Sunday, May 19, 2013
Aphasia vs. Dysarthria: Finding The Right Words, Then Saying Them Wrong...
I think the worst thing, at least for me, after the stroke was Bob's inability to speak. I always told myself that it would be easier deal with all of his physical limitations, if only he could speak to me. Tell me what was on his mind. Talk about what he was feeling.
Bob has struggled with speech now for over two years and continues to struggle. But he has come a long way, baby. From his initial grunts and gurgles, to calling everything "window" or "radio", to short phrases such as "I love you" and "Turn it up", to complete sentences that sometimes even make sense. And it seems to me that the aphasia is slowly "clearing" up or at least getting less severe. He does seem to be finally finding "the words"... This while physically he seems to be deteriorating.
Yesterday, he said a complete 11 word sentence, which went like this: "I want to thank you from the heart of my heart." This was after I just cleaned him up from a bowel movement. I swear, my heart soared! Even though I knew he meant "from the bottom of my heart". Still, it's good to hear his voice again.
Then dysarthria rears its ugly head....
"Dysarthria" is a fancy way of saying he has trouble articulating. This because his mouth and tongue are weak and partially paralyzed. This is nothing new. He's had it the whole time, although the first speech therapist misdiagnosed it as "apraxia" which is truly a different thing. But now the dysarthria seems more pronounced -- or should I say mispronounced? -- because more and more he is finding the right words but sadly, the words are coming out all wrong.
Case in point: About a week ago, we were watching a movie and an actor appeared on the screen and I thought, hey, that's what's-his-name!, because I couldn't remember the actor's name, even though he's quite famous. And I said to Bob, "That's what's-his-name! Oh, I can't remember his name. What is his name?" And I'm sort of beating my forehead thinking, darn, it's right on the tip of my tongue---what IS that guy's name???
Bob says, "immony omens"
To which I answer, "Huh?" And I finally pause the movie, because this is really bugging me, and get up to look at the DVD case. And, of course, there's the name.
I say to Bob, "Anthony Hopkins. Duh."
Bob says, "See?"
I say, "See what?"
Bob says, "I knew it."
Me--I am surprised at this, because truthfully, this would be very hard for someone diagnosed with not only Broca's aphasia but also "anomic" aphasia. Anomic aphasia being the inability to remember names of persons and/or things. Then, I think, well, he did say something---what exactly did he say?
So I tell him, "Say 'Anthony Hopkins'."
He says, "immony omens"
All righty. I guess it sort of sounds like Anthony Hopkins.
Other recent Bob-isms include: "cocock" meaning "botox", and "dude-o-mer" meaning "pedometer" (which I wear when I walk the dog), and "furrer" meaning "furniture". And those are just the ones I figured out.
I tell you, I spend more and more of our "conversations" saying, "Huh?" And it has got to be so very frustrating for Bob, who---when he sometimes finally finds those words but cannot say them right, and, still, no one understands....
Wednesday, May 15, 2013
Once again, I am The Bad Guy
Yesterday, we went to see the newest neurologist. I say "newest" because this is the third neurologist Bob has seen. The second neurologist, Dr. K., was absolutely wonderful. In fact, he was one of the best doctors I've ever met. Unfortunately, he is leaving to work for a children's hospital and so we have been referred on to Neuro Doc #3. This neurologist will be handling the Botox treatments for Bob's dystonia.
The appointment started with the nurse/assistant. She looked at Bob's neck and at his left leg (which he can no longer extend straight out) and the curled toes on his left foot. She told me these were all "muscle contractions" and the cause of it was from "being immobile". She said that "evidently" I was not getting Bob enough exercise. And that this type of symptom is often seen in nursing home patients.
Those of you who follow this blog know this is simply not true. I have done my darnest to keep Bob in physical therapy and when he doesn't have professional PT, have been exercising with him at home faithfully--until recently that is. Until this dystonia caused him to drop out of PT. I told that nurse all of this and she looked at me like she didn't believe a word I said...
