confirmational premise

http://www.vision3d.com/eyecare/

 

tricks of the trade

For unfamiliar territory and unknown walking distances while still building balance and stamina, I’m advocating the wheelchair over the walker. It’s great for stability and utility (e.g. carrying bag and towel to/from the showers at the campground, a place to sit and rest at anytime–I don’t know how people can stand the back bar on the rolling walkers that have a makeshift “seat,” not to mention trying to keep larger items from falling).

As my friend Yoda would say, “Quite handy wheelchairs are!” This is another thing I’ve made my own. Mobility aids rock! Just like I found I walked more, and more correctly, using a cane while regaining walking and balance in the late 90s and since then, I now acknowledge the leaps allowed by expanding the situations I even consider pulling out wheels. Bonus: pushing L out on the pier after he had a full day yesterday, allowing me to get a good work-out in, with the insurance of a place to rest if needed. It’s empowering to return and take the hill to finish strongly!

 

awk… oops

My socially awkward moment of the day came when I took my trash out. The dumpster rests on a platform that is a standard curb height. I used to just use the dumpster as a balance reference, but when I went out with just my cane, it was not pretty trying to lift the dumpster lid ~and~ throwing in my small bag. So I took my walker the last time and it was much safer (and I don’t know if I looked smooth doing it, but I felt like I did). Sooo, I actually looked forward to using my walker this time (it’s great stability for a single step with no railing AND fits perfectly on the lip of the platform). As I stepped down to cross the parking lot, a new neighbor from an adjacent building was exiting her car, 20 feet from the dumpster. She ended up lifting the lid for me. It was quite kind of her. In the moment, though, it surprised me. I am improving in strength and doing more generally, but before going out, I had consciously gone through my action sequence (like a seasoned athlete), which is how I knew to take the walker. It’s funny, but I was kind of disappointed I didn’t get to play the game I had just prepared for (insert any of numerous sports analogies here)–and I said something to the effect of the walker enabling my independence, and then caught myself and said a sincere thank you instead of rambling when I wasn’t sure whether she had said anything else. The dumpster lid is unwieldy, afterall… and now that I think of it, she very well could have saved me from a fall. I’m not afraid of falling, but I’m well aware of the disastrous immediate and delayed consequences on us folks with neurodegenerative disorders.

This kind of stuff isn’t really new. I’m just writing more to be writing. And if you have Big Brain Academy Wii Degree, and want to compete/assist me with my cognitive rehab, then drop me a comment or email. If you made iþ this far, I figure you are so inclined.

 

firsts

Today

First time rising unassisted from a low (standard height) household toilet seat since February. I’ve had higher seat extensions and railings since mid-May and am pleased with this development because it’s indicative of more general improvements–AND because I didn’t try to rush it.

First time ever using one of those electric scooters at a store. And rock–it served doubly: first allowing conservation of energy so I had it for the toilet acrobatics (and to clean up after ANOTHER JUNE BIRTHDAY meal and cake), and secondly as a test drive before my real driving assessment in early July. I’m simply happy to be alive, of course. Being able to drive is a great bonus–especially considering my locale, age, and status. The scooter is nifty. My reluctance to use many things (including accessible parking spots and doors in the past) stems from knowing “use it or lose it” rings true to some extent, as well as continually rediscovering shifting boundaries and limits.

 

third party validations

I had surgical follow-up MRI and visit with my NS in Indy last Mon., as well as eye work-up with my neuro-opthalmologist (and several delightful residents, interns, etc).

Largest brainstem tumor stable (news to us all!) and Dr. Witt very happy with my condition post-op this last meningioma removal. Great to see function and strength markedly improved–and especially cognitive and language areas coming back. The lesion was very large, extending on both sides of internal ABI components, and evidenced by the length of the incision. My optic nerve tumor is partially hidden on scans by other things in my head, so we are going mainly by symptoms to assess the status of that. I am to watch for changes in my peripheral vision, especially. Back in a year.

Eyes are generally good. My left one has dry spots, so I’ll stay confidently vigilant on using drops. (I did ask about the larger containers of drops and the gels with the “disappearing preservative.” Confirmed again: it’s the build up over time of the preservatives, as well as increased risk of infection that makes the individual vials I’ve been using since the mid-90s the wisest choice for addressing the more mechanical root (incomplete and irregular lid closure)–AKA warped windshield wiper effect–of my chronic dry eye.) Dr. Yee reiterated that we can’t see tumor to assess because of ABI, but my peripheral vision is great (I aced a new vision field test–and boy has that technology come a long way since the 80s when they were mapped by hand). He also put in drops to confirm that the lower vision score in left eye was from the dry spots and not related to my cataracts. Back in 6 .mos.

