Rehab: The Good, The Bad & The Ugly

Yesterday marked the end of five weeks of rehab. Geez, doesn't seem that long. Next week is Week #6 and time for another evaluation, this one for the insurance company and you'd think it would be no-brainer to approve another six weeks for Bob, but....

I do not trust insurance companies. Especially since it was the insurance company that kicked him out of Acute Inpatient Rehab after only four weeks and the same insurance company who at first didn't want to send him to Rehab at all, their excuse being that "Robert had no quality of life to return to" because he was disabled before the stroke. We had to go all the way up to the medical director at the insurance company to get him approved for Rehab. So, it will be another week on pins and needles waiting for a decision. The meeting with the case manager is on Wednesday, so we'll find out then.

The good news is that Bob is doing very well in Physical Therapy. He has been taking bigger and faster steps on the parallel bars and yesterday was able to stand and let go of the bars completely. (Look, Mom, no hands!)

The bad news is that I'm not seeing much progress in Occupational Therapy and I'm not so sure about Speech/Swallow either. Part of the problem with OT is that Bob doesn't enjoy it, at all. The Occupational Therapist started mirror box therapy, but Bob just isn't into it. When she asked him what was wrong, he said, "It's stupid."

OK, so "it's stupid" is actually a good, clear, meaningful sentence. So, maybe he is progressing in Speech a bit....

The ugly part? Yesterday we spent about 25 minutes of a 45 minute therapy session in the bathroom. aaaaaaaaargh..... I'm afraid they wont want to continue therapy if he spends all of his time in the can...

On a lighter note, this morning Ripley spied a chicken in our backyard. Click on the photo below and zoom in between Ripley's ears! Now we live in the city, so where did this chicken come from???
Is this some kind of omen?

Let's hope it's not The Chicken of Doom.....

Ripley Spies a Chicken

Adventures in Pee Pee Land

First, let me say, if you are a nurse reading this, please take heed. There are more than a few nurses I'd like to strangle about now and for this reason:  Please, nurses, do not baby-talk to 52 year old stroke patients, especially aphasia patients as aphasics are great mimickers and now I have a 52 year old husband who doesn't have to "go to the bathroom" but instead has to "go pee pee" or "poopie in the pants" which are phrases that I heard the nurses use over and over at the hospital.  This is quite embarrassing, especially when he announces it out loud for everyone around to hear. Yikes.

Toilet Trees

Well, I got that off my chest. Thought this cartoon of Bob's would be a fitting illustration to this post!

Lately, it seems we spend all of our time in the toilet. I'm becoming quite the connoisseur of the public restroom. "Handicap accessible", my foot. Ever try to get a wheelchair with a 6'3" immobile guy and yourself into one of these stalls??? It ain't easy. And doors. What were they thinking? Seems all restroom doors are off to one side, so that when you pull the wheelchair in, with your butt against the door to hold it open, you always end up at angle ramming the wheelchair or yourself into the wall... And once you get in, just try getting back out. I must be quite a sight---the door swings open and out comes my butt holding the door open, me, bent over pulling his wheelchair out of the restroom by the footrests! And don't even mention those motion-detector paper towel holders which I keep backing into---whirr! 

Problem is that Bob always has "the urge" lately. And I mean, always. About every half an hour, he has an urge to go. I don't know if it's because he still has that bladder infection, two weeks of antibiotics should have cleared it up--right? Or does he have a "neurogenic" bladder as the urologist suspects and lord, if so, what can be done about it? Or is he perhaps just fixated on his nether regions at the moment? Because about 80% of the time, it's just an urge, and once we get in the bathroom and everything ready to roll (no small feat): nothing happens. So, we wait. Clock ticking away. Still nothing happens. If I try to hurry him along, or try to convince him that he just went so shouldn't have to go again, he gets quite upset. It's been frustrating for the both of us, not to mention a waste of time, some of which is better spent at the parallel bars in the therapy room instead of in the bathroom. 

