I second that. I know that it’s an understatement to say that it must have been pretty distressing for you before you were diagnosed, and you probably get really tired of explaining all this business to every John and Jane who can’t contain their curiosity, but…well, I have a fascination with the neurobiology and cognitive philosophy, and my first response was “A brain implant–how cool! I wonder how that works?”
So what, if I may be so bold to ask, does the implant do exactly? {As I’m sitting here paging through Shepherd and looking for the relevent sections.}
From what I have been able to understand over the years, my implant actually does a few things all at once. First and foremost, I think, is that it functions as the damaged part of my brain while I am actually charging. That part of my brain is supposed to be, I think, sort of sending a non-stop synchronizing “clocking signal” to the surrounding parts – that’s why my power signal is at 50 Hz. (Just prior to my surgery, they measured the “clock rate” at 14 Hz – much slower and I would have “stopped”… In general, I was moving very, very slowly with everything I did, including heart rate and respiration.) So the circuitry more or less creates an override signal while I’m charging. In between charges, there’s enough energy there to keep me going until the next charge. It’s true that once I turn off my box, the override signal stops, but the tissues don’t immediately revert back to 14 Hz; they start to slow down immediately, but it takes a long time for my clock rate to slow down enough for me to notice. If I’m under stress, it slows down more quickly than it does otherwise, but I can actually go 24 hours between charges if I must, although not on a regular basis.
Another thing my implant does is cause an increase in the production of certain neurotransmitters. I don’t know which ones, but they must be the ones I need, because I actually start to feel better almost instantly when I begin my twice-daily charge up.
Feel free to ask follow-up questions if I didn’t make something clear. In fact, ask anything you want about anything to do with this. I promise that nothing anyone asks will offend me, and if someone asks something I consider too personal, I’ll be completely polite about it. From what I understand about these threads, that’s what a “Ask the <whatever>” thread is all about.
Could you go more into what the symptoms are? I have an extremely laid back friend that does everything extremely slow. Slow walker and slow mover, but most noticibly a slow talker. He says maybe 2 words a second and they’re often kind of drawn out. They are however not slurred in any way. Just… slow.
Thanks for responding so candidly…though I think now I’m going to spend the rest of the evening pouring through Shepherd and Glynn to get a better understanding.
I should really just bite the bullet and go back to school for this. It fascinates the hell out of me.
Sorry to hear about your friend being so slow. My guess is his problem isn’t mine, but, then, I’m no medical doctor, and I’m not there! I’m just basing my guess on what my doctor told me about my problem – it’s very, very, very unusual. Does your friend have any other neurological symptoms? Remember, I’m not a physician and couldn’t diagnose him long distance even if I were.
Anyway, yes, I was slow with everything. I was extremely tired all the time, to the point of exhaustion. I often felt as though I could not catch my breath, and as a result would often hyperventilate from taking too many deep breaths. My brain function was also depressed, which resulted in suicidal depression (I went straight from a psychiatric hospital to the neurosurgery ward at another hospital to have my “installation”). I could not think clearly, nor easily reason things out. The only thing about me that was “lively” were my dreams – they were very vivid, very active, very long and drawn out (subjectively, of course), and many of them, every night. And, I had a tendency to dream about being in pain. I had no sex drive at all, very little appetite (I also could hardly taste anything), no interest in anything – I think my psychiatrists diagnosed severe suicidal depression with unexplained neurological symptoms (that was the tremor in my right hand).
Oddly enough, before I got that bad, I appeared to be manic-depressive.
Well definitely not my friend then. It’s not really a problem for him other then people automatically assuming he’s high all the time.
Since you’ve gotten your implant have you ever allowed it purposely or accidentally to lose charge? Do you ever have to have surgery to replace a worn out battery?
Yes, a couple of times I’ve let my charge run down, but it was never on purpose. I call it a “brown out” (bad joke, I know). It’s always been because, for some reason, I was unable to charge up. One time, for example, was because I was unable to get back home for over twenty-four hours, quite unexpectedly. When I’m unable to charge up, for whatever reason, I start to experience the same symptoms I had before my implant, although not to nearly the same degree. No one knows, but I suspect that it would take about a month for me to get back to the same state I was just prior to my surgery. I hope that never happens, because it would be the worst month of my life since my surgery except for when my first wife died. Just about the only unpleasantness not associated with this syndrome is pain – with me, there is no pain. That’s not always the case, however, for all patients with this syndrome – in my father’s case, he had headaches so bad he literally could not see; he described his vision during a headache as being nothing but a red haze (fortunately, charging up instantly eliminated his pain, but usually my mother would have to hook him up and turn everything on because he was in too much pain to be able to do it himself).
As to having to replace batteries, that’s not a problem, as there isn’t a battery in my midbrain. What happens is that the brain tissues themselves absorb the energy from the circuitry. I don’t understand how this happens, but it makes sense (to me at least), given that the brain is an electro-chemical machine. The only battery is in my iPod-sized box – a nine volt battery, which needs replacing about once every two or three weeks.
If something happens so that my circuitry requires replacement, I’m probably up that metaphorical creek, paddle-less. My original surgeon is deceased, and there are maybe three physicians in the world who specialize in this syndrome. In addition, the process of pulling out what is there and replacing it would very likely be fatal, if for no other reason than it could easily trigger uncontrollable and unstoppable seizures (I also have epilepsy; it’s unknown whether this is because of my brain damage, or because of my implant, or because of some unrelated cause).