Where I would be the head knucklehead.
I keep thinking there must be some science to this whole brain injury recovery that is somehow escaping me. While I know that every situation, every brain, every injury, every patient, and ultimately, therefore, every recovery, is different, the lack of information I have gotten on what the extent of Mike’s injury is and what strategies will help with which facets of his injury is pretty generic. For his memory…repetition, write it down. Yeah, yeah, yeah. But what’s WRONG with his memory, what is AFFECTED, how BAD is it…how RECOVERABLE is it likely to be. I am not a knucklehead who feels real good with the “nobody really knows” kind of answers. I feel unfulfilled. I feel helpless. Impotent.
Irritated. I’ve been walking around, uncharacteristically, believing this. Still, I read articles about the fantastic rehabilitation programs that are out there and get a gnawing feeling that I’m missing something.
This is not to say that Mike’s rehab has been substandard. On the contrary, it’s quite good, and conducted by the leading rehab facility in the area. I suspect that the difference between the rehab in articles and the rehab we are receiving is prosaic…it’s described by people gifted (very gifted) in the art of rhetoric. Still, it gnaws at me. And gnaws. I like things that have some definition, something concrete…a course, a plan, a roadmap as it were. I feel like I’m flying blind, no map to read, no plan to follow, no definition as to where the trip is planned so that a map can be drawn.
I do know certain things. There are communication deficits and those have names. There are cognitive deficits. Those have not been quantified. Or described. Or identified. At least not to me. I suspect that since my friends at Highmark were uninterested in approving Brain Injury Rehab treatment, and they don’t cover cognitive therapy at all, the neuropsychological testing would probably likewise not be an approved insurance pre-cert. And certainly then, repeat testing to gauge progress, to see what has changed in the very dynamic landscape of brain injury recovery , is even less likely to be positively received by the insurance company.
I suppose some would argue that since Mike is 61 and no longer working that it is pointless to try to rehabilitate these kinds of things so aggressively. And frankly, he could conceivably live the rest of his life making the marginal daily improvements he has been making. He has already far surpassed the prognosis for his type of injury and the severity of it. However, there are issues related to his deficits that cause emotional turmoil for him which, when combined with the already emotional lability that results from the brain injury itself, create anguish for everybody in the family. Some days are pretty rough indeed. Wouldn’t it be great if we could ameliorate that somehow?
Bigger than that, however, is an underlying physical issue. Mike’s left main artery is stented. The interventional cardiologist who saved his life in that cath lab told me he would require cardiac cath’s every 6 months to ensure that the artery is not closing. (Truthfully, after the last cath I am not sure I could stand the idea of subjecting him…or me…to a cardiac cath ever again.) Still, it is the gold standard, and from my perspective, the only reliable measure of ischemia. The interventional cardiologist told me that if the artery approaches 60% stenosis again, Mike should be evaluated for bypass surgery (CABG).
When I brought this up to his cardiologist…a guy in the same practice as the interventional cardiologist…I was told a chemical stress test without exercise would give an accurate enough idea (I disagree…he had a chemical treadmill stress about 6 months before his attack that showed no ischemia! Likewise TEE…it also showed no reversible ischemia.). However, when I spoke about bypass, he told me (rather coldly) that Mike would not be a surgical candidate due to his lack of a complete recovery. Or, to put it as charmingly as he did “No surgeon would touch him as he is.” Thus, I have a very vested interest in enhancing the opportunities to effect as complete a recovery as I can for Mike. I am unwilling to have had Mike fight this fight as hard as he has only to be denied surgery that might save his life because his therapy was not adequate. I need information to prevent that!
With a bit of research I discovered that a woman named Muriel Deutsch Lezak wrote a book called “Neuropsychological Assessment” which is thought of as the gold standard in the field of neuropsychology. In my typical take no prisoners fashion, I have determined that I must help myself to help Mike here. I’ve hunted down the book…no mean feat I can tell you!…and gotten my library to get a copy from one of the local University libraries. I have the book…the 3rd edition, so outdated to be sure…until the 26th of the month. It’s about 800 pages of good stuff about brains, brain injuries, neurological diseases and conditions and…most importantly…assessing them. I’ve long held the belief that you can learn anything from a book if you want to badly enough so I’m going to give it the old college try to figure out how, to the best of my limited abilities, I can evaluate what Mike needs in order to recover more effectively…or if it’s even possible. My family doc told me I know more about critical care and cardiac medicine than he does after Mike’s hospitalization (which scares me since he’s an internist so I’m shopping for a new one) so it stands to reason I should be able to fathom this as well. Not that I intend to analyze personality or psychological conditions…merely that I want to develop a roadmap to help me to figure out and prioritize what kind of therapy Mike needs….then either get it or research it and deliver it myself.
Wish me luck. I’m feeling kind of daunted for the first time in a while. Maybe all I’ll find out is how to eradicate the run on sentence part of my brain. Which I seem to be extremely proficient at writing. I hope that will come long before the 800th page. SIGH.