Posts Tagged ‘Dr. Russel Barkley’

My Journey into ADHD! (2023)

Monday, November 6th, 2023

Introduction

Neurodiverse Squad logo
Neurodiverse Squad logo by Dani Donovan,
Credit: @danidonovan, used with permission.
adhddd.com

My daughter (age 14) and I (age 49) were recently diagnosed with Attention Deficit/Hyperactivity Disorder (ADHD) in February 2023 and April 2023 respectively, and I am very excited for both of us. Now that we know that we are part of the neurodiverse community we can begin to work towards understanding ourselves better and managing ADHD’s impacts on our lives. If you want to learn more about ADHD, you can check the list of ADHD links at the end of this post.

My daughter and I are on somewhat different ends of the spectrum and our ADHD manifest differently which means we clash a lot. She is more on the hyperactive side of ADHD as well as being an extrovert, while I am more on the inattentive side as well as being an introvert. It is a super exciting time for us both, because, with our new found diagnosis and knowledge, we are ADHD bonding over making sense of it all, and learning to better deal with each other. Yea!

Oh, I don't try to hide my weird. I like to wave it around and scare away the boring people and it's like a beacon for my fellow weirdos.
Oh, I don’t try to hide my weird. I like to wave it around and scare away the boring people and it’s like a beacon for my fellow weirdos.

For me, my diagnosis has a been a revelation and so very freeing. I am excited because now I really can start to make sense of myself. I have always been different and have struggled with various things, and ADHD is a large part of why. I have been lucky to have embraced my differentness by proudly embracing the word weird as a fundamental part of who I am from a very young age (grade school) and excitedly embracing geek and nerd too. You can see all of this slathered all throughout my About Me page. As I have reflected back on my life, I have begun to realize that most of my life has been built around coping with the impacts of ADHD, that my life and everything I have struggled with only makes sense through the lens of ADHD. =O

My wife is now the only neurotypical in the house except for maybe the cat, although he has his own issues. Gods help her!! Send her all your good vibes and love because she is going to need it.<3

Towards the last half of this post I will be using a few of Dani Donovan’s amazing ADHD comics/infographics which you can find on her website. If you like one of them, then please go on over to her site and buy one, because they are awesome!! I also have links to her works and her Patreon at the end of this post if you would like to support her or learn more.

I. My Daughter’s Diagnosis Journey

I am jealous but also very happy that my daughter’s journey to diagnosis and medication was an easy one. We actually do not remember how her journey began, but I could swear it was her 8th grade teachers recommending that she get tested for ADHD. We attended her first appointment two days before I had my first appointment in the first week of March. She also started with a therapist around this time too. In early September we had another appointment for her to get her ADHD meds and she received her first meds that day. Yea! The low dosage of meds did not seem to do so much for her at the time of this post, and will be looking to increase it here in a little while.

II. My Pre-Diagnosis Thoughts and Journey

A. My History with Web Accessibility

Developers NOT knowing accessibility is what is keeping us from an accessible web experience.
Developers NOT knowing accessibility is what is keeping us from an accessible web experience.

Honestly, it all starts with my previous position working with a county government for 18 years as a web standards developer/website administrator, because that is where my knowledge and passion for web accessibility started which is about making sure that websites were accessible to people with disabilities such as:

  • low of hearing to being deaf;
  • being color blind or having low vision to being blind;
  • not having arms or hands, or being paralyzed from the neck down;
  • cognitive disabilities such as ADHD, dyslexia, depression, anxiety, seizure disorders.

B. Early Head/Sleeping Issues

In late 2021 I had some fairly severe sleeping issues and I was seeing a psychologist and psychiatrist who both thought some of my issues may be caused by anxiety or depression. I did not identify with either of these. Like, what does that even feel like. I am stressed dealing with life under capitalism just like everyone else is. =O

In the summer of 2022 I worked to shift off the more powerful sleep medication with side effects that I did not like as well as getting off the antidepressants too.

C. Realizing I had ADHD

Last year (May 2022), I found an amazing job as a Digital Accessibility Expert with Western Governors University (WGU) to bring technical expertise to the institution – advising on website code, accessibility standards, accessibility evaluations, and so on. I am in my dream job and the people are AMAZING. I have never really been really friends with people I work with, so this is really the first time. Sooo many amazing and passionate people. Part of the reason why I am friends with the people I work with now, might be because I am now surrounded by people who really understand me and who likewise have that compassion-driven rage for accessibility too.

This simple meme has a white background with both the Wonder Twins from the early 80's Super Friends cartoon wearing their purple and yellow super suits facing each other with hands extended and touching. "Amanda and Jim" is the text between then. "Rage Twin Powers Activate!" is on the bottom.
Amanda and Jim Rage Twins Powers Activate!

