Another Video Swallow Test

Yesterday, I took Bob in for another video swallow test. This is the third such test he has had since he's been out of the hospital. The last one was done in June. The first was in February.

The test in June showed no change from the one in February. Even though, at the time, I thought it sounded like some improvement had been made in the June report, when I took both the February and June test results to Bob's Ear, Nose, Throat doc (a.k.a. Dr. Doom) he confirmed that the results were the same and the only difference was in the interpretation by the Speech Pathologist. This time, I requested that the same Speech Pathologist who did the test in February do this test, so we wouldn't have the "interpretation" problem again.

Back in June, the Speech Pathologist stopped the test when Bob aspirated all of the "honey thickened" liquid. Pretty much, the pathologist freaked out at that point. She called this "silent and deadly aspiration" as Bob seemed to have no feeling or sensation that the liquid was going down the wrong way. He didn't choke or cough like a 'normal' person would and this was dangerous. At that time, she told me Bob's prognosis was poor for ever recovering his swallow reflex again and that he should be NPO (nothing by mouth) not even for swallow practice. She also discharged him from therapy, telling me that it was pretty much a waste of time. When I consulted with Dr. Doom, he agreed that Bob's prognosis was poor, i.e. "He should have gotten better by now." But Dr. Doom encouraged us "off the record" to keep trying and just "be careful," though medically, he said, he could not advise it. So we have--with our DIY swallow therapy including a daily indulgence in some "illegal" pudding. We've been doing this at-home, unsupervised therapy since June.

So, to say I was a bit nervous yesterday is a bit of an understatement. My fear was that the results of this test would be once again the same as the last two. I had asked the radiologist if I could watch the test, but she wouldn't let me, so I had to sit out in the hallway and worry while the test was being done. But imagine my relief and amazement when the Speech Pathologist opened the door and greeted me with a big smile.

Because there has, after all this time, finally been an improvement. Bob was able to swallow all of the "nectar consistency thickened" liquid without any aspiration (this is thinner than 'honey thickened') and he was able to swallow all of the pudding in one big "bolus" swallow! His swallow reflexes are faster than before and his cough is stronger. And though he still aspirates all of the "thin liquid" and some of the applesauce, Bob has been approved to now "eat for pleasure" twice daily!

Of course, only small amounts of "pudding consistency" foods and "thickened liquids", but hey---not damn bad for a guy with a "poor prognosis"!


Bob was actually quite sad after the test, feeling he had failed it once again. I'm sure he'd love to lose the peg tube and that's not happening any time soon. I had to spend some time encouraging him and explaining that really this was a good test and it meant we mustn't give up and we must keep up the tongue/mouth exercises and the swallow practice, because all our hard work is now starting to pay off.

And Look at That!

Linda was absolutely right in my last post! Bob does write better when he "draws" it. "Robt" is the way Bob used to sign his name, abbreviated from Robert. Which I'm sure he "learned" to do long after he learned to print and write as a child, so perhaps Linda's OT is right about how things are stored in the brain. Hmmmm....

But I must admit something highly strange. I did not talk to Bob about this "word art" idea. In fact, my DSL went down right after I posted that last post (had to get a new modem) and so I only got back online late yesterday to view the comments and I was still thinking about "word art" and how to describe this concept to Bob when this very morning he asked for "pencils" and this is what he did.

Jeepers, I swear, sometimes he reads my mind. This isn't the first time Bob has seemly read my mind since the stroke...

Which makes me wonder if a left-hemisphere stroke can make one psychic?

And thanks everyone for your ideas and thoughtful comments on the last post!

Writing vs. Drawing

I suppose this might prove the "left brain, right brain" theory, but I find it so strange that Bob can draw with his left hand in fine, neat, confident strokes, never making an error (he never erases anything at all) and yet when he tries to write it looks like this....

The first line is my writing: "What is your name?" Then Bob's attempt follows. I know that finding the right word is the aphasia talking (or writing, as it were in this case) but such a mess...

Compare to the drawing in the previous post.

It's almost as if when he's drawing the right hemisphere of his brain is controlling the pen/pencil and when he's writing his damaged left hemisphere is back in charge. That's my only explanation, but I have never heard of such a thing. You'd think motor control of his left hand would be in one place in his brain.

All I can say, this is weird.... And I haven't a clue what to do about it. (I tried googling for information on this and you know what came up? A blog called The Pink House on the Corner! ha!) And I am thoroughly amazed that he can draw so well when his handwriting is still quite pathetic and shaky.

The good news here is that Bob could actually read the question and struggled very hard to answer it. He couldn't have done that a few months back.

Merry Men

Merry Men

Here's a Christmas gift to everyone from Bob, a new drawing that he calls "Merry Men". 

and a Merry Christmas from all of us at The Pink House!

A Walk, A Wildebeest and A Bowel Movement

This morning, I woke up to hear Bob groaning in pain. So I dragged myself out of bed and asked him what was wrong. He replied, "I don't know." This is Bobspeak and it means he's about to have a bowel movement and I'm thinking, oh crap, quite literally but also because I did not give him his milk of magnesia last night. I did not give him it because he has a doctor's appointment today and the stuff doesn't always work fast and I didn't want him to have a bowel movement at the doctor's office or worse in the wheelchair transport on our way there or back. My plan was to give him it when we returned home.

I tell you, back in 1994 when Bob and I met, if someone had told me that I would one day be managing his bowel movements, right down to marking them on the calendar and planning them around appointments, I do believe I'd have fled right out the back door.

But back to this morning. So, I know Bob is constipated and this is not going to be easy. And I'm wondering if I should give him the milk of magnesia now or wait, because that could definitely backfire on me. Quite literally. So I disconnect his nightly feeding pump and flush his peg tube and crush and dissolve his meds and syringe them in and he still hasn't gone. By then, Boomer is getting antsy. Because he has to take care of business, too.

I tell Bob I'll take Boomer out for a quick one, meaning not our usual long mile or so walk, but just a few blocks so that Boomer can do his business and we'll be right back.

Out the door we go and it's already warm out. The temps here have been hovering around 82 degrees and it certainly doesn't feel like Christmas. I decide to take a different direction than usual since it's only a few blocks, and while Boomer is snorting around a tree on the boulevard, I look up and am quite startled to see a large cow in this neighbor's back yard.

I'm not kidding, it's a cow, or at least it looks like a cow. A huge gray cow and it's by the back chainlink fence, right by the alley and I'm looking past the neighbor's house, through the side yard, into the fenced in back yard. The cow is scratching its neck against the chainlink fence and sort of regarding me with one big brown eye.

I stand there, sort of amazed, because one doesn't see cows in our neighborhood. But the more I gaze in this cow's direction, the more I think something is wrong. It's not a cow. It's something else. A big something else. It's like one of those beasts from Africa, what are they called? An emu? No, not an emu. An emu is bird-like thing. It's one of those cow-like beasts that lions are always munching on in nature programs. It's a... a.... wildebeest!

For a second, I nearly turn and run. But then I remember, once, when we were kids, my sister and I wandered into a cow pasture and my sister, on seeing the cows, ran and all the cows ran after her. So running is probably not a good idea.

Then I notice another thing. The wildebeest has not moved. All this time I've been staring at it and it's been staring at me. Its head still cocked in that position, scratching its neck on the fence. Of course, I haven't moved either. We've both been kind of caught in the headlights, staring at each other. So I move a little bit, but the wildebeest does not move. I walk a little off, and the wildebeest is still staring at the spot where I had been standing. And then it hits me. It's fake! It's a fake wildebeest in this person's back yard.

So, you know, I have to check this out. Because, why on earth is there a fake wildebeest in this back yard. And what's it made of, any way?

Boomer and I make our way around the block and head down the alley, though, even then, I am a bit wary about approaching this wildebeest, because maybe I was wrong, maybe it isn't fake. But then, I see it, leaning against the fence and the closer we get to it, I can see it's actually a big plastic reindeer.

Yup. A Reindeer. I'm sure of this because there are two big holes in its plastic head where the antlers are supposed to be. But other than the holes, it's damn life-like looking. Like the real thing, not those cute Christmas decoration kind, but the real kind that you see at the zoo. And boy, did I feel stupid. The thing had me freaked out there for minute...

I had to laugh. All the way home, chuckle a bit. Ho Ho Ho! When we got home, Bob still hadn't gone and he was so uncomfortable that I broke down and gave him some milk of magnesia. And it did backfire on me, and now I have a mess on my hands. He's interrupted this blog three times now, for three diaper changes, and I just pray he dries up before the doctor's appointment this afternoon.

