My Life as a Semicolon ; ): The New Abnormal

Saturday, January 26, 2019

The New Abnormal

The good news is that after my endoscopy, I was able to eat fairly normally for a couple of weeks. I managed a meaningful portion of Thanksgiving dinner (including a slice of pie), and felt optimistic. It was amazing how many people came out of the woodwork to recount stories of how they or a family member had gone through a similar procedure with long term success. But have I not already established that I'm anything but typical? By early December, my esophageal spasms returned if I ate too much or too quickly. For some measure of what that means, my Pizza and a Movie Night had become a single slice, nibbled over the course of a good ten minutes, with the end crust going to the dog. The good news is that Jamie bought me a Nutribullet for Hanukkah, so the bulk of my diet is able to come from very healthy smoothies. The bad news is that I continued to lose weight -- maybe another 10-15 pounds. The good news is that I'm a little closer to my BMI target. The bad news is that the BMI is stupid. The good news is that last week the gastroenterologist was able to get me in for an Esophageal Manometry to test the movement of my esophageal muscles and esophageal sphincter/valve. The good news is that added to my unpleasant collection of catheters. The bad news is that the test diagnosed me with Type II Achalasia, a rare (lucky me, always defying the odds) disorder which causes spasms in the esophagus and a failure of the valve which opens to release swallowed food into the stomach. Weeeeee!

So what's next? Well, I'll be seeing a surgeon soon to decide between two options:

A repeat of the endoscopy, this time with a Botox injection to keep the valve open (and younger looking)
A Heller Myotomy with Fundoplication

My understanding is that the second option, while a little more invasive, is more of a permanent fix than the Botox,which only lasts six months and can create scar tissue which would interfere with a subsequent Myotomy. Ironically, the Fundoplication (fun to say) is an add-on procedure to prevent the surgical opening of the esophageal sphincter from causing reflux (which was pretty much where this adventure began). Not that I'm eager to go under the laparoscopic knife, but I'm guessing that's what's in my relatively near future.

So, once again, I'm playing a bit of a waiting game.

Once upon a time -- between my aneurysm diagnosis and surgery -- I saw a psychotherapist to help me process everything I was confronting. He talked a lot about the anxiety of my limbo state, as I waited to discover my, "New Normal."

Two years after my stroke, in the spring of 2012, I remember a friend at my 20th college reunion commenting on how well I seemed to have adjusted to my predicament. She meant it as a compliment, and I took it as such -- I was definitely getting to a point where I was settling in to life as I then knew it, growing beyond my Pre-Stroke sense of self, and even surprising myself a bit. For instance, my wheelchair had been in the trunk that entire weekend, but I'd never taken it out, opting instead to slowly shuffle around campus. So I was feeling pretty good about myself.

A few months later, seemingly out of nowhere, I had a grand mal seizure that scared the bejeezus out of Jamie and landed me in the ER. Fortunately, that turned out to be a one-off.

Six years later, I think I'd allowed myself to enjoy some complacency again, allowed myself to think I knew what I was doing, to casually go about my business.

Then came my back issues, taking me down a peg or two. Then came my swallowing issues, shrinking me down a size or six. 2018 was a year of the unexpected. I'm trying to let this year have its way with me without surprising me half to death. Is it even possible to be prepared for anything without being paranoid or creating self-fulfilling prophecies?

At my 25th college reunion, I developed a self-soothing technique when I woke Monday morning with the thought that overnight parking might be a towable offense on Sunday nights: Without quite, "...wishing for bad luck and knocking on wood...", I proceeded to paint a mental picture of what I would do if I were to look outside and discover my car gone: quite reasonably, I thought I could get a taxi or Uber to the impound lot; being Memorial Day, the lot might be closed; I could see if I could stay in the dorm one more night; if not, a hotel (I could probably take the next day off work). This technique eased my anxiety and made the act of peeking down the street to see if my car was still there far less intimidating, because I knew -- step by step -- how I would have handled the alternative. Turned out, the car right where I'd parked it the night before, and I'd peacefully planned for the worst without spiralling.

So as proud as I was to perform this anticipatory problem solving, not all hurdles are so easily seen coming down the road. Yes, some would probably have predicted -- given my age, weight gain, and asymmetrical muscle strength distribution -- that it was only a matter of time before my back or knees (or both) gave out on me. And while I appreciate application of the scientific method as much as the next devout agnostic, I also enjoy the delusion of living without fear of unintended consequences. For one thing, even Know-It-Alls don't know everything. No one predicted achalasia in my future, especially since there is no known correlation with strokes. And no one knows what the next thing will be. For all I know, the next unexpected course change in my life will be that there isn't one. Maybe that's just wishful thinking. Moreso, I have to be satisfied believing that no matter what challenges I face, I can withstand them. I believe the platitude is: "If you're handed it, you can handle it." I don't believe there's a plan for me, but I know my plan is to roll with the punches, whatever they may be. I think I've become pretty damn good at it.

Bring it on, 2019!

My Life as a Semicolon ; )

Saturday, January 26, 2019

The New Abnormal

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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.