Then there was the trip to his pain doc last week. On the way up, he had the urge so we detoured to the men's room and I couldn't get him into the handicap stall because the corner was too sharp, so we did it in front of the sinks. Oh well. And it was successful, yippee! So I wheel him to the doctor's office, through another non-handicap accessible door and run into the coffee table full of two-year old magazines. And finally, we are there, and the nurse informs me that they need a urine sample. AAARGH! I try to explain that Bob does not have much control over that, he's in diapers, etc., but they insist because it's federal law and they need to periodically drug screen the patients. So, I have to wheel him down this narrow corridor through a maze of water coolers and boxes and assorted computer stands and other junk and take a sharp corner into a crowded bathroom and stand there with a cup while the nurse watches (so that we don't cheat, I guess) but of course he can't do a thing.....  Twenty minutes later, they let us go. So we head to his therapy appointment (late) and he has the urge again, another detour and oh my, I am getting sick of restrooms.....

Even at home, he is constantly reaching for the urinal, then holding it there for what seems like hours. I tell him that it's a urinal, not a coat for his penis. Yes, I use that word. Better than "pee pee" which is what he insists it is---thanks again, nurses! 

He has another appointment with the urologist on Monday. I pray there is something that can be done to rectify this problem. Because I am at my wit's end and think I might explode if I spend one more hour crammed in a public toilet holding a plastic urinal between his legs and praying to the toilet gods for that golden stream.

Well, at least I can joke about it. Somedays, laughing is all you can do.

The Cartoonist He Was

The Power of Positive Sinking

This is one of Bob's cartoons, done in pen and ink then scanned on the computer to color. Enjoy.

Marking the Holidays Post-Stroke

Today is Easter and I guess, this puts me in a reflective mood thinking of all the holidays that have passed since Bob's stroke. I didn't realize when I posted last, that the day Bob started walking was the exact six month anniversary of his stroke. Strange, that.

Bob had surgery on his carotid artery on October 20 and a stroke sometime that night or early the next morning on the 21st. No one knows for sure. I had talked to him on the phone at 9:00 p.m. on the 20th and he was fine, but when I arrived at ICU at 9:00 a.m. the next morning, I found him stroked out in bed. (Yes, in ICU, and no one seemed to notice this except me. Still can't believe it.) But anyway, I was thinking about the holidays...

Drum roll please........ He is Walking!!!!

I am happy to report good news at The Pink House this week. First, the case management meeting on Wednesday went very well. All three therapists recommended that Bob's therapy continue. (Yesss!!!) Bob told the case manager, "I am strong!" He did this while raising his left arm like a muscle man. I was very proud of him (such a change from his "wilted flower" routine a few weeks back). Then, on Thursday, he began to walk. A miracle, if I don't say so myself.

Prior to Thursday, and after that first step he took about a week ago, the therapists had been doing an exercise on the parallel bars where Bob would step forward with his left foot, then the therapist (sitting on a wheeled stool in front of him) would grab his right foot and move it forward. In this way, they hobbled the length of the bars to the end where an assistant (sometimes, yours truly) would scoot the wheelchair behind him and he could sit down (more of a plop down, actually) and rest. After a few minutes rest, the wheelchair would be rolled backward to the beginning of the bars and the exercise would start over. They would do this anywhere from three to five times, depending on Bob's stamina. But on Thursday, as I sat watching from a distance, I heard the therapist shriek: "Oh My God!" Because when she reached for Bob's right foot, he was one step ahead of her and had moved it forward on his own. After that, with much coaxing ("Do it again! Come on!") Bob was able to go the whole length on the bars moving both feet, with the therapist only catching his knee to "lock it" in place. His right knee is still very weak and tends to buckle when he puts weight on it. And, of course, he's holding onto the bar for dear life with his left hand and his gait is horribly wobbly, but..... whoo hoo! He has definitely "turned a corner" here, as the therapist said. News of this travelled like wild fire around the therapy room and several of the therapists came over to congratulate him afterward. You should have seen him, bursting with pride.

And boy, I'd like to see Dr. C., the surgeon who performed the surgery that caused Bob's stroke. I last time I saw Dr. C. was in the corridor of the hospital in late December and, at that time, he told me in no uncertain terms that I shouldn't get my hopes up about Rehab because "Robert will never walk again, not after that massive stroke." Ha ha! If only that doctor could see him now!