Therapy: an update

Recently, someone asked how Bob was doing with his "other therapies" (meaning, besides the walking and reading that I've covered recently), so I thought I'd give a little therapy update here.

Since we've been on our own, without any support from professional therapists, everyday is pretty much an all day therapy session here at The Pink House. In the mornings, he draws and is getting better at that. In fact, he's been working on one drawing which I find quite good and will post here when it's finished. At around 10:30 a.m., I give him a bedbath and help him get dressed and transferred into his wheelchair. He is now able to transfer into the wheelchair without the slideboard--sort of scooting off the bed into the chair, though I have to boost his right thigh into the seat. He still is unable to sit at the edge of the bed and unable to stand--with the exception of pulling up on the rail in the hall. He still needs the slideboard to get back into bed. After sitting up in his wheelchair for about a half hour (a therapy in itself) while I change the sheets, he then gets back into bed. Around noon, we begin his daily exercises.

He is up to 30 repetitions on his leg exercises, though still struggles with synergy in his right leg. He has improved moving his leg side-to-side, but has little to no control over his knee. His left leg, though, is much stronger.

After leg exercises, we work on range-of-motion on his right arm. Unfortunately, there is still no movement at all in his right arm or hand. He has not regained any right shoulder movement. I hate to say that we have pretty much given up on any other therapy on his arm/hand simply because there has been no progress and seeing no progress has been quite frustrating for Bob. Also, given our time constraints, it seems more conducive to work on the things that are progressing instead of "beating a dead horse" or dead arm, if you will. We have even given up on the mirror therapy as the only movement that induced was a bit of happy jumping of his thumb. Strangely enough, if I give him two squeeze balls, putting one in his affected hand, his thumb will still jump without the aid of the mirror.  I wish I had better news to report on his right arm/hand, but that simply is the way it is, right now.

After range of motion, we work on mouth/tongue exercises for swallowing. Bob is able to stick out his tongue much better than before and also to move his tonque over to the right side of his mouth. This was something that he could not do before. This coming week, Bob has an appointment with his Ear, Nose, Throat doc and I am hoping he will schedule another video swallow.

After those exercises, we work on Speech Therapy. Bob is getting better at making the "p" sound, but still has trouble with "t" and "k". We work a lot on saying complete sentences and a rather eerie phenomenon has developed, which is Bob's amazing ability to somehow psychically anticipate exactly what I am going to say and so says it with me, using the exact tone of voice and inflection that I use. When he first did this, I thought it was merely because I was using the same sentences and he was anticipating them, so I have tried to stump him, to slip him up, by coming up with new and sometimes strange, quirky sentences such as The parrot pooped on the pop tart. or The snail sailed over the interstate. to no avail. He says these things exactly with me, not skipping a beat and I think, what he's doing is watching my mouth and mimicking my movements and sounds. It's eerie, but also immensely funny and we end up both laughing at his antics. Laughter, too, is good exercise for his epiglottis. I do believe the speech therapy is working, he is getting better at saying complete sentences, though still has a long way to go. His latest new catch phrase is "Well, I'll be!" Still, though, I am often unsure if he is speaking more clearly or if it is just me getting used to him.... And he still has a terrible time with the names of objects and people.

After speech therapy, we work on his walking practice at the rail. He has been consistently doing 17 times since my little "pep talk", though still complains of pain. Mostly in his left, unaffected, leg.

If there is time after walking practice, we will play The Memory game or a game of Go Fish, but often the above therapies take all afternoon and we finish at suppertime. Bob gets a cup of pudding then, to practice swallowing. Then it's time for his overnight feeding pump to be connected and we watch a movie until bedtime.

At least one day a week, we take a break from the above routine and have a Scrabble Day. Yesterday was Scrabble Day, and Bob played all seven letters for the first time. The word he made was "BARRETS" and he managed to connect the B with an A to form "BA" and the A with an N to form "AN" and well, he trounced my butt! Though he still calls Scrabble "football".

And right now, I look at my watch, and it's time for Bob's bedbath and the start of another therapy day. So I end this post here.

Suddenly, An Improvement in Reading

The other day, the first Christmas cards arrived at The Pink House. I brought the mail in and told Bob that we had two Christmas cards. He reached his hand out for them. He loves getting cards. So, I opened them and after my brief glance, handed them over to him and went to take the rest of the mail to my desk. When I came back, he was intently studying one of them.

This was one of those wordy Christmas cards. You know, the kind with about two paragraphs of inspirational script writing on the front. Bob was studying the front of it and I asked him, "Can you read that?"

And he said, "yes." Then, he opened the card and began studying the writing inside.

And I thought, hmmmmm.....? Because I wasn't sure if he was really reading it or not. Bob has had a terrible time with reading since the stroke. It seems he can occasionally read a single word, but has real trouble with reading a sentence, let alone a couple of paragraphs. This has always been especially heartbreaking for me, as a writer, because Bob used to be my "first reader" on any of my works. He was my "fresh pair of eyes", my typo-finder, my editor of sorts. When he first came home from the hospital, I used to pick up children's books from the library for him, but he had such a awful, heartbreaking time with them, even the "beginning readers", that I finally gave up and switched to playing Scrabble with him, which, of course, involves reading but only one word at a time.

Speech Therapy Reading Test

So I thought I'd give him a little reading test and got out one of the worksheets that Speech Therapy had left with me. These are pretty standard multiple choice type tests. The last time we worked on one of these was sometime during the summer and back then, Bob had to ask me to read the "question" part of the test and sometimes was able to pick out the right word for the answer and sometimes not... I think he was batting about 50%.

So I gave him this worksheet and told him I would not help him this time, but for him to try to figure it out on his own. He called me over, only once, pointing to the word "communication", so I told him what the word was and after that he quickly circled the word "telephone". He worked his way all the way through #7 without any more help and had every answer correct. He then missed #8 and #10, but finished the rest with flying colors.

I tell you, some days, he never ceases to amaze me.

It Worked

Yesterday (the day after our little "pep talk"), Bob and I were sitting on the front porch. This is our routine: bedbath then up in the wheelchair and out onto the front porch for some fresh air and a chance, for me, to change the bedsheets, etc. While we sat there, I asked him if he was ready for another try walking the rail in the hallway.  He replied, "I have... do it... even it hurts."

So that afternoon, we hit the rail once again. Bob walked 17 times. Seventeen times! Without a single complaint. Lately, his best has been 16 times, though last week we were lucky to hit 10 times. So, when he finished number 16, I could tell he was wiped out. I told him, "Give me one more and we'll call it a day." And he said, "All right." Afterward, I heartily applauded him and told him that 17 would be our new record and we would work up from there. And he agreed. And seemed quite proud of himself.

It looks like my little pep talk did the trick. But I've been looking at the comments on my last post, and, jeepers! Perhaps I hadn't made myself clear. I hope you really didn't think I was ready to toss Bob in a nursing home. So let me clarify things here.

A year ago, when Bob came home, I did tell myself that I'd give it a year. Back then, you must remember, Bob was a veritable peeing machine. Seemed all he did was urinate. I was up two, three, sometimes four times each night, changing sheets and getting no sleep. I did wonder what I had gotten myself into, but told myself to hang in there for at least a year. Also, back then, he could barely utter two understandable words. He often threw tantrums that would rival any two year old. He cried a lot. He could not even stand up on his own. So, all in all, he certainly is much better a year later. Much better. And if he hadn't improved this much, if he was still peeing up a storm, keeping me up all night, crying and throwing tantrums and not able to speak, well, I probably would've been seriously thinking "nursing home". But not now. No where near that now.

(Sshh! Don't tell Bob I said that...)

Because I have found out, this past year, that Bob needs constant motivation to keep going. I know it is hard for him and I know it hurts, especially the walking practice, and I also know that, sometimes, he wants to give up and would rather lie around in bed and watch movies... And lately it seemed that he was in a "giving up" mode. Especially with his walking practice.

Two things that motivate him are constant cheerleading, and believe me, I have become a one-woman cheerleading squad, but sometimes even that doesn't do the trick and I have to draw out the big guns...i.e. fear.

I do find that a little bit a fear does the trick, when all the cheerleading in the world falls flat.