Then the neurologist came in and looked at Bob and told us that Bob's toes were "too far gone" and that Bob's neck was also "probably too far gone", and that Botox would not help him. Then he said that I should have brought Bob in at the "onset" of these symptoms and I should not have waited an entire year before bringing him in. Because now, it was too late.
I told that neurologist that I did take Bob to see his "old neurologist" immediately after the onset of the symptoms and that neurologist told us the symptoms were due to "neuropathy" and that there "was nothing that could be done about it". And when I asked that neurologist about Botox, he told me that "Botox in the neck would be fatal" and that was the end of the subject.
This new neurologist tells me that the first neurologist was "100% WRONG".
This new neurologist tells me I should have told that first neurologist that he was wrong.
I should have told the neurologist he was wrong? Huh? What do I look like--a freaking doctor?
Though I didn't stop there because the neuropathy diagnosis didn't seem right to me. I asked every single other doctor/therapist that Bob has what they thought of his symptoms and was given diagnoses of everything from "brachial plexus injury" to "torticollis from a drug side effect" to an agreement of the neuropathy diagnosis, to "nerve impingement" to "scoliosis" to a posture complication from keeping Bob's head of the bed elevated to high, to a "possible side effect of his poor vision".... and I even took Bob to a podiatrist to look at his toes and was only given a bunion cushion--- and it wasn't until Bob was hospitalized in February that we met Dr. K. who came up with the "post-stroke dystonia" diagnoses and told us there were treatments out there including Botox--and that Botox would not be fatal if injected into the neck.
So, after much debate, the new neurologist has agreed to "try" the Botox in Bob's neck and also in his hamstring muscles, but will not do the toes--because they are "too far gone".
Botox is set for July 2nd.
And Bob is being referred to a foot surgeon to be evaluated for surgery...
We left that doctor's appointment and Bob was nearly in tears...
And once again, it's all my fault.
Jeepers.
The appointment started with the nurse/assistant. She looked at Bob's neck and at his left leg (which he can no longer extend straight out) and the curled toes on his left foot. She told me these were all "muscle contractions" and the cause of it was from "being immobile". She said that "evidently" I was not getting Bob enough exercise. And that this type of symptom is often seen in nursing home patients.
Those of you who follow this blog know this is simply not true. I have done my darnest to keep Bob in physical therapy and when he doesn't have professional PT, have been exercising with him at home faithfully--until recently that is. Until this dystonia caused him to drop out of PT. I told that nurse all of this and she looked at me like she didn't believe a word I said...
Then the neurologist came in and looked at Bob and told us that Bob's toes were "too far gone" and that Bob's neck was also "probably too far gone", and that Botox would not help him. Then he said that I should have brought Bob in at the "onset" of these symptoms and I should not have waited an entire year before bringing him in. Because now, it was too late.
I told that neurologist that I did take Bob to see his "old neurologist" immediately after the onset of the symptoms and that neurologist told us the symptoms were due to "neuropathy" and that there "was nothing that could be done about it". And when I asked that neurologist about Botox, he told me that "Botox in the neck would be fatal" and that was the end of the subject.
This new neurologist tells me that the first neurologist was "100% WRONG".
This new neurologist tells me I should have told that first neurologist that he was wrong.
I should have told the neurologist he was wrong? Huh? What do I look like--a freaking doctor?
Though I didn't stop there because the neuropathy diagnosis didn't seem right to me. I asked every single other doctor/therapist that Bob has what they thought of his symptoms and was given diagnoses of everything from "brachial plexus injury" to "torticollis from a drug side effect" to an agreement of the neuropathy diagnosis, to "nerve impingement" to "scoliosis" to a posture complication from keeping Bob's head of the bed elevated to high, to a "possible side effect of his poor vision".... and I even took Bob to a podiatrist to look at his toes and was only given a bunion cushion--- and it wasn't until Bob was hospitalized in February that we met Dr. K. who came up with the "post-stroke dystonia" diagnoses and told us there were treatments out there including Botox--and that Botox would not be fatal if injected into the neck.
