’ story. And I wonder if the people who did your brain biofeedback would want to do an article? And become ReBuildingYou’s resident biofeedback therapist? If you’re interested, I can tell you more? Julie

  • Could I use this blog? It would make a wonderful ‘inspiration’ story. And I wonder if the people who did your brain biofeedback would want to do an article? And become ReBuildingYou’s resident biofeedback therapist? If you’re interested, I can tell you more? Julie

  • Shireen

    Insurance companies sure do excel in that.

    I am amazed that therapists haven’t yet noticed how brain injury in some ways mimics ADD, attentional deficit disorder. After all, the problems with attention in brain injury are, well, attention deficits.

    I will check out your website. Thank you for stopping by and sharing!

  • Daly de Gagne

    Shireen, great article!

    I have looked to brain injury information for my ADHD, and found it helpful. So I think this confirms your notion that we need to look at more than what is immediately in front of us – or in the case of some professionals – the label with which they’re fixated at the moment.

    I had some diagnostic testing done by the head of health psychology at our major tertiary care hospital. He said the tests didn’t show ADHD, but something else that was unidentifiable. I pointed out one of my big issues is executive function, and he said the tests showed I am OK in that area. I tried to explain, remembering my first year psychology, that psychological tests only measure what they measure, regardless of the statements made otherwise. I am the guy who can’t make choices, who screws up decision making and implementation, and by all other def’ns of executive function has issues in that area. But sometimes it is hard to come between a clinical psychologist and their precious tests.

    In my work as a therapist, I do a routine screen for traumatic brain injury with all new patients, and I keep an eye open for TBI with all my patients because I know that sometimes people do not always remember their injuries when I ask the screening questions in the initial sessions.

    The motto of the traumatic brain injury movement is “whatever it takes,” That should be the motto of therapists and others working with brain injury, psychological issues, mental health issues, etc. To do otherwise is to let our patients down, and to forfeit the opportunity to work with them to overcome suffering.

    You wrote in a recent article about the joy of being listened to by your doctor and trainer. While I pride myself in listening well, that article caused me to reflect on recent meetings with patients, asking myself whether I have consistently listened as well as I should. Listening is critical; your experiences, much more than mine, testify to the havoc that professionals in this field cause when they don’t listen, and become more complacent.

    Daly

  • Daly de Gagne

    Shireen, great article!

    I have looked to brain injury information for my ADHD, and found it helpful. So I think this confirms your notion that we need to look at more than what is immediately in front of us – or in the case of some professionals – the label with which they’re fixated at the moment.

    I had some diagnostic testing done by the head of health psychology at our major tertiary care hospital. He said the tests didn’t show ADHD, but something else that was unidentifiable. I pointed out one of my big issues is executive function, and he said the tests showed I am OK in that area. I tried to explain, remembering my first year psychology, that psychological tests only measure what they measure, regardless of the statements made otherwise. I am the guy who can’t make choices, who screws up decision making and implementation, and by all other def’ns of executive function has issues in that area. But sometimes it is hard to come between a clinical psychologist and their precious tests.

    In my work as a therapist, I do a routine screen for traumatic brain injury with all new patients, and I keep an eye open for TBI with all my patients because I know that sometimes people do not always remember their injuries when I ask the screening questions in the initial sessions.

    The motto of the traumatic brain injury movement is “whatever it takes,” That should be the motto of therapists and others working with brain injury, psychological issues, mental health issues, etc. To do otherwise is to let our patients down, and to forfeit the opportunity to work with them to overcome suffering.

    You wrote in a recent article about the joy of being listened to by your doctor and trainer. While I pride myself in listening well, that article caused me to reflect on recent meetings with patients, asking myself whether I have consistently listened as well as I should. Listening is critical; your experiences, much more than mine, testify to the havoc that professionals in this field cause when they don’t listen, and become more complacent.

    Daly

  • I have the same med issues with type 2 and rapid heartbeat.
    Post stroke. Had the add kind of and the neuro shrink put me on meds for alizheimers, which we ok. But the real problem showed up about 2 years ago.
    FTD..which is what you have when you in your mid fifties and can’t process and organize info.
    Head south to Rochester MN..Mayo Clinic..they have a new mri that can diagnose this stuff. The shrinks are somewhat weak and basically push drugs. But the neuro shrinks get it.
    HOWEVER much as you will love being in Florida, these guys will kill ya.

  • I have the same med issues with type 2 and rapid heartbeat.
    Post stroke. Had the add kind of and the neuro shrink put me on meds for alizheimers, which we ok. But the real problem showed up about 2 years ago.
    FTD..which is what you have when you in your mid fifties and can’t process and organize info.
    Head south to Rochester MN..Mayo Clinic..they have a new mri that can diagnose this stuff. The shrinks are somewhat weak and basically push drugs. But the neuro shrinks get it.
    HOWEVER much as you will love being in Florida, these guys will kill ya.

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  • Olive

    Excellent article, diid the centre do an article on the ADD centre? are you still in touch with Julie?

  • Olive

    Excellent article, diid the centre do an article on the ADD centre? are you still in touch with Julie?

  • Shireen

    I don’t know. I forgot all about it!

  • Shireen

    I don’t know. I forgot all about it!

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