A nice day to be green

We’ve had a nice relaxed pace getting things together. Smooth.

I am supremely pleased with my body’s tolerance and the ease of activity around me. (Still a superfan!) My family’s awesome, encouraging and right on the ball.

Everything is so delicately contingent, and going moment to moment is adding up well. Still the realistically cautious optimist, guarding most against a fall is the main thing at this point.

I feel positive and as if the dexamethasone is working with my body. The sleep has to be the main key! ABI sounds are nice too–regulating beats from the wall clock, and then sounds of the house.

Eating and all that good stuff’s going well. Gentle movements are key. Nice that vision is good, no fever, no nausea, and weaknesses are compensated by others. There’s a joy in just feeling and experiencing. Simple. Not exactly rare for me on any day. And the abundance of pillows, jokes, and hugs help too.

I’m focused on healing, compassion, and thinking of all yous. Keep smiling!

 

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!

 

one streak ends, so we’ll start a new one

3am the previous

Left arm, mouth, and tongue were most affected this time. Some verbal and motor involvement was minimized by slowing down activity sequences (talking, etc). Responders were great–just a couple snags. ER dr had the best professionalism of probably any I have had while conscious (n > 5, with recency bias).

I’ve been trying preventative measures in full force since last June. My guiding principle: We control what we can, and try to flow the best we can with the rest. Receptive to healing and opportunities… need to reinforce this foundation before building higher, so I’m gonna go back to the fundamentals of the basics. It’s all good and interesting, right?

“Be excellent to each other.”

 

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.

 

my gp rocks!

I tend to see him the least of all my doctors, and it’s always for something I try to grin and bear, but then hit a point like this morning. Yet, he’s there.

A+ for access, including the phone call to get in the same day, the office staff at check-in, the nurse who took me back, and then my dr. From structure to communication, everything was great despite being sick.

I’d write more, but I’m still beat.

In a little while…

 

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.

 

ouch!

I just lost a long, thought-filled post. It was titled “this moment.” But this moment isn’t that moment.

I think I’ll be revisiting the topic soon, but figured something tonight’s better than nothing.

 

Don’t ask…

and ye shall receive.

Visited Indy for a routine ABI reprogramming session today. Um, surprise: My beloved Nucleus Spectra 22 speech processor (circa 1995) is obsolete. We ordered a Nucleus Freedom (sing it baby…) behind-the-ear (BTE) speech processor. I also get a body-worn processor, but it’s much sleeker than what I have. Kind of like buying a new car with all the color and accessory choices.

The BTE processor fits over the ear and is rechargeable, or can use three hearing aid batteries for back-up. The bodyworn processor could be concealed in a fist, and uses two AAA batteries. (“about the size of an iPod® Shuffle,” as described by the website and demonstrated by my audiologist–I commented that Cochlear and Apple should have package deals, an opinion strengthened by the description of SmartSound capability.) I’ve been casually contemplating a direct hook into a musical audio source for many years now. Although, I must say, that I did achieve a great deal of background sound masking, for understanding someone right next to me, aided by lipreading, in very noisy environments, using my S/squelch setting. That changed in the last couple years. I’m curious whether the new SP will match or exceed that performance.

I’ve been unlike most of my friends with ABIs: I’ve never minded the pocket-sized speech processor or wire going from it to my ear/head for the transmitting coil. While many Cochlear Implant (CI) recipients, and even friends with ABIs in Australia have enjoyed BTE models for years, I was always of the mindset that processing power and performance were far more important than aesthetics. Plus, basically, “I love my ABI,” and all the crazy experiences I’ve had as a result of the sounds it’s restored, and the adventures along the way! It looks like Cochlear may have succeeded in bringing the best of both worlds.

The experiment continues!

———————————-

Cochlear Nucleus Upgrade page:

http://www.cochlearamericas.com/Products/1802.asp

Freedom Upgrade FAQ:

http://www.cochlearupgrade.com/faq.asp

Payment Options:

http://www.cochlearupgrade.com/payment.asp

 

less like a rubber ball

Well, you know I love snow, but the cold slows down molecules and all that. I’m slow bouncing back.

 

ouch

I guess I beat myself up more than I realized. (Or landed wrong?) Fortunately, the general trajectory has been positive–thanks to mass quantities of love, rest, and nourishment.

 

another bracelet

It didn’t last long, and early on a Thursday morning is a good time to hit the ER. (If there is such a thing.)

