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.