Still No Luck With The Hemi-Walker

Hemi-Walker

Last year, about this time, Bob's home health physical therapist ordered this hemi-walker and it has been collecting dust in the corner ever since.

This type of walker is especially designed for people who are paralyzed on one side and cannot use both hands. So, it's sort of a "one-handed walker".

Back then, the home health PT tried to get Bob up on it but he was too weak.

While he was going Outpatient Rehab, I asked the therapist there if she could try to get him to use the hemi-walker. Well, she tried. Without luck. He was still too weak.

So here we are, a year later, and I know Bob is much stronger now. This past month, I have tried, once again, to get him to use the hemi-walker.

My thought was that if I could just get him to stand up with the hemi-walker, I would then ask his primary care doctor to prescribe a home health therapist to come to our home and teach him to walk with it. I had my eye on the calendar and was aiming for tomorrow, his March doctor's appointment to make this suggestion, but alas, Bob just cannot do it.

I have tried to coach him to push up from the arm of his wheelchair to a standing position, but he cannot do it. I have placed the walker next to and also in front of the wheelchair to see if he could grasp onto that and push/pull himself up, but he cannot do it.

I have also wheeled Bob to the computer and had him watch videos of a stroke patient using a hemi-walker hoping it would help him if he could see how it was done. I purposely picked a video with a fellow who was much older than Bob and had the same right arm/leg problems in hopes this would motivate him. But when I asked Bob if he thought he could do it and he said, "I don't know."

But he tried. We tried. And he still cannot do it. It seems the only way he can get up to a standing position is to pull himself up with his hand on the rail in the hall. No matter how much I coach him to use those legs, push with those strong legs! he is still basically yanking himself up with his left arm/hand on the rail. He cannot even lift his butt a little bit off the wheelchair without pulling hard on the rail.

I am at loss of what to do, except to keep up the leg exercises and keep up the rail walking and hope/pray he will get stronger with time. But how much time should this take? It seems to be taking forever.

The other day, I had a conversation with a friend who had not seen Bob in a long time. It went like this:

"I can't believe how great Bob is doing! I can't believe he's doing so well!"

Me: "Well, he's better, that's for sure. But he has a long way to go."

"Oh, I think he's doing wonderful! You are doing a fantastic job!!!"

Of course, to me, Bob is not doing "wonderful". Wonderful would be if he could get up and walk to the bathroom to use the darn toilet.

Are my expectations too high?

Pink House: Evacuated!

Our Tree

It had been a hectic week and I was looking forward to a quiet day on Friday when...

...about 15 fire trucks roared up our street...

View from our front porch

And all sorts of emergency personnel congregated in front of our house...

...including a HazMat team.

Soon there was a knock on the door. Two firefighters told me that there was a gas leak in the street and residents were to be evacuated. Turns out the gas company guys were digging a new line and hit an old one and now they couldn't find the shut off valve!

So, we had to leave and of course, just that minute, Bob had to pee. And couldn't. And the firefighters are getting antsy, pounding on the back door. So I had to hustle Bob out of the house without peeing and to make matters worse it was a "real underwear day" and so I spent the whole time worrying about him having an accident. OK, not the whole time, because I was also worried about Boomer, Zenith and Ripley who were still in the house. I'd asked the firefighters if I could back in to get them and was told no--but that they would be all right in there.

So, we sat outside on the sidewalk across the street for over two hours before they let us go back in the house. One of the neighbors was kind enough to bring me a chair to sit on.

We also met a new neighbor, down the block, which brought up an situation I've not had to deal with in the past, i.e. what exactly do you say, if anything, to someone you've just met about Bob?

It seems awkward, to say the least, to tell them all about his stroke and that he has aphasia, especially with Bob sitting right there. But at the same time, I worry that they'll think Bob rude because he didn't speak, or worse, they'll think he's mentally retarded. I didn't know how to broach the subject, so I didn't and we mainly chatted about what idiots the guys at the gas company were and how many tax dollars were being wasted.

And luckily, Bob did not have an accident.

Well, that's enough excitement for awhile. Looking forward to a, hopefully, calmer week.

A Strange Turn of Events

The other morning around 5:00 a.m., Bob woke me up. I could hear him in his hospital bed, loudly crying out: "Gross! Oh gross! Oh gross! Ooooh grrrosss!"

And I thought, what the heck? Did one of the cats hack up a hair ball on his bed?

My second thought, I dragged myself out of bed, was this is weird. Because Bob sounded just like Bob, and I mean like "old Bob", pre-stroke. I can't remember the last time I heard him use that word "gross". And his voice, his articulation was perfect. There was none of the usual mumbling or fumbling of words.

When I got to his bedside, it was even stranger, as he only needed his Depends changed. Which is not an unusual occurrence. But why this sudden outburst of verbiage? Why this sudden disgust? I got him changed and cleaned up, and I tell you, there was nothing unusual about the bowel movement, nothing at all.

That night, we were about to eat supper and I asked Bob what flavor pudding he would like to have and he said, "No."

"No?"

