For the last 2 years I’ve concentrated on physical therapy, though everyone else would call it yoga.
Over that time I have gotten a great deal of sensation back in my hands and feet. I’ve also been able to stay calmer when my nervous system is malfunctioning and in that gain a greater understanding for what has systemically been occurring for what is approaching eleven years.
Was it simply the car accident, 3rd TBI combo or was and is there something underlying as well?
That’s what I wonder occasionally when my neck, arm or hand muscles & hamstrings start to go into spasm. But on the upside I rarely start vomiting uncontrollably and am rarely in the kind of physical pain that used to be common place.
The downside of having more sensation in my feet is waking up to the feeling of nails being driven into them. Though that could just be some form of the same thing that is occurring with my wrists and hands.
I’ve done so much leaning, so much resting body weight at my wrist joints. I didn’t realize I was doing it.
I was told a couple years ago that I drag my right leg at times, also something I didn’t know until someone pointed it out.
But the wrists, that’s at least I presume (hope) all if not entirely because I’ve been dizzy for ten years.
I couldn’t feel my feet very well and know I was slamming them down and imprecisely.
Was I hyper extending my wrists because I’ve had trouble judging distance and angle and always leaning on something? So dizzy I didn’t want to have to make the entire physical adjustment? Because I just didn’t feel it?
I only started concentrating on watching my hands within the last six months and in that have seen some of what I’ve probably been doing for the last decade…So I could just be dealing with the cumulative repercussions of a long term compromised physical balance state. I don’t know. I hope that’s what it is, cumulative as opposed to degenerative.
I’m wearing braces on my arms now when I sleep at night; I was waking up with my wrists in strange and flexed angles but the braces prevent that. Wearing them at night is central otherwise I wake up and at least one wrist will regularly be bent and ’stuck’ at a right angle. Wearing the braces during the day and being mindful of what my wrists are doing when I’m not wearing them has helped.
The yoga has helped with dizziness?
Yes, but maybe more so or as much, I less and less try to keep pace with everyone else and instead really concentrate on how my feet are landing, am I entirely using momentum or are muscles engaging; they hadn‘t been. All of which means accepting that the old power walking, multi-tasking, former waitress ways are beyond my neurological capacity without doing damage. I just wind up making things worse for myself when I make myself hit a pace I can‘t do. Previously I’d be wobbly and work so hard to walk straight - you have no idea how difficult something that easy can be, how much mental effort the ‘easiest’ things can require. I wore curved sole shoes for years because like a balance board they force your brain and body to focus on physical balance.
Anyway I adopted? Transferred a strategy someone has suggested for dealing with sound input to my equal challenge with sight/visual input. My brain forgot how to process sound like it had before the TBI, same thing with visuals. The ability to turn on an internal mute button or increasingly focus on a particular sound and tune everything out was just suddenly and completely gone after the TBI. The only thing I can liken this to would be hell.
The recent suggestion had been ear plugs at all times- not just for code red emergencies which had been my previous strategy.
That suggestion was made doubly helpful by a neuropsychologist suggestion, and my doing some real world implementation: stop going past my edge. I needed to find my pre-edge, learn to recognize it well before I’m there and not (do what a doctor told me to do) push past that point.
(The doctor was of course SCUM educated and an instructor)
I push to or past my edge and its Depends or Poise time (both registered trademarks)- and that is not a good place to be.
But back to a new strategy, this one for the sad and frightening little reality that my eyes, the balls in my head, can see but my brain doesn’t always know what to do with information and essentially forgot how to do its job with the information being supplied to it by my eyeballs and their hardware.
“It’s much better than it used to be,” I’d have a habit of saying that because my entire visual field had been light bulb flashing while overlapping on itself: four sets of the same image all stacked on top of each other and rotating . That’s what I saw all the time for the first few years. Its like not seeing at all.
Oh enough to wander about and discern, concentrating very hard but anything you ever enjoyed looking at is gone and trying to physically navigate the world, or read or do anything is mindingly blowing difficult.
What did I miss really ‘seeing’ the most?
Tree bark.
Tree bark?
Yep.