So, the other day, I told him that if he didn't start working a bit harder, if he slipped back too far, if he gives up trying to walk, well, he may just end up in nursing home where they certainly would let him lie around all day and watch TV, but did he really want that? And of course he doesn't. His biggest fear is ending up in a place like that. Thus, he starts thinking that he'd better try harder. And he does.

Am I wrong to use this "tough love" strategy?

Well, right or wrong, it certainly worked! Sometimes, I think it's part of a caregiver's job to be a little tough. And to push him a little hard.

So, we'll see how he does today.

Sliding Backward On The Rail

I'm always prepared for those "plateaus", you know, those times when there is little or no progress in Bob's recovery, but I was not really prepared for this: a complete reversal. A wrong turn. A going backward instead of forward.

I'm talking about Bob's rail walking, which he was doing so well at, I mean, back in October he had hit a new all-time record of 31 times at the rail. His stepping was more confident. His strides were getting longer. Each time we practiced walking, he was determined to add one more time to his total. And it had seemed as if there was no stopping him.

Since then, it's been nothing but a slow slide backward.

Lately, he fairly creeps along the rail. He wobbles and his knees buckle and he has scared the living day-lights out of me a couple of times by nearly tumbling to ground. We are lucky to hit 15 times, these days--and that's a lucky day. Usually, he is hovering around the 9-10 mark. And the whole time we are practicing is peppered with complaints, i.e. his toe hurts, his shoes are too tight, his arm hurts, etc. The other day, I changed his shoes four times because the first pair (his usual) were "too tight" and the second pair was "too loose" and it felt like we had landed in a Goldilocks fairytale. When I finally dug out an old pair of his sandals, which were "just right", he then decided he had to pee and the whole practice session came to a screeching halt.

Lord almightly, some days, I just don't know what to do. Last night, I had a little "pep talk" with him. I haven't had to do one of those in awhile. By "pep talk" I mean a bit cajoling, some coaxing with a few threats thrown in for good measure. A year ago, on New Years Eve, I brought Bob home from the hospital. I told myself, at that time, I'd give him a year and if he hadn't gotten better, it would be time to start scouting for a nursing home. I reminded him of that. He did not like it one bit.

I do hate to sound mean. But I'm hoping this will kick-start him back in the right direction.

Today is Sunday. The weather is gloomy. It looks like rain. I'm thinking it's a good day for some Scrabble therapy. And we'll start again, fresh, tomorrow on the rail.

Aphasia & Memory Loss

I swear, the more I learn about aphasia, the less I understand. I don't think even the experts know exactly what is going on inside an aphasic's mind. All through Bob's professional speech therapy, the therapists' were in agreement on one thing, which was the use of flashcards to help relearn the names of objects. But flashcards have not proven to be very effective with Bob. No matter how many times he is shown a flashcard picture of, say, an elephant, he cannot seem to remember from one day to the next that that is indeed an elephant...

Same goes with our morning routine, after bedbath and I get him dressed for the day, I always quiz him on the names of "socks" "pants" and "shirt" as we put these on. I've been doing this for nearly six months and Bob sometimes remembers these names and other times, he will insist that "socks" are "pancakes" or that "pants" are indeed "sandals" and the "shirt" still leaves him just confused.

Which makes me wonder just how much of this is aphasia and how much of it is due to short-term memory problems. Bob also suffers from long-term memory loss. It seems, in fact, that whole chunks of his memories have disappeared since the stroke. He cannot remember, for example, that he has sisters. This became apparent to me when someone asked Bob if he had any "brothers or sisters". And Bob shook his head "no" and even after I explained that he did indeed have two sisters (living) and one deceased, he looked at me totally confused, then insisted I was wrong. He also seems to have no recollection that he was previously married and that marriage produced two children.... I do wonder if any of these long term memories can come back. Be restored, so to speak.

Though, I suppose, the loss of certain memories could be considered a blessing of sorts.

Anyway, for the moment, I've ditched the flashcards and we have begun working on short-term memory issues.

Bob's Memory Game

A special thanks to Jenn who sent Bob this Memory Game from Hasbro. The game consists of cardboard picture cards which are turned upside down and the idea is to remember where certain pictures are located and to collect pairs.

The first time Bob attempted this game, he was absolutely terrible at it. He's still not very good, but getting better the more we play it.

And it helps that it is a competitive game, because simply he hates to lose!

Bob's New Art Therapy

Monsters

The good news is that Bob has really gotten into drawing again, he daily asks for "pencils" and draws pretty much every morning while I do laundry and chores about the house.

Most of the time, however, he doesn't finish a drawing, continually flipping to a clean page in his sketchbook and starting over. This one he finished. He calls it "Monsters".

I think with each new drawing, I get a little more insight into just what goes on inside his stroke-damaged brain. And, of course, I am hoping this new "art therapy" will help him in his recovery process. Although drawing is good for his motor skills, my big idea here is that using his right "creative" and undamaged side of his brain will hopefully help heal and "rewire" his damaged left hemisphere, as the right and left sides of the brain work in cooperation on creative pursuits, the right side being the "creative dreamer" and the left being the "organizer" and "critic"... anyway, that's my idea, we'll see if it works.

Several of his past occupational therapists have tried to entice Bob to draw, to no avail. The way I finally managed to entice him was by getting him a very nice "professional" artist sketchpad and colored art pencils---these being an early Christmas present from my mom and dad. Having the right equipment has made all the difference.

An interesting side note is that after Bob had his first stroke in 2003, which left him with residual fine motor problems in his right (dominant) hand, he pretty much gave up drawing. No matter how much I coaxed and encouraged him, he always thought he wouldn't be "good enough". So the first stroke in 2003 took Bob's art away, and the second stroke has strangely brought my artist back.

Feeling a Bit Blue...

Perhaps, it's the holiday season or Bob's recent one-year stroke anniversary (I had truly thought he would have been so much better by now, standing on his own two feet, walking with a walker, or at least being able to get in and out of bed, so I wouldn't have to lift him so much...) anyway, I am feeling down in the dumps.

Perhaps, it's because the state is once again is demanding "proof" of Bob's disability and all of his monthly medical expenses, so I am digging through receipts and mounds of paperwork, so that he can keep his meager benefits.

Or because of the guy down the street, who daily comes by with his dog which uses our yard as its personal toilet, and when I caught him the act and confronted him, he threatened to burn our house down and told me it was his "right" to let his dog crap all over our yard and so now he comes back daily, and I am daily cleaning up after him, afraid to say anything else. (And you know, I know, if Bob had been well and confronted him--the whole situation would have turned out different.)

Or because Bob has been struggling at the rail in the hall these past couple of weeks, unable to even come close to his old record. And his bladder problems have come back, once again, with a vengeance....  and he still can't control his bowel movements... and he's given up on anything to do with his right arm/hand which is still limp and lifeless... and that this week, I packed up all his old blue jeans, because he can't wear them anymore and instead must wear pull-ups and it felt so sad, to pack them away, as if the man I used to know had died... and... and....

The list goes on.... And I am tired of being strong. Of smiling and telling everyone that everything is fine when it certainly isn't fine--I mean, my husband has been severely messed up from this stroke....

And I wonder how long I can keep this up.

Sorry about this depressing post. Don't even know why I'm writing this. Though it does help to vent a bit. I guess I am just overwhelmed at the moment and promise to be less depressing next time, with hopefully some better news to report.

He's Drawing Again!

It's taken some time, and a lot of coaxing from me, but finally Bob has put pencil to paper and begun to draw again. The first time I put an artist's sketchbook in his hand, all he did was write his name over and over, which--don't get me wrong--is good practice, but not quite what I had in mind. When I asked him why he was writing his name and not drawing a picture, and he told me, "I'm progressing."

Today, I handed him the sketchbook and I asked him, specifically, to draw me a picture of what is was like to have aphasia. Of what his brain/mind felt like, to him.

This is what he came up with:

Aphasia Mind (click to enlarge)

Mind you, he is drawing with his left (non-dominant) hand.

"The Words" (click to enlarge)

He then asked me to turn the page and he drew another one, this one he called "The Words"....He often uses the phrase "the words" when he cannot come up with the right word. He will hit himself on the forehead and say, "the words, the words!" when he can't find the right word....  OK, I know this one looks a little, um... sensual.... but...

Of course, he's nowhere near what he used to do, i.e.:

One of Bob's Drawings, pre-stroke-- Pen & Ink

But I am so happy he is drawing and using his creativity again!!

