So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.
Why, pray tell, would that be so? you may ask?
Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.
This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.
For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.
And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.
Oh. My. God.
Someone please help me.
I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.
Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.
It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.
Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.
Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.
If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.
Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.
But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.
Okay – pause – let’s see how my memory for that starting image is doing:
Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.
I’ll try again later.
Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.
Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.
I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.
Onward.
Broken Brain - Brilliant Mind 
I understand your frustration, actually on both sides. My TBI has been a bit of a nightmare for the past 2 years and I don’t have nearly the extent of your experience. However, I AM neuropharmacologist – and it isn’t any better from this end. Not only is the collective knowledge in the pharmacotherapeutics of TBI lacking but it’s faced with two major problems going forward. As you know, TBIs and ABIs can manifest in so many different ways that trying to go by some treatment recipe in the textbooks is crude at best. And worse I suppose if your young neurodoc is l like you describe.
The other obstacle is something that many practitioners don’t seem to appreciate. And that is the first law of pharmacology, which states: “A drug will do whatever the fuck it wants to.”
Keep trying to find the solution that works best for you.
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Great first law — I’ll have to remember that. And tell my doc(s) that a neuropharmacologist told me about it, when they look at me cross-eyed, as they sometimes do.
I’ll keep looking and working at it. My old neuropsych, who was once very skeptical of my avoidance of drugs, got a close-up look at what happens when you rely on a drug to do things that you can train your system to do. A patient of theirs who had been doing well on a certain med, lost access to the med, and they lost ground very quickly — like years and years worth of progress just evaporated. And my NP finally got what I was concerned about. But not before that other patient paid the price.
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Welcome to the Profession of Brain Injury and the people who are there to HELP!
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This comment may seem odd and even to me I wasn’t sure if I should write, but then I thought more food for thought is better. At least an idea can be considered by you as to whether or not it is beneficial. Here goes…
Perhaps a professional organizer who specializes in hoarding will be better than the neuropsychologist in terms of helping with honing organizational skills. It is possible they are more accustomed to the various “blocks” that can make a person stuck and finding solutions around them. I am not calling you a hoarder, please understand…I was just thinking “what professional is really good with organizational skills?” and this is what popped into my head. I have also mentioned before that we had great luck with organizational skills from both the occupational therapist and the speech pathologist we worked with, but they have both moved and so we don’t have anyone we see in those areas. They may be worth checking out though too as they deal with physical stuff and getting things done; might be more action-oriented and less motivational focus than a psychologist.
We have had trouble finding the right psychologist for DD and she is having a particular emotional response that is growing worse as a result. I have not wanted to get just any psychologist to help my kid because I don’t think she has the tolerance to shop around and deal with the professional missing that target, which she would feel and would just be more frustrated about. Her NP writes about DD’s unwillingness to take off her hat and sunglasses for sessions, but doesn’t acknowledge the light sensitivity issues that can exist after TBI. And if that professional can’t, how would another that doesn’t have the neuro background? I think about one that has specialization in GATE children because the one locally *really* gets kids that are ‘out of the box’ and “highly sensitive” but her association with the school where my kid got injured is the drawback there. I want to believe she would put my kid first, but based on the way school personal, and in particular, the school psychologist, none of us in the family have a lot of faith in that belief. Ar least the GATE psychologist is not employed hy the school district. Most that we have interviewed, just chalk her emotional stuff as typical teen behavior, but my kid doesn’t feel it is so, and right off, the trust cannot be built as there isn’t a connection or feeling that the professional “gets her.” We don’t even get the feeling that they try to understand how the filter of a TBI does have an impact – it’s the hidden injury that is also underestimated or unrecognized by psychologist and maybe neuropsychologists (NPs) have more training in the psych part than the neuro part, or that is where three continuing education focus is. After all, there is a longer history of known psychology issues and research than that of TBI, which is relatively new on even the awareness scale.
Transportation and cost can be a limiting factor for us too in finding the right care. DD doesn’t have a lot of time and energy to travel as far as we need to in order to complete some of these therapies. She definitely doesn’t like when she feels her time was wasted and she has a better handle on how to move forward than the professional. She, like you, is extremely bright and self-aware.
I just continue to be available, but without hovering. I am there to let her figure out what is going to move her forward and to support her in those efforts. I try to bolster her confidence and soothe her pain when she comes up short of her goals. I read widely to gain knowledge in the area and stay current; we discuss what’s in the literature and the media about TBI treatment (and prevention) and sift through if there is anything relevant or new to follow-up on.
But I do worry and I do need to hike so I can process my own feelings about how this journey has been. I am iunafraid to show my feelings, but I don’t always want her to know the depth of the negative ones. I want her to know she is not the only one with ups and downs. But I sure wish we has the right psychological professional to help guide us.
