My Life as a Semicolon ; ): I Can't Stress This Enough

Sunday, January 12, 2014

I Can't Stress This Enough

In case you didn't know or have forgotten (sometimes I do), during or near my stroke, I had a heart attack. At the time, there wasn't enough data to put a firm name on it, so some doctors were even hesitant to call it that. I've heard it referred to as a "cardiac event" (which sounds relatively benign -- beating is a cardiac event, too). My favorite term for it, of course, is "infarction". Ultimately, it was determined that the stroke and/or brain surgery itself was the cause; so I've diligently avoided those activities. Fairly reflexively, I was put on beta blockers and Lipitor to keep my blood pressure and cholesterol, respectively, in check and discourage a repeat heart or brain attack. I've also been on a low-dose (81 mg) regimen of baby aspirin (though I had to clear that with my neurosurgeon because aspirin's not aneurysm friendly).

Now, when I say I forget about the heart attack, it's because it's had relatively little effect on my life. The stroke, on the other hand, has become a part of me, like this cyborg. I have integrated the stroke with the rest of my life, so much so that when I recently dreamed about a two-handed task and performed it, I awoke thinking how strange it was that my dream self didn't question the obstacle or ask for assistance.

On the other hand, I perceive my infarction as a cardiac non-event, because I was taken off the blood pressure meds within the first year, had my dose of Lipitor cut in half, and have only had one scare of light headedness during out-patient rehab (which was tied back to low blood pressure and moving from balance exercise to cardio exercise too quickly).

In December 2010, facing general anesthesia for the first time since my stroke, we did implore cardiology at Mass General to do some precautionary testing. Thus, I had a chemical stress test the morning of my cranioplasty in order to clear me for surgery. This type of test is intended -- for patients with physical disabilities -- to simulate the results of a traditional cardiac stress test by substituting running on a treadmill with medication which causes the heart to race. In both types of tests, a radioactive tracer is injected and followed through images of cardiac blood flow. Fortunately, the results of that test showed no damage caused by the September 2010 Event, and I was cleared to get my skull reassembled.

I'm bringing this all up again now; because at my recent, annual check-up with my cardiologist (another reflexive result of the Event), I mentioned that I'd recently received (thanks again, Mom and Dad) a recumbent stationary bike, was planning to start a more vigorous exercise routine with it, and am hoping to purchase a recumbent tricycle in the spring (still shamelessly raising money). Now that I'd properly followed the small print that says to consult one's physician before beginning a new exercise routine, my doctor felt that a new stress test was warranted. And so, and so, I stressed myself out. As I've been saying, I wasn't terribly concerned, since I've generally been feeling fine; and the 2010 stress test showed no lasting damage. But I did wonder whether three years of relative inactivity (much as I personally consider getting out of bed and making my way through the day to be vigorous exercise) could have taken its toll on this supposedly-middle-aged body of mine). I've also felt more enthusiastic about cycling than any other form of exercise and was worried that ambition could get shot down.

Without further ado, I'm happy to report that my tests came back very positively, and I'm not facing any medical restrictions on exercise! I've been sitting on this news until now only because you know how I love to share images of my innards, and I've been waiting for the disk to arrive. According to the doctor's office, that could still be a week away. From what I've found online, they're not all that dramatic or easily deciphered anyway (see examples below):

Sample EKG read-out (not mine)

Sample radiology images from a chemical stress test (not mine)

Then the idea of completing my collection of body scans got stuck in my craw. I drifted back to 1974, sitting on the kitchen floor with a flip-top circus flashlight:

I had removed the batteries, placed the tiny bulb in the base, and was pretending it was medicine-- I'd swig the bulb, spit it back into the flashlight, then repeat. Ironically -- given how terrible I am at swallowing pills now -- the bulb just slid down my throat. As you can imagine, quite a panic ensued when I reported this news to my mother; and everyone scrambled to find the bulb on the floor (no one believes us attention-seeking youngest children). I was then rushed to the emergency room, where I was X-rayed and sent home to "pass" the bulb (my Grandma Etta ended up with the unenviable task of confirming I had done so[suffice it to say, rubber gloves and a popsicle stick were required]) . While I have some vague hope that that X-ray is still in a file cabinet in Mountainside Hospital's basement or microfiche archive (the bulb itself is long gone), the memory of the four-year-old boy trapped inside me remembers it looking something like this:

Note the floating bulb

Bad bet

Despite the good news of my stress test (which at least allows me the freedom to use my stationary bike -- especially now that my friend Marc has attached an adaptive support that keeps my left foot from slipping off the pedal) and the fact that I generally feel fine, I'm still dogged by the specter of my medical history. Every year my company has an open enrollment during which to make adjustments to our various insurance plans. While, thanks to the Affordable Care Act, I don't have to worry about my health insurance being revoked or premiums increased due to pre-existing conditions, requesting an increase to my Disability and Life insurance plans proved a no starter. I can certainly appreciate how on paper and in actuarial tables, my medical underwriting application would easily raise red flags and denial, due to my, "history of a stroke, heart attack, seizure, sleep apnea, and hemiparesis." Yeah, but other than that....Based on most of the standard questions, I should be eligible ten years out from my infringing events. So, hopefully, hindsight will come in 2020.

The "pedal cage" for my stationary bike

My Life as a Semicolon ; )

Sunday, January 12, 2014

I Can't Stress This Enough

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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.