My Life as a Semicolon ; ): December 2014

Sunday, December 28, 2014

Head Games

Back in college, my friends and I would periodically go to school hockey games, and there was always some guy (probably on his second keg), screaming, "Hit 'em in the mind!". I never took it as a call to skull-splitting, cross-checking violence but rather what passed for Ivy League frat boy psychological warfare. Don't know if it helped us win, but it always livened up the arena.

This Christmas, my parents bought me MindWave, an EEG biosensor which is intended to measure basic brainwaves, mostly around attention and meditation. I actually had my first EEG testing back in 2010, to look for any seizure activity. I had subsequent scans during sleep studies for apnea. This winter, I plan to start some EEG-based neurofeedback treatment at the rehab to learn some self-regulation techniques and possibly map topographic activity within different lobes. I have plenty of pictures showing damage caused by the stroke, but none which show healing. Depending on who you ask, the damaged or dead brain cells on a fair portion of the right side of my brain can no longer serve a purpose. However, there is increasing evidence that merely damaged cells can generate new cells (neurogenesis) and that healthy brain cells can be rewired and recruited to perform activities beyond their original intention (neuroplasticity). For instance, even though the right side of my brain used to control the left side of my body, my current left-side mobility is now presumably controlled by retrained neurons in my left hemisphere. Or, so the theory goes. I may never know for sure. Some might say it's a moot point -- the proof is in the pudding: if I can move my left side, it doesn't matter how or why. It's one of the many ways we are blissfully ignorant of how our bodies manage to function. But I'm curious nevertheless. That's why I'm looking to go down this rabbit hole.

The Mindwave EEG has given me a preliminary picture (below), though I'm certainly not well equipped to interpret this brainwave data:

Brainwave Visualizer: shows the fluctuating levels of different types of waves.

Mindwave also includes some games designed to hone attention and meditation skills. Here are some screenshots:

The Mindty Ant: By focusing on the fruit, you help the ant roll it into his food cache.

Mind Hunter: Focus allows the game to target animals, blinking then shoots a bubble that whisks them away (very child friendly).

Zombie Pop: You focus on the zombies being made in the zombie factory in order to pop their heads. I haven't yet made it to the level where you actually fight the zombies.

I'm not quite here yet, but I'm working on it.

My friend Marc -- unaware that I was experimenting with EEG already -- found a perfect non-virtual companion Christmas gift to the Mindwave with a MindFlex he found at GoodWill. It uses EEG focus and relaxation to appropriately speed and slow a fan beneath an accordingly rising and falling foam ball, with an eye toward navigating an obstacle course. Like this:

Now, while all of this attention and meditation exercise is a distinct area of improvement for me; and tapping directly into my brainwaves is cool, a pretty big part of my self-prescribed mental exercise regimen has long included retraining areas of memory, strategy, logic, spatial organization, and word finding through apps like:

There are more formal brain training programs like Lumosity and Mind Games, but I find them a little too clinical.

Thursday, December 25, 2014

Whoomp!

Here it is: I like Big Buts, and I cannot lie.

In this stretch of the year emphasizing gratitude, I find myself exhausted by thankfulness. This occurred to me initially on the day after Thanksgiving. I know it's called Black Friday because it's the start of holiday shopping and a profitable turn for retailers (getting, "in the black"), but it certainly sounds ominous, like the mayhem of getting up at three in the morning for the sake of a good sale. I realized in the midst of all my gratitude, I wanted to luxuriate in a bath of sour grapes. Black Friday could just as well be a day of well-earned resentment and bitterness -- bitter like a black cup of coffee.

Often, I feel like I can't complain about life because my near-death experience is supposed to have provided me some kind of grand perspective and enlightenment. That brings me back to the Big Buts -- horrible things I feel but am not supposed to admit, lest I sound petty or self-pitying:

I am and will forever be grateful for the support my wife's given me over the past four years, but I am bored with feeling beholden to that bolstering and being unable to resent the coddling I sometimes receive. Jamie, by the way, feels the same -- how can she properly and righteously get pissed off at me when I literally went to the brink of death and back for her and the kids?
I love and appreciate my kids for [mostly] smiling through our mutual trauma, but I do question research showing that people with children live longer than those without or that married men live longer than single.
Given what I've been through, I am very fortunate to hold a job and work with and for people and a company who want to see me succeed; but work can be a slog of ridiculous politics and facades. As meaningful as the end results of my work may be, sometimes it feels like all we manufacture in a white collar industry is angst.
My friends have been a force of encouragement, but I've found myself regularly having to be the one who invites, rather than the one invited; leaving me wondering if I've somehow ostracized myself by getting sick and being a downer. Of course, no one would admit to intentionally leaving out the strokey guy with the cane, but it can feel that way. Or, maybe I just prioritize escaping my life more than others.

If I hadn't burned my bridges before, maybe I've stuck my foot in it now. I'm not saying these things because I think I'm entitled to get away with it. I'm saying them because I think everyone has legitimate gripes sometimes, and honestly complaining about what I have doesn't mean I don't know how lucky I am to have them.

Someone at my brain injury support group threw out the motto, "Above ground and walking," to express the blessing of life. But, once again, I'm forced to question the notion that every moment is sacred.

Mindfulness teaches us to live in the present but also to not judge what we're feeling in that present. Yes, the present is a gift. We tend to praise and reward ourselves for feelings of gratitude in the moment. Not so much bitterness and anger. Neither end of the spectrum should be inherently good or bad. It's mostly subjective. Mind you, suppressing anger and resentment is tangibly unhealthy but, then again, so might expressing them. Fear is generally considered negative but is at least instinctually protective. What's resentment for? I'm still working that out and generally try to steer clear of it for that uncertainty -- it feels fruitless. Translating rage into anything other than an outlet -- even if it's an honest venting of legitimate emotion -- is rarely productive.

That said, just because it feels good to rant, I've compiled a list of rage anthems (from the man who has nothing to complain about):

Turn it Down for What?
We're Not Gonna Take It
Fight for your Right to Party
Sabotage
Sleep Now in the Fire
Anarchy in the UK
Fight the Power

In conclusion, Happy Holidays! Here is a gift of a picture of an early Christmas gift Jamie made for me this year. It's a pretty spectacular representation of the support I've had and am grateful for, even if it means I need to walk with the aid of a cane. Dammit. There it is.

Candy Cane cane

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My Life as a Semicolon ; )

Sunday, December 28, 2014

Head Games

Thursday, December 25, 2014

Whoomp!

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.