Other news and a special thank you to Jenn for sending the book The Brain That Changes Itself by Norman Doidge, M.D. I just finished reading it and found the chapter on "mirror box therapy" quite interesting. So, I asked Bob's Occupational Therapist if she knew anything about this type of therapy which consists of using mirrors to trick the brain into thinking a paralyzed limb is moving and hence starts to move it. She had heard of the therapy, but didn't know much about it and asked if I would bring the book in for her to read. Well, I brought the book in on Thursday, but when we came in, I saw that she already had a mirror box on her table (borrowed from another in-hospital therapist) and, I guess, my questions had sparked her interest and she had asked around and had looked it up on the internet the night before. She had already tried mirror therapy with another patient that very morning (that patient also had suffered a stroke, but has some movement in his arm) and had seen some amazing results. At Bob's therapy, she put his arm in the box and though we didn't see any amazing results, you could tell that he was quite interested in the therapy: he kept waving his left hand at the mirror as if saying hello. Later, when she was massaging his right arm, she thought she detected a slight movement just above his elbow but wasn't sure. She was pretty excited and has taken the book home to read this weekend and plans on constructing her own mirror box and a second one for me to take home. So, Jenn, thank you! Your gift has already helped another patient and hopefully will help Bob as well.

Oh, and two more little milestones we have reached this past week: first, Bob has been finally able to wear shoes for the first time since his stroke. He couldn't wear them before because of pressure sores on his heels from being bedridden, but finally the sores have cleared up. I think wearing "real shoes" instead of slippers helps him to feel more normal and for some reason, seeing him in shoes just thrills me. And second, we've graduated to "pull up" Depends underwear instead of the diapers with tabs on the sides, as he is finally able to arch his back.

So, it's been a good week here at The Pink House and I do pray it continues.

The Artist He Was

Just wanted to share one of Bob's drawings.
This was done when we lived in Savannah, Georgia.
Pen and Ink Pointilism
(click to enlarge)

Little Improvements--Will It Be Enough?

I am all a jitter. This will be a telling week: Rehab is to reassess Bob to see if he can continue therapy. We have a meeting with the case manager on Weds and I pray he makes the cut.

Whatever they say, I am seeing improvements. Little improvements, but improvements no less. They are:

Bob on the NuStep

Physical Therapy: He took a step. A little step. But a step. (See post below). Also, his resistance has nearly doubled on the Nu Step machine. (see photo left). He even wanted his right hand strapped to the machine. Sorry the photo is a blurr, but he was moving so fast! (ha ha) Still, he pales by comparison with the other patients on the nearby machine.

Occupational Therapy: Feeling in his right shoulder. He indicated this by touching his shoulder and saying "warms", then touching his arm below the elbow saying "cold". This did thrill the Occupational Therapist, who then told me that sometimes the arm comes back in increments of about 1/2 inch a month starting at the shoulder. And this weekend, when we did his "shrugging" exercises, I believe I detected a slight twinge in the muscle of his shoulder near the neck. Or was that my imagination?

Speech Therapy: He's speaking more sentences. Short sentences, but clear sentences, and this is an improvement over just saying one word or a bunch of garbled junk. At therapy, when he doesn't understand a question or doesn't know the answer, he used to say "huh?", but this past week, he was saying, very clearly, "Come again?" and "I don't know." or once, "I have no clue."  This morning, he said to me, "Turn the radio down." Still, he has a lot of problems identifying objects and finding the right word. On Sunday, he wanted water, but kept asking for "socks". Also, his memory is still spotty. And don't even ask about the reading comprehension....

Swallow Therapy: He swallowed over 10 teaspoons of Italian ice on Wednesday. An improvement over his former record of six. The therapist said his swallow reflex "looks" better, but won't know for sure until another swallow video is done. But on Thursday, she tried apple sauce and he nearly choked.

So this is it. D-Day on Wednesday. And I'm scared to death that this is not enough improvement to keep him in therapy. Because without therapy, what the heck will we do?

Bob's First Step!

Great Day at Rehab Yesterday!
Bob took his first step since his stroke!
(click to enlarge)

OK, it was only one little step. With the left (good side) foot. With much support from the therapist. But, it's a step in the right direction!!