Amanda is my other half at WGU and she is amazing. She is like the neurodivergent accessibility sister I never had. <3 Amanda and I work together with the various departments and projects advocating and consulting on accessibility needs and best practices to ensure that our student-facing resources are as accessible to the entire breadth of human experience. 

Amanda had therapists for 20 years telling her that she probably had ADHD, while her doctors told her that she didn’t, but she was finally diagnosed with ADHD in Dec 2022. She is very open with her struggles with depression and ADHD. She openly talks about her struggles with us in our accessibility group, but also talks about this in our talks to the various departments that we work with. While working with her I heard her experience and started to really identify with her ADHD struggles which then inspired me to do my own research. Then I was like “Holy shit! I have ADHD!!!”. With that realization, I started my journey into the world of ADHD and neurodivergence

D. My Concerns and Thoughts on the Diagnostic Process

Introduction

At the start of this process I was thinking that I was going to have difficulty with receiving an ADHD diagnosis for 2 main reasons:

  1. Childhood Impacts
  2. The “I am old.” Problem

1. Childhood Impacts

Through my research, I had heard a problem that some people had with obtaining a diagnosis of Adult ADHD was that the diagnostic process requires significant and overt childhood impacts, which I do not really remember.

2. The “I am old.” Problem

Here are four of those potential issues with seeking a an ADHD diagnosis being this old (almost 50 years old) and being me:

  1. Old – I have many years of practice in coping with ADHD’s impacts. Also, I do not remember much from my childhood.
  2. Programming Background – I have logical brain and training through my computer programming degree which makes it easier for me to to break up large projects into smaller and more manageable steps.
  3. Introvert – Some of the potential external issues from ADHD are mitigated because I do not spend a lot of time with people.
  4. Introspective – As an introvert I am very introspective, so I can look to see problematic behaviors and try to to solve them before they become too problematic.

In some ways, all of these factors may have ended up sheltering me from the more severe impacts from ADHD, potentially making it harder to get a diagnosis.

III. My Diagnosis Journey

Introduction

After my eureka moment inspired by my work sister, Amanda, I made the first appointment with a Veterans Administration (VA) psychiatrist to start the diagnostic process. I also made appointments for both my daughter and I with a private therapist to support us in our new ADHD journey. For me, our journeys will not be over until we both have a diagnosis and access to medication.

A. VA Appointment 1 (Feb 2023)

Step one was seeking a diagnosis with a VA psychiatrist who, after hearing my lived experience, thought I may have ADHD, but did not give me a diagnosis yet. She wanted to meet with my mother to talk about my childhood which, of course did worry me. Partially, because I knew that childhood impacts can be required for diagnosis and I do not remember much, but also I knew my mother would not be happy about any of this ADHD talk either. =(

I was sooo excited, over joyed, and empowered because the psychiatrist thought I might have ADHD. I know I did, but I had to just get the paperwork. I now had: a word, an almost diagnosis with which to pursue and to learn how to more effectively cope with being me; a community that I could identify with and seek support from.

I have always been different. Part of that is just my eccentric introverted self, but a lot of it isn’t. Finally, I made sense. My life, my struggles, and who I am as a person made sense for first time in my life. It was such an amazing feeling, but I still felt a significant hesitancy to embrace it too fully because the process was not over yet.

B. Private Therapist Support (Mar 2023)

We both started with a private therapist to support our diagnostic and learning process. From what I had heard within my research, I also, knew this was going to be a process to get the diagnosis and medication for me, so I was preparing for that.

C. VA Appointment 2 (Mar 2023)

The second appointment with the VA therapist was over a month later (last day of March) where she wanted to talked with my mother and I about my childhood because I did not remember so much about it in the first appointment (Did I mention I am almost 50?). However, this appointment did not go well because my mother and I did not remember and significant ADHD like symptoms which could reinforce an ADHD diagnosis. I was expecting this result, but that did not mean that I wasn’t still devastated. =(

And, just like that my life experience and struggles as an adult and a potential ADHD diagnosis were negated without significant childhood symptoms when the psychiatrist said something to the effect of: “I was just a normal adult just struggling normally.” She also said that there are further tests we could take and we made an appointment for another month out to talk about it further.