"No pudding." When I asked him why he didn't want any pudding, he told me, "No pudding. No poop." He was entirely convinced that if he did not eat pudding, he would never have to have another bowel movement. And no matter how I tried to convince him that this simply was not true, he was not convinced. He was quite stubborn about the whole thing.

So, we are off the pudding for now. I don't know what else to do.

Part of me thinks this strange turn of events is good, I mean, the morning reaction of disgust to "crapping in his pants" (for lack of a better term) is pretty normal, if you ask me. And the whole outburst of "oh gross" is also normal. And this stuff never bothered him before, so I wonder if something new is clicking in his brain. Some of his old self is returning.

And could this be a result of the CerAxon he's been taking? I suppose it's too early to really know yet. He's just completed his first week on that. Five more weeks to go.

But then, the whole pudding thing makes me wonder just what has happened to his logic....?

Anyway, we've had a busy week with two doctor's appointments in the row. The first appointment being  the dreaded return to Pain Management, where, I am happy to report, Bob was able to pee in the cup! Yes! Unfortunately, though, once he started to pee, he could not stop. So the cup runneth over. All over his pants and wheelchair cushion. But at least we don't have to make a separate trip to the urologist for a catheterization.

Breakthrough

Here's Bob's latest drawing, this one he calls "Breakthrough". Though actually, when he first started this drawing I asked him what he was going to call it and he said, "Breaks".

I said, "Brakes? Like car brakes?"

He rolled his eyes.

I said, "Breaks? Like something's broken? That kind of break?"

And he said, "yes."

So I was really wondering what that meant, until awhile later, when I looked at the drawing and saw that those things he draws (jeepers, what should I call them?) those totem-pole thingys in this drawing are actually breaking through the ground.

And I said to him, "Oh! I get it. You meant 'Breakthrough' not 'Breaks'."

He said, "Breakthrough! Yes."

Breakthrough
(click to enlarge)

I like this drawing, because of its positive premise after all those "Struggles", "Obstacles" and "Troubles".

I do wonder about the meaning of these totem-pole things. Bob will start a drawing with just one little section of one of the figures. He will completely finish that section, shading and all, and then add another section. And the figure sort of grows on the paper in front of him.

I wonder if this is a reflection of how he thinks, with the aphasia. Or if it's just a new funky way of drawing that he likes. I also wonder if anyone who has had aphasia could relate to this.

And yes, he's drawing with his left-hand and was formerly right-handed. Hate to sound like a broken record on that, but I find if I don't mention it--someone always asks!

How Not to Clean a Bedpan

I can already hear the collective cringe, an e-gads! of sorts buzzing through the Internet, because there Diane goes again, blogging about bowel movements.... I swear, I cannot help it, as it seems sometimes that my entire life revolves around waste management issues. So, as we used to say when we were kids, here goes nothing.

The other day, Bob had just finished doing his leg exercises when he indicated he had to pee. As he reached for the urinal, I left the room to snatch a few moments to straighten up the kitchen, or clean off my desk, or do some other menial chore crying out from neglect, when I heard him already calling to me: "hey! hey! hey!"

So I returned to his bedside to find him, pants to his knees, urinal in place but looking quite agitated. I asked him what was wrong and he said, "Bottle."

"Bottle?" I had no clue what he meant as he sometimes calls the urinal a "bottle" but the urinal was there in place.

"Bottle!" he said again, his voice growing more panicked.

"What do you mean?" I asked, but he kept saying that word, "bottle", which of course made no sense, so I said, "Show me."

Bad idea. Because he did.

He reached underneath himself and when he pulled out his hand, it was oh shit! And once again, I mean this quite literally as that was what his hand was covered with.

Oh crap, because Bob, as I said, had his pants down and his bare bottom right there on the bed with nothing to protect it but the bed pad which I noticed had gotten kind of skewed during our exercises. So I dash into the breakfast nook and grab the bedpan.

Now I have never used a bedpan before and you may ask why I even have a bedpan that I have never used and I will tell you the honest truth. I filched it, yes, I pilfered it from the hospital before Bob was discharged. I'm not so proud.

Back in the hospital, the therapists had tried to "teach" Bob to use this bedpan without luck. Two problems at the time were that Bob could not lift his tush high enough off the bed and then there was the fact that he seemed to have no warning when a bowel movement might strike until the thing was on top of him, so to speak. They also tried to teach him to use a urinal, which proved to be another unsuccessful endeavor.

Shortly before Bob was to be discharged, I noticed the pink plastic bedpan in the bathroom of his room and figured that the hospital, being a usual and wasteful hospital, would most likely discard it--so I purloined it. Along with the urinal. Stuffing both into my tote bag and discreetly, well as discreetly as a woman with a bulging tote bag, smuggled them down the back stairs to the parking lot and shoved them both in my trunk.

I figured these would come in handy at home. I also figured I would have better luck getting Bob to use them. Which I did, with the urinal, though the bedpan has proved problematic for the same two reasons I mentioned above. 

