Crosspost from the low-content thread:

So as a follow-up to the timing dilemma, 2nd opinion, and subsequent research (about half of which was re-reading the stuff from Phatony, which makes a lot more sense now, in context) I can comment on my initial take thusly; It seems I've missed a dimension of the situation.

Behind the marketing and differing technologies, each approach has some slightly different pluses and minuses. Wife's tumor is tricky for a variety of reasons, and externalities aside there will be one technology that is better for us than the others. So far I haven't really been getting that, I've been getting each facility's explanation of why their technology will work for her and how they would do it. I guess that's to be expected--they're hammers, after all (fml).

The biggest hammer I know of is MD Anderson. They use a still-different technology than the 3 locals we're looking at (fml). They've been using it since 2006 and yet "Proton beams" are only described in the studies I've seen as "needing further study" to know if it's any better than the alternatives. I wonder what MD Anderson would say if I asked them, lol. Yes, well, maybe we'll find out.

I used to have a boss who was fond of prefacing questions with, "Gun to your head..." (fml). That actually might be just crazy enough to work!

x2

Almost bought two in a sporting goods store for about $100 each. Was the cheapest watch with any app interface and a chest strap for constant monitoring out of about 20 displayed. Just decided there was probably something better.

Chest strap monitor with bluetooth connection to iPhone and any of the fitness apps for all the data, no additional iPhone attachment necessary, no watch necessary. $30 each.

Turns out the same company now has a wifi scale that also measures body fat%, heartrate, and...air quality. $150.

Easy come, easy go.

Posting to snap inactive streak. We had a really nice routine and momentum going, which took up a lot of my time plus a rush of work at the office leading to initial log abandonment. Got ahold of a study on a do-at-home computer/robot version of CI therapy with 10 specific exercises & pieces of equipment where user does max reps in 30 seconds, ten times in sequence, counting number performed. The equipment was easy enough to mimic. The same basic movements get modified gradually to increase difficulty level, and they were basic enough that we could alternate some visualization rounds and do some "mirror" rounds. Adding in some low cardio with heartrate targets seemed to be helping as well.

Unfortunately, wife had her first real fall and banged her head against the wall, probably sustaining a concussion (but not exactly clear). Had trouble with balance and motor control for a few days, and still seems pretty upset by the whole thing. Nothing stops progress like an injury.

Anyway, not our first setback, just our first for a while. Talked it over today and we expect to get cranking again tomorrow morning. Go go go go go!

Xposting;

So the morning session with wife went pretty well. We've been incorporating timed repetitive restraint exercises for her affected side recently, and it was pretty handy to be able to show her that she's picked up right where she left off and in some cases improved over the layoff. Jesus, you really cannot put a ****ing price on confidence!

In fact she wants me to initiate phase 2 of this program, which involves rigging the equipments with various sensors and settings to record her $tats so she can do it on her own and also monitor her progress. "Maybe that way you'll have some time for pokering and betting on sports." she said

Unfortunately, I have no practical idea of how to do this kind of rigging. I gather some things would be touch activated (including some iPad apps and some actual-matter objects) and some could use video cameras and high-contrast objects to detect completion, but not sure how to actually get that into a computer. Do not want her to have to count and write things down (i.e. what I am doing now) as that would involve distraction and using the wrong hand, respectively. This equipment/program would essentially mimic a current Taub Therapy Clinical Trial we are trying to get her into, absent a trained therapist on facetime with access and control of equipment settings.

Any suggestions for who to ask about making a setup like this? Maybe 2+2 programming forum guys?

Well that was an altogether unpleasant month, with two notable exceptions:
1) New MRI shows no new growth of the tumor.
2) Hearing has suddenly returned to her right ear (had been deaf in that ear since last June, and told it was irreversible).

Everything else was ****. Terribly out of sync, unfocused, and spread too thin. Even no 2+2 time. Hoping things are a bit more even-keeled moving forward now that work should be calming down for a bit. Of course, soon there will be football betting going on...

Currently her exercise level is back to a 2 mile walk per day + general therapy & some CIT. She has just been discharged from therapy, with the expectation of starting up again after radiation treatment. I will begin giving her electrolysis in her left arm and leg on Tuesday, and we believe she will get a botox treatment on her left arm in about two weeks (basically deadens the auto-clinched muscles for a couple of months to regain normal movement).

Why start electrolysis and botox treatments only after therapy ends? Because for some reason these things have to be suggested by the patient or her spouse, even though the reaction is, "That would be a perfect treatment for her." NFI.