 

cooler head

First unassisted shower and day of outpatient therapy sessions without wearing a hat. (This resulted in me being more chatty and outgoing. But then my post-op Self has been developing too… Don’t ask me to detangle it so early.)
I only needed help once, late in the day, to get up. Handled quite a few steps with walker unassisted.

Within the last several days, my mind’s been cranking more. I started some hypergraphic writings, but I’m gonna let things simmer like the good old days. Today’s cognitive testing (about which I have repeatedly quipped I’d rather be on the administering and tabulating/analyzing end!) included some reverse retention exercises, using spoken numbers. This is sorta like the ones in the Memory part of Big Brain Academy, but without the visual cues of the numbers, colors, and limited response set. And, I’m deaf and lipreading, so my mind’s working that extra OOMPH on the stimulus intake (brain focused on converting mouth movement instead of imagining/organizing the sequence). In any case, I extended that portion of the test up to 8 numbers. Fatigue started to play a big role because I’d done a number of the “name as many X (e.g. animals, names, things that start with letter _) as you can in a minute” items (which I am still inhibited in answering because it sorta feels like the scene in Ghostbusters yada yada yada).

Ok, so there’s a tiny slice of the action here from today.

 

My team’s got the details covered

so I am taking it level and all in with the plan and unfolding experiences. No worries, please. Positive vibes, prayers, thoughts, and healing energy are all appreciated.

Since last Mon am:
Sent to local ER after calling neuro.

Brain swelling.

Ambulance transport arranged to take me to IU for preadmit.

Admitted to Neuro ICU.

…
(Insert a whole lot of interesting, yet mutually well-managed experiences and exchanges of info.)

Too wearing to recap. IU rules. I’m in the best hands, and was able to come home to rest for the weekend, with family’s fulltime assistance. So I’ve gotten rest and we have been able to get things together for my admission, get a jump on OT and PT. Moment to moment is working, with many moments of joy and humor. Lots of stories.

Surgery will start early Wednesday morning. Very involved; be patient. I am comfortable with the process of healing. Back to relaxing. You too! Have fun!

And many thanks, always!

 

distinctive after ducking down the alley

I’m at the mercy of others for rides for awhile. (It’s informal and self-imposed.) The role is one of capitulation when it comes to few and far-between local trips around town: I’m not all pushy about controlling the tunes. So, bye-bye to my preferred grooves, and hello, unknown/later-checked Sunny 101.5. The perfect laboratory setting, though: caught unaware, seconds after we had slowed for several deer to dart across the road at twilight, and this song sounds familiar. “I think I know this song…” Seconds later: You Can Call Me Al–for sure, based on the smiling driver, and courtesy each of my 4 programs. Program 3 allowed for initial recognition, with Program 2 yielding the best capture of range of sounds in the moving vehicle.

Overall, concern about limb weaknesses grew today. But I do hope to be documenting more settings and listening experiences soon–hopefully feeding back on overall strength building. I had the orientation to all this formulated and put into action so well as a late-teen and through early twenties. I recovered it a couple times, but don’t seem to complete what I need to get things to stick before another hit shifts it all again. When you can’t pin it down, you just try to do whatever you can, and keep at it, altering pieces here and there–aware of plenty that you’re missing. Interaction.
Just so there’s no bogging down in better or worse, rather than just different; the aspects and qualities we miss when we judge prematurely…

 

lived it before reading it

“It’s a paradox: those who have trouble accepting the help they need get discouraged and depressed. Those who can accept help without shame are the ones who become more self-reliant.”
~ Fred Epstein, M.D. on pg. 142, in _if I get to five_

 

pulleys and validation

A worthy read, with bonus IU Med School link:

_My Stroke of Insight: A Brain Scientist’s Personal Journey_ by Jill Bolte Taylor, Ph.D.

How cool is that?!
At about the same time period, I also worked back from scratch (the first time after the first time we all share in common). Similar ways of envisioning healing and controlling reactions have been central to my experiences, but I never realized the physiological basis that determines the time between an emotional reaction being triggered, and then our decision to engage or allow it to pass (after 90 seconds). I’ve been quick to let go of instances of anger, going back to my late teens. I figured out the self-destructive nature of negative emotions rather early. (I was even amazed by my modest abilities long before any were lost to tumors or blood flow interruptions. The talk about bringing energy to life was my natural state since my colicky days, for mostly better and sometimes worse.)