So, after much debate, the new neurologist has agreed to "try" the Botox in Bob's neck and also in his hamstring muscles, but will not do the toes--because they are "too far gone".
Botox is set for July 2nd.
And Bob is being referred to a foot surgeon to be evaluated for surgery...
We left that doctor's appointment and Bob was nearly in tears...
And once again, it's all my fault.
Jeepers.
Sunday, May 12, 2013
Mother's Day
I have, truthfully, the most wonderful parents in the world. And Bob would agree. Pre-stroke, he called my parents "mom and dad" and now he calls them, for some aphasic reason, "grandma and grandpa".
My parents have been pretty much our sole support since this awful stroke, even though they reside 1400 miles away. When Bob was hospitalized, they flew here and stayed an entire month until Bob was finally discharged from ICU. Since then, they've been back to visit twice and call us every single day to "check in" and make sure we are all right. They have helped us through all of this both financially and emotionally. Honestly, I don't know how we would have survived without them.
But right now, I feel like a total heel because here it is Mother's Day and I completely forgot to buy my mom a card! Of course, I realized this a couple of days ago and but then it was too late.
Chalk it up to my frazzled, overwhelmed, chaotic caregiving world. And my inability to even get to the store more than once or twice monthly (when, God love her, my friend Chris can sit with Bob) because I cannot afford to hire someone to sit with Bob. But those are just excuses. Albeit good ones.
So Mom, sorry about the card. But consider this post your Mother's Day gift. For you are truly the best and most beautiful mother in the world. And we both appreciate all you have done for us and continue to do. And I love you, very much!
My parents have been pretty much our sole support since this awful stroke, even though they reside 1400 miles away. When Bob was hospitalized, they flew here and stayed an entire month until Bob was finally discharged from ICU. Since then, they've been back to visit twice and call us every single day to "check in" and make sure we are all right. They have helped us through all of this both financially and emotionally. Honestly, I don't know how we would have survived without them.
 |
| My Mom and yes, that little munchkin is me. 1960 |
Chalk it up to my frazzled, overwhelmed, chaotic caregiving world. And my inability to even get to the store more than once or twice monthly (when, God love her, my friend Chris can sit with Bob) because I cannot afford to hire someone to sit with Bob. But those are just excuses. Albeit good ones.
So Mom, sorry about the card. But consider this post your Mother's Day gift. For you are truly the best and most beautiful mother in the world. And we both appreciate all you have done for us and continue to do. And I love you, very much!
HAPPY MOTHER'S DAY!
With Lots of Love
from
Bob & Me
& your four-legged grandkids!
Saturday, May 11, 2013
A New Tube For Bob
On Wednesday, we finally got Bob a new G tube. I truly wanted and asked for one of those "low profile" tubes which has detachable tubing and looks like this:
 |
| "Low profile" tube. |
I thought Bob would be much more comfortable without that tube dangling from his belly. And a detachable tube would be easier to clean.... But we ended up with this "standard" one, instead:
 |
| Bob's new tube |
Because the doctor told me they didn't have anything like that. So I asked if one could be ordered for the next peg tube replacement and he said, if I wanted anything fancy, I should go out buy it myself! Jeepers. Like you can pick these things up at Wal-Mart...
I know the insurance will cover a low profile tube and other people on Medicare get them all the time, so why won't this doctor order one for Bob? grrrr....
Then I asked if I could be "trained" to do the next tube replacement at home, because I have read that a lot of people/caregivers do this with the balloon type of tubes. It really is just a matter of deflating the balloon, pulling it out, and sticking a new one in. But he said, no, it was not possible to "train" me.
I tell you, sometimes I think it's all just a crapshoot depending on what doctor you end up with.
