Previously, I wrote about the physical aspects of my rehabilitation: physical and occupational therapy. I’m happy to say that I’m ambulating just fine these days, and that according to my phone, I’ve averaged about three miles walking per day for the last month, despite lying on hospital beds for half of that time. The stickier and more worrisome issue is cognitive rehabilitation.
The good news:
1. We’ve detected no changes in personality, which is very reassuring. No changes in impulse control, or my sense of humor, or anything related. It didn’t necessarily have to work out like that, which makes me very grateful. If anything, I find myself more irritable than usual, especially with respect to small, repetitive sounds, like loud chewing, chronic throat-clearing, and text-message notifications. But, it’s unclear whether this irritability is coming from the anti-seizure medications (it’s a well known side-effect of Keppra), or simply the stress and strain of a goddamn cancer diagnosis. In any case, I’m trying to keep it together because irritability doesn’t do anyone any good.
2. Memory: largely intact. I’m forming new memories with no major issues, and as previously, I remember conversations and dialogues with more or less perfect accuracy from decades ago.
3. Verbal fluency: also unaffected. Again, it didn’t have to be this way, so this outcome makes me extremely grateful. I write and speak for a living, so being able to understand and find the right words couldn’t be more important. I’ve been tested almost a dozen times by now, and no one (to my knowledge) has seen any deficits in speech or language skills. This blog has attracted almost 2,000 hits already, and over 600 unique viewers, so I presume that’s decent evidence that I can still string readable sentences together.
The bad news:
1. There are some deficits in attention. At Mercy Rehab, we told the doctors that I lecture and write scientific manuscripts for a living, and that I needed close attention on the cognitive side of rehabilitation to recover the highest levels of performance. These sorts of things get lumped into speech therapy, so even though I just told you that no one has been able to detect any speech deficits, I was paired with Shannon Lynch, Mercy’s excellent speech therapist, and she did a series of evaluations that revealed some weaknesses in attention. This was troubling to me, since I’ve always prided myself in my powers of concentration. I remember commenting that in times past, I used to be able to drive safely on Highway 91 in Connecticut (my Yale friends can attest that this often requires white-knuckle levels of concentration) while listening to my older daughters sing Frozen songs at the top of their lungs, while simultaneously thinking about how to analyze next-generation sequencing data. Shannon, ever game to help, gave me a deductive logic puzzle to work on while personally singing “Let It Go”. She obviously couldn’t simulate Highway 91, and I’m not allowed to drive for another five months, regardless. Still, that’s a moving level of dedication to her patients that goes above and beyond the normal call of duty. When I had my neuropsych evaluation, they tested me on “digit span”; basically they see how many digits I can remember backwards and forwards; when they got up to eight digits, honestly, my attention drifted off a couple times, and had to ignominiously say: “I have no idea; I spaced out” when they asked me to repeat the digits I was read. This is troubling, and I’m working hard on rectifying it. My wife also tells me that I have a tendency to “drift” in conversations these days. If I do so to you, please gently redirect me to the essential point; I understand this is an issue.
2. There are some deficits in executive function. These are high-level organizational functions; planning, problem solving, etc. These are the sorts of things that often get lost in Alzheimer’s Disease and are essential to high-level cognition required in competitive, scientific fields. At Barnes Hospital, immediately after surgery, I was asked to draw a clock as accurately as possible. This is a conventional test of executive function — they want to see if you can plan out exactly where to place the numbers, and I knew exactly what they were testing when they asked me to do it. And yet, the outcome was still bad (see nearby image). It’s very, very discouraging when you’re smarter than the test, and yet, you still fail it. Why I was confused about how Roman numerals work is another story… I’m happy to say that my clocks have gotten much better in the last few weeks, to the point that there’s no obvious deficit. Likewise, the neuropsych folks love to give “Trail” exams. I’m unclear exactly how these reveal executive function, as they seem pretty linear (by definition) to me. But, apparently, I’m a little slow drawing my trails. And, I will say that early on, I would forget which number was under my finger while drawing the trails on the iPad, which makes the task much harder, and certainly reveals at least some sort of worrisome cognitive deficit in working memory, if nothing else. Like the clocks, I’m happy to say my trails have gotten much better in the last few weeks. Whether that reveals improved executive function, or improved working memory and attention is debatable. During my neuropsych evaluation, they gave me an exam (I think it’s called a “category test”) where they would show images that refer to one of the numbers ranging from 1-4, and you would have to say which number the image represented. The examiner would reply “correct” or “incorrect”. So, basically, you have to construct multiple hypotheses to explain how the images map to the numbers, and test these hypotheses, where the only feedback you receive is a “yes” or “no” from the examiner. This test made me very cross. They had five different versions, and I’m confident I “got it” on two of the five. On the other three, I struggled, and I knew I was struggling. I’m not used to scoring below the tenth percentile on any exam, much less an exam of mental flexibility. I have to say, I get cold sweats thinking about that part of the exam… after seizure day, I’m morally certain that confusion is the worst possible feeling in the world, trumped possibly by confusion while performing a task when you KNOW that weeks earlier, you wouldn’t have been confused at all.
From the summary of my neuropsych evaluation: “Dr. Hughes remains in the early stages of the recovery process, and continued improvement is expected as he convalesces. In fact, the neuropsychological recovery he has demonstrated thus far has been remarkable.”
The plan for cognitive rehab:
I’m reminded of what one of Jing’s midwives said when she was pregnant with Sophie: “You don’t need to eat MORE than you ever have before, you need to eat BETTER than you ever have before.” I’m thinking the same general idea, as applied to food for the mind will answer well in this case.
1. This blog. Besides being emotionally cathartic, it does obligate me to organize thoughts, craft readable sentences, and attend to the technical details of good writing. thanks also to Jing who edits my posts and keeps me out of serious mechanical trouble.
2. Music. As the “About” section states, I’ve been listening to Bach every night, and I’m struggling mightily to learn to play the Prelude to his first Cello Suite in G-major on the guitar. I would publish a video of my progress so far, but alas, I’m kinda stuck at the moment (there’s a phrase that asks me to span the fourth and eighth frets with my index and pinky finger, which is awfully difficult with the left-sided weakness and all), and I’m taking a little break, lest my musical frustration spill over into the rest of my rehab plans.
3. Brain Baseline. This is a series of iPad tasks that measure different aspects of your cognitive performance. I’m happy to say that the nearby image shows measurable increases in performance in everything they measure since I’ve been discharged home. I’m unclear why some aspects start at the 100th percentile, while others start at the 0th percentile. In any case, ignore the discontinuity near the earliest dates. Very encouraging to see executive function and attention both back into the not-impaired range. Memory, as expected, has returned to > 90th percentile.
4. Lumocity. I spend probably two hours per day playing different Lumocity games, with an emphasis on flexibility and problem solving games. I don’t have the trends in front of me, but I’m certain they will look at least as good as the Brain Baseline trajectories when I get around to compiling them.
Altogether, cognitive rehab is kinda fun. Lots of games and consequently, lots of chances to set new, high scores. Measurable progress in anything is one of my favorite things. When I got out of surgery, and for the first week or so thereafter, I definitely felt cloudy and impaired. I think that’s improved to the point that I may be approaching my pre-surgery baseline. I have another neuropsych evaluation planned for mid-summer, which will be an interesting checkpoint. Also encouraging: I may not be on Keppra forever (we have an appointment with Neurology to discuss tapering the dose). Although I certainly appreciate the need to prevent further seizures, I’m certain that the Keppra has sedated my brain to an extent, and I’m anxious to see what happens to cognitive performance when that gets tapered.