Counting Our Blessings

Today is Thanksgiving and although there is no turkey in the oven here at The Pink House (Bob can't eat, so why bother), it seems time to take stock and count our blessings.

Last year, Bob and I spent Thanksgiving at Kindred Hospital (a specialty critical-care hospital for pulmonary patients), where he was daily "shaken" by the airway vest machine in order to breakup the congestion in his lungs caused by pneumonia. A year ago, I did not blog but wrote in a conventional journal. Here is an entry from back then:


November 21, 2010  At Bob's bedside in ICU still. Oh, this is so hard. Today is the one month anniversary of that blasted stroke. 

The nurse said he said his name "Bob" to her!

Still he looks like shit.

Some days I would like to crawl in a hole and die. I don't know what to do. People say don't go there everyday (it's so depressing, he doesn't respond..) but what would I do? Sit home, stare at the walls? I know there is cleaning & the yard is a mess--but I have no energy for that. None at all.

Today, I went for a walk around this place--there is a strange boarded-up building here--3 stories, gray stucco, a sort of monolithic tower that rises up from the ground like a monster--dreadful looking. A place where one might imagine cruel experiments happening inside. The main door is padlocked and an abandoned parking lot, choked with weeds, near it with spots marked DR TEIGMANN (4 spots for one doctor or four doctors with the same name--a family of mad scientists, I imagine.) Also there is what looks like an old heliport surrounded by mangroves, their long tentacle roots reaching out, into the dark waters of the bay.

A frightening building, really, one's imagination can run wild with it.

This whole place is frightening--every patient is on a life support machine. Death, daily walks these halls... Bob would freak out, if he knew.

So now, it's a year later, and looking back, I know I have many, many things to be grateful for but most of all, that Bob is safe home with me.

Bob Speaks Out, Video #2

Thought it was time to tape Bob speaking again and compare to the last one. This was taped yesterday, 13 months post-stroke.

Click on the YouTube icon after it starts to take you directly to YouTube for better picture/sound quality. Then compare to this one taken in August, 9 months post-stroke.

I do believe I see some improvement especially in his overall alertness, comprehension and he's speaking more clearly, though, he still tends to goof around too much! Speaking of "alertness", I had to retake the video because I showed Bob the first one I took and he said, "I look... like....weirdo!" and he wanted me to take another one. So I did. That's the first time he has shown an interest in my video/picture taking of him. Still, I know, he has a long way to go...

Anyway, do think he's speaking better and hope it's not my imagination (and/or wishful thinking). What do you think?

Back to Real Life

Yesterday, my mom and dad, aunt and uncle left for home, and Bob and I are back to our routine. Yesterday, too, he had a doctor's appointment, then a trip to have his monthly blood tests and I am exhausted, sad and thankful--that latter for the nice visit and respite that it brought, but sad to see them go.

Mom & Dad with Bob (and Boomer, too!)

While here, my father changed the oil in The Green Machine and also "recharged" and cleaned the air filter (I didn't know that such a thing needed to be done! duh). He also fixed our front screen door which was sticking--thus making it a complete bitch to get the wheelchair out to the front porch. And he got a new faucet for our old bathtub and paid the plumber to install it. Then, he and my Uncle Don helped me get my "new" used computer set up as my old one was gasping its last breath. My mom redid my door wreath (which was a mess) and hemmed a pair of pants for me and even restrung a windchime that had fallen apart. (Thank you, mom, dad and Don, you don't know how much these things mean to me.)

Bob and I managed to get to the beach (where they were staying) three times, though Bob was decidedly uncomfortable by the end of the day with severe pain in his back and neck. I wish I knew how to make him more comfortable in his wheelchair (I had thought the new customized chair would do the trick, but alas...) His neck muscles are still very weak and atrophied from the CIDP, even though that disease is "gone", the damage still lingers. My poor father was once called into "urinal duty" when my mom and I went for a walk on the beach.  Otherwise, I think it was good for Bob to get out of the house to do something different and fun, even though he was exhausted at the end of the day. It was also good for Bob to socialize, even though this was quite difficult for him, he did give it a good college try. Although, for some reason, he kept calling my father, "Grandpa".

I got to get out of the house for a few days, which was terrific. We went shopping and to the flea market and, last but not least, we made a trip over to Clearwater to see the famous tail-less dolphin, "Winter" who swims with a prosthetic tail. The place was packed because a movie about this dolphin has just been released (A Dolphin's Tale). I wish Bob could have seen that dolphin, she was quite inspirational.


So now it's back to "real life" here, and back to our daily routine.

Five Dollar Dilemma

The other day, while walking Boomer, I noticed a spot on my glasses and stopped to clean them off. As I looked down, I saw a five dollar bill on the ground. So I scooped it up and Boomer and I went on our way.

When we got home, I told Bob that Boomer and I had had a profitable morning walk and I showed him the five dollar bill. He reached out for it, so I gave it to him.

He held that five dollar bill at an arm's length and stared at it as if it were an artifact from an alien planet, so I said, "Do you know what that is?"

He said, "No."

I said, "It's money."

"Money," he repeated, still staring at the alien bill.

"Do you know how much money that is?" I asked, because he looked so confused.

"No." He shook his head. This from the guy who used to meticulously balance the checkbook and always keep track of his commissions in case the company made a mistake on his paycheck. This is the guy who used to worry about every single cent. Now, he doesn't recognize a five dollar bill....

So, I pointed to the number 5 in the corners and said, "It's five dollars."

"Oh!" he said, then asked, "so... more than a thousand?"

"No. More than one dollar. It's like five one dollar bills."

He still studied the bill, then he asked, quite seriously, "More than twenty thousand dollars?"

Well, I wish.

Money Does Buy Happiness

Yesterday, I found out how the "other half" lives, by that I mean the caregivers with money. And oh, it is lovely.

My parents and aunt and uncle are still in town and it has been a struggle finding someone to watch over Bob so that I can get out for some much needed respite. I had thought I had it all arranged, Chris had volunteered to help and also another neighbor, Barbara, then there was Bob's former IV/IG nurse who volunteered to keep her calendar clear for us and she had a back-up friend who would sit with Bob for $30.00 or so.

The best laid plans, as they say.... Chris ended up in the hospital with a blood clot in her leg and had to have surgery, the other neighbor fell ill. Bob's former nurse got here a couple of times but then got tied up in other commitments and her back-up friend decided she wasn't "comfortable" with the situation.  Yikes.

(And before anyone mentions that I should check into county/state programs, I already have. The only program Bob qualifies for has a waiting list of over 6,000 names, the social worker said not to expect anything for probably two or more years, and then maybe not at all because of budget cuts...)

So yesterday, my mom and dad hired a caregiver from an agency. This cost $16.00/hour! And this for just a "caregiver" not a nurse, so they can't administer meds or feedings through the peg tube. They do handle diaper changes and can transfer from wheelchair to bed and even offered to do house work! Though I declined the housework part, feeling Bob needed the attention more than the house needed cleaning---not that the house doesn't need cleaning, but.... Then, the caregiver arrived and she was just wonderful!

The whole afternoon I received only one phone call from her and that was because Bob wanted to play Scrabble and he kept asking for her to get the "box" and she didn't know what or where this "box" was but I figured out what Bob meant was "book" not "box", meaning he wanted the Scrabble Dictionary. Turned out she didn't know how to play Scrabble and I was told, when I got home, that Bob taught her how to play. (Now, that would have been interesting to watch!) Later Bob told me that she was "horrible" at Scrabble, but he had fun and that's what mattered. I was able to get out of the house to go shopping with my relatives and out to eat afterwards and though I was a bit worried at first about leaving Bob with a stranger, it all worked out so well. It was unbelievable.

And they say money doesn't buy happiness. All I can say is I sure wish we had the money to hire an agency occasionally. It certainly made me happy yesterday! Though I can't say as much for Ripley, who spent the whole day cowering inside the covered litter box...

Today, we are off to the beach again and Sunday, the hired caregiver is coming back for another round of Scrabble. And right now, it is time to get Bob's bedbath done and get him going for the day. So I'm off.

Relearning To Walk

Yes, we need a bigger hallway!

As I mentioned in my last post, Bob is up to a new record of 31 times walking the rail. This translates to about 186 feet of stepping, plus 31 times pulling himself up and sitting back down. He has more than doubled his record of 15 times set in September. I am so proud of him!