Tree bark, or I should say barks. I missed really, really seeing tree bark so much it can still make me cry, to get to really see it again. Seeing in flashing superimposing triplacte(quad including the non-flashing)- seeing like that was and is kind of like “all this water but none to drink” like being in a life boat on the ocean surrounded by water that is of little use to you, that actually hurts you.
My favorite tree, I don’t know what kind it is but it sheds its bark in papery sheets and below that is this almost white wood, smooth like stone. The leaves turn an amazing yellow in fall.
Anyway I really like/d that tree.
An old strategy per my neuro-visual problems paid off (except on really, really bad neuro days) I no longer see flashing, overlapping triplicate)and I now think the second tier of a long term plan instituted about 8 or 9 years ago might be starting to pay off.
Of course when I went to SCUM (the medical university of the southern most Carolina) they offered nothing, not so much as a diagnosis for an atypical visual problem.
Suggestions?
Naw that would have involved thinking and if a drug company hasn’t marketed something SCUM’s little white coats have nary an idea.
Rehab or therapies? Well again that would involve thinking, problem solving and those educating the next generation don‘t see much call for something so uppity , unnecessary and dangerous.
Over the years I saw little white coats whose training costs went into the millions; they have letters after their names and are considered educated but as the saying goes: you can give someone an education but you can’t make them think.
The person who did the thinking- I don’t even know that she went to college but she did the thinking and she cared. There’s no teaching that last part.
Her boss was an ophthalmologist? An eye doctor, I had my eyes thoroughly checked again (because first I went to SCUM) to see if it was something structural might be wrong. But again nothing was found, my physical eyes were fine the problem was my brain just couldn’t see like it had and was scrambling the data. Sadly the eye doctor had no suggestions but said Karen might. The woman who fits glasses, helps you chose between frames and makes recommendations on lenses: she put on her thinking cap.
Karen who once having heard me rave about the closest thing I’ll ever have to a child, a german shepherd, had remembered and clipped me a GSD picture off the internet. I had the photo on my refrigerator for many, many years: A line of german shepherds in a K-9 training class(?), all sitting and staying while a cat walked in front of them. Not one dog breaking ranks, all of them resisting the herd and prey drives.
There are people I encounter who I am supposed to, should remember from the last decade but unless there’s a memory involving an animal or a child- more often than not I just plain don’t. That’s just how I am now?
Maybe. Maybe its just that animals were my only constants, the only thing I could be sure of. I haven’t found people to be very reliable or true but with animals you almost always know where you stand.
Anyway, Karen put on her thinking cap and thought - if …maybe if we try some different lenses- really different lenses might help. They have, they did, they do.
I am and have been in the second stage of that program. The second stage being the second set of lenses she/you suggested because “I’ve seen diabetics who are nearly blind be able to see with these”.
I don’t know if I told you then but they didn’t help. Not then -
but they were close enough in color to the second pair of polarized Kodak lenses that I thought maybe they could trick my brain to create something like parallel tracks/route/pathways. Retrain my brain to see again so I can filter and route the information as close to my old normal as possible, ideally without ‘polarized lenses. Needing something that expensive is dangerous in and of itself.
It was the lens colors, two colors close (enough?) to each other but their function not at all alike- one set b)polarized and the other c) non polarized. I thought maybe the point of color spectrum commonality might help trick my brain into overlapping the data from the visuals made flat by polarization to the ‘real life’ 3-d no polarization which my brain forgot how to decode, filter and translate. Each pair had elements, color wise of yellow, a yellow filter close enough that maybe my brain would pick up the cue and start adopting what it learned in the polarized yellows and transfer that to the non-polarized yellow and then eventually to clear non polarized (ie: how everyone else sees and filters just as I had before the TBI)
Color is a funny thing. Some people see the b lenses, the 2nd polarized lenses we picked out, and they see orange, some people say they see pink, some say a mauve-y rose but in those colors there is some yellow. And that would be the point color spectrum overlap. There were shades of orange and brown you had me try too but I saw the best in the yellow and though they didn‘t help at the time and everything was still screaming loud (visually) I thought that maybe someday. ..I had a hypothesis and it couldn’t hurt to try.