I was devastated, on the verge of tears which I held back as my mother drove me back home. Like my whole understanding of who I am as a person was unraveling, that feeling of completion and the potential for progress was yanked out from under me. Like I am just looking for a diagnosis as an excuse to be lazy which would make me a horrible human being. How horrible do I have to be to pursue something like this. =(

D. Private Therapist Appointment (Mar 2023)

I think it was the next week where I had my next therapist appointment. I talked about how devastated I was. Fortunately, she said that she was able to diagnose me. We talked about it and we went over my symptoms and she gave me a diagnosis! Color me happy. The hard part was done – a diagnosis. Now on to trying to get medication. She told me to fill out the paperwork to share my diagnosis info with my hospital/doctor so I could talk to him about getting meds.

While seeing my therapist as I was working through the process of understanding ADHD and its impacts I fairly quickly accepted Anxiety as a part of me.

E. Private Primary Doctor for Meds (May 2023)

Eventually, I got that paperwork filled out and submitted, and then scheduled that appointment. My doctor said that he does not do ADHD meds which was disappointing of course, but not unexpected. I can completely understand him not wanting to get in the middle of this battle between the Psychiatrist who says no to diagnosis and my Psychologist who says yes to diagnosis. He said he goes with whatever the psychiatrist says since that is her area of expertise. A partial cop-out, but a good one. =( He also mentioned I could make an appointment with the hospital’s psychiatrist as a next step.

F. Accepting Depression (Aug 2023)

In August I finally accepted depression as a part of who I am, some due to ADHD impacts but mostly due to politics and Climate Change, so I started taking the antidepressants again which really lifted the weight off my chest that I had been carrying. This whole journey into ADHD has been an amazing self-reflective experience, an amazing journey into understanding myself.

G. Hospital Psychiatrist for Meds (Sep 2023)

Eventually, I scheduled that appointment with the hospital’s psychiatrist in very last week of September. In that appointment we went over my ADHD symptoms so he could get a feel for where I am at with my ADHD impacts to decide on dosage. At the end of this appointment I had a prescription for 2 weeks of medication so we can see how it is working and then we can adjust the dosage. Currently, the dosage is not doing so much.

IV. My ADHD Impacts

Here are some of the ways that my ADHD has impacted the 50 years of my life so far and how I have worked to cope and compensate with it. Please forgive the somewhat arbitrary categorization.

A. Hyperactivity and Impulsiveness

What’s the Hell is That?
Oh, just my mind! *messy rainbow colors streaming out of brain*
  1. Sleeplessness – Not being able to sleep because my mind has always been active which is a mixed blessing for me. Not sleeping sucks… a lot, but I cannot tell you how many times I have had amazing thoughts or epiphanies during those sleepless times which I had to get up and record. CBD oil was a miracle until I had the head/sleeping issues mentioned above. I take a medication for sleeping now – hoping to get off it and back to CBD oil sooner than later.
  2. Impulsiveness – For me, my impulsiveness or lack of control shows itself with food and with spending money depending on the conditions, which then creates not-so-good feedback loops:
    • money – bills are late and/or fees accumulate and this also may create issues with my credit score, which then fuels anxiety which is not fun, and then feeds into the below loop.
    • food – I think I tend to stress eat cancer foods (Mountain Dew, Mounds, and a 4 pack of Reese’s Peanut Butter Cups) which of course makes sure I cannot sleep well and wrecks havoc on my weight and how I feel, which then means I want more to compensate for being tired and feeling like crap. Tis a vicious cycle. I also wonder if I crave cancer foods for a quick dopamine hit?
  3. Hyperactive Starts (Health) – For me, when I have decided to do something for working out or health, I have tended to go 100% and have tend to end up hurting myself in some way perhaps by not paying attention or not having the support I need (personal trainer or something).
    • Caloric Restriction (2008 @ 35) – I did successfully do caloric restriction and Shangri-La for a year and a half which was amazing, but I fell off the bus because I wanted to change the formula for my smoothie to reduce its caloric load which would have taken at least a week to do the math. I was not able to start or complete adjusting my smoothie recipe so I stopped doing the diet. No harm to me here, fortunately.
    • Daily Yoga (2014 @ 41) – I did yoga 7 days a week for around 7 months with 4 days of DDP yoga (a form of power yoga) and 3 days of my own light personal practice. This was the best shape I had even been in! It was amazing and I felt great!!! My cardio was amazing! But, I ended up with knee issues, so I had to stop and this is still not fixed. =(
    • Bowflex (mid-late 40s) – Then a few years later, my Dad gave me his Bowflex (original version of the home gym) and I ended up with significant shoulder problems (frozen shoulder) which still create significant problems for my body today. With knee and shoulder issues making it much harder to even attempt to try to take better care of myself. =(
  4. Hyperactive Starts (Hobbies) – Picking up and dropping hobbies or things mostly due to time and resource pressures:
    • Learning
      • I have many gigabytes of Great Courses (college level courses) that I will never listen to but want too.
      • I have a Master Class subscription to learn things, specifically novel writing (Dan Brown) and have not even finished that course yet almost a year later.
      • On my phone I have over 2 years worth of reading in my Kindle app.
    • Blog Post Writing
      • I have 90+ blog posts sitting in various forms of draft which is over 5 years of full time writing.
    • Hobbies – I have picked up the following other hobbies:
      • Video Editing – spent a bit of money on video editing buying DaVinci Resolve and a bunch of tools for it. I do use this skill on occasion.
      • Novel Writing – I started learning copy writing, started planning a fantasy novela series and a fantasy novel series, and worked on a Fate based storytelling system, but have not finished any of them. Although, I have completed National Novel Writing Month (NaNoWriMo) in 2013. I was accepted into an online college for a degree in Creative Writing specializing Novel Writing, but could not justify adding more to my student loans, sadly.
      • Music Mixing – I have spent A LOT of money on music creation buying FL Studio and way too many sounds, with only one track out Return from the Ocean and a second one started, but have not had time to work on it again.
  5. Masking
    • With Family
      • With my family I allow my impulsiveness to come out and I am a lot more fun. This is the me that my family knows from my childhood.
      • But the man I have become (30s+) is the one who is filled with a hyper-focused compassion-driven rage into leftist politics for the last 15+ years, which is the part that I cannot really talk to my family about because some members cannot handle it. This has me being very alone and isolated when I am with my family because I cannot share a very important part of who I am. Some say they do not know who I am anymore, which would be correct because they refuse to see the man I have become while they stick to the illusion of me in my childhood and adolescence as just a fun person.
    • At Work or Other Places
      • If I get too comfortable with my surroundings then I start to lower my mask which means I may say something stoopid which I then regret, so I have learned to keep my mask up, which can be tiring.

