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Thread: Extreme science nerd with TS here...

  1. #1
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    Default Extreme science nerd with TS here...

    Hello!

    I'm a 37-year old guy who was recently diagnosed with TS and re-diagnosed with ADHD. The original diagnosis of ADHD was when I was a kid, but I thought I grew out of it because I was able to get through an undergraduate education and go on to try to earn a PhD in cellular and molecular biology. I got a neurological work-up five years ago because I was having trouble getting through graduate school and my problems were so general that I was not quite sure what to do. I ended up losing a science career over it because the combined effects made me less competitive in what is a very competitive environment that drives "regular folks" to neglect family and more. I'm still trying to figure out what to do with my life.

    But a loss like that can drive a person and in my case I have spent a huge chunk of the last five years teaching myself some neurobiology, neuroanatomy, and psychology so that I can interact with the scientific literature on TS at it's own level. I've become a bit obsessed with figuring out "what TS is" and "what ADHD is" and it's been worth it from the perspective of getting a good understanding of what brains do on a general human level. You can read about anything in brain science without running into everything and everyone else.

    I'm hoping that I can be useful around here and love to talk about what I have learned so if anyone has any questions about anything in TS, brain science, or science in general I would be happy to let someone pick my brain to see if there is anything useful in there.

  2. #2
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    Default Re: Extreme science nerd with TS here...

    Welcome to the Forum Flutterguy and thanks for the perspectives you added to the thread on Meeting the Basal Ganglia.

    While most of our members are families and individuals learning ways to live with and manage their Tourette symptoms, your technical knowledge should help in providing some additional insights into the mechanisms that are at the root of our disorder.

    Have you attended any of the conferences of TSA or related Tourette presentations where you can gain the perspectives of other scientists.

    You know, you have one of the great Tourette Guru's and CBIT at Texas A&M, Dr. Douglas Woods...what's that..about 100 miles away from Austin?

    If you can catch one of his presentations, I think you would thoroughl enjoy it.

    Looking forward to your Forum participation!


  3. #3
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    Default Re: Extreme science nerd with TS here...

    Thanks Steve!

    It is true that I can start out a bit too technical sometimes, so I don't mind your point because that is something I'm trying to work on. There is something about how knowledge gets personalized and one of the interesting things I discovered about TS is that we can have trouble inhibiting our personal frame of reference and intriguingly I have a bad habit of starting at a somewhat different place in trying to relate what I know. In my head when I think about TS symptoms I start going to brain systems, changes that happen when certain experiences happen, and associated cell and molecular biology. So I've been practicing taking a step back and making sure I have things that relate to what the typical experience people have is. So if anyone is ever a bit lost at what I am getting at I have no problem being asked to make the focus more useful. This stuff is fascinating even when it's annoying.

    I have not really interacted with the TS community much until signing on here. I'm afraid that I'm struggling to get out of a life long social anxiety habit that was a lot worse than I have thought. When I first started getting into the research I did contact a couple of people that were involved in the cognitive enhancements that have been observed in TS (faster processing of rule based language, more accuracy of supra-second processing and related tests that measure this in different contexts, greater awareness of less intense sensory phenomena...) and they were able to give me some good insight into how to realistically interact with the literature. But it has been a while since I tried talking to anyone and I have been trying to change that recently so I'll look into Dr. Woods.. While it is fun to read all of this stuff, it can be difficult to figure out what to think about some of it when you don't get to talk to others casually about it. I've also been looking for places on the internet where people who are involved in brain science talk about it.

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    Default Re: Extreme science nerd with TS here...

    I wasn't diagnosed until I was 35. I had already acquired a PhD in physics.

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    Default Re: Extreme science nerd with TS here...

    With your research, have you ever considered pursuing medicine?

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    Default Re: Extreme science nerd with TS here...

    @gjmarmer
    It was the ADHD that killed my career more than the TS. The TS was more of a benefit because of the rule based cognitive strengths. But the ADHD made my work slow down relative to others. I produced good work, it was just slower and more prone to some level of error that I'm still trying to anticipate and account for in my habits.

    @GardenerMatt
    I made the terrible mistake of thinking that I could train to be a teacher because I liked being a teaching assistant at the university (Texas school systems. I had not really thought the sensitivity to social stress would be as bad as it was). I'm only just now trying to get back into science as some sort of technician. Being unable to pursue a PhD was a pretty big emotional blow that I'm still recovering from so I'm not really sure what I can do. I would be afraid of making a mistake and killing someone

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    Default Re: Extreme science nerd with TS here...

    Hi Flutterguy! I'm interested in the neuropsychology of TS. With all the work you've done you must have some interesting hypotheses. I hope you will feel free to share any insights you have or ideas you've developed.