He still needs to pull himself up on the rail and still leans heavily against it (as you can see) but he is taking bigger and quicker steps and is gaining confidence.

My mom took this picture of us, that's me holding onto his gait belt, strictly for safety reasons. With my other hand, I pull the wheelchair behind him so he can sit down quickly if he needs to, or I can pull him backward by the belt into the wheelchair if he starts to slide...

The day of this photo, Bob had a difficult start on the rail, then we all looked down and realized why.... I had put his shoes on the wrong feet! Lord almighty--so much for impressing my folks with my therapy skills...

Seeing Him Through Other Eyes

Yesterday, my mom and dad and my aunt and uncle arrived for their yearly visit. It was so good to see them. The last time they were here, Bob was still in ICU waiting to be transferred to Kindred, the pulmonary hospital. After they flew in, got their rental car and checked into the motel and got settled in, they came to visit us here at the Pink House.

I'm afraid we are not set up for visitors these days--the living room being converted into Bob's room with his hospital bed pretty much taking up most of the floor space. In the old days, we would have sat on our front porch, but Bob and I had done therapy earlier in the day and he was bushed from walking 31 times on the rail (yes! 31 times!) and I didn't have the heart to drag him out of bed into the wheelchair. So, we all sat in the living room, crammed around the hospital bed. After the initial greetings, the how-was-the-flight? type stuff, the atmosphere grew somewhat awkward.

Bob, I must say, was quite valiant, trying his best to keep the conversation going, but unfortunately all that was coming out his mouth were sentence fragments and odd words strung together which didn't make a lot of sense and left everyone confused. Much of what others said to him seemed to go right over his head, though he answered "yes" and "no" questions he often said "no" when he meant "yes" and vice versa and I had to continually jump in as if I was an interpreter of a foreign language. And I tell you, each time he tried so very hard to speak and came up with gibberish, it just about broke my heart.

And I can't help feeling that my god, he's worse than I thought.

I guess we've been somewhat isolated here and I have grown used to his often meaningless chatter. Which is why I am in rapture every time he speaks a clear sentence. But just seeing him, yesterday, trying so hard..... well, it still brings me to tears.

Today, I plan to take him out to the beach resort where my folks are staying. I do hope everything goes well.

All Saints' Day

Yesterday, I asked Bob if he knew what day it was and he answered, "I don't know." So, I gestured around the room which I had decorated for him in jack-o-lanterns and a plastic ghost, but he still didn't get it, so I said, "It's Halloween, silly."

Bob said, "Duh. Happy Halloween!"

And I said, "So you know what that means? That means tomorrow is..." I wanted him to fill-in-the-blank, because tomorrow would be my birthday. Long ago, Bob had told me that he would never forget my birthday because it was so easy to remember, being the day after Halloween.

But Bob said, "I don't know."

So, I coaxed him further, "Today is Halloween and that means that tomorrow is the day after Halloween, which is what important day?"

Bob thought about it for a minute, then, triumphantly said, "All Saints' Day!"

OK, that is true, but...

One year ago today, Bob, while in ICU, extubated himself which is a fancy way of saying he yanked out his own breathing tube and, to everyone's amazement, began breathing on his own.  So today is a good anniversary.

Anyway, happy All Saints' Day to everyone, happy anniversary to Bob and happy birthday to me, even if I'm the only one here at The Pink House who remembers that last one!

The Kindness Of Strangers

So I walk into our bathroom, I don't remember why, did I have to go to the bathroom or was I going to get something? I don't remember... but what happened was that I stepped into the bathroom and I heard this noise, this sort of gurgle, gulping noise, and I stopped. And thought, what the hell? I stood there and listened and then I saw the toilet bowl was filling up, on it's own. Filling up to the top. I stood there and watched it, sort of amazed for a minute, but it was nearly overflowing, so I ran to grab the plunger, but the minute I have the plunger in hand, the toilet is overflowing onto the floor, so I grab the rug and my shoes which were there on the floor and throw them into the hallway, and I take the plunger to the toilet and then I hear another gulping, gurgling belch and it's tub. Water is coming out of the tub drain into the tub. I step back, horrified, I step back. It's as if the bathroom has come alive! Even Ripley, who had followed me into the bathroom, flees in terror.

I am not a plumber. Bob used to handle that stuff. I am pretty handy, I mean, I can replace an electrical outlet, put in a light fixture, I even once hung a ceiling fan--though that still wobbles a bit, but plumbing? That's a mystery to me, so I am pretty much freaking out. So I run to Bob, who is in his hospital bed, and I blurt out the problem and he looks at me and says, calmly, "Oh well."

A lot help that is.

I grab the phone book. It's a Sunday and I'm thinking there's probably going to be an extra charge for work on Sundays and I have visions of dollar bills flying down the toilet, literally.  And, crap, how are we going to afford this? but I'm flipping though the yellow pages and I see an ad for plumber which says "no extra charge for weekends or holidays" so I call them.

They tell me they will send someone out within 2 hours. While I wait, avoiding the horror scene in the bathroom, Bob and I run through his leg exercises in bed and do his range-of-motion right arm exercises and I realize I need to trim his fingernails and as I'm doing that, the plumber arrives.

The plumber is a nice young guy who actually introduces himself and shakes my hand, which is sort of unusual, for a plumber. I show him the bathroom and tell him what happened and he says he thinks the sewer line is clogged. He asks if there is a sewer access cap outside. I am thinking what? He tells me it's a white round cap, usually in the ground near the house and I'm thinking I've never seen anything like that, I mean, Bob and I painted this whole house a few years back so I've pretty much had my hands on every crevice and cranny outside, but I don't remember that... but we go searching. All around the house. And we find nothing. So he starts to dig.

Sometimes, he says, the cap in on the pipe underground. And if he can find the cap, he can run a roto-rooter through it, otherwise he'll have to take the toilet off and that will cost extra. So, he's digging and hits a pipe and digs around it and lo and behold, there's a pipe but no cap. And he continues digging and uncovers the pipe, which is a 90 year old terra cotta pipe and it has two huge gaping holes in it.

It doesn't look good. It looks, in fact, like our sewage has been pouring right into the ground. He digs around the pipes and through the two large hand-sized holes, he pulls out clumps of tree roots.

He says, "You've got to replace this pipe."

I gulp, "How much is that going to cost?"

And he says, "Well, we have to run a camera through it to see how much pipe needs to be replaced, but just this part will cost about $1500 and if they have to go all the way to street you're looking at $4000 or more. I can send a guy with a camera tomorrow, that part will cost $390.00"

And I'm thinking: oh shit.

He says, "We take credit cards or we can finance it, if you have good credit."

And I thinking, oh shit again. Because of course we don't have good credit, not after all these medical bills, etc. and our one credit card that I've managed to hang onto is nearly maxed...

I say, "Our credit is shot. My husband had a stroke last year and all these medical bills are after us..." and I start to cry. Right then and there. I hate to admit it. But I can't help it. I am standing there looking down into this stupid hole on the side of our house with a pipe with two big holes in it and I start to cry. Because honestly, I don't know what to do.

He tells me that his mother just had a stroke and she's in rehab. So he certainly understands, because he has power of attorney and the medical bills are enormous. That he is one of 11 children, and everyone in the family has gone broke just trying to pay for his mother's rehab.

He says, maybe you can get a handyman out here to do it cheaper, the pipes could be "patched" with concrete, but he (the plumber) can't do a "patch" job because that would get him fired.

He says, he'd be happy to run a roto-rooter through, see if the rest of the pipe can be unclogged first, there's certainly a tree root problem here but the pipe would then have to be patched somehow and who knows the roto-rooter might break through the old pipe down the line..... But he could do the roto-rooter and that would cost $250.00 but there's no guarantee it would work. No guarantee and it might make things worse. And I could hire someone else to patch the pipe.

I say, sniffling like an idiot, "I have to think about this." Because even $250.00 is a lot of money for us. Especially with no guarantee. And where would I find a "handyman" to do this. I look toward the house, where Bob is inside, in his hospital bed waiting for me and I'm thinking, god damn it, Bob, you're supposed to be well and out here and handling this stuff!

We stand there a few minutes staring at the hole in the ground and the old broken pipe.

Then he says, "Is there a Home Depot nearby?"

And I say, "Yes."

He says, "You run to Home Depot and get some Quickcrete and a 5 gallon bucket, and I'll run the roto-rooter through, and I'll be real careful not to break the pipe and if it doesn't work, I won't charge you, but if it does, I'll patch the pipe with concrete and that will get you by for awhile. I'm not supposed to do this, so don't tell anyone. I could lose my job. Maybe my license."