More recently but many months ago, there have been instances when a situation flared up with a loved one. I was challenged, even when I was most compromised and not in a position to control/guide interactions, for insisting that I be allowed to be calm even after I had inadvertently contributed to others becoming enraged. When in a state of recovery, we’re most vulnerable to others defining the situation and privileging their perspective. To me, while I realized we were all growing frustrated by the situation, I acknowledged that I still had to watch out for myself. Yet, a sudden switch from escalating argument to disengaging for the sake of choosing an appropriate moment to broach the topic again, was interpreted as a detrimental change in my personality (despite the lack of an established pattern in my behavior from recent years). Yet in subsequent situations, after explaining things when emotions had calmed, I noticed how my behavioral response started to, once again and effortlessly, gain credence and guide others.

Ways of being.

 

when did everyone start wearing Darth Vader voicechanger masks?

Good stuff so far. There’s so much tweaking I can do with four programs in my processor, plus sensitivity and volume adjustments over a good range. We’ll see how beneficial that is. With the BTE, I did have a moment when I felt FREEDOM in full-force. I’ll fill out details of the day, and throw in pictures, when I get back to desktop. I’ve already found a good combo/settings for a noisy restaurant environment and for listening to music over road noise. I’m a little overloaded for now, so choosing rest for the moment.

 

dawn (Buena)

On our way to Indy. In the Mood (instrumental edition and GMB classic) is in my head. U2 ATYCLB is spinning in the CD deck. I can’t be on the cutting edge of everything in the world of electronic sound regeneration, afterall.

I’m getting my Cochlear Nucleus 22 ABI upgrade speech processor programmed in a few hours. And I’m blogging it.

 

uberzone

It kind of figures. The day after I pop Liquid California in the tape deck, I receive confirmation on the first programming session for my Nucleus 22 ABI Freedom upgrade processor. The box came last week.

(pic insert; just see Flickr widget for now; also note marketing demographics: the hip youngsters on one side of box, and “mature” couple on the other side)

I haven’t had a chance to inspect the contents closely and play, er, learn about the components and accessories, but soon enough!

Other mechanical updates:

I’ve resumed my balance exercises. I’m amazed how much stability and flexibility have returned in my legs (as much as I’m nostalgic for my toned, muscular legs of youth). So, of course, I’m encouraging even more. (I couldn’t hold myself up, or get out of a chair or bed last March/May, and had to lean against the counter for teethbrushing.) That’s a rerun of prior recoveries, although at an extreme degree. That’s also after when I started being conscious of actions, I suppose. Weird, wild stuff…

My arms and hands were so weak. I wasn’t up to sitting at a computer, let alone typing. My left pinkie and ring fingers were limp, yet rigid. I could only reposition them with my other hand. Still, I kept up with this exercise where I touch the hand’s thumb to each fingertip, successively, concentrating on strength and accuracy. I’m guessing this builds dexterity. For both hands, improvements came slowly with time (perhaps aided with manual, deliberate teethbrushing). The left pinkie is still significantly weakened, but I’m now able to semi-straighten it (rather than it being in a perpetual claw form), as well as pull it into fist-form with the rest of the fingers. I did not expect that function to return. When I first started typing again, I had to use another finger to type zzzzs (a letter more commonly used by me than most people). I’m now happy to report my pinkie is handling the z beautifully.

All of this is icing on top of just living. I’m just mentioning it for others with various neurodegenerative diseases. My toes, feet, and lower legs are still fairly weak and lack the sensation and mobility of my younger days, but I don’t talk about the losses hardly ever. I do the exercises I can (the ones that don’t require any equipment, as I’ve mentioned before), and what happens is always icing. While I’m receptive to improvements, I’m always doing the best with what’s actually there now. I’m convinced of the effectiveness of momentum and inserting improvements to routine–making routine–for the purpose of body and behavior modification.

 

it’s getting kind of hectic

Laughing at myself here:
I’ve been wearing my ABI for hours and just now realized I didn’t turn on the power. So I’ve had no sound and didn’t realize it. I was about to make a phone call, then needed to look up more info. At least I wasn’t surprised it wasn’t working.

 

eye candy

I’m a bit late to get a post up for this, but there’s a day remaining to bid in Neurofibromatosis, Inc.’s National Doodle Day auction. You may want to check them out!