    I look forward to reading and thinking about anything you care to write about!

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    Default Re: Extreme science nerd with TS here...

    Quote Originally Posted by Flutterguy
    I made the terrible mistake of thinking that I could train to be a teacher
    Are you familiar with Brad Cohen's story?

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    Default Re: Extreme science nerd with TS here...

    Also, Dr. Duncan Mckinlay is a good example of a doctor with TS. There's another one whose name escapes me for the moment, who wrote a book about growing up with TS...he didn't get a diagnosis until he was an adult, but was still able to become a surgeon of some repute as I understand it.

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    Default Re: Extreme science nerd with TS here...

    @Steve
    I have not read a lot about Brad Cohen, but what I do know leads me to believe that the environment in which I tried to train was harder for me to endure than his was for him. The combination of my own personal history (the impact of losing a career that I honestly loved and did not really want to leave, the mental diagnosis that I needed to come to terms with) and a dysfunctional school system with a high teacher turnover rate was not something that I was able deal with. If I can reinsert myself into some form of science related field I will be much happier.

    ---------- Post Merged at 01:16 PM ---------- Previous Post was at 01:08 PM ----------


    Quote Originally Posted by Twidget
    "I'm interested in the neuropsychology of TS. With all the work you've done you must have some interesting hypotheses. I hope you will feel free to share any insights you have or ideas you've developed."
    It's really fascinating reading all about the thing from the perspective of the person having the thing. Unfortunately since they are still working on understanding what the nature of TS is, it looks like a network of collected observations in a range of disciplines at the moment. But my perspective does change how I look at that set of observations and while ultimately I only know "my tourette's" (and ADHD) I am willing to share what I know. I do have some ways of summarizing my current favorite "what", "when", "where", and "why", and "how". These four Ws and an H look different in the realms of personal experience, behavioral observations, and the details in the various academic disciplines (this is also true for every type of mental issue).


    Personal perspective
    From our individual perspective I think that TS is about intensity of experience and how that intensity is shaped in specific cognitive systems. I think that the earliest observations of childhood behavior of children with TS, observations of the nature of the sensory sensitivity in children and adults with TS, the way that urge awareness and "shapability" of tics presents, combined with some observations in brain regions associated with tic urges and meditation(1) with TS justify this. Essentially managing your thoughts and emotions is like one person trying to control a fire hose that normally requires a team.

    Why would a kid have problems controlling anger or sexual urges, or thoughts/obsession about the same? Why would we be compelled to focus on particular aspects of the world around us and feel particular responses to them? Either the emotion is strong, the systems that allow us to inhibit it are altered, or both. The answer is likely both because of the way that nervous systems do what they do, and when they do what they do (the answer is always both when you deal with a system where the whole thing can change in lots of different ways when you alter one thing). A car with defective brakes is different from a car with a stronger engine. So it's likely that different people with TS got there from different points and there is good evidence that there are subtypes of TS with characteristics that are still being defined.


    Brains, development, and experience.

    The way the brain works from a computational perspective include lots of brakes and signals of different type and intensity that act at different levels of cognition, levels that are established at different points in development and build on one another as our cognition changes over the course of our lives. That system is shaped one way in TS, another in autism, another in schizophrenia, another in etc. A single example is the alterations to our startle response, specifically the reduction in something called the "pre-pulse inhibition" (PPI). In experiments studying the startle response you see a reduction in how intensely we are startled if there is a less intense stimulus given just before the one meant to elicit a startle. With TS individuals this reduction in the startle due to the PPI is reduced. We startle more intensely. No matter what the ultimate alteration that creates the state of TS is, we perceive it as increased intensity.(2)

    Where "it" comes from. Chickens and eggs.

    A strong urge to react in a certain way or pay attention to certain things are emotional signals among an internal pool of lots of signals that we could potentially pay attention to. Choosing or being persuaded (by positive or negative means) to not respond to a particular urge or to respond after introspection literally creates neurobiological controls associated with inhibition or awareness and response choice in the brain. Depending on how old the kid is the options for growing emotional controls are limited because our cognitive abilities develop over time and personal and family history/experience/environment alter this. So too much time spent giving in to the impulses and not controlling them, or programming changes result in underdeveloped inhibitory/control systems. That so many genetic connections have been made without finding a single cause indicates that there are likely many "brakes" and "accelerators" on intensity that can be shaped by experience, choices (informed and uninformed), pre-programming via hormone exposures, or environmental exposures that can lead to the state of being that we call Tourette's Syndrome.

