One Brain's journey

Dr. Atila Turgay, one of the leading experts in Canada on ADD/ADHD passed away in April.  He had been Chief Of Staff at Toronto’s Scarborough Hospital, although recently he had returned to private practice.  He was also on the faculty of medicine at the University of Toronto.  You can read more about Dr. Turgay at Dr. Kenny Handelman’s blog here. I saw him just before he left his post at the hospital and set up his office at Davisville and Yonge in the heart of Toronto.  My reason for being there was a review of medication I had been prescribed for ADD since the physician who was currently writing the prescriptions had not originally either prescribed them nor done the diagnosis.  Dr. Turgay performed the shortest test I had ever encountered for the three aspects of working memory.  The first two were not uncommon.  He asked me to remember a string of seven numbers and then repeat them backwards.  He did a similar one for verbal working memory.  Then he sat right opposite me and asked me to observe him, without moving, until he asked me to replicate what he did with his fingers and hands.  What he did seamed simple enough.  His hands were reversed with one finger on one hand touching a finger on the other.  But when my turn came to replicate it I could not–even after a couple of tries.  I had seen Dr. Turgay describe this test in several lectures sponsored by the Attention Deficit Resource Network but this was my first opportunity to actually do it.  His conclusion, after these three short tests, was that I had an impairment in visual/non verbal working memory.  Some years ago I did a completed psycho-educational assessment valued at close to $2,000 and a similar component, lasting at least half an hour, had reached the same conclusion.

My visit only lasted a few minutes and the medical part of it was over before I knew it.  He concurred with the medication I was taking and with dosages and schedules.  Then he quizzed me on my background and interests, as it turned out, to see if I might be of service to the ADD/ADHD community.  It wasn’t his suggestion but this meeting was one of the reasons I started this blog.  I heard him speak on a couple of times and my appointment with him two years ago only lasted perhaps 20 minutes but I will miss him.  Not only was he a great resource to the ADD/ADHD community he was, in my experience, a kind and caring individual.

It was on reading his obituary and remembering his visual/non-verbal working memory test that led to a mini-ah ha moment.  I had always marveled that one of the profound and noticeable effects of even a small dose of ritalin would lead to a great improvement in my hand-writing.  I’m no expert but I would bet that there is a large component of visual/non-verbal working memory skill in handwriting.

I went through a long period, up until just two years ago, when I had a lot of trouble reading books–fiction not non-fiction. The difference being that with fiction you more or less have to read in a linear fashion or you get lost. Sometimes I would put a book down for a few days, or a week, and try to resume. Almost invariably I would have forgotten who the characters and what had happened up to the point I was trying to pick it up again. Non-fiction was different because you don’t have to read in a linear fashion. AS—pointed out in Information Anxiety some decades ago you can jump in anywhere and read until you are bored and then jump somewhere else.

I had come to the conclusion that my ADD was getting worse and I had lost the ability to read long-form narratives. Having read about about a new book, The Shallows: What The Internet Is Doing To Our Brains I’m now not so sure about the ADD being the culprit.   Author Nicholas Carr says that the Internet has changed our brains to the the point where we can’t concentrate on most deep-thinking tasks without seeking distractions.  See The Glove and Mail website here for more about Carr’s thesis.

I feel a bit vindicated that the problem may be our modern world and not the disorder I thought I had wrestled into some form of manageability.  One thing I do know, as I am now in the middle of the third novel this year, is that things started to change two years ago. Why then?  I was making frequent trips to a lodge in Algonquin Park where the only distractions were the forest, the other guests, the animals, the odd canoe and some of the best cooking I have ever tasted.  I did take up my notebook computer and once every evening I would watch a DVD on it. Most of the rest of the time I read novels. I knocked off about four that summer and although I only went up half the time last summer I completed a couple more.  Two summers ago those novels were the first I had read to completion in more than a decade. With no distractions it seemed my brain was content to revert to a state where it didn’t require new and novel distractions every couple of minutes.

Now don’t get me wrong I’m not complaining and I don’t think the Internet is the end of the world as we know it. I’m just observing. I’m also aware of a quote from Canada’s premier literary critic Northrup Frye who said,”The book is the most technologically advanced communications medium ever invented because it moves at precisely the speed of the reader.”  Frye died before the Internet reached its current level of penetration into our lives. I wonder if he would agree with those words today.

