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.....

Dreams & Rude Awakenings

Last night, I heard a noise from the front porch and I got up and went into the living room, that's when I saw that Bob's hospital bed was empty.

Empty.

Quickly, I looked around and then I saw him. At the front door. Standing there with his back to me. I couldn't believe my eyes, I mean, oh my god, he was standing up! On his own! This is nothing short of a miracle.

Breathlessly, I ran toward him and that's when----I woke up.*

I woke up to shrill beep-beep-beep of the feeding pump alarm. I shot out of bed, because that alarm can mean only one thing in the middle of the night: Bob's tube is clogged. But the alarm was just signaling that the feed bag was empty. So I shut it off and, confused and jangled, I crawled back into bed to gather my wits. And then I noticed the time. Crap. It was already 7:30 a.m.

Bob started calling to me from his bed. His pad was wet and he wanted it changed. So I dragged myself up again and changed his pad, then dumped his night urinal and finally trudged myself into the bathroom. The cats trailed after me like two homeless panhandlers. One by one, they leapt into the clawfoot bathtub and sat there, side by side, staring at me with bright blue eyes. Which could only mean one thing. Their food bowls were empty. And Boomer was right behind them, with that whistling whine in his nose, because, you know Mom, we are late for our morning walk. Then I heard the garbage truck rumbling down the street and oh shit, I forgot to take the garbage out last night and when your spouse wears Depends, this is an important thing to do because one doesn't want that garbage sitting around too long. So I flew out of the bathroom, out the house and into the yard and grabbed the garbage and pulled it to the curb, just in the nick of time, and still wearing my pajamas went back inside.

Where Bob was calling for me because he wanted the other urinal. He has two urinals, the one for night is the spillproof urinal, which holds up to a liter of urine so that he doesn't have to wake me to empty it. And I tell him that I still have to walk the dog and I'll give him the other urinal when I return. And I go back into the bathroom to dress, then feed the cats and Boomer is stuck to me like velcro, because, you know, he really really has to go outside, but I still have to disconnect the feeding pump and flush Bob's tube with water and Bob is still fussing about the urinal and I finally grab the damn daytime urinal and toss it to him as I head for the leash. The urinal hits Bob on the leg and he screams. I mean, he really screams bloody murder, as if I had shot him instead of tossed a plastic urinal. I tell him not to be ridiculous, it's only a plastic urinal and I didn't mean to hurt him, and it couldn't hurt that bad but he starts crying and the dog is still whining and goodness, I just have to get out of the house.

Thus begins another day....

As I was walking the dog, I thought about that dream. Bob standing at the door. And I realize, you know, I can't remember the last time I've had a dream. It seems as if that was the first dream I've had in about a year. It's as if I don't dream anymore. Or maybe I just don't remember my dreams. Which is weird.

But, anyway, there are two good things to report from the Pink House today and one of them is that I have been getting some sleep. I think an entire seven days have passed where Bob has not woke me up in the middle of the night to change his bed. And I am quite grateful for that.

And yesterday, another new record. Thirteen times walking the rail. It looks like Bob's on a roll!


*Yeah, I know, this is a really lame junior high school literary device, but heck, this isn't fiction.

And He Laughed

Back in June, when Bob had his Swallow Video Test, the Speech/Swallow Therapist showed me the rather grainy film and pointed to a spot in Bob's throat and said, "See that, right there? It's not moving. That's his epiglottis and it should be moving. But it's paralyzed. And that's the reason everything is going down the wrong pipe." And, of course, a discussion followed with me asking what one can do about this and she really having no clue. After that, the ST refused to give Bob anything to eat for swallow practice and sternly warned me not to give him anything at home or there would be dire results, possibly even death, then discharged him and well, you know that story.

Afterwards, I did two things. I researched "epiglottis" as I really didn't know what it was or what it did, and I took Bob to see his Ear, Nose, Throat doctor (aka Dr. Doom) for a second opinion. Dr. Doom concurred that the swallow test results were dismal and medically he could not advise me to let Bob eat anything for swallow practice because it was indeed dangerous, however, off the record, he said if he were me, he'd just "wing it", keep up the swallow practice at home and see what happens because the alternative is never being able to eat or drink and he thought, personally, it was worth the risk.  And that's what we've been doing with a cup of pudding or mashed potatoes every day since. Against all medical advice....

Now the epiglottis (and bear with me here) is a small, thin muscle in the vocal cords. It is sometimes described as being "leaflike" and it's big purpose is to protect the windpipe (trachea) when one is swallowing. It operates like a flap, if you will, covering the windpipe that so that food and liquids flow over it and into the esophagus and down into the stomach. When you are not swallowing, the epiglottis is open so that you can breathe. It has one other interesting feature. It is the epiglottis which makes you laugh.