Maybe my expectations are too high, but DD is young and I just think being patient in our search for the right professional is a better choice while trying to self-help rather than the other choices on the spectrum of doing nothing or just trying out psychologists until we randomly find the right fit.
“Onward,” your frequently written closure to your blog posts has been taken on as sort of a family motto around here. In the face of everything on this journey, that is all we can count on and control, our choice to move forward through it (even when and especially when it is difficult). Thank you for continuing to inspire that!
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OMG – right? I just can’t get my head around it…
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Thanks so much for writing. I’m running out to an appointment, so I’m short on time and attention at this instant… but I do want to respond in more depth – either later today or tomorrow. I hear you loud and clear… and how completely bizarre, that your daughter is being pressured to remove her hat and sunglasses by someone whose job it is to know about these things. I don’t have a polite adjective for that, so I’ll decline to comment in full… till later when I can be more thoughtful and diplomatic.
Onward, indeed!
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So, yes – now for my more complete response.
I see what you’re saying about getting an organizer person to work with. That actually sounds like a good idea. I think what I am more in need of, is someone to just sit there and listen to me work through all the details of what I need to get done, keeping in mind that I’m prone to be tangential, I get distracted easily, and I get fatigued. Having that neuro perspective is so important, as well as understanding why it is that I get so caught up in different ideas… and then helping me create new patterns of thinking.
I probably got spoiled with my last neuropsych, who was more focused on creating new patterns of thought and action, and who kept me looking at the big picture and helped keep me engaged with my immediate world.
But yeah – that does sound like an intriguing idea…
As for your daughter, I’m really sorry she’s going through all of this. At least she has you to believe her and support her, which is huge. Some of us go our entire lives without anyone who actually believes there is more to our situation than “normal growing pains”. My siblings all had very similar life experiences to me, growing up, yet none of them melted down over small changes in schedule or surroundings, none of them banged their heads when they were kids, and none of them pitched fits for hours on end, when they were fatigued. My parents, I think, always knew something was “up” with me — they still treat me differently from my siblings… more careful, more deferential, like they’re waiting for me to blow up — but they never outright acknowledged it, and they certainly did not do anything constructive to address it. Punishment and iron-fist discipline doesn’t count.
Your daughter is having a rough time, it’s true, and yet she is in a very different situation and she has your support, which matters so much. Plus, once she gets through this and gets on with her growing-up life, she’ll have this experience to draw on, as she goes through the world. Having compassion and understanding for others who are struggling isn’t just nice to have — it’s critical, and so few people can do that. It helps in every possible way, including in the workplace, where it can make you a much more valuable employee, and it can even help you have a happier career (having compassion for others and their invisible situations, and factoring that in).
I think it’s amazing that you’re doing all that you are and you’re including her in the process. That is so important. Good training. If I understand you, you hike (in the woods?) so that you can process your feelings? I think it’s prudent to not “let it all hang out” with her, so that doesn’t become another point of concern with her. I was always so worried about how I impacted my family — I still carry a lot of guilt about how challenging I was, and I was always aware that I was pretty much of a strain on my parents and siblings. If only I could have done something about it. But I couldn’t. So, we were sort of stuck with it all.
I wish there were a decent way to locate a competent neuropsych who isn’t tainted by either insurance companies, professional connections, or some other sort of loyalties. It’s a minefield out there, and I’ve just gotten lucky. That whole thing about the NP commenting that your daughter doesn’t take off her hat and sunglasses… I mean, seriously?! WT-?! That makes no sense. It’s so elementary, so basic, so fundamental. How could that not register with them? I mean, yes, brain injury is a big area, but sensory issues are some of the most obvious and pronounced, and I can’t think of anyone I’ve heard of who had a concussion/mTBI who didn’t have sensory issues. Maybe they need to be shown pictures of pro athletes who’ve gotten their bells rung, sitting with towels over their heads, because they can’t handle the light.
It’s just appalling, really.
Have you considered telemedicine? I think there may be some folks out there who offer sessions by Skype. I’ve seen some folks on Twitter, I think, who do neuropsych work remotely. Is that something you could do? In this day and age, it seems ridiculous to me that geography should be a limiting factor, but of course it is.
And after all, there’s nothing like direct personal interaction, especially with brain injury stuff.
All this is “fodder”, I tell myself. It’s the stuff we can use later on, to have a deeper appreciation for things that actually go right. Of course, that’s my glossed-over version that doesn’t reveal my intense frustration over the shrieking agony of all the folks who are left in the margins and refused proper care, because the people tasked with the job aren’t up to it — and have no interest in becoming so.
In the end, I hope you can find some resolution, and that something good comes out of this.
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Reblogged this on Kate McClelland.
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I’ve been away from the computer – partly because the kids have been requiring it more with end of the school year projects. I appreciate your detailed and thoughtful response. Telemedicine is not something I’ve considered, but actually is quite a good idea. Our health care system is shifting to allowing her pediatrician to making some telephone appointments. But since we have some stuff we pay for out of pocket, the other idea is appealing.
You wrote, “Having compassion and understanding for others who are struggling isn’t just nice to have — it’s critical, and so few people can do that.” And that means a lot to us, we’ve always said as we depart from the kids or they go out for their activities, “be kind.” It’s one of our core values and I don’t think it’s intentionally modeled or taught by some of the parents in our community–and part of the reason our daughter can be so lonely. She knows that she’ll be moving on though and this will give her an edge in future interactions.
My hiking is in mountain areas, though we have a few more wooded spots. I don’t like them quite as much as open space, but give me nature over pavement for sure. I used to get impatient to get to some of the viewpoints and would run to them, and I definitely don’t have a runner’s physique. I just find it incredibly energizing and relaxing at the same time. I think it’s the mindfulness of it – I’m definitely in the moment. I’ve been missing it, but I have my post-op appointment this week and I’m hoping for more guidance about exercise, though mostly I’m just hoping nothing went wrong in the past few weeks and I’m on target with my recovery.
Here’s another breakthrough for us this past week. While at conference, my hubby happened to be sitting by the administrator for the optometry department and he got to talking with him and explained how we are seeking the Biosport contact lenses. The administrator wrote to every optometrist in the department and asked them to look into the options. We still may not be able to get this done through our health insurance as there can be blocks (as we’ve already had), but it’s good at a minimum that awareness is being raised. And if they’re talking about this, it’s great for us and perhaps a real possibility to get it covered through our insurance.
However, at the same time, I had an end of treatment appointment with the outside optometrist who has been conducting the vision therapy. He showed me that her field of vision is optimal now! The blind spots she had in the right upper quadrant are clear and this means that light is traveling through those areas now. This is huge in terms of future driving safety. But it’s huge now because it shows objectively that the treatment has results – not just our feeling that her vision is better. Of course, all of this has been incredibly slow, but it’s forward progress.
He also offered to sell her the photosynotic device, which has been so helpful in reducing her headaches. He’s not asking full price, but allowing us to purchase it at about 40% of retail, so he’s not taking a loss and we’re getting a bargain. He claims this is because it is a “used” item, which it is because we’ve been using it. I’m so happy to have it though, and I think my daughter was ready to do cartwheels when I told her that we were able to buy it.
Finally, and this is a biggie….he listened to me with regards to the contact lenses and he just couldn’t wrap his head around the administrative red tape of getting these for her to just see if they work. He doesn’t want us to pay huge out of pocket expenses though either and wants to work with our current insurance/medical group to see how we can get these done. By the time I’d driven home from the appointment, he’d already ordered a sample pair to have delivered as soon as possible. He let me know that if these didn’t work, he wouldn’t charge us–and if they did we can negotiate the price.
Talk about compassion in care and understanding the situation fully, knowing that this isn’t just a cosmetic issue, but that it cuts to the core of how the social interactions are occurring at a critical development time. The right provider can make such a difference!
Anyways, you can see a lot has kept me busy, so sorry about the delayed response to your very thoughtful and insightful comment to my original comments. I hope that the dialog will help others out there who struggle with the same issues. I hope that others maintain their hope, compassion, and willingness to share so others affected by TBI can find strength in their journey because of the community we’re creating.
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Wow, this is all just wonderful news. “Be kind” — that is great. I think I’ll post a little sign of that in my cube at work. I sit at a corner where people can clearly see into my work space (not my first choice, clearly), and it might be a good reminder. People around me are stressed and we can all use a little reminder.
One great thing after another is happening for you and your family, which is awesome. Your daughter’s vision healing is remarkable, and it’s wonderful that you’re getting corroboration from the folks who can confirm, that things are really working. And all the cooperation and help in getting your “gear” in place is fantastic.
This just highlights to me how important it is to keep advocating, keep looking. There are people out there who can and will help us. We just need to put ourselves out there and keep hope going, against all odds.
Thanks for writing – hiking works for me, too, though I have to keep to pretty basic paths, so I don’t kill myself (literally). There’s an immediacy about it — having to pay attention to nearly every footstep, where you place your feet, how you navigate the terrain — that is energizing and relaxing. It’s a great thing to be able to do.
Have a great day – and enjoy the rest of spring!
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