Carr says that long-form narratives are not the way our brains have always worked.  To the contrary, according to him we are programed to be easily distracted.  He goes on to say that gathering information from Google or other methods on the Internet, take in information from many different sources at a fairly shallow level and the information never makes the transition in our brains from short-term memory to long-term.  With print there are no distractions and we get much more information more deeply into the brain and thus into long-term memory.  That information can then connect in our brains to other information, other material we have read, or even with our own experience.  Using the Internet  information is held and manipulated mostly in short-term or working memory but then it is gone or is not available to connect with our own experience or learning.  In other words, I guess, we don’t learn at depth.

When asked how he managed to keep from being distracted enough to write the book, Carr said it took him two weeks before he could overcome the panic of not checking his email or other activities on his computer.

What’s my point? Well it comes back to the up side and the down side of neuroplasticity again. If you think reading long-form narratives is a good thing then the Internet can change your brain for the worse.  The up side is that you can change back if circumstances, or desires, warrant it.

As promised, I will describe some other elements from the peer coaching process that I began in the last post.

The next section we work on after “ADD moments and victories” is described as “working on exercises”.  In this section, anyone in the group who has taken on a longer project shares on their progress.  The longer project could be setting life goals, or a budget, or following a process found on the Internet, or elsewhere, that seems useful to that individual.  This is followed by “report on success with goals set at the last meeting”.  Here we talk about progress or success, stumbling blocks or any readjustment in plans  to accommodate obstacles.  I should point out that there is no interchange in these sections.  Participants do not comment or ask questions until the next section which we call “requests for feedback”.  Then and only then do we ask questions or comment on something someone has said and only on the part on which they have specifically requested feedback.  Our exprience tells us that we are sometimes prone to make comments or criticize other participants efforts and lose sight of our own activities.  The final section is “plans for the period until the next meeting” and this section is divided into action items, with notations for what is to be done, how, and by when.

There have been people arriving on our doorstep who share just about experiences–mostly negative.  Nothing is said to them, but after awhile they either notice that no one else is sharing in the same manner or they run out of things to say and drift away.  We call our process peer coaching for a reason.  It is not a support group in the usual sense.

Peer coaching is not a replacement for the personal coach.  The two founders of the group both used a coach for a period of time and benefited from it.  Peer coaching is an alternative…perhaps even a supplement.  If you were to ask me, I would probably say that it is not as effective as personal coaching but it is a lot less expensive.  We are still fine tuning the process.  What we don’t have is a way of checking in as most personal coaches do but hopefully we will find a way to do this and experience the same benefits.  What I do like about peer coaching is the sense of independence and this may sound weird since we do it as a group.  The key feature is that there is no professional in charge.  We are in charge and this idea can be quite liberating.

When I was finally diagnosed with ADHD, a process that took a couple of months, I asked the psychiatrist, “Now what?”

He said, “I’m going to start you on some medication trials, personally I would advise you to take a martial art and I would look at getting a personal coach.”

When I inquired further about coaching he gave me a name and phone number and I called the person and set up a first meeting.  The cost at the time, I believe was around $500 a month, which took me aback a bit but within a month or two my earnings were up to the point where it wasn’t too much of a burden.  After about three months though, I started to have second thoughts and in spite of the coach’s suggestion that if I followed the process more closely more earnings would improve, I decided to take a break.  I never went back although I did try to find another coach a few years later.  At that time there were only a few in Toronto that specialized in helping clients who had ADHD.  One took weeks to return a phone call and then suggested, by email, that I call at a specific time and when I did there was no answer.  I decided that he probably also had ADHD and could benefit from his own coach.  I then discussed the matter with a friend and mutual sufferer and in the course of our conversation we came to the conclusion that we both had enough coaching experience to try coaching each other and set up a process to do that and invited others to join us in the experiment in weekly meetings.  We call it peer coaching.  That was some years ago and although we now meet bi-weekly we are still going strong and last meeting added two new people to the group.