Mouth Pain--Still a Mystery

I am baffled. Bob's mouth pain has pretty much disappeared. I guess that's good news, but what happened? Over the past two weeks, he has only asked for the Lidocaine ointment once and then complained that the ointment "tingles". He still opens his mouth and indicates his upper and lower gums with his finger (which he used to do) but now instead of saying "hurts" he says "gone". Not "gone" in a good way, as in the mouth pain is gone, but in a bad way, as if something in his mouth is gone. I'm thinking he means his dentures, which no longer fit.

In the hospital, they had tried to put his dentures in his mouth several times after his stroke. I remember one time vividly, because Bob looked horrible, it seemed like someone had stuck huge horse teeth in his mouth and he was terribly in pain, and when they took them out, his gums began to bleed. He had lost a lot of weight, going in for surgery he weighed 185 and coming home, he was 152. Since he's been home, he's been steadily gaining weight, so we tried the dentures again, but they are still too big. He can't even get them into his mouth.

I took him to a dentist yesterday, hoping for a solution. Do the dentures need adjusting? Or does he need a new set? I was told that he probably needs new dentures but in order to get these, they have to take a special x-ray in a panoramic machine and in order to do that, he needs to be able to stand up. They said they can't do it in a wheelchair. This, too, baffles me. I admit I didn't see what this machine looks like, but... what can I say? Here's more motivation for Bob to get up and stand.

And back to the mouth pain. What caused it? Why did it disappear? Then, I wonder, did his mouth really "hurt" or all this while was it just that Bob was frustrated without his dentures and didn't know the proper word to describe what he was going through? And I think of all the chasing around we did, going to different doctors, running all sorts of tests.... yikes. Or was it a vitamin deficiency, like one doctor suggested, and now that I have him on a vitamin regimen, it's better?

This, I think, is one of the hardest things. Not knowing what goes on his mind. Misunderstanding what he's trying to tell me because he can't find the right words. Even now, I'm not sure if it's the dentures he's talking about being "gone" or something else--like his ability to speak and swallow...

Urologist Thought That Bob Was A Goner

I took Bob to his Urologist today and found out he has some type of bladder infection. This might explain a lot of things: the constant accidents, the "it's wet", etc. Got a script for antibiotics. An interesting side note, though, his urologist is an "old" doctor, meaning Bob had seen him before the stroke. Usually, when we visit an "old" doctor, I have to spend a lot of time explaining what happened: i.e. the TIA's, the first surgery, the stroke, the second surgery, what happened since and on and on. So, I expected to spend a good amount of time explaining things to this doctor, but when I started on "the story", this doctor stopped me and said, "Yes, I know."

He said, "I heard about it, and I went to the hospital and I visit him in ICU." I kind of looked at him, because I didn't see him visit and no one told me that he had visited. (But I guess he came late or early, when I wasn't there. I was there every day from about 8:00 a.m. and about 8-9:00 p.m.)  He turned to Bob then and said, "I came to see you, amigo, but you were out like a light!" He laughed. (He must have visited when Bob was still in a semi-coma/critical condition, that first 30 days or so.) Then, he looked at me and said, "I shouldn't say this, but those doctors there didn't have any hope, especially that neurologist," he shook his head, "I forget his name, some Italian doctor? That neurologist, especially him but all the doctors there told me that Robert was a goner. He was good as dead. Said he'd never survive this stroke because it was massive. It was just a matter of time. I felt terrible, you know? But now I am so happy to see you here! So, let's see if we can fix this problem. OK?"

OK, I needed that. A sort of slap in the face. Time again to count blessings and remember how far we've come. Though not a totally pleasant experience, the doc "irrigated" Bob's bladder, running a tube down his penis and suctioning junk out, then running a scope down it to "look around", yikes. I'm sure it hurt like hell and it was very messy.... and took so much time, we missed Rehab today.  But, I pray the antibiotics work and this urinal/urination i.e. wetting the bed problem comes to an end.

Up & Down, Up & Down again...

Our New Ride
(click to enlarge)

I tell you, I feel like we've both been riding a roller coaster lately. I took this picture of Bob arriving at Rehab on the wheelchair transport the day that Bob did his "wilted flower" imitation at the standing machine. After that awful day, I sat down with Bob and gave him a "pep talk", well actually two of them. One that night and another the next morning before Rehab. I went through the stages of stroke with him once again and tried to reassure him that all was not "gone" but he was progressing through the stages and he would get better if only he kept trying. I also told him I believed he could do it, and that I had all the faith in the world in him. And that we would do it, together.