You know that noise one makes when one laughs? That "ho ho ho, hee hee, ha ha" from the throat? That chuckling, chortling, giggling, cackling that you sometimes can't control no matter how hard you try or how inappropriate it is at the moment? That's the sound of your epiglottis doing a happy dance, flapping back and forth over your windpipe.

When I learned this odd little fact, I remembering thinking that if that's the case, then Bob would not be able to laugh because his epiglottis was paralyzed. At first, I thought this was rather absurd, because, of course, Bob laughs--doesn't he? I mean he laughs "with his eyes", he smiles and even says "ha ha!" and "hee hee!" but then, after thinking about it, I was unsure if he really could laugh--you know, chortle? chuckle? giggle? So I began to study him when he "laughed" and found it was true. Bob couldn't laugh. Which is really weird, when you think about it.

Yesterday, we played Scrabble. Bob had just finished drawing new tiles and he said, "Crap." I said, "What?" and he showed me his tiles which were pretty much all consonants, no vowels. And I said, "Well, you think that's bad, look at this," and I showed him my tiles which were O O O O E E I.

And he laughed.

I mean, he really laughed.

He chuckled. Giggled, even. Honest to God, I almost fell off my chair.

It was the first time I've heard him laugh this year.

And perhaps this means that our "dangerous" swallow practice is working.....? Oh my. It would certainly be nice to have "the last laugh" on this one.

Baby Steps

I know I haven't been blogging as often these past few weeks, but life has been rather frustrating, all around. More and more, the phone rings from creditors to the point where I cannot answer the phone without fear (the hospital, alone, wants $27,000+!) and Bob's bladder problems have come back with a vengeance and his progress all around seems so slow (if any, at all) that I have been feeling a bit overwhelmed by all it. It often feels like the proverbial clock ticking here (Bob's one year stroke anniversary is next month!) and I know, in my heart, it is not true but I keep hearing all those doctors who told me that "the first year makes the difference" and after that, he's pretty much doomed and wont progress any further.

I know that's not true. But one can't help worrying about it.

So there is a weight on my shoulders as I (as Bob's PT/OT/ST) bear much of the responsibility here. So I'm often worrying about what am I doing wrong? or what can I do differently with his therapy? and how can I jump-start, kick-start, beat-him-into-submission so that he will jump out of that bed and dance around the room?!

OK. I am exaggerating here. But you get the drift. These things weigh heavily on my mind. And then there's the PT at Rehab (the female one) who told me that Bob wouldn't be allowed back at Rehab until he can stand up and walk without having to hold onto the rail. Which brings two other things to mind, i.e.: if he can do that, what the heck does he need Rehab for? and How the hell are we going to achieve this, at home?

But I titled this post "Baby Steps" because he has taken some "baby steps" this past month and I wanted to outline them here (mostly to make me feel better!):

1. Leg Movement: He's moving his right leg from side-to-side much better, to the point where he can now adjust it when he's in bed without calling me for help.

2. Walking: He's back up to 9 trips daily on the hallway rail. That is his old "record" but he hasn't been able to do that since before "the fall in the hall".

3. Transferring: He is able to get from the bed to the wheelchair without the slide board. He just scoots over--still can't stand up, but he is using more muscles this way. Still needs the slide board to get back into bed because that's more of an uphill climb.

4. He's shaving himself! With an electric razor. This is the first time he has taken in interest in his looks, which I think is a very good sign and a move toward some independence. And boy, I had to push him to get him to do this the first time, but now he does it willingly and happily.

5. He's gained all his weight back (and then some!) His primary care doc just cut back his Jevity prescription so that means one less feeding I have to do per day. A relief. Plus Bob wants it cut back even further as he is worried about gaining weight--another good sign because, again, it means he cares about his appearance. Even though I tell him he's just gained a little "buddha belly" and I think it's cute.

6. His Scrabble game is improving. So that means his reading comprehension is improving. Just the other day, he began to pronounce the words out loud as he played them (even if the words themselves were wrong).  Example: he spelled out the word "fita" (which is not a word, at least in the "official Scrabble dictionary") but he pronounced the syllables perfectly and I think he was aiming for "feta" as in the cheese, so he was very close. And I'll take credit for this one. Scrabble Therapy was my idea all along.

7. I think possibly, just possibly, he is speaking a little better. Possibly. I will have to take a video of him and compare to be sure. But I think this just may be the case.....

Well, there. I do feel a bit better now.

Update: As of 4:30 p.m. this afternoon, Bob set a new record for walking the rail in the hall: 10 times! Whoo hoo!