I need to start logging this stuff because I'm losing track of things. I could also use advice and encouragement periodically as there are a lot of ups and downs involved in the wife's recovery. Bottling up my feelings during this process appears to be resulting in diminishing returns; for instance, it hasn't really involved "ups and downs" so much as "downs and periods of progress between downs". I'm not sure why I feel compelled to rosey these things up when recounting them--that's not like me at all (even amichelle called me harsh). Unfortunately, my wife is the person I would usually share with, and for obvious reasons I generally do not want to burden her with my anxieties.

This past summer my wife had surgery to remove a benign but large and badly placed brain tumor. The surgery led to a stroke in her right hemisphere (OK, it's not a stroke in the traditional sense, but the effect is exactly the same) and temporary loss of 95% of her vision. I'll give some details later for those who are interested. For now I'll say I'm not starting this thread to inform so much as to ask for advice and guidance as she's just now entering the physical state where she can get exercise without the supervision of a therapist or me, and she's recently come off a few medications that carried a lot of dietary restrictions (esp. coumadin). Like, she can walk for a mile with a normal cane and is not considered a fall risk. She can eat whatever she wants. We've just transfered her from home-health-care to outpatient rehab for PT and OT 2x each per week. So basically it's been a long slow steady climb through a lot of uncertainty to make it this far, and now we want to start kicking things up a notch! Exercise for continued rehab, muscle development, cardio, stress relief, and brain health and plasticity. Nutrition to support all of those--especially the brain health and plasticity as there is still a boatload of healing from the surgery going on in there along with the adaptation and re-learning from stroke and various meds being dropped or weened off.

So this is the most important thing in my life. Many of you know me from SE so you probably know I'm a complete ***hole at times, but my wife is a sweetheart and one of the nicest and most caring people you could ever meet. She doesn't deserve this ****, not that anyone does. Wife has been an absolute trooper through this horrible ordeal beginning with complete paralysis on the lefthand side of her body and blindness through the ridiculous effort that it took to take even the smallest movements and the teeny tiny barely noticeable improvements day by day all day just trying to get better. She's come so far and worked through so much that I wish this could be over or she could slow down, but time is of the essence with this sort of thing and we still hope for full recovery even though the duration so far indicates against it for a normal stroke rehab. We're also on the clock in a different way, as within 3-6 months she will undergo ????? to deal with the remaining 40% of the tumor located on her brainstem. Exactly what will be done is still to be determined and may vary depending on eventual recovery level. Note on the original tumor: It was slightly larger than a golf ball and located between the brain stem, right hemisphere, and ocular nerve or rather it was located where those things should have been. Most unfortunately, the portion on the brainstem is very atached and hardened--it has not moved outward at all despite the space provided. This clouds the elements of her functional recovery from stroke with possible effects of brainstem impingement (pardon me while I go vomit at the thought of that). Anyway, the only way to disprove brainstem impingement as the cause of symptoms is to make a full recovery, so that's te plan.
Current physical status:
* Her left leg is probably around 60-70% with some occaisional instability. Foot presses down with precision and strength, side-to side with good stregth, lifts up somewhat weakly and not under 90 degrees without assistance. Ankle range of motion is still there. Quad has some weakness and tends to recruit outside leg muscles for lifting leading to uneven movement. She has some actual feeling and constant pins and needles (she's basically learned to walk with her leg asleep).
* Her left arm can now move on command including extending her wrist and fingers (that is huge). It is weak and imprecise with occaisional stiffness. The "pulling" muscles come sooner and are stronger so therapy mostly focuses on "pushing" things. Almost no feeling aside from sporadic tingling or extreme temperature sensations.
* Her vision is currently at about 40% so she can also see where she is going (which is nice). Her right eyelid has regained the ability to open and close within the past two months. Vision readings are changing rapidly so we're juggling a lot of different glasses for different purposes. It's irritating but if done properly greatly reduces frustration levels and headaches. Idk why nerd glasses with no tint or magnification are in sunglass stores, but they come in handy for frankensteining multi-function stuff together.
* Her face has regained all functional movements including smilling and tongue control. Barely noticeable and most people wouldn't know she's had a stroke to look at her face while talking, like Lee Corso. Beginning another run of speech therapy which involves facial exercises, electrostim, and verbal back-and-forth with a therapist. These are all very taxing and 1 speech therapy session==mental exhaustion/done for the day.