B. Social Awkwardness

This comic has a dark navy blue background and is split in to two sections. A smaller section (~1/4) on the top and a larger section (~3/4) on the bottom. Each section has multi-colored squares with arrows pointing to the next square. Each multi-colored square has white text in it. The top section is titled 'Non-ADHD Storytelling' and it has 2 boxes: 'start of story' which points to 'end of story'. The larger bottom section has a tangled mess of 12 boxes with arrows going over and under the other lines. The boxes go in this tangled order: 'pre-story prologue for context' which points to 'start of story' then 'too many details' then 'semi-related side story' then 'wait, ok backtrack to the main story' then 'something I just remembered now' then 'lose train of thought' then 'what was I talking about' then 'realize I have been talking to long' then 'wrap story up and finally get to the point' then 'end of story', finally 'apologize'. @DaniDonovan and adhddd.com Copyright 2018, Dani Donovan, All rights Reserved
ADHD Storytelling, Credit: @danidonovan, used with permission. adhddd.com; Copyright 2018, Dani Donovan, All rights Reserved
  • No Small Talk – I do not like small talk. I really only prefer to talk about the things I am passionate and hyper-focused on (politics, religion, sexuality, nerdy stuff) most of which should not be discussed in polite company and that most people do not want to talk about. =(
  • Talking to Myself – My brain is soooo hyperactive that I am always having conversations with myself while trying to think about things (mostly politics and accessibility), my hands a flailing in the air, and people look at me strange and then move cross the street to avoid the strange man. I have had so many great ideas and epiphanies.
  • Conversational Thoughts – When someone is talking my brain catches on to a thought and I really want to say it, and it becomes harder to listen because I have something I want to say, so my energy is diverted to maintain that thought so I do not forget it, which makes it harder to pay attention, and then I need to ask them to repeat what they just said, and I might forget what I want to say during the retelling.
  • Spiderweb of an Answer – When someone asks me a question, especially something I am very knowledgeable on, my brain is trying to pull through the spiderweb of thoughts and knowledge to pick a path to an organized answer, but I don’t always get there. I find myself starting with explaining the background needed to understand the answer, and then I forget their question as well as the answer I was attempting to get to.