Her anxiety levels had gone through the roof, until the last couple of days (probably the benefit of a medication adjustment). There has seemingly been no contingency that cannot be planned for, explained to husband in excruciating detail, and then quiz him about it later to make sure he's paying attention. Arguing about it literally makes her brain shiver, and is completely unhelpful. Luckily, I have started using chisels and made some wooden mallets to really pound and gouge the **** out of some wood to vent the frustration. Sure, that block of maple would have made a nice bench vise, but it also turned out to be some lovely chips.

Oh, and it turns out "Arduino" was the answer I was looking for automating and monitoring/tracking real-world tasks via computer, and I remembered that, technically, I work at a software company.

I don't post itt because I don't really have anything to contribute, but I am reading it. Keep it up Holliday.

Best wishes.

Thank guys!

It's been a pretty good week, principally in terms of "getting things done" on a daily basis (like the Seinfeld productivity method). Exercise, stretching + massage 2x, CI repetitions, & reading stroke treatment books with her. We did find out that a clinical trial we were interested in (home CI Therapy administered via teleconference with therapist and equipment) has been suspended due to the sequester, but this has just put "build those machines myself" back on the to-do list. Two out of six done, and should finish two more today. Not hooked up to Arduino yet, but at least she can do them on her own which is the way she wants it. The standup paddleboard goes on the backburner for another week or so, is all. If there's one thing we're really not getting to, it's strength training. Do want to get to that as well, but will probably try to work it in gradually.

Pretty sure she's just having fun with me during the electrolisys sessions--the juice just isn't that high.

Oh, put alcohol back on her "allowed" list. Seems to make her quite happy and the muscle relaxant effects are significant (we are talking about one drink). Kind of funny how much of a lightweight she's become now.

Another busy week, generally able to keep my motor running then suddenly struck with an urgent Saturday 4 hour nap, lol. Should finalize with MD Andersen within the next couple of days.

A heavy weekend of exercise for the wife--yesterday walked 2x first 3 miles and then 2 miles, plus we did speed walking and walking in high heels (just her). Went through all of the CI devices as well; she's been doing them on her own, but not counting. Don't think she'd realized that she gets progressively better on each task throughout the repetitions, which I pointed out. From her perspective, she had been getting frustrated and depressed because when she starts the exercise, she's not doing as well as the last time she was doing the exercise (the end of the previous day's session). Oy veh! Probably need to move that ****ing arduino **** up in the priority list. To give an idea, here's a quick list of the CI devices and exercises:

*Peg Board--a board with holes in it and pegs that fit in the holes. 3 different size holes arranged in two lines with mirrored arrangements so each sized peg goes back and forth. The smallest peg (1/8 in.) is grabbed by two-finger pinch, medium (1/2 in.) by three-finger claw, and the largest (1 in.) by a whole-hand grab. Difficulty increased by changing the angle or position of the board. I went with western red cedar for the board and made the dowels out of poplar.

*Pronating/supinating--a handle that rotates between two stops. The idea is to contain all movement to the forearm and hand. Difficulty increased by increasing rotation range of motion and varying the angle and position of the device (but not by adding resistance). Currently done by me holding the handle, I'll soon be replaced by (essentially) a tricked-out paper towel holder made from southern yellow pine, UHMW Polyethylene (who the **** needs ball bearings when you've got this ****?), and bent cedar strips.

*Threading--a series of short 1 in. diameter rods arranged in two lines upright on a board. Near the top, the rods have a tapered 1/4 in. hole through them. A shoelace gets poked through each hole and pulled out the other side. Difficulty increased by smacking hand with a fly swatter while trying to thread the needle. Board is made of western red cedar and the rods from clear acrylic (repurposed from a Target fancy plunger). Fly swatter is just a bent clothes hanger with some coarse sandpaper at the end.

*O-ring rotating--A large ring at the end of a light pole attached at the other end to a base. Lift the ring to the apex and lower with control. Difficulty increased by lengthening the pole and adding resistance. Currently done by me and have not yet come up with a good design for it--I may just make a second version of the sup/pron device with slight modification (as an add-on, it would be distracting).

*Reaching--Touch the table, reach up and touch a button 8 in. high. Repeat with the next button up (+1.5 in.). 20 buttons total, so about 3 feet high. Difficulty increased by increasing distance to the device. This one gave me an excuse to use this gorgeous piece of Douglas Fir I picked up for no reason except the grain pattern was amazing. 3 in. x 40 in. on each side with an open back + 6in. x 12 in. base gives it a lovely display. Front is spruce for a nice contrast and I eventually intend to upgrade the buttons to backlit-LED video game style.