And I did. I run to Home Depot, all the while praying to the roto-rooter gods that the pipe doesn't break. And he did, run the roto-router through, which unclogged the old pipe. And he patched it with concrete, all the while as he worked, we exchanged "stroke stories", his mom, my Bob. And he only charged me $200.00 and we hugged each other when he left.

Thank goodness for the kindness of strangers.

Back in the Saddle

I am back on my feet, after being sick for a couple of weeks, though still not 100% well. Bob and I are once again trudging through his daily therapy routine, though I find myself tiring easily. This has all come at the worst time, as we are expecting visitors next week. My parents as well as my aunt and uncle are coming to see us--which I am really looking forward to, but I had planned to clean this darn house plus whip the yard into shape before they got here, and everything including my health is getting in the way.

This past hectic week, we spent visiting doctors, (his primary doc doesn't think Bob is ready yet to go back to rehab) plus I signed Bob up for a new Medicare plan--it's open enrollment now and the co-pays on his old plan was going up: $40.00 just to see a doctor and Bob has seven different doctors. But that's now taken care, as well as I finished up his 'disability discharge' paperwork for his student loan, which has to be done yearly. Then the wheelchair guy was over for a final tweak of Bob's new chair, and of course, the minute he leaves Bob wants it re-tweaked again, so I'm on my knees with a screwdriver, messing with the chair. Then our friend, Chris, is in the hospital with a blood clot in her leg (she may have to have toes amputated) and that has been weighing heavily on my mind and I've been spending a lot of time on the phone with her. Which also means she can't get over here to watch Bob for me, so I've been making "mini-runs" to the pharmacy/library/stores just about everyday so that I am not away from Bob for more than a half hour at a time. Yesterday, the Y-port on Bob's peg tube split in half and I had to duct tape it together to hold it closed until they can send a new one. This morning, there was a bowel movement to clean up and while I was doing that, Bob peed all over me and the bed.  aaaargh...

The other day, while I was rushing through the library to pick up some DVDs for Bob, I saw a book on the new non-fiction shelf by Diane Ackerman. Grace Carpenter had mentioned that book in a comment here, so I scooped it up as I stood in the checkout line. The book is called "One Hundred Names For Love" and billed as "A stroke, a marriage and the language of healing". The jacket says the author's husband suffered a massive stroke and severe aphasia and she "designed" a therapy for aphasia with "astounding results". So, of course I checked the book out, hoping to find out something useful for Bob.
I don't have a lot of free time to read, but figured I could read it over breakfast bit by bit. Well. This book has brought out some weirdly strong emotions in me and I'm only 60 pages into it. Of course, the beginning is all about the stroke itself and backstory about the two of them, but I find myself becoming insanely jealous.

Yes, jealous of another woman's husband's stroke. Which is really weird when you think about it. Is there even such a thing as "stroke envy"? Or have I invented it?

But here her husband is, right after having a "massive" stroke, and he's walking---walking!---to the bathroom! And I can't believe it. He's walking, albeit wobbling with an aide's help, and he can go to the bathroom so he can control bowels and bladder and lordy, I am jealous. Not only that, but he can eat scrambled eggs. He can eat! She says he has a swallow problem, but he's eating at least something. And she's moaning about the possibility of sending him to nursing home? Then there's all these references to their posh house with a pool, not to mention the fact that she's making money off this book and here I am trying to figure out  how to pay the car insurance which is due next month, while the phone rings with creditors. And of course, all the doctors that treated her husband were so great and Bob had to deal with a bunch of white-coated idiots. Then, the next scene when her husband starts to move his arm, while still in acute rehab---I nearly threw the book across the room! (Why couldn't Bob have had a stroke like that?! gaaa!)

I guess I'm just throwing a bit of a pity party here. And probably more than just a bit of professional writer envy. (Heck, I should be the one writing a darn book!) I need to find a book about someone's stroke which was worse than Bob's, then I'll feel better. But I'll keep reading it, because I haven't yet got to the part about her innovative aphasia therapy and that's why I'm reading this darn thing in the first place....

Well, I gotta run because I'm doing three loads of pee-soaked laundry and still need to try and clean this house up a bit.

Bob's New Wheels

Bob and His Brand New Wheels

Finally, a "Bob-sized" wheelchair! The standard wheelchair they sent from the hospital was just that: STANDARD and Bob is 6'3" so you can imagine how uncomfortable he was.

This puppy was ordered in May and finally delivered in September and after a month or so of adjusting, it seems to fit him fine!

Special thanks to my mom and dad and Disability Achievement Center for paying the co-pay, otherwise we couldn't have afforded it.

One Year Stroke Anniversary

One year ago, Bob had a stroke. Just seeing that date, Oct. 21, on the calendar floods me with emotion...

Yesterday, I asked Bob if he knew what day it was. He looked confused. So I said, "It's October 21st."

Still, he was confused. I said, "One year ago today, you had a stroke."

He said, "Oh."

He was quiet for awhile then asked, "Months?"

I said, "Twelve months ago. You had a stroke twelve months ago today."

He was quiet again, then he shrugged his unaffected shoulder and said, "Oh well! Happy New Year!"

Shut Down

We are surrounded by foreclosures. The house behind The Pink House sits abandoned, its stucco face cracked with age lines, its wooden front steps broken and leading to a drooping porch on which a bloated and long ago delivered telephone book lies. On the other side of us is an empty duplex, its aluminum eaves, pealed back like a sardine can, clank when the wind rises. Next to that, the melted facade of a long forgotten house, its vinyl siding liquified in a fire set by vandals, window glass all broken out.  Across the street, a For Sale sign has sprouted in the lawn and next door to that another foreclosure, though that neighbor is hanging in there until, she says, they drag her out kicking and screaming.

A few years ago, during the big real estate boom, we were the next "up and coming" neighborhood. Ripe for revitalization, conveniently located with many fine historic bungalows ready to restore....

And now, it seems like this neighborhood has shut down.

These past few days, our DIY rehab center at The Pink House has been shut down, too. Because I've been ill. Me. The strong one. The one whose always healthy as a horse. Lately, it takes everything out of me just to get Bob's bedbath, meds, tube feedings done and then, I am down for the count. Crashed on the couch. Feeling as dismal and miserable as this neighborhood. And guilty as all get-out....

Which brings up another dilemma, the first time we are dealing with this, which is: Who takes care of the caregiver when the caregiver needs care?

Go Fish

Toward the end of Bob's Speech Therapy, when it became apparent to me that the therapist was giving up, I began to hunt around for new and different speech therapy techniques. Unfortunately, there's not much free information out there. I did run across the mention of "Constraint Induced Therapy" for aphasia, but that invariably led to me a website to "buy our computer program" or "enroll in our clinic", both of those options being too expensive for us. I had heard of Constraint Induced Therapy for arm/hand paralysis, and that the therapy involves securing or tying back the unaffected arm/hand so that the participant is then forced to use the affected arm/hand instead. But how is this done with aphasia? When there's nothing to tie back or secure???

I continued searching for this therapy and finally landed on the results from a research study group for Constraint Induced Aphasia Therapy. In that study, the participants played the card game "Go Fish" and as they played this game, gestures such as pointing, etc., were "outlawed" and the participants were thus "forced" to speak. And I thought, well, Bob and I can do that. We can play "Go Fish."

But alas, I had never played Go Fish before--did I have a deprived childhood, or what? ha! I managed to find a deck of Go Fish cards at the pharmacy for $2.50 and snatched it up. Fortunately, it had directions.

We've been playing Go Fish since about May, when the Speech Therapist was giving up on Bob and she was starting to "teach" him gestures (which was idiotic, I mean, he's aphasic not retarded) and wanted me to put together that Clip Art Notebook so that Bob could point to pictures instead of saying words (I hate to say, but I never did do that. It just didn't seem the right thing to do.)

In case you (like me) never played Go Fish or have forgotten how it's done, the game is pretty simple. The deck I bought is geared for children, so it has pictures of animals on it. Each player gets dealt five cards and the rest of cards are put in the "Go Fish" pile. Then we turns, asking each other, for example, "Do you have an elephant?" And if the other player has an elephant, they must give it up. If they don't have an elephant, the other player tells you to "go fish" which means take a card for the pile. The object of the game is get as many matching pairs as possible. The one with the most pairs wins.