So what do we do?  There is actually a fairly rigorous process that we set up.  The meeting begins with someone volunteering to chair the meeting and there is a printed agenda. The meeting begins with each attendant invited by the chair to share on a personal update since the last meeting, new information which any of us might have come across concerning ADHD or anything else in neuroscience that might seem helpful and then what has become one of the most important aspects of the meeting although it wasn’t planned to be that.  We share what we call ADHD moments and victories. This could be any of the things that make our lives miserable from losing the keys to our front door, or the car, to getting the time wrong for an appointment.  What tends to happen is that these little tragedies  have a brighter side in that we get to delight out companions with the stories at out next meeting.  Victories could mean something such as finding a device that attaches to your keychain that beeps when you clap your hands or getting the time wrong for an medical appointment and calling the office to apologize and asking if they might be able to accommodate you later in the day.

I will describe the other elements of peer coaching in my next post and in a subsequent post try to explain why the psychiatrist that diagnosed me suggested I take a martial art.

Ever so often my life gets thrown out of whack by a car that won’t start or a check not received or even just some bad weather that seems to be preventing me from whatever personal plan I am trying to execute at the moment. I get angry or depressed or some similar expression of unsettledness. And then, hopefully before too much time has elapsed, I remember what happened to my friend Brendan. He had a long stay in the hospital with stomach cancer and, after most of his digestive system was removed his friends and family were warned that the end was near. It wasn’t and Brendan survived. As he made the gradual re-entrance back into his life there was one particular thing that bothered him for some time and it revolved around some person, any person, describing how their day was ruined because their car wouldn’t start or some other such annoyance. Brendan told me this on my last visit to London where he lives and I vowed that I would try not to ever be one of those people.

I found that, with a little practice, I could put such an occurrence aside and move on with life most of the time. It echoed Abraham Lincoln’s comment that most people are about as happy as they choose to be. The promise of neuroplasticity is that your can exercise some control over what your brain does. Now that’s not to say that it is easy. It isn’t but it is possible. The promise too is that not only can you change your brain you can change it by yourself.

Last winter, one 20 degrees-below-zero night, I was on my way to meet some people and, after driving a few blocks in my car, it started to run, roughly, on three cylinders with a lot of noise and smoke. I immediately drove home parked it and called the friend I was supposed to pick up at her home to say I couldn’t make it. She said she wanted to see the movie we and our friends had planned to see and was going to go anyway–on public transit. To my own amusement, I found myself feeling disappointed that she wasn’t going to just spend the evening at home as I thought I was about to do. As I was on the phone, talking to her, standing on the street, my local bus appeared in the distance, headed to a stop right where I was standing. I thought of Brendan, and how I had resolved not to have a day ruined by just the sort of occurrence I was experiencing. I told my friend I would meet her at the theatre and got on the bus and turned my attention to how I would complete the journey; meet up with her and our friends. It was magic. It worked and really wasn’t that difficult. After the movie our friends drove us home. We had seen the film we had intended to see, spent time with good company and the only bump in all of this was that my car still didn’t work.

Arriving home I typed the symptoms of what the car was doing into Google, fearing that it was something really expensive, my head now back into the problem and what I got back was that the symptoms matched that of a part that I had received a recall letter for but hadn’t got around to attending to.

The next day I called my auto service and had the car towed to the dealership and a few hours later they called to say the part was repaired under the recall as I had suspected. They even came, picked me up and drove me to the dealership to retrieve my car.

I try to remember this not just when my car won’t start or run right but whenever there is any kind of glitch in my plans and try to ask myself the question, “Do I want to deal with the problem the best I can and get on with my day?” Life’s too short, as they say. But more importantly, I know I have it within me to change the way I react to such event. A good friend once asked me the question: “How many of the things you have worried about have actually happened?”

The humorous answer is: “Hardly any of them and so I guess worrying about them has a positive effect.” But the true answer is just the first part of that statement…hardly any of them. How upset would I have been about my car breaking down had I known how easily it would be dealt with? Not much. I’m at a point in my life where I can see the end of it and how I spent that time is incredibly important. I want that time to be filled with moments with my friends enjoying mutual interests not stuck at home brooding about a broken car.