*Flipping object--Basically small ruler shaped item gets picked up and turned in predetermined direction. Sides are marked to be sure each turn has been completed. Each day uses one object, with variations in thickness, length, and whether edges are right-angle, beveled, or rounded. Aromatic cedar for now, although I may throw in a heavier wood, rubber or metal object at some point (UHMW Polyethylene would be a particularly sadistic touch). Automation seems to involve color-sensing camera and each side painted completely red or green (sort of defeats the purpose of aromatic cedar).

*Finger Tapping--holding other fingers and hand still, tap one finger as many times as she can. Currently done with palm on a golf ball-sized stone or at the keyboard where she tries to keep pressing one letter while keeping her fingers on other letters. Low priority to upgrade since it works well as-is.

*Tracing--iPad app displays letters and one finger of left hand traces over the image. Current app lacks the ability to gauge accuracy of traced version, it appears upgrade would require creating an app.

Think that about covers it. Oh, the alcohol tremendously aids her sleep. Apparently only in the form of upscale french white wine though.

Egads, the Saturday nap is necessary even in football season? Lord, that sucks.

A lot of paperwork this week, and getting wife's MRIs sent over to MD Anderson. Spent a couple of hours on the phone with a case nurse. Expecting to hear back early in the week and set a visit date. Treatment would start a week to ten days later, and they won't even hazard a guess as to the amount of sessions until the appointment or later. So it goes.

Wife is doing 2 1/4 miles per walk now, typically once or twice per day depending on the weather. Takes her about an hour. She's also doing 15 minutes of stationary bike per day and some squat & bending & stretching exercises on her own. She's beginning to get frustrated on her lack of improvement--still has a noticeable limp, some instability, numbness, and most annoyingly pins & needles tingliness. OIC, as I wrote this she got back from her walk and announced she'd met her goal of walking her old route by September...which means a little over 2.5 miles today. Seems pretty happy about that. That's great--I love it when she's "up". Going to try to savor it.

For hand & arm, she's been doing the CI devices some during the week, although she finds her arm gets tingly faster than ever now. On the weekend I do them with her and have her do entire sets through visualization and some with mirror therapy. This gives her a lot more stamina for them but she seems unable to do visualization on her own and same for the mirror. We have a couple of exercise stations set up for her around the place where she'll lift empty soda cans up to kitchen shelves and the like.

Been dialing in my electrolysis technique by practicing on myself. Problem is some of our muscles are substantially different, plus her spasticity reflex seems to get set off by the opposing muscle being stimulated. Her neurologist is seeking insurance approval for botox injections in her spastic arm, and we hope to move on that this week. Don't recall if I've mentioned it before, but essentially by injecting botox into the nerves would get those clinched muscles to relax so she could move her arm without straining. Lasts about 2-3 months and sometimes that's enough to retrain the arm. Also a chance it may cause the tingling to stop for a while. There are potential down sides to it, of course.

No exercise, per se, for me but plenty of sweaty woodworking (damn maple is hard to work). Finally almost finished tuning my tablesaw & blades and getting my bench vise in. Using a dry lube all over the saw to avoid buildup. Hoping to cut up the cedar strips for the SUP tomorrow and begin setting up the frame. It depends though, if wife's therapy gets going really well and runs long, can easily put it off some more.

Overnight package of CDs of MRIs has gone missing. USPS says "delivered" whereas hospital says "never received". USPS is slightly more precise than, "somewhere in Houston." only after about 20 minutes on the phone. Best guess is it was delivered somewhere on huge facility grounds and misplaced (this would be difficult since I thoroughly labeled outer envelope, inner CD box, inner envelope inside cd box, each cd flap, and each cd, ffs). Exactly where they should go is nearly impossible to miss. It is important to recognize when exploding in rage would be counterproductive and pass on the urge.

But I digress. At least I made backups before I sent them, so I will overnight again. Considering overnighting to a messenger service with a hundo tip offered for a pic of him handing the package to the nurse it is addressed to, who is holding up her hospital ID and Drivers licence and possibly today's newspaper. FML, can ****ing nothing just go smoothly?