The good news, however, is that this new GI doctor says that the tube should be changed out every three months to decrease risk of infection. He also said the balloon that keeps the thing in his belly does not last much more than three months and after that, there is a risk of it "deflating" and falling out. So he's ordering a home health care nurse to come and do the replacement at home every 3 months. Which will certainly be cheaper than paying a doctor to do it. Not to mention, if it's replaced every three months, the darn thing won't get so clogged. Though, I'm sure I could do the replacement myself if someone would just give me instructions and supplies. And that would save everyone, including the insurance company, money....
But I'm happy it's going to be replaced every three months. And to think, the old GI doctor just told me the tube should last "until it needs replacing" so we always ended up replacing it in an emergency situation.
This is Bob's 4th tube. The first tube was surgically implanted and after about nine months, it just exploded one day, split right down the side. Kaboom! Scared the crap out of me when that happened. And had to make an emergency run to the doctor's office. The 2nd tube was a balloon device and the darn thing deflated and just fell out after about 5 months. It fell out during the middle of the night and I found it in the morning, with a big mess on my hands, because the feeding pump was still going and the bed sheets were getting fed instead of Bob... when I called the GI doctor's office, I was told to bring him in at 1:00 p.m. but by that time, the hole in Bob's belly had closed and they had to take him to surgery to punch a new hole in....
The last tube, another surgically implanted one, was in there for nine months.... I wanted it replaced before KABOOM, or worse....
What a difference a doctor makes. Replacing it every 3 months makes some darn sense.
 |
| Lovenox |
The last GI doctor also just yanked out Bob's first surgically implanted tube, without taking him off warfarin. He also did the second surgical procedure while Bob was on warfarin. This new doctor said that doing it that way was "too risky"and Bob could have hemorrhaged.
So, to prepare for this procedure, I had to take Bob off the warfarin starting on the Saturday before, then starting on Monday, I had to inject Bob each morning with Lovenox, a fast-acting heparin blood thinner. On the day of the procedure, I was not to inject the Lovenox until after the procedure was performed. This way, Bob was only off the blood thinner for a "small window" of time.
Now, I've never injected anybody with anything before--so this had me a bit freaked out. The doctor said he could send a home health nurse over to do the injections, but I declined that, because the injection only lasts 24 hours and has to be given at the same time daily and I did not want to sit around worrying if this nurse would show up on time every day or even show up at all. I'd rather have the whole thing under my control, so I know it's getting done right.
Anyway, the GI doctor's nurse told me she would send me directions, but unfortunately when they came it was only directions for when to start the warfarin etc. No directions on how to administer the injection. Then the pharmacy sent the lovenox and the only directions it had were "inject into the skin" and "see patient insert for further directions" however there was no patient insert... So I ended up downloading the patient insert from the internet.... and it didn't look too hard. I told myself, I could do it as long as I didn't freak out and remained calm.
The first morning of the injection, unfortunately, was total chaos. Starting with my morning bath, when I stepped into the tub only to find that I was--- GA! sharing a bath with a lizard! Whom I had to catch/rescue and release outside in the garden. Then, Bob was totally constipated and I had to ultimately get out the latex gloves and baby oil and go up there and "digitally stimulate/remove" a bowel movement, which is truly as gross as it sounds. Then the pharmacy arrived with a delivery which was all screwed up. Then one of the cats threw up all over my desk. And when I finally went to give that first injection, I was so frazzled I couldn't get the darn cap off the needle. It was like the darn thing was super glued on there.
And all this happened before we had to rush to catch the 10:15 a.m. transport for a doctor's appointment! So much for remaining calm...
But I managed. And I got through. And Bob's still alive, so I must've done it right.
This new tube is a love/hate relationship for me. I love it, because it's new and clean and boy, oh boy, does it flow. Not like the old one which ran like a clogged drain. But I hate it, because it's clunky and too short--I'm breaking my back leaning over Bob to do his feedings/medications. I already called to ask for a tubing extension but they didn't have any for Bob's brand of tube and told me "to go out and buy it" myself.
Jeepers.
