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.