Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.
Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me. Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.
Because there are plenty of them out there.
So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.
And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.
I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.
So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.
As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.
So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.
And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.
Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.
So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.