I tell you, the medical community just sometimes baffles me....
Thursday, May 9, 2013
Saturday, May 4, 2013
The Serial Killer & The Exploding Catheter
Lately, I've been in a bit of a slump. A sort of caregiver's-burnout-don't-feel-like-doing-anything-more-than-I-have-to slump. This because Bob has been in an even worst slump. Ever since he quit PT, all he wants to do is lie around with his sore foot propped on a pillow and do nothing except shove hand towels up his butt....
I kid you not.
This is not because of any physical problem down there. No, this is because he is not moving around, not doing anything, and as he is paralyzed, he is always in the same position, flat on his butt and hence, he is perspiring down there. Profusely.
And I've got a truckload of hand towels to wash daily. And he still runs out of them. I hate to say, it's driving me nuts.
That being said, I've not been doing much this past week except fetching hand towels, and washing hand towels, and drying hand towels and folding hand towels.
That, and sort of taking a break from it all. I figure, I deserve a break, now and then. Right? And next week is going to be a busy one with three doctor's appointments and finally, a feeding tube replacement!
So, the other day, I was "taking a break" and we spent a quiet afternoon watching a movie. It was one of those the-nice-guy-next-door-turns-out-to-be-a-serial-killer movies. We were just at the climax of the movie, you know the part where the cute, but dimwitted, young heroine is standing in the serial killer's kitchen when she comes across a wallet containing the driver's license of a missing woman and it dawns on her that this nice guy, whose kitchen she is standing in, is in fact a serial killer. Just then, the killer is coming upstairs from the basement. With each step he takes, the basement stairs are creaking: creak creak creak... and you are gripping the edge of your seat and thinking run, you stupid bimbo, run! Just then, at that very moment, there is a loud, and I mean, really loud explosive SQUEEAK!
I tell you, I shot up from my seat so fast, I nearly hit the roof. Because that SQUEEAK was not in the movie but in our house! And I thought, lord almighty, there is some kind of giant rodent or squirrel or other wild beast in the house.
Then, I looked over at Bob and to my horror saw a fountain of pee shooting from the crotch from his pants. Oh shit! And I mean this thing was shooting, straight up in the air. A long arcing stream of piss flying straight up into the air. I tell you, I just stood there mesmerized for a moment. Amazed. I'd never seen anything like it.
Then, I dash to the kitchen to grab some hand towels, and, of course, there aren't any towels left because Bob has shoved them all up his ass. So I grab some dish towels instead and dash back to Bob and throw them on top of his crotch in an attempt to stamp out that fountain of piss. And really, I am totally baffled because this has never happened before. And Bob has his condom catheter on so why in the world is piss flying into the air. Unless his leg bag has sprung a leak. Finally, I think I've got the fountain of piss under control and I remove the towels and then attempt to pull Bob's pants down to take a look at the catheter bag, and in the process of removing his pants I somehow manage to reactivate the fountain and it shoots straight at me.
Now I am drenched with pee and, of course, Bob is drenched with pee. As is the bed. And the towels which I have quickly thrown on top of him to stop this new assault. But now I can see that the catheter bag attached to Bob's leg is empty. Which is weird. So the pee must coming out of the top of the condom catheter. I can also see that there is more urine trapped between the condom catheter and the catheter bag and it's not going down, for some reason, so that's why it's going up, instead. So I, first, detach the leg bag straps. Then I try to sort of shake the urine down into the bag. Nothing happens. Then I try to squeeze the urine down into the bag. Which truly backfires on me. And another explosion of pee squirts out the top of the catheter. Finally, I decide I must take the whole contraption off, because something is definitely malfunctioning.
Once I have the condom catheter off, I have to clean up Bob and clean up the bed, then clean up me... Then I take the condom catheter to the kitchen to get a good look at it. But I don't see any apparent problem. So I attach the still sticky condom to the kitchen faucet. I turn on the faucet and the same time taking a step backward, just in case. But the water goes down into the bag....