All righty. He was skeptical, I could tell. So, I resorted to the next best thing: threats. I hate to admit it. But I told him that if he did not get better, I just could not keep doing this forever. If he got kicked out of Rehab for "not progressing", he'd never get better and I'd be too worn out to take care of him anymore and I'd have to send him back north, to his mother.


Ooooh. That got his attention. What can I say?

So, we went to Rehab the next day and wouldn't you know, he was a real trooper! He stood at the parallel bars and followed directions and managed to stand three separate times for about 2 minutes each without a single complaint. Then, the therapist had him practice just getting up out of the wheelchair, standing, then sitting back down. Next, they put him on a machine called the "Nu Step" which has handles like a rowing machine and peddles like a cycling machine, so that when you pull at the "oars" the legs start peddling. He spent a good 10 minutes on his machine and even put his right hand on the right oar and tried to keep it there! The therapist ran to his aid then, and strapped his right hand on the oar so it wouldn't fall off. The therapists seemed quite pleased and I was proud as a peacock, to say the least.

Then came Friday, and I thought, good--we have three whole days to ourselves. He began wetting himself and the bed again--or not. I mean, he says to me (a new phrase) "it's wet". He'll stop in the middle of doing our exercises and insist "it's wet" and I'll check his diaper and it's bone dry. I tell him this, but he insists "it's wet" and gets quite upset about it until I relent and change his diaper. He did this to me eight times yesterday and four more times during the night and probably four of those times he really was wet and the other times it's just his imagination.... I don't know what to think. It's almost like he's fixated on "it's wet" and it's driving me mad. Not to mention, I'm running out of diapers. So, I get Chris (our neighbor) to come and sit with him so that I can run to the store and buy some more Depends, but they don't have his usual kind in stock and I buy something different which was on sale, and of course, he hates the new diapers, so now it's constant complaining about that and he hates the spill proof urinal which is "horrible" so I give him the old urinal back and he dumps it all over. He's ornery and cranky and everything I do sets him off. And I am going nuts.

Tomorrow we have Rehab again and I pray he does as well as he did on Thursday. I think right now, I'm the one in need of a "pep talk"....

Rehab says, "Shape Up or Ship Out"

Yesterday at Rehab, Bob wilted in the standing machine. And I do mean "wilted" like a drooping flower on a hot day. He slumped over the little table in front of the machine, laid his head on the table top, and he began crying and saying one word over and over: "Gone, gone, gone". The therapist tried to cajole him into standing upright to no avail, finally, took him out of the machine and tried instead to get him standing on the parallel bars. At the bars, he kept falling backward into the wheelchair, kept crying, kept saying that word: "gone, gone, gone."

I went to him then and tried to coax him into cooperating, but he kept saying "gone" and tears were flowing down his cheeks and I asked him what was gone? And he indicated his leg, his arm, his mouth and his brain by pointing to these areas of his body. He was crumbling in front of us. Falling apart. And I am crumbling, too.

Afterward, we had a meeting with all three therapists and all three of them told me that Bob was "just not progressing" and they saw "no need to continue" his therapy. Somehow, I managed to get them to agree to two more weeks of therapy, however, if he doesn't improve, doesn't "progress", well, then rehab is over for him.

Brunnstrom's Stages of Stroke & Other Things the Doctors Don't Tell You

I recently picked up a book called Stronger After Stroke by Peter Levine. The author is a researcher in the field of "neuromotor recovery" and I am amazed at the stuff in this book that was never explained to me by any of the doctors that treated Bob. One of those things is Brunnstrom's Six Stages of stroke recovery and just to know this and know that every stroke survivor goes through these stages is so enlightening that I thought I'd share it with you. I mean, this something everyone should know! Here they are:

Stage 1: Immediately after a stroke. The whole "bad" side of the body is limp. Everything including torso, face, mouth and tongue, arm and leg are limp.

