My Life as a Semicolon ; ): You CAN Get There From Here

Sunday, May 01, 2016

You CAN Get There From Here

A few weeks ago -- to "celebrate" Brain Injury Awareness Month (March), Brain Injury Voices (the BI advocacy group of which I'm a member) held a resource fair of sorts at the rehab, including a panel discussion and tables displaying tools of the trade (I showed off some Assistive Technology like my one-handed nail clipper and Dragon Naturally Speaking) and spoils of war (some members have published books or created impressive works of art).

I also participated in the panel, entitled You Can Get There from Here (a twist on the common Maine expression, "Oh, you can't get they-ah from he-yah". The idea was to demonstrate different approaches to navigating brain injury recovery. My focus was on regaining independence, especially through use of Assistive Technology.

It was a structured conversation, and I followed a pretty firm outline; so I thought it would be enlightening to publish those notes here. After all, this blog has been a key Assistive tool in my recovery. I've pasted my talking points below, sub-headed with the questions our moderator asked and elaborated on [in brackets]. The experience was a nice reminder of how far I've come and hopefully gave other survivors hope for their futures.

1. Brief Introductions

· In the fall of 2010, I was a 40-year-old father of two young boys, husband, and computer nerd when I learned…[aneurysm, stroke, yada, yada, yada].

· My focus is on how Assistive Technology has helped me compensate for my deficits and regain a sense of independence for myself as an individual and as a caregiver to my family.

2. Moderator asks each panelist, “How did you start?”

· One always starts with a choice of whether to accept or resist a challenge. Initially, I did choose to accept but have admittedly struggled with what’s often felt like a shove to reclaim my old life: getting back home, not being a burden to my family, and returning to work (since I’d been the sole bread winner) – meaning it sometimes felt like I had to abide by choices being made for me by family, doctors, and my old self.

The beginning – acute rehab – was easiest, because it had those explicit goals in mind – but in retrospect it was also hardest, because it lacked the insight of perspective on my predicament, perspective that's only come with time.

Over time, I've focused on my strengths to ease back into my 2.4 kids/white picket fence life:

Problem solving
Troubleshooting
Using Technology to help me adapt
Writing to give myself a voice and keep people informed of acute medical news and progress

3. Moderator asks each panelist, “What were the challenges/distractions?"

Getting back to and staying at work in order to support my family has been my biggest challenge.

· Because my job is primarily computer based and my employer was flexible (gave me time to complete in- and out-patient therapy), working from home was a good way to transition back to work, but I couldn’t fully return to work in the office without being driven or regaining my license:

I relied on co-workers to carpool.

I had my car modified for one-handed driving and took my test after a year and a half.
[showed spinner knob and reminded audience I'd have more Assistive Technology that's helped me compensate on display after the panel discussion].

My physical deficits have generally been easier for co-workers to understand and accept, while over time I’ve struggled to educate them about my less visible challenges surrounding focus, fatigue, motivation, and filtering (in and out) – which means I may say inappropriate things at appropriate times and appropriate things at inappropriate times [and, I assume, sometimes, appropriate things at appropriate times and inappropriate things at inappropriate times].

4. Moderator asks panel “How did you get ‘here’ from ‘there’?”

First, I had to realize that “there” as a destination is a moving target and that being comfortable with “here” as a destination is most important. As Buckaroo Banzai said, “No matter where you go, there you are.”

Lack of Independence for me has often been tied to limitations of my left arm and hand and balance, so assistive technology has helped me compensate [I’ll have many items on display after the panel discussion], but Goal setting, practice, trial & error, adaptation, acceptance, and persistence have also been key.

For example:

I decided that carrying something from the kitchen to the family room -- without my cane -- was an important goal and worked toward that and achieved it with relatively few spills.

In order to get myself dressed and ready for work on time each day, I had to teach myself to take the time and push through the frustration of doing it all one handed.

I also had to adjust my expectations and be willing to accept mis-buttoned shirts and backwards underwear sometimes.
Giving myself extra time to complete tasks and/or get where I'm going makes my life easier and safer:

In 2014 I finished the mile-and-a-half Maine Aneurysm Walk about an hour after all other participants had gone home. In 2015 I asked the organizers if I could start an hour and a half early. And that’s how -- in one year, with little training but lots of humility and adjusted expectations -- I went from last place to first.

5. End with a wisdom statement by each participant

Hope for the best; find a way to make the worst work best for you.

My Life as a Semicolon ; )

Sunday, May 01, 2016

You CAN Get There From Here

1. Brief Introductions

2. Moderator asks each panelist, “How did you start?”

3. Moderator asks each panelist, “What were the challenges/distractions?"

4. Moderator asks panel “How did you get ‘here’ from ‘there’?”

5. End with a wisdom statement by each participant

No comments :

Post a Comment

Total Pageviews

Totally Achievable Bucket List (post-surgery edition)

Contributors

Blog Archive By Category

Popular Posts

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.