While we play Go Fish, I really force Bob to speak, to say the phrase "do you have a...?" He does have a big problem with names of things, so I show him my card while asking him, otherwise if I just asked him for an elephant, he'd probably hand me a Lion card, instead. So I let him see the card, so that he can make the connection. When it's his turn, I give him time to try to figure out the name of the animal, only helping when he gets really stuck, and then usually if I give him the first sound in the word (example: "el" for "elephant") he can figure it out.

So where is all this leading? Yesterday, when we played Go Fish, Bob really shocked me. Usually when we play, and it's my turn and I ask him for a card and he doesn't have it, he says "no" and I have to coax him into saying "go fish". Yesterday, he responded "No, I do not. Go Fish!" And he did this pretty much consistently throughout our game.

"No, I do not. Go Fish!"

Oh, I do hate to sound like a broken record, but every time he comes up with a complete sentence and/or new words, I am just leaping for joy!  So forgive me.

Also, yesterday, Bob hit a new record on the rail: 26 times. But, more exciting for me was that afterwards, he said, "Geez. I'm worn out."

And to think Bob is having this "breakthrough" now, just one week shy of his one year stroke anniversary. And to think, Speech Therapy gave up on him back in June.

Timelines & Predictions

Bob's one year stroke anniversary will be on Oct. 22nd. This impending date has had me, I'll admit, a bit freaked out because of all the talk about "the first year" post-stroke and recovery being difficult if not impossible after that. In some ways it doesn't seem like a year has already passed. In other ways, it seems much longer than that--a lifetime maybe. I don't think I was prepared, back then, for what a long process this recovery would be and still is.

I remember one of the first "predictions" about Bob's recovery came from one of the doctors in ICU who told me, in November, that Bob would be "home, walking and talking and eating, by Christmas."

I actually believed that guy and he was wrong, on all points.

Then, another doctor in December told me "don't get your hopes up" as "he will never walk again."

We are still proving that doctor wrong.

And the doctor in charge at the Acute Rehab Hospital, who told me that Bob would never come home and would have to, sadly, spend "the rest of his life" in a nursing home. Wrong, wrong, wrong again.

And countless therapists, who told me that Bob had had too many "set backs" and got started on rehab too late, because, you know, after that "window" which is the first "three months" or "six months" or "one year" (depending on who was talking at the time) the prognosis is very poor and recovery is unlikely....

Recently, I was browsing an aphasia/stroke website and I ran across a discussion board and was horrified to find that many people on that website were under the impression that if you haven't recovered from aphasia in 2-3 months, you will never recover or improve.... I am glad no told me that.

Because Bob has had, I believe, the greatest overall improvement in his speaking, just this last month. He has said so many complete sentences that, geez, I've lost count.

Also, this week, Bob hit a new record on the rail, 25 times: that's approximately 150 feet that he is walking almost everyday. At Outpatient Rehab he was lucky to do 50 feet, three times a week, on the parallel bars. So much for "hitting the wall"--eh?

Which makes me wonder, why do these doctors and therapists and experts always make predictions? Why are all these timelines handed out as though they are "set in stone"? Because it seems to me that it only discourages people.

So, today, I'm making a vow to myself to no longer get freaked out about timelines. So what if his stroke anniversary is coming up? We still have time and determination to improve.

CIDP Still "Quiet" & Other Neuro News

I took Bob back for his follow-up with his neurologist last week and the doc thought Bob was doing quite well, all things considering. Bob's affected (right) hand is gaining spasticity which means it is progressing somewhat, so not all hope is lost for that. He was worried a bit that Bob was clenching his hand to tight and talked about getting a splint, but really that's up in the air. I'm to keep an eye on it. He also tested Bob's vision, but, unfortunately, there is no improvement there. I think, we were all (doctors and I) hoping that some of his vision would come back, but Bob still is totally blind in the left eye and has no peripheral vision in the right one. And that is sad.

The doctor also informed me that Bob would have to stay on blood thinners (Warfarin) for the rest of his life because his "genetically unnaturally thick blood" could cause another stroke. And also he will have to have a once month blood test for the rest of his life to monitor his blood thickness. But that's something we can manage.

The doc then tested Bob for CIDP and he could find no trace of that disease, he said the CIDP was "quiet" and thank goodness for that. I was beginning to worry as Bob seems to be having more trouble holding his head up lately, but the doctor assured me it was just muscle atrophy from the CIDP and not the CIDP returning. And that is such a blessing.

An interesting aside, Chris' brother suffered a left hemisphere stroke about three months ago (he's doing quite well now, just some right hand coordination problems) but he also previously suffered from diabetic neuropathy and since his stroke, his neuropathy has also completely disappeared. Makes me wonder if anyone's done any research on this phenomenon... i.e.: stroke cures neuropathy??

Terms of Endearment

Since the stroke, Bob has not been able to remember my name. I'm talking not so much about my actual proper name (though that, too, is a problem) but my "pet name". Like many couples, before the stroke, Bob and I did not walk around the house addressing each other by our proper names. We had pet names. Mine for him was "Dar" which is short for darling, but also means "gift" in Polish. Or I called him "Bucky", don't ask me why. He always called me "Sweetheart" or "Sweets" for short. I know it's rather sappy, but I certainly have missed that.

Back in January, when he first came home, he kept calling me "Brenda".

(Which really brings to mind one simple question, which is: Just who the hell is Brenda??)

After he got over the "Brenda stage," he stopped addressing me completely and when he wanted me, I became just "hey" or "yoo hoo" or occasionally "hey you".  Not very romantic, that.

So you can imagine my joy when, just yesterday, Bob turned to look at me and grabbed my hand and said, "Sweetheart."

Just that one word.

And I am elated! I mean, I'm like a 13-year-old with a crush on a boy who just smiled at her. I want to do cartwheels through the house!!---but I won't because I'd probably just break my neck.

But such joy, such simple joy, just to be a "sweetheart" again.

End of a Long Strange Summer

A "cold front" moved into Florida yesterday, and I put quotes around "cold front" because you folks up north will laugh when I tell you that means our temperatures dipped to a frigid 69 degrees at night and cooled down to 85 degrees during the day. But what a pleasant relief from the constant 93+ degrees that has been droning on all through this summer.

It has been a longest, strangest summer. Bob and I have been pretty isolated here at the Pink House. Window shades drawn (for energy efficiency), air conditioner humming in the background. Every day a repeat of the day before: laundry, bed bath, tube feedings, therapy in the afternoon, diaper changes, bladder issues....

Yesterday, I flung the windows wide open and aired out the house. This made the cats quite happy. This morning, I got out in the yard to do some much needed yard work.

Yesterday, too, Chris moved out. The neighborhood seems strange and lonely without her.

"Not Simon"

Last week, I found a home for a stray/lost cat who had been hiding under our wheelchair ramp during the day and snoozing on our front porch at night for about 3 weeks. I had called an ad for a lost cat that sounded much like this one, and when they came to look at him, it was "not Simon" (their cat) but they actually fell a little in love with him and asked if they could take him home. I said yes, of course, because he would be so much better off in a good home then hanging out under the wheelchair ramp. And I really I don't have money to support and care for another cat. (Although I was already feeding him, I've always been a sucker for a stray....) And now, I rather miss that kitty.  I still find myself looking for him each time I go outside. Seems like my heart has broken more than once this past week.

Last I heard from the people who took "Not Simon", they had taken him a vet, checked for a microchip (found none), given him blood tests for Feline Leukemia and other things (all negative), got all of his shots, had him dewormed and now he is living in a climate controlled condo in Innsbruck with a female friend of their's who is an Occupational Therapist. Weird, huh? So, I do know he is better off.... but still, I miss him.

Also, this past week Bob hit another new record walking on the rail: 23 times. Although yesterday, he could only manage 18 times. When he indicated he couldn't do anymore, he looked up at me and asked: "Are you mad at me?" Of course, I wasn't "mad" just a bit disappointed and concerned as his right knee was buckling and it hasn't done that for a long time. But, hey, that was another complete sentence coming out of his mouth.

Strictly Speaking

Awhile back, I started a new speech therapy technique with Bob which involves increasing the length and complexity of sentences. Bob has Broca's aphasia and his two biggest problem areas are not being able to form a complete complex sentence and not being able to find the right word, especially the names of things and people. He tends to speak using mostly single words though sometimes he can say a simple two or three word sentence, for example: "I love you". A lot of what he says still comes out garbled, but that, I think, is due to semi-paralysis of his tongue and throat and so we are also working on tongue exercises and throat/vocal exercises. Which means we spend a good amount of time sticking our tongues out at each other, making funny faces and singing--which is actually quite fun.