I had an event this morning. It didn’t last long because I had looked at my alarm clock before and after (reluctantly getting out of bed). A few minutes passed at the most, and that included me taking things slow to make it back to my bed afterwards.

After my business, I took time to wash hands. Waves. A series of waves. I’m okay… Wait I feel kind of weird, probably just need to sit down and have a drink of orange juice. I may as well wash my face. Feeling weirder (yet this is familiar enough, a cold or fever, maybe; hope it’s not my brain). Uncertain, just taking in sensory data. Mostly just going moment by moment. (Back of mind has the cycle and what’s been building in positive ways over several months. I’d gotten to where it would be prudent to wander out on a few limbs again. I don’t want a(nother) step back. Not now. I’m not greedy–ive still been savoring every drop of experiences. I’ve been patient and remain so.) I’ll be alright, my balance isn’t feeling off, “I’m just weak because I just woke up and I’m still tired.” Still feeling kinda weird–that empty-head/nose feeling of a head cold; as if nose is stuffed, but there’s no snot or mucous to clear. Ok, stay calm, move gradually… (If I was about to seize or fall, I didn’t want to be moving fast. Too easy to slam into unforgiving surfaces.) “Uhn… The recliner’s pretty far (20 ft), maybe I should just lay down on my bed (7 ft) until this eases. Yeah, good plan.”

After a step or two, I think I crumpled to the ground, with the door jamb as a reference before I hugged the carpet. It didn’t seem like a “fall,” just one of my signature slides.

A short time afterwards, my right arm went numb and tingly for a few minutes, which I noticed while laying in bed. I texted and called family, noticing that verbal and motor stuff was a little whacky (much like right after my surgery in March). I was able to be more calm about communication diffuculties of mine, though, and that made a huge difference. I couldn’t find every word I wanted, but pauses, and not trying to say everything at once, helped tremendously.

The people were really great, too. Kudos!

 

marshmallow puffs

Courtesy of http://www.EmergencyEmail.ORG

“SNOW WINDING DOWN.

THE LAST IN A SERIES OF WEATHER SYSTEMS FOR THE TIME BEING WILL WEAKEN & SHIFT RAPIDLY EASTWARD ACROSS THE AREA AFTER MIDNIGHT BRINGING AN END TO THE HEAVY SNOW WHICH HAS PUMMELED THE AREA TODAY & TONIGHT.”

Excellent use of the word “pummeled.”

(This is outdated; we may get flurries this weekend.)

 

nearly, nearly seven months

without a haircut.

I think that’s a record for my post-ponytail days of youth — although only in the sense of not really needing a chop, not in the sense of just not getting around to it. (My first salon haircut was in high school, a bit after my godmother had clipped my waist-length hair to just below my shoulders, before my first brain surgery. It seems like my hair’s always grown back faster after surgical head shavings prior to the most recent one.)

The more contemporary homegrown cut is something that’s more spontaneous than definitively planned. Good thing.

I looked up a bit on the ambulatory EEG. They place an array of electrodes that hooks into a battery unit for recording (and advise folks not to shower while they’re undergoing the monitoring)… And there were message board posts about the glue sticking around afterwards even moreso than usual. There was also a mention of the use of a cap for children for greater comfort (and because, you know, children are precious, with sensitive skulls). I think that’s what should be used for me, and nevermind that it may slip a bit or whatever. I would like to look like a synchronized swimmer, thank you very much.

Anyhow, I’d love to be on the end interpreting the data. Takes me back to separating the noise from the informative portions, in days of field research and pressure transducers.

 

three pints

of strawberries. Cleaned, sliced, and eaten by yours truly. Not bad for the week, for little old me.

The week started extremely slow. Just when I felt reasonably secure I was hitting a new groove (enough so to blog it!). It’s been back to basics, which doesn’t put me in front of the desktop for long, if at all. Today was better (hence the imperative of checking in, even with backlog of pics and correspondence overdue for tackling). Not to mention other projects.

I’ve been scheduled since a month ago to start some sort of 48-hour EEG on Monday. I’m imagining some weird cap of some sort, so I’ll get a pic (and then work on the backlog of posts and pics). My head doesn’t appreciate the little sandpapering thing to clean the electrode spots for the in-office EEGs, so I’m hoping some alternative thing will be used. The good thing, I’m guessing, about this “take-home” EEG is that I’ll be setting my own reference, and it’s a longer reading.

Brainwaves, brainwaves…

 

You might think

Rest is all I can muster at the moment. I fully anticipate a grand week for blogging and other activities!