Though recently Bob has been able to lift his tush and even more recently seems to be getting a bit of a forewarning, I still have chosen not to use this device. The main reason being that with the Depends one can actually manage the mess quickly, with eyes averted (that's important) by slicing down the sides of the diaper with a scissors and hence sort of quickly rolling the whole mess into a tight ball to deposit in the garbage. With a bedpan one would be forced to look the thing straight in the eye, so to speak. Not a pleasant idea. And then there's clean-up to do. So the bedpan has remained enshrined in the breakfast nook as a sort of paean to my brief life of thievery.

But I have digressed, so back to the present day when I was dashing to the breakfast nook to retrieve the purloined bedpan as it was, unfortunately, too late for a pair of Depends.

I managed to thrust the thing up under Bob quickly and he managed, thank goodness, to hold the bulk of it off until I arrived. But then, there was the aftermath.

I am no bedpan expert, in fact, I am novice at this. As I pulled the putrid device out from under him, my first reaction was to begin gagging. Not good. Then what to do with it? My inclination was to take it to the bathroom, dump it in the toilet, but this seemed disgusting and it also seemed quite stuck to the bottom and how would I pry that off? Then there's the matter of splashing. I know there is such a thing as a bedpan liner, but I did not have one of those. What was apparent was that I must get rid of the thing and quickly before I lost my cookies. 

So I got a plastic grocery bag and shoved the whole mess inside and then, like a woman whose house is afire, I dashed through the house and flew out the back door down the wheelchair ramp into the yard where I flung the horrid thing on the ground near the garden hose and then began kicking the bedpan still in the bag, in an effort to kick the shit out of the bedpan. And of course I mean that quite literally.

I imagine I was quite the spectacle, as we are The Pink House on the Corner and so our side yard is on the street and anyone walking by would have seen me, wearing latex gloves, dancing around a plastic bag grocery, kicking it. But it worked.

Next I extracted the bedpan from the bag and tossed it aside as it was a mess and I tied up the plastic bag. My plan was to then spray off the bedpan with the garden hose but when I reached for the hose I found the nozzle was gone. Gone! Someone had filched my hose nozzle! So I grabbed the bedpan and holding it at arm's length dashed to the garden hose at the front of the house only to find that one hooked up to a sprinkler. So I dropped the thing again, unscrewed the sprinkler, found my old hose nozzle which doesn't work well, in fact leaks and squirts in all the wrong directions, but put it on the hose then turned the water on and blasted the hell out of the bedpan with a burst of water which unfortunately ricocheted back at me and now I am drenched with water and poop splatters.

To add insult to injury, it begins to rain.

When I return to the house, mission accomplished, Bob takes one look at me and begins to laugh.

And I laugh too.

I guess I learned how not to clean a bedpan. Next time, I'll stand back farther with that hose. And I think I'll look into those bedpan liners.

CerAxon & Bob Revs His Engines

Back in October, I was approached via e-mail by a representative for a company that produces CerAxon, a "medical food" which promises to aid stroke survivors in the recovery process. She wrote that she had read my blog and was touched by our story and she wondered if she could send me a free sample of their product on the condition that I blogged about it.

Well, a couple of things came to my mind. The first was: Wow, someone thinks my blog is that popular! Whoo hoo! The second was what is this stuff? as I had never heard of it.

So I did a little online research. The main ingredient of CerAxon is citicoline. Citicoline is--well, I'm not sure what it is--some websites call it a "brain food", others call it a "phospholipid" while yet another said it was a Vitamin B compound derivative. Well, whatever it is, there are certainly a lot of studies about it. Unfortunately, those studies which involve stroke survivors were aimed at immediate post-stroke recovery, i.e. within the first 24-48 hours post-stroke, with very positive results.

So I e-mailed the company rep back and asked her if she thought it would be of any help to Bob, who was now over 12 months post-stroke. She replied that she didn't know and I should talk to Bob's doctor about it.

Bob has seven different doctors, but the doctor I approached about this was his endocrinologist, Dr. P. I choose Dr. P. for a couple of reasons. He is, I think, the smartest doctor Bob has and he is also East Indian and very open to alternative health care methods. Dr. P. was not very familiar with citicoline, though he knew it was "neuroregenerative" nutrition supplement and he told me that it certainly wouldn't hurt Bob, that worst case scenario--it wouldn't do anything. Best case scenario, it may help him. He gave me the go ahead to try it.

So I e-mailed the company rep back and asked how much CerAxon they would send. She replied "ten doses". I did a bit more research and found the usual dosage is administered twice daily for six weeks and ten doses would only get Bob through five days. Then I found out how expensive the stuff is--and realized we couldn't afford, on our meager fixed income, to buy the full six week dose.

I e-mailed her back and told her I could not afford to do it. That I didn't want to start Bob out on something that he couldn't finish. That I didn't want to get his and my hopes up about something that most likely, in that quantity, would not help him at all. And what on earth would I blog about at that point?

I figured that was the end of that, but then the rep e-mailed me back and told me she had gotten the go-head to mail Bob the complete six week dose for free, provided, of course, I blog about it. I was thrilled and agreed and did a bit more research on citicoline to prepare myself for this new therapy. This is before Christmas.

The package never arrived.

I figured it had been delayed by the holidays.

In January, the company rep e-mailed me to ask if Bob had started the CerAