How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

  1. Talk to people who have the same condition as you, who were successful in finding help.
  2. Talk to your local Brain Injury Association folks to find out where to look for help.
  3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
  4. Take notes on what they tell you.
  5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
  6. Never, ever, ever give up!

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

6 thoughts on “How I found a great neuropsychologist – and you can, too”

  1. I am surprised however that the Brain Injury Association’s first response was that they couldn’t help you. Their first response should have been an unqualified yes – what do you need. And they should have at their fingertips (at least electronically) EVERY licensed neuropsych person in the state. Then, if they have a list of folks who are willing to act as peer to peer support they can provide someone from the list, especially if that person is someone who has a similar circumstance to yours. That’s good process. Now I don’t know the details but if the person who’s name they gave you didn’t give them an explicit signed doc saying they could be contacted it was a HIPAA violation.

    Getting medical records is a ROYAL pain – and mental health records are not obtainable without a court order – even your own…..yup! So they can say whatever they want and you have no easy way to expunge it or correct it or to review it. But it can be passed along – and I would not be surprised if insurance companies and mortgage agencies get to see some parts of it. The ludicrousness of this is beyond words.

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  2. They did try, actually. I probably didn’t say it very well, but they just had to kind of cast around for answers… till they found one. I was talking to a social-worker-type contact person who wasn’t familiar with dealing with people like me.

    I think part of what made it difficult was that I wasn’t coming from a “standard issue” point of view, where I had sustained an injury, been hospitalized, and had a recent history to relate. I was really piecing things together, and it’s quite possible they were a little suspicious of this person who just shows up out of nowhere with this story… rambling a bit… a little out of it, nervous, addled, you name it…

    You’re absolutely right — they should have lists of licensed folks at their fingertips. I can’t believe how, time and again, I come across these organizations and agencies that don’t have that info handy. It does boggle the mind. I think the peer to peer support is dicier, because it opens the door to recommending unvetted resources, which may expose them to some liability, if things go afoul.

    I’m not sure about the permission from the person I talked to, but they were actually working out of another BIA office, and they were very forthright and open about their history. They were a designated contact person who has their name listed on many publications, so I don’t think HIPAA is an issue there.

    I have gotten in the habit of periodically requesting medical records from my various providers. I have gone ’round and ’round with medical records folks about what they can/will give to me. If someone ever gives you crap about not turning over your medical records to them, if you just mention — politely — that this raises “ethical concerns” with you and could have a negative impact on your health care, that usually does the trick. Ethics concerns go as far up as hospital administration — and it’s actionable in a number of ways, so it gets people’s attention.

    Mental health records are not obtainable without a court order? Who knew? That’s crazy! And so very wrong on so many levels. Remind me not to seek heavy-duty help… unless there are no other alternatives on the face of the earth, and I’m in mortal danger. Let’s hope it never comes to that!

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  3. I do a lot of advocacy about BI – particularly about the incoherent processes to support people with TBI – and the full spectrum of needs – those folks with major cognitive and physical disabilities and those like you or myself who have issues related to TBI but have a lot of high functioning capabilities etc.

    The peer to peer stuff can have its issues but I remain endlessly frustrated by the lack of answers the bi medical community gives me – other bi people say ‘Yeah, this is what its like for me,’ and you breathe a sigh of relief. Or if they say, ‘I used to have that problem but after a couple of years it got better and this is how I worked on it.’

    Of course you have to know there are no absolutes but it’s often better than the vague nonsense you get elsewhere. Imagine if you had cancer and you went to your oncologist and said ‘Doc, do I need chemo’ and he said ‘Do you think you need chemo?’

    Mental health issues are major – and with TBI your mental health will constantly be under question. Understandably there IS a relationship – but it’s NOT the same – and some doc can write whatever they want – you can be borderline, schizo, bipolar, ptsd, manic, depressed, rage syndrome, unaware, paranoid, etc etc. NO MATTER WHAT YOU SAY OR MEAN. If you have a hard time articulating things who’s to say some doc gets it?

    I have no idea why anyone’s mental health records are not available to that person – except it perpetuates the idea that mental health issues mean you can’t deal with reality.

    I think people in your situation are becoming more standard issue and that models of care need to be developed to manage that. The wasted money and time and lives on not addressing people with TBI years later is ridiculous. Think of what it cost you.

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  4. I hear you loud and clear on the lack of answers from the medical community!

    There’s a book out called “Brain, Heal Thyself” by a woman who helped a friend recover from a debilitating stroke. She said, if I remember correctly, that she’s so sick and tired of people saying “no two brain injuries are alike” — it’s a cop-out!

    I couldn’t agree more. Most experts are trained — and ready and willing — to offer insight on their field of expertise. But BI experts appear to be heavily invested in reticence. It’s like they are so afraid of admitting that they don’t know crap about their field of “expertise” that they blame it on their subject… rather than learning more and pursuing knowledge and taking advantage of all the incredible imaging technologies and research results that show some pretty obvious and undeniable truths about brains and how they work.

    I have a relative who is in med school, and they have no patience with neurologists. They have an extremely low opinion of them, and I can see why – in some cases. When the person you’re entrusting with your life sits there and shrugs their shoulders and doesn’t seem to care a fig about being an incompetent buffoon — in fact, seems to revel in it — it’s pretty difficult to respect that part of the medical profession.

    If I were as cavalier about not knowing what I was doing in my job and ran around saying, “I know so much, I realize I know nothing!” and basking in that ‘glory’… well, I’d be fired.

    Where the %(*^ is the professional responsibility, accountability… and pride?

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  5. This difficulty in trying to understand what people are saying has been one of the hardest things for me to handle. There came a time I wanted only to be in another culture, so I’d have an excuse for just not “getting it”. Now I’m with my roots and I feel their hidden disdain for my existence. And I’m not running. I’m too tired and too old now. They’re stuck with this smart, retarted man. And I will take to isolation more and more, but I won’t be out sight out mind. But communication at times baffles me much more than one could tell. Well, not sure if it’s denial or pride, but I think for the most part it has been an area that has bewildered me. It’s that it fluctuates some and in my compensation and extreme need to focus and to remember, I can, at times, be more aware than anyone about what is being communicated. The problem is that there is usually a lag time. And in mid flight I’m stuck on details and snippets in the conversation that makes me miss much meaning that gives life meaning to our social species. Many people have told me that I had autism, but over the years, I am more convinced that it was the result of traumatic brain injuries. Some have said that they see it as absence siezures. And the psychologists see it as dissociation. People point to all that I accomplished in the world’s terms. As if it is proof I should see the last 25 years as a success. They point to pictures when I am smiling. And point out that I am “witty” and that wit takes intelligence. I feel dumb as I struggle to get around their idioms and block out sensory stimuli. I also in private and on many nights, wish that I did not wake up December 1991. I see my life as a complete flop. All my dreams passed me by. They see me as having lived the good life and wasteing my God given talents. Just a squanderer who needed a kick in the ass. I see myself as someone who needed much patience and understanding and encouragement. But one who got that from a special few docs and friends and in the end my precious daughter knows truth of her father who so many told her was crap, but I can’t say people and docs didn’t try; many did but the end, they grew weary and the very best one, discarded me. And down deep I gave up the medical scene. Doctors’ offices are now triggers for ptsd. How sad given all they did do for me even if they diagnosed me wrong. I’m finally saying screw everyone who looks at me as a failure or a nut case. I’m taking a little empathy that I bring to others and going to start giving it to me. I’m 52 and shunned by many. Behind my invisible injuries, seen as con games or character flaws, is a person whose not just had dreams shattered twenty-five years ago, but stopped knowing what I had dreamt of. What constantly hurts me is that I almost pulled it off. At age 39, while on lamictal, I had started to see how far I’d come and started to have live dreams for me. I even learned what “love” in the romantic sense could be as I knew it before 1991. But in early 2000’s I had another brain injury and now I feel that it’s too little too late. And I don’t have much energy to pretend anymore. But as disappointed I am with my life, I do think that I have a responsibility to use the compassion gained by losing my identity to siezure epileptus/coma state. Compassion and empathy are so desperately needed in these times. I cannot waste these byproducts of TBI and PTSD. Aside from the high level anxiety and depression, I feel very brave and strong in a way that I never gave myself credit for and with others yelling in my ear to “wake up” or “schizo” and me not even getting that, but knowing on some level I was the scorn of those around me. Maybe that is an added bonus of surviving, I know the truth and it is good enough for me. I will die knowing I did my best when they thought I was squandering. God bless.

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  6. This is so true — and sounds so familiar on so many levels. I am copying this into a whole post, so that people will see it, and I will write more there. Thank you for writing this.

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