Wife has pushed me to do "fast walking" a lot lately. I walk briskly while she holds on to my arm and has to keep up. We go for about 200 meters and she's typically winded by the end. We'll also do "normal walking" where I walk at my normal speed and she shadows about ten feet behind me (typically the same 200 meters). Somehow she's found that watching someone else walk *while* she's walking leads to better form and rhythm. We've also been tackling stairs frequently before and after those.

She's also kicked her walk up to just over 3 miles in the last couple of days.

I have been reading 'Stronger After Stroke' to her, and as I've been reviewing some of the concepts I keep thinking that what I really need is some time to take a step back and get my thoughts together insofar as what things are working and what aren't and what that means. For instance, she's obviously much more motivated about her leg and walking right now, but I'm not sure if that means I should:
*focus on legwork with her in an effort to get her the results she's looking for, or
*focus on armwork since that's relatively neglected compared to her leg while she's on her own.

But really I just want to hear that the damn hospital has the MRIs.

Surgeon's office says they sent out the MRIs last week along with full paper records. Also no record of receipt at hospital.

Cannot reach my contact there. The local post office express service number I was given has been busy for 24 hours.

Wife wants to know why the appointment isn't finalized yet. I know she hates it when I keep things from her, but also do not want her to sweat this or my...throbbing forehead veins.

Anti-anxiety meds...losing. I can feel the stress hormones now, coursing through me. Like electricity. Beginning to suspect I am being punked.

And...finally got an answer at my MD Anderson contact's number, immediate hangup. Getting angry.

Raging seems perfectly reasonable to me. I've been fired by several doctors before though, might take that with a grain of salt.

And now the surgeon's office says they, in fact, did not send the MRIs. They referred me to the hospitals...this time.

Busy signal at Anderson contact. Well, at least I'm sure I have to send them.

Perhaps this is a sign.

It's like I'm dealing with a pack of ****ing ******ed monkeys here. And not the funny kind.

Tried the main number at Proton Therapy Center; busy signal, same at contact or sometimes faxish sounds. Can an entire hospitals phones be ****ed? And...email? Still wouldn't explain the insane morons in my surgeon's records office. Actual exchange:

"We can't send MRIs out from here, sir, to just anyone."
"Ok, so last week when I asked..."
"We would need a signed authorization and written request and only then could we send it. And then only to a doctor or a hospital. Not like, just any relative or friend who asks."
"--That is what I sent last week; authorization and request. To your attention at the fax number you just gave me."
"Yes sir, that's what you need to do."
"...But...what I'm saying is...I already sent the request last week. To you, you who I am speaking to on the phone right now. I know you got it, because you sent out the other items on the request, including requests to other doctors--they confirmed receiving instructions from you. So I don't understand how you are telling me you have no request on record."
"Sometimes faxes don't go through sir, yah know?"
"But...I know you got the fax."
"How?"
"Because why else would you send out all her other medical records like that?"
"That's a good question, sir."
"So...can you send out the MRIs?"
"Well, we can't send MRIs out from here, sir, to just anyone."

Just to cap it off, UPS sent out their last pickup at 6:00, not 6:30 as their website stated. At least there was a FedEx shipping at 7:00 on the other ****ing side of town.

Arrives by 8:00, which is when I will begin calling. Told wife what was up and spent an hour or so practicing chiseling hand planes out of **** pine.

Man, that would piss me off so much. ** amateurs.

I hope this thing gets worked out man, sounds pretty brutal.

Talked to idiot #1 at 8:00. Though I had talked her into going to the delivery desk and getting it instead of waiting for mail circulation at 11:00. And calling me back.

Guess not. Cannot reach her since, although I suppose she may have read my emails.

The goon dews is my MD Anderson contact has, in fact, received today's FedEx. The nad bews is she says she has received no written records from any of the doctors' offices--directly contradicting half a dozen different sworn-to "we faxed them immediately as instructed" declarations.

No idea which way to go here. Doctors are refaxing the records. Maybe I'll take a break and...work or something.

gl Holliday + wife.

Pro tip, which you probably realize already: Never use USPS for anything, ever. Always FedEx/UPS, and even then... they are not great.

Yeah, recency bias had me down on those two plus I had to go to the post office anyway. The day before a holiday weekend is a no-no. Senior mailmen get to take off whatever days they want without much notice needed, so we end up getting scrubs on the busiest days (and ones who weren't even planning on working that day so they are probably scrambling).

Stress is accumulating. Headache, insomnia, slight dizzyness, and labored breathing. Not sure I should trust myself to make sports bets like this. Or carry a pocket knife, for that matter.