Evidently, there was a kink somewhere in the tube. And the urine backed up to the point it exploded out the top with a loud SQUEEAK. At least that's what I think happened.
All I can say is, glad this didn't happen out in public.
And so much for my well deserved break...
I kid you not.
This is not because of any physical problem down there. No, this is because he is not moving around, not doing anything, and as he is paralyzed, he is always in the same position, flat on his butt and hence, he is perspiring down there. Profusely.
And I've got a truckload of hand towels to wash daily. And he still runs out of them. I hate to say, it's driving me nuts.
That being said, I've not been doing much this past week except fetching hand towels, and washing hand towels, and drying hand towels and folding hand towels.
That, and sort of taking a break from it all. I figure, I deserve a break, now and then. Right? And next week is going to be a busy one with three doctor's appointments and finally, a feeding tube replacement!
So, the other day, I was "taking a break" and we spent a quiet afternoon watching a movie. It was one of those the-nice-guy-next-door-turns-out-to-be-a-serial-killer movies. We were just at the climax of the movie, you know the part where the cute, but dimwitted, young heroine is standing in the serial killer's kitchen when she comes across a wallet containing the driver's license of a missing woman and it dawns on her that this nice guy, whose kitchen she is standing in, is in fact a serial killer. Just then, the killer is coming upstairs from the basement. With each step he takes, the basement stairs are creaking: creak creak creak... and you are gripping the edge of your seat and thinking run, you stupid bimbo, run! Just then, at that very moment, there is a loud, and I mean, really loud explosive SQUEEAK!
I tell you, I shot up from my seat so fast, I nearly hit the roof. Because that SQUEEAK was not in the movie but in our house! And I thought, lord almighty, there is some kind of giant rodent or squirrel or other wild beast in the house.
Then, I looked over at Bob and to my horror saw a fountain of pee shooting from the crotch from his pants. Oh shit! And I mean this thing was shooting, straight up in the air. A long arcing stream of piss flying straight up into the air. I tell you, I just stood there mesmerized for a moment. Amazed. I'd never seen anything like it.
Then, I dash to the kitchen to grab some hand towels, and, of course, there aren't any towels left because Bob has shoved them all up his ass. So I grab some dish towels instead and dash back to Bob and throw them on top of his crotch in an attempt to stamp out that fountain of piss. And really, I am totally baffled because this has never happened before. And Bob has his condom catheter on so why in the world is piss flying into the air. Unless his leg bag has sprung a leak. Finally, I think I've got the fountain of piss under control and I remove the towels and then attempt to pull Bob's pants down to take a look at the catheter bag, and in the process of removing his pants I somehow manage to reactivate the fountain and it shoots straight at me.
Now I am drenched with pee and, of course, Bob is drenched with pee. As is the bed. And the towels which I have quickly thrown on top of him to stop this new assault. But now I can see that the catheter bag attached to Bob's leg is empty. Which is weird. So the pee must coming out of the top of the condom catheter. I can also see that there is more urine trapped between the condom catheter and the catheter bag and it's not going down, for some reason, so that's why it's going up, instead. So I, first, detach the leg bag straps. Then I try to sort of shake the urine down into the bag. Nothing happens. Then I try to squeeze the urine down into the bag. Which truly backfires on me. And another explosion of pee squirts out the top of the catheter. Finally, I decide I must take the whole contraption off, because something is definitely malfunctioning.
Once I have the condom catheter off, I have to clean up Bob and clean up the bed, then clean up me... Then I take the condom catheter to the kitchen to get a good look at it. But I don't see any apparent problem. So I attach the still sticky condom to the kitchen faucet. I turn on the faucet and the same time taking a step backward, just in case. But the water goes down into the bag....
Evidently, there was a kink somewhere in the tube. And the urine backed up to the point it exploded out the top with a loud SQUEEAK. At least that's what I think happened.
All I can say is, glad this didn't happen out in public.
And so much for my well deserved break...
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