Current workout regimen:
* PT and OT 4 hours per week (long story short; PT = leg, OT = arm). Just started at the facility so not sure what specifics she's doing yet.
* I do PT and OT stretching, massage, and exercise with her every morning and evening for about 45 minutes, so about 10.5 hours total per week (this has recently been aided by the improved nutrition so she's not exhausted by "evening massage" time.
* She does various "homework exercises" throughout the day including 5 lb weights for her good arm and walking with bands around her knees.
* Recombinant exercise bike at low resistance. Just got it a couple of weeks ago and she looooooooves getting up a good heart rate and sweat for a change.
* Walking (currently without cane (and for real exercise only with me) while recuperating from tendonitis developed in her right hand probably from too much walking with a cane too soon).
* Also considering: Treadmill for lots of caneless walking (although I'm blank on where to put it). Swimming when it gets a bit warmer. Constraint-induced movement therapy (which sounds like the most miserable two-week boot camp imagineable but evidently the results are out-of-this-world).

Current nutrition plan:
* Took a while to find an actual registered dietician/nutritionist in this godforsaken hellhole, but have started consulting one from local diabetes clinic. For a variety of reasons, we're going with 6-small-meal-per day plan consciously insisting on carbs with every meal and a high protein and fat target. Wife just generally doesn't get hungry and prefers the taste of fruit & veggies to meat. Got a Vitamix and some protein powder + bars and various supplements that the nutritionist said were, "not going to do any harm".
* Meals; Two protein smoothies per day. One high-fiber protein bar. One fruit + nuts or similar. One full dinner with veggies/greens, brown rice, and fatty meat typically salmon or beef, one random cereal or sandwich with meat or protein powder.
* Essential supplements according to nutritionist; B-6 & B-12. Fish oil. Multivitamin. CoQ10. Possibly iron if we don't start eating more red meat. Everything else appears to be covered by planned and even recent diet. Loved the acai powder, flax seeds, pumpkin seeds, and bulgarian yoghurt though.
* Other "harmless" supplements I'm giving her: R-Alpha Lipoic Acid, Benfotiamine, Acetylcystein. (also kale & other greens secretly added to her fruit smoothies).
* Also considering; post workout recovery supplements, amino acids, creatine, nootropics, fermenting vegetables before using them in smoothies to remove oxalic acid (WTF), GABA sprouted brown rice, various super-oils, algaes, and extracts, plus any PEDs or steroids including the Lance Armstrong cocktail whatever that was, so long as they are net helpful during this process.
* Unnecesary; Most supplements recommended for stroke prevention and stroke recovery seem actually meant to prevent additional strokes from hapening--ordinarily that makes perfect sense as it is difficult to recover from a stroke if you're having another one, but in wife's case this is of no concern whatsoever.

If you're getting the idea that I'm an ill-informed, confused, and desperate irritable man, then you are quite understanding.


Speaking of me;
Current physical status:
Used to be a football player/weightlifter, later a rock climber, then later a swimmer before settling down as a couch potato. Gave up tobacco, caffeine, and sugar for Lent. Those had basically been my diet for the previous 8 months. 0 exercise until about a month ago. Right shoulder has some type of injury that's been festering since my rock climbing days and only occaisionally feels like it's on fire if I hit it just right. I'm about 6' 3" 230 lbs with 30% fat. 37 years old.

Workout regimen:
Looking for minimum time expended. Get down to about 15% bodyfat. Have more energy. Strength to easily lift, carry, and gently set down 120lbs including stairs. Ward off depression. Encourage brain plasticity, as I'm trying to learn neuroscience, occupational therapy, and current nutrition (which seems to largely mean un-learning everything I used to know about nutrition) while not only not getting fired for poor performance at the office, but best-case actually doing well there (I'm sort of a quant at a software company). I'd like to do some power stuff. The crossfit things sound like fun. Have an exercise bike for HIIT. Have 75 and 125 lb sandbags. Have pull-up bar. Sort of figure on rotating what I do based on what's sore. Have Starting Strength book and may just try to improvise bodyweight and sandbag versions of exercises. I wake up at 4:30, feed dogs, wife wakes up at 5:00 and we immediately start therapy stuff. So, typically I've got 20 minutes or less.

I think I'll be logging my workouts in here as well as wife's routines. I'm always short on time but somehow always seem to have time to check out 2+2, so this seems like a nice way of multi-tasking.

In the two weeks since I started to write this post, we have begun the restraint therapy where we force her to only use her affected left hand all day, and to do specific exercises for about 4 hours per day with me. It is so far very frustrating, in fact that seems to be the basis for how it works--by reversing the process of "learned disuse".