Increasing the length and complexity of sentences, though, is not fun. It's tedious work.

While Bob was going to "professional" speech therapy, the ST did not think it was a big deal that Bob could not speak in complete sentences. To her, it was only important that he get his message across with gestures or single words. So, for example, if Bob wanted me to the turn the radio up, if he could say "radio" or even just point to the radio and then say or gesture "up", and that was good enough for the ST.  Well, that's not good enough for me.

I suppose if Bob had been the "strong and silent" type, perhaps that would be good enough. But Bob was a chatterbox, a real talker, I mean, he made most of his money in sales and the last eight years at his old job, he was top salesman in the company. This is a guy who could sell ear enlargements to an elephant. He was so charming and witty and such a good conversationalist. I remember folks used to be shocked when they found out that Bob and I did not own a television set. What do you do at night? they would ask and when we said we "talked", they would look at us in disbelief because what on earth do you talk about after 16 years of marriage? Well, we did talk. About everything and anything. And lord, I certainly miss that.

But back to my new therapy technique which involves me saying a word and then Bob repeating it, then me saying a slightly longer derivative of the same word and him repeating it, then me using the word in a complete sentence and him (hopefully) repeating it. We do this for about 20 minutes a day, which is tedious, so I try to make it fun though that's not always possible. Here's an example:

Me: "miss"

Bob: "miss"

Me: "missing"

Bob: "missing"

Me: "The money is missing."

Bob: "Oh no!"

Me: "Repeat the sentence: The money is missing."

Bob: "Is missing."

Me: "Say the whole thing. The money is missing."

Bob: "Say the whole thing."

Me: "The"

Bob: "The"

Me: "money"

Bob: "money"

and so on. As I said, it is tedious, BUT, I do believe this therapy is working! Just this past week, Bob has come out and said, quite clearly, some very spontaneous and complete sentences. Here's some that I wrote down to share:

"Gee, you are mad."

"That show was good."

"Yes, I do understand."

"We did a lot today."

"We are moving on up."

"Why didn't you say so?"

and this one, just yesterday:

Bob: "Do you want to know my name?"

Me (surprised): "Sure."

Bob: "Bob. My name is Bob and you are... (long pause here)... not Bob."

OK, still work to do on names of people and things....

On A Better Note

Bob hit a new rail-walking record this afternoon: 20 times!

I tell you, the man's turned into a regular walking machine.

Losing Chris

Chris has been our neighbor and friend for eight years. She lives just three doors down the block and since Bob's stroke, she has been a godsend to me. She's always willing to help out, pitch in, watch Bob for me so I can run errands, etc. When Bob was in the hospital, she came over every single night when I got home to sit with me on our front porch while the weather was good, and later, to sit in front the fireplace when it got cold. And she listened to me crying, worrying and, later, complaining about his care. She was there the day he came home with a bundle of extra sheets and towels. She carted my wet laundry down the block to her dryer when my dryer broke. She's always been there when I needed her.

This week, I found out, she's moving.

I tell myself that she's just moving across town, really, it's not so bad. But she doesn't drive and pretty much gets around on her power wheelchair these days, so she'd have to take a bus to get here, which is a burden. But the move will be good for her, the rent being cheaper (her landlord is planning on raising her rent $100/month and she just can't afford to stay in that apartment). And maybe we'll work things out at this distance.

But, you know, I am going to miss her like hell....

A Tentative Reason to Rejoice

OK everyone, find a piece of wood and get ready to knock on it..... because (drum roll, please):

Bob's bladder is a bit better!

(whoa, that's a bit of tongue twister, trying saying that one fast.)

He's on his third week of the new bladder medication, Gelnique, and the stuff seems to be, finally, working. Although he still is having some trouble, so it's not perfect but.... The biggest difference is no more bed-wetting. I am actually able to go to bed and sleep through to morning---for the first time in I-don't-know-how-long. So, I am getting some sleep: precious, wonderful, though still dreamless, sleep! And yesterday, he was able to do his leg exercises in 25 minutes, whereas before these same exercises took 2 or 3 hours because of all the bathroom breaks.

But like I said, everyone, are you with me here? Knock on wood, knock on wood, knock on wood.....

Our First "Date Day", Post-Stroke

Last Thursday, the 16th, was our 17 year wedding anniversary. I wanted to do something special in honor of the occasion, so we took the Wheelchair Transport to a local art museum. This was Bob's first pleasure trip since the stroke. Here he is as the entrance:

I was a bit apprehensive if Bob could handle it (with all the bladder problems), so only scheduled us out for a window of 2 1/4 hours, but, of course, the wheelchair transport was late coming to pick us up (Why is that, anyway? When you want to go somewhere fun, they're late, otherwise they come way too early for his doctor's appointments, etc.) so by the time we got there we had to rush to get on the next tour.

Unfortunately, the tour was packed and there was a problem with people standing in front of Bob, who could not see around them, but, all in all, we enjoyed the tour up until the last couple of exhibits when I could tell Bob was getting uncomfortable and then, of course, he had to pee.

So, there we were, in yet another public bathroom for 30+ minutes, Bob trying to pee, and he can't go.  Aaargh. Then, dashing out to catch the wheelchair transport home....

Here's a photo of us, 17 years ago, in the process of getting hitched:

We were married by the justice of peace, and at exactly 4:00 p.m. (our scheduled time) there was a power failure in the court house and all the lights went out---Gosh, an omen???? That's why this photo is so dark. We actually had to go into the judge's office and stand by his desk at the window so we could see what we were doing.

There's a brighter wedding photo on my profile.

Bob At The Rail

(Click to enlarge!)

Here he is, having just set another rail walking record of 15 times!
One month ago, he could only make it 5 times.

He's hot and sweaty 
and showing us some real "tough guy", fighting spirit!

That's our hallway rail, I know--I need to paint it--but who has time?

The Singing Penis & Other Bladder Problems

We just started another new bladder control medication, this will be the third or fourth one (I'm losing track) that he's tried. The last one was Vesicare, first 2.5 mg. then 5 mg. and finally 10 mg. The 10 mg. seemed to help---sometimes, but in the past few weeks it was more and more ineffective. The urologist switched Bob to Enablex but that turned out to be time-released and could not be put into his feed tube. So now he's on something called Gelnique, which is a topical gel that's absorbed through the skin---and I am just praying this works.

Bob's main problem is that he feels a constant urge to pee. And I mean constant. All day long, it seems, he needs to pee and nine times out of ten, he can't go. The urodynamics test showed that his bladder floor was contracting instead of relaxing, then relaxing instead of contracting, so it's pretty much all screwed up. You can't believe how aggravating, time-consuming and not to mention uncomfortable (for Bob) this has been. He's even developed pressure sores you-know-where from using the urinal so much.

The first dose of Gelnique seemed to work like magic, he was able to pee just one hour later. Then the next day, we were back to square one. At the one week mark, he had one beautiful day, it was heaven, everytime he had to pee, he could! I was doing a happy dance all through the house (amazing, the things that get me excited these days) but then the next day, he once again cannot go.

Then, yesterday, while he was trying to urinate, his penis was singing. I kid you not. At least, that's what Bob said it was doing. Our conversation went something like this:

Bob: "It's singing." Motions to you-know-what.

Me: "You mean it's stinging?"

Him: "No. It's singing." He's quite adamant about this.

Me, thinking this is the aphasia talking, he means something else: "Tingling? Burning? Itching?"

Him: "No! IT'S SINGING!"

Me:  (thinking: It's certainly not singing, I mean, I can't hear anything.) "I think that's the wrong word, sweetheart. You don't mean singing, you mean something else. Try to find the right word."

Him, silent, trying to find the right word.

Me: visions of you-know-what with a microphone and miniature top hat, tap-dancing across the stage.....

Him, finally: "Boinking?"

Lordy lord. Sometimes, I tell you, it's darn hard to communicate. And I still don't know what he meant or if he really said "singing" or I just couldn't understand him. Though it is rather funny. Just praying this new medication kicks in soon. Our wedding anniversary (17 years!) is this coming Friday and I'd really like to take him out for a "date" without spending the whole time in the bathroom.....