Stage 2: Spasticity (muscle tightness) creeps in. This is a good thing! (I was under the impression it was bad, at least that's how the doctors acted...) Spasticity means that "messages" are getting through to the affected side from the nervous system. Involuntary movements are seen in this stage (one doctor in the ICU told me that Bob's involuntary movements were "posturing" and it meant he was close to death!!!!)

Stage 3: Spasticity gets stronger, even severe, however, the patient begins to control his movements. Movements in this stage are "synergistic movements" meaning that if the person attempts to move his foot, the whole leg moves with it.

Stage 4: Spasticity begins to decline. Movements outside of synergy begin to appear.

Stage 5: Spasticity continues to decline. Synergy continues to decline. Patient is moving better.

Stage 6: Individual joint movements become possible and coordination approaches normal. Total recovery is possible in this stage.

Well, how about them apples? It's so good to know what Bob is going through is "normal". Now I see, his right leg is in Stage 4, though his right arm is still at Stage 2. The book also goes on to say that movements begin at "the top" (example: at the shoulder and move down the arm) and that typically the leg improves before the arm and the hand is always the last thing to improve. Well! Why didn't anyone tell me this stuff? And it's not for the lack of me asking questions. Believe me, I've been peppering everyone with questions and the only answers I'm getting are "everyone is different" or "it's going to take a long time" or (one doctor) "he'll never walk again, don't get your hopes up".

Just knowing about these stages has brought me a tremendous amount of relief: the knowing that Bob's recovery process is "normal". That every stroke survivor goes through these exact stages, in order. (Of course, not everyone makes it all the way to Stage 6, that's where hard work and prayer come in to play.)  I think this is something everyone should know and I wish I had known it five months ago. I hope by sharing it here, it might help someone someday.

Outpatient Stroke Rehab -- First Week

 

Bob at the Standing Machine
(click to enlarge)

Well, we completed the first full week of Outpatient Rehab which has left us both exhausted. The Wheelchair Transport helps (Thanks again, Dad & Mom) but it is still a lot of hard work.

In Physical Therapy, they are working on strengthening his legs. This is the first step toward walking. Bob has been bedridden so long (five months) that even his "good" leg is weak. Above is a picture of a Bob at the "Standing Machine". You can tell, he's not a happy camper... I'm sure it hurts. (Click on the photo to enlarge it!) But I can't begin to describe how happy it makes me to see him standing upright. The device has a hydraulic strap in back that pulls him up and holds him in place. He spends about half of the therapy session in this device and the other half on the parallel bars with a therapist holding onto him or doing mat exercises.

Occupational Therapy is conducting "e-stim" (electrical stimulation) on his right arm. They attach electrodes to his shoulder in an attempt to get the muscles to move. They tell me that the shoulder is the first part of the arm to come back. They are trying to induce a "shrug" movement in his shoulder. No luck yet, but it's only been a week. The rest of OT is spent with range of motion exercises and games to try to get Bob to focus on his right (affected) side. Bob thinks the games are stupid and spends a lot of time rolling his eyes, but the therapists tell me that the idea here is to retrain the brain to recognize the right side of his body. The games include tossing bean bags with his left hand across his right into a bucket or reaching for things held far over to the right.

Bob enjoys Speech and Swallow Therapy the best. The Speech Therapist is great. They have been doing a lot of evaluation on his abilities to try to pinpoint his deficits. This is something the other therapists never did. Turns out that he does have some reading abilities if the words are accompanied by a picture. He still struggles with naming objects but does much better if the object is accompanied by a written word. He's better with numbers than letters. After just one week, his speaking is a little clearer. Swallow Therapy is continuing with "e-stim" on his throat. He struggles more with swallowing than he used to, i.e. a lot of choking and coughing, although I'm told this is a good sign as it indicates his sensations are coming back--before things were just sliding down the "wrong hole" and he didn't even notice.

As for the other thing, that dreaded urinal, I'm quite happy to report we had a dry night last night!!!! YES! I played around with the new urinal, filled it water and held it in different positions, and I think the trouble is backflow--because he was holding it wrong. I mean, you can't pee uphill! I got him to put the thing between his legs and steady it that way. Seemed to work. Pray it continues.

Finally, today we have "off" and can relax. I'm letting him sleep in a bit. We both need a break.