Cliffs:
* Wife recovering from stroke
* Holliday recovering from long sugar-bender
* Both preparing for upcoming surgery/radiation treatment/other
* Any tips, thoughts, or insights appreciated

Don't really have any suggestions, but I'll be extremely interested in the progress here. Just wanted to comment on the "complete ahole at times" comment. Anyone that does all you've done for another person can't be this.

gl, and subscribed

GL, horrible situation and can't imagine what you're going through.

GL, subscribing.

Did you have to quit your job because of this? Was she working before the surgery? Must be hard

Wish you both the best, Holliday

Hoping for the best

No I did not have to quit. I took a couple weeks off around the surgery but once she made it from NICU and the regular hospital into the rehab facility, I started working again with a "no brainpower available" capacity. My bosses have been very accomodating and understanding. I proactively went on anti anxiety meds before the surgery, and have upped them a few times since. Eventually, the old ADHD symptoms started re-appearing so I've also started vyvanse. I've seen very understanding offices get fed up with ongoing personal matters before, and basically feel good to be in a 40 hour per week environment.

She was working freelance on a variety of things before this.

Good luck to you all with this, sounds like she has a great team of people helping her recover.

From your last post it sounds like your doing a good job of trying to keep up with your own health and mental health. Definitely keep doing that, I know its hard to think of yourself in these sort of situations, but its really important for you both that you get whatever health care you need as well.

Quite the contrary.

Ill informed and confused? I'm getting the idea that nobody could possibly be more on top of this stuff than you have demonstrated.

Irritable? I'm getting the idea that your patience is inexhaustible.

Desperate? Nah. You've got this.

Wish I had a clue to help you with the things you're asking. Wish I were good for something besides "moral support". But if that's all I can bring to the table, then that's the least I could do.

You've got friends. We're with you.

GL with all this man. My thoughts re specific points:

1. Dude, its the internet. ******* comes through all to easy, nobody here cares.

2. RDs will work via e-mail and telephone. I found one for my issues to consult on an ongoing basis for the last year and a half and still have never met her in person. It is worth asking around.

3. Wake up earlier or squeeze in a workout somewhere in your day. Take a look at teh SMR thread. You will be amazed at how a lacrosse ball can make you feel. Feeling good physically transfers into your mental health and well being, and vice versa.

All the best,

Subscribing.

Sounds like you and your wife are very determined, which is great for her long-term prognosis. It has to be hard to stay focused with more treatment and uncertainty looming.

As far as your working out goes, it's a great idea to do so, just to be able to clear your head and relieve some of what must be massive stress. A quick circuit of bodyweight exercises is good, consider getting a weighted vest (one of the adjustable-weight ones) so you can progressively load them (sandbags are good, but not exactly the kind of thing you can throw on your shoulders before doing pull-ups, for example).

Good point about the pullups, although I can only do 6 now. When I was a rock climber, I could do 4 one-arm pullups with my left, but I think I weighed 60 lbs less at that time.

subscribed. wish you the best with everything. dont have any advice and no clue what your going thru but the determination from you is very inspiring. glgl

GL, stay strong.

Before getting too heavy with the lifting, you should do something about the lingering shoulder issue. If nothing else, because having it go out as you're carrying your wife down steps would be terrible.


Yugo put together a lot of resources on SMR in this thread which should help if the problem can be fixed without medical intervention (and a lot of problems can be).

Best of luck.

Long, busy day yesterday:

Thanks for the encouragement and wellwishes, everybody. I don't take compliments well, as my general demeanor is to focus on the negative. Thanks, though. It helps. If there's an aspect I'm lacking in right now, it's lending emotional support and nourishment. The doing comes naturally to me, as does overdoing things, unfortunately. The talking and the comforting and understanding, well I can do it and I know I need to do it, but I am unable to be consistent with it. She knows my personality and knows this is part of the package, but her current mental state is not something she can control in a normal way. She feels something, it's coming out! Now! I guess I am often making her feel that I am annoyed with having his conversation about what the future holds, again.

If you've never heard of restraint therapy, it basically involves putting an oven mitt over the good hand and consciously trying to do everything with the left 90% of waking hours, including manual dexterity exercises with a lot of repetition. The left arm and hand work for **** right now, so this involves a lot of calibrating movements and dialing back challenges so that she isn't just failing all the time. For instance, at this point it seems she can either focus on controlled movement or weight, but not both at the same time--so we're using foam blocks for "picking up and placing" exercises instead of wooden ones. At first she couldn't focus on movement while holding anything, so it's progress. If you remember the Bud Light commercials where the kung fu instructor kept saying "again" while teaching the guy how to drink beer, my roll is remarkably similar (but I do need to correct her form if she gets awry). There are some iPad apps, typing tutorials where you can specify "only left hand", she'll do some piano, and then there are blocks and various childrens' games along with practical everyday things like putting dishes in cabinets pouring water into glasses etc. Oh, and backgammon is a nice under-the-radar therapy (even though she refuses to play with the doubling cube ).