    I'm personally convinced that a large part of what TS is has to do with how human mental programming is established in really broad terms as it relates to what are considered male/female differences in cognition (this would require another large post, I'm willing if anyone is interested). This is a controversial area because of disagreement on what constitutes "male" and "female" behavior, what gendered behaviors are innate versus shaped by society, and this area of research unavoidably runs into issues like homosexuality, transexuality, and other things as well. I have yet to see a human behavioral trait that does not exist in individuals of either sex, and even if male or female tendencies exist in these traits, they are biases that we can choose to interact with in different ways to create the society that we want as a group. Murder is as natural as compassion. Men and women all produce and use all the same hormones and it turns out that there is a separation (with likely communication between the systems) between what establishes physical sex, and what establishes mental characteristics that have been historically correlated with sex.

    Many model organisms display a range of differences in "male" and "female" behavioral traits in physically male and female individuals depending on what the environment is like, including the social environment. These traits can be transmitted from one generation to another indicating that there is a system in place to detect certain environments and shape behavior in response. Dangerous/stressful environments produce measurable alterations in things like aggression, sexual responses, social interactions, anxiety-like behaviors, stress responses and more. Note that we can't say that the exact same categories of sensitivities and behaviors exist between humans and these model organisms. It's possible that our history as a species has resulted in these categories becoming separated or differently associated with physical sex in cognition when it comes to individual differences, some of the categories/regulation may not exist, and there are likely categories that are unique to humans. But the picture that is starting to develop in the research shows a general outline for how the systems are established and altered that applies to us in many ways.


    I have found lots of little correlations between the whole constellation of alterations and observations in TS individuals, and observations in the research that is trying to understand these cognitive systems that are established by hormones, chromosomes, environment and society. Naturally you should keep in mind that I am approaching this as an educated amateur and this is literally cutting edge research that in many cases needs replication and needs to be fit into a larger context, especially when it comes to animal models of human behavior. So caution is advised. We would know more but I think that that by over-focusing on the motor systems we have been missing the true causes and nature of TS and how it relates to things like ADHD and OCD (which are also shaped by this cognitive system shaped by "sex hormones").

    (1)There is a part of your brain called the Insular cortex (because it hides under the parts that stick out of the sides, the temporal lobes). This region can be characterized in different ways but one way of looking at it is that it is your internal "head up display". It's a part of your brain that is devoted to sensing things associated with you and internal feelings and signals. Urges are sensed here (like the urge to go to the bathroom, or scratch an itch) and like any other part of the brain we can individually develop it to different extents so it effectively processes self-awareness. Altered activity is seen here in TS and correlations have been made between these alterations and the locus of urges. The insular cortex also changes with many forms of meditation. So if one were to practice mindfulness meditation one would develop an increase in the complexity of one's internal "heads up display". Note that altering your awareness is the first step in techniques meant to control tics.


    (2)This is complicated by the fact that increases in intensity of some signals cause other signals to be harder to "hear" by comparison which can change on some things depending on one's personal experience. An example of a "signal" that is harder to hear because of a louder "signal" involves aspects of TS that have not been studied well and don't seem to get talked about as much. We have a problem with "theory of mind" (the ability to understand and use the fact that there are minds out there like ours) and one of the ways that it manifests is in a difficulty to inhibit our personal frame of reference effectively making us a bit more self-centered as a group. Because we don't account for a larger social awareness as well we are prone to social mistakes. Interestingly the onset of tics correlates with a stage of development called the "concrete operational stage" that is associated with "decentering" (taking into account multiple aspects of a problem to solve it), and "elimination of egocentricism" (the inability to consider or understand a perspective other than one's own). Even more interestingly the tics and the concrete operational stage occur at the same point in time as a little known stage of human development called adrenarche (but whatever is different about TS may still have effects before adrenarche).

    ---------- Post Merged at 02:40 PM ---------- Previous Post was at 01:16 PM ----------

    @GardenerMatt
    Also, Dr. Duncan Mckinlay is a good example of a doctor with TS. There's another one whose name escapes me for the moment, who wrote a book about growing up with TS...he didn't get a diagnosis until he was an adult, but was still able to become a surgeon of some repute as I understand it.
    I have read a little about him as well. Again I think my problem is the ADHD as opposed to the TS and switching from general research to medicine is actually a pretty big deal, though there is a lot of overlap in the fields because there is a lot of research in medicine. Mentally parsing apart what is TS versus ADHD and possible OCD/OCB (I never got that aspect analyzed but I am aware of obsessions and compulsions) in my head and the research I read is something I'm trying to get better at. Depending on the specific role in medicine or research I still need to develop awareness and methods with respect to the places where I have cognitive weaknesses.
    Last edited by Flutterguy; May 6, 2014 at 04:40 PM. Reason: format quote

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