C. Executive Function

The background to this hand-drawn color comic with four panes is a dark navy blue. The four panes are separated by a lighter blue line. In white capitals letters across the top is the word "Procrastination". The four panes contain a circle head person in a green shirt with a grey cloud representing internal guilt to their left. The top left pane shows the person looking at their phone and a small grey cloud to their left which is labeled "internal guilt". The top right pane shows the person looking away from their phone which has a red exclamation point over it, and toward the now slightly larger grey internal guilt cloud that has a mischievous face on it. The person's face is a bit concerned. In the bottom left pane the person's face is now definitely worried as they look at the grey guilt cloud which has gotten much bigger taking up half the pane. It's face looks at the person with hunger. In the bottom left pane the great guilt cloud is not taking up three-quarters of the pane and looks evilly upon the person as they look back at their phone with large bead of sweat rolling down and anxiety clearly on their face.
Procrastination comic by Dani Donovan,
Credit: @danidonovan, used with permission.
adhddd.com
  1. Massive Procrastination – It is hard to start certain things unless certain criteria are met, or it is super hard to switch tasks even if it is a short and easy task, or their is significant anxiety over the amount of brain power required to do that task so I put it off, or for some reason my brain wants to make it what is called an Impossible Task. Even if it is an easy task, my brain will just not want to do it. And then I have anxiety over not having done these tasks and the plethora of other tasks I need to do making it impossible to do anything.
  2. Work Pressure – Have you ever had the thing where because of the pressure to get something done during work time that it is impossible to do, but as soon as the work day is done that project instantly becomes easier to do because the pressure is no longer there?
  3. Underestimate time – It was during our daughter’s appointment where we heard that we should start with what time we think a project will take and then multiply it by 2.5.  The week of her appointment I was just thinking of how shitty I am at estimating time to do projects at work!
  4. Planning – Need to plan things that I write. I cannot think or write without an outline and headers.

D. Inattentiveness/Hyper-Focus

  1. Google Calendar – My default view is set to 2 weeks so I can prep my brain for this week and next week. I have a notice set for 15 minutes before to get my brain ready to transition and then 5 minutes before to complete the transition to the next appointment.
  2. Bill Paying – I have difficulty remembering to pay bills if I have to remember them, although I have compensated for this by auto-paying everything and/or using a debit card/credit card. If I cannot autopay it or pay for it right now, then I really do NOT want it especially as a monthly payment. I also make sure that our checking account has a full month worth of money in it at all times, again so I do not have to worry about money coming and going.
  3. Hyper-focus is a major ADHD super power, but like all great narrative super powers, it has a significant negative side. When I am gleefully hyper-focused on things such as politics or gaming, then I find it very difficult to pull myself away from such things and can become cranky when I have to, and also the rest of my life tends to suffer because I have other things that I should be taking care of which are not getting done and/or I stay up too late doing them, which then leads to the food impulsiveness issues creating a viscous feedback loop. 
  4. Do NOT Like Breaking Routine – I like routine so I don’t waste brain cycles.
    • I really hate shaving and clipping nails because it breaks my routine and is such a waste of precious few brain cycles when I have them focused and available.
    • I don’t really check my voicemail (20+ messages) or postal mail (I have a whole pile in my office which I need to get to) often because I have to tear myself from my routine or focus.
  5. Crappy Grades in grade school and high school like C-.
  6. Sensory Sensitivities – sensitive to loud sounds or food texture

E. Object Permanence

This comic has a dark navy blue background and has five multi-colored squares arranged in a circle with arrows pointing clockwise to the next square. Each square has white text in it. The top square bears the text 'lose the thing' which points to ' look everywhere' which points to 'give up hope' which points to 'buy a new one' which points to 'find the old one' which points back to the first one. @DaniDonovan and adhddd.com Copyright 2019, Dani Donovan, All rights Reserved
Lose the Thing comic by Dani Donovan,
Credit: @danidonovan, used with permission.
adhddd.com; Copyright 2019, Dani Donovan, All rights Reserved.
  1. Things – Don’t. Touch. My. Stuff!!!
    • I have a ritual before I leave the house or car to make sure I have all of the things.
    • I put things in the exact same place so I do not have to think about it or lose it. If something of mine was moved, then it is now lost in a black hole never to be found again which makes me cranky. And then my wife may get upset with me when I buy another because I cannot find where the original it went.
  2. Difficulty Maintaining Personal Relationships – I have let close personal relationships fall to the wayside, partially due life’s increasing complexity as we grow older, but a lot due to not working to maintain these important relationships and people in my life. I have at least 4 of these that I feel constantly guilty about. My parents are another group. It is amazing how little contact I need while hermetically sealing myself in my attic office, much to their chagrin.

F. Short-Term Memory

  1. Constant Reminders – I easily forget things required by short term memory to which my wife cannot powerfully attest to. I have her message me so that I can attempt to remember, but because of my focus on other things she will have to remind a few times to get something, even something simple, done. I have started to use stickies to help manage this although that fell off because the novelty wore off.
  2. Rereading – Reading the same paragraph or page several times because my brain is jumping to different thoughts and cannot maintain focus.

V. Learn More About ADHD

A. Images and Infographics

B. Videos