This specific approach called Taub Therapy was developed at UAB by some guy who now runs the Taub Therapy Clinic. His name eludes me.

Here's the most up to-date study I've read on it: EXCITE Trial

Its wikipedia page

The killer app of this program is the wholescale brain re-mapping which takes place over the course of two or three weeks and shows up clearly on some sort of "MRI" with other letters or words around it. It's already obviously been effective. It's also grueling, since she's spent about eight months reclaiming her independence and learning how to get by and do everything with her right hand and now she's back to being highly limited. When we do exercises with the left, it gets more and more "tingly" and asleep until it's full-on buzzing and it's quite unpleasant until it wears off after about an hour. It adds to the frustration, so on weekends I try to basically spread the CIMT over the entire day to avoid any overload at one time. After yesterday (there was repeated crying), I'm thinking that may not be the way to go after all. Getting it over with early def has value.

Wife CIMT: 3 hours puzzles, blocks, and piano. 1 hour grocery shopping, pushing cart with both hands, and picking up light items with left hand.

Wife exercise: 1.4 mile walk in 40 minutes. 3 x 10 interrupted bodyweight squats (aka sitting and standing).

Holliday exercise: 1.4 mile walk in 40 minutes. Yardwork.

So I'm going to try that SMR stuff on my shoulder today. I don't have a lacrosse ball but I'm sure I've got something close enough somewhere. Thinking I'll do some sort of squats and jumprope.

Will try therapy in 3 batches today, plus speech therapy practice at the end of the day.

Wife will try the walk today on her own. I'm slightly terrified, but must pretend to be confident. Can feel my blood pressure rising at the though of the impending 40 minutes of rumination hell--FML.

Today I'm setting up a set of parallel walking bars similar to the clinic so she can work on some "fancier" leg movements and full squats with some support. If it goes well, she may even use them today.

Keep it up. Take positives from the smallest improvements. Idk if you watch breaking bad but I'm reminded of (don't read if you don't want to be spoiled)

Seems like you are in the right mindset though. Hard to do but the balance of small successes on a daily basis with the scope of long term positives would be my input on how to gauge everything. Still can't imagine your situation and wish the best of luck.

Off she goes to walk a mile unaccompanied. Without a cane. Through a swamp.

I already have terror sweat.

****ing google lattitude piece of ****! Keeps putting her position as *in* the swamp! ****you google!

At the half mile mark...not yet turning back. Getting slightly dizzy.

Ok, turned around. It's Easter, very quiet. Will be fine.

And she's back. Seems to have found the experience "fun".

I need a better gps app.

Best of luck with all this, seems like you're pouring everything you got into it. Will be rooting for the pair of ye.

A tennis ball can do instead of a lacrosse ball (little less painful too).


I understand her walking on her own power as much as possible, but why go off into the swamp by herself? Did she have to confront the spectre of Darth Vader inside a giant tree?

LOL, I hadn't considered the symbolism. Evidently, mid-February I told her she'd definitely be able to walk on her own by the end of March. It was her usual routine before the surgery.

Tennis ball was the closest I had, along with a black foam roller we'd gotten for leg elevation a few months back. Oh god, it was amazing! Bless you guys and may you live to be a thousand years old! Definitely a chance I become addicted to that and just skip working out entirely.

Holliday workout:
5 x 8 squats w/75 lbs.
5 x 6 1-leg squats
4 x 5 deadlift w 125 lbs.
4 x 4 lunges 125 / 75 / 0

Wife exercise:
1.4 mile walk in 42 minutes.
3 x 6 Bench press w/ 1.5 lbs.
3 x 6 shoulder press 1.5 / 0.
3 x 6 bridges
3 x 10 leg raises

Wife CIMT:
3 hours mostly picking up and placing marbles with three fingers (vary positions and reaches). Xylaphone playing turned very aggressive. iPad games were pretty hard today.

A very good day of therapy. Possibly she was happy from the successful walk, or the CIMT exercises going well, or the 3 1 hour sessions with long breaks works better. Or one lead to the others. No idea.