The color on those diabetic lenses was close enough in the color spectrum? Or simply maybe like changing out the type of spark plug being used or altering the fuel to air ratio just a hair - little changes like that can completely alter how a machine runs/functions, can tweak it or break it. I figured it was already broken- why not see if I could gradually tweak it back.
The same way painters use/d mirrors to flatten out an image so as to make it easier to transfer to canvas, easier to see so as to paint it - so it is with polarized lenses. The polarized (b)lenses did and still do what you knew they would and what not one. Not one M.D. had the talent between the ears to even think: if the image is flat it’s easier for the brain to decode.
The last four years I started introducing the c/yellow lenses, rotating between the (b)orangey-pinky yellow polarized and the solid yellow non polarized. Within the last year I’ve started to being able to see better without the polarized but with the non polarized lenses some diabetics use. I’ve had trouble making the transition to non assistive lens still seeing needing the parallel yellow non polarized (c track) rarely being able to wear just plain clear correctives but now brain is starting to see better in clear lenses. The transition was helped by someone who like you had and idea, which got me to thinking.
A doctor, someone with no background in neurology or physical rehabilitation except for little bits and pieces that don’t apply to his work- he made a suggestion in terms of my auditory difficulties that I‘ve applied to the visual problem.
He recommended- and I know it’ll seem obvious, the sort of thing I should have thought of on my own.
“have ear plugs with you at all times”
To not just use them when I was in a neurological slide but any time, all the time if I had too. If it got bad I still had and have the fan.
White noise for me is like an actual drug, it immediately calms my ‘bio-rhythms’ “brain waves’ I don’t know but my brain knows what to do with that sound. When I’m in free fall the humm is like oxygen. To some TBI’s white noise can be kryptonite, to me its like salve.
So I started using the ear plugs more and in that accepting the disability, that I wasn’t the same, I can’t be like everyone else (yet) and I have to be supplied for that as well as implementing whatever I had to keep myself from neurological freefall which some have said sounds like text book petit-mal seizures while others have said since I never had a bleed in my brain seizures are impossible. That’s what SCUM said: unless your brain bled you can not be having or have ever had a seizure.
But back to preventing whatever the heck I’ve been having which experientially I know is in part triggered by the deficits in my visual and audio neurological systems.
I started thinking about applying, metaphorically of course, ear plugs to the visual problem. Functionally they’re essentially the same thing: an inability to mute the sensation/physical input, to convert what you’re seeing or hearing into background noise or background visuals.
Some would call it an inability to focus and I guess in a way it is but for me its like everything is screaming and at the same time so much so that my visual field actually degrades to fuzzy.
I have trouble physically picking things out- same thing with sound. At its worst I can barely pick out what I need and can’t block anything out, as if I’m an entirely porous surface- like that Senator who started melting uncontrollably in X-Men. Or, another analogy, like how its been described that for some autistics physical touch is excruciating, like being burned or hit. Sound and visuals can do that too.
Sud suggested I use earplugs as much as I need/ed to, constantly if I have to and to never be without them.
It helped, in part because of what my neuropsychologist had said-(ah what team doctoring would be like) I’m starting to get better at recognizing my edge, acquiring an instinct for it and not pushing past it. Pushing past it of course was the medical advice from a member of SCUM , “drink a pot of coffee if you have to”. Odd suggestion considering caffeine’s a neural irritant.
Anyway all these years later with SCUM out of my life, the lenses Karen’s thinking cap introduced still paying off and some none malpractitioner guidance I started to wonder if I could employ a strategy wherein I could give myself visual earplugs?
Yes, I can, I did and I have- and just like that (10 years later):I’ve started to have moments, sometimes hours where the interface between my eyes and how my brain decodes the information -wherein I can see like used to.
How much of my overall time can I see like that?
Less than 1%.
Less that 1% may not sound like much unless put in the context of time. Given that it has been over a decade of not a single moment- nothing-zero-nada for over a decade-but now occasionally I’m getting as much as hours. Look at it through eleven years of time and it is a huge and notable spike. A and few hours a month may not seem like much but I feel differently, I feel certain that just like I sat down with Karen going on a decade ago: time + effort + ingenuity (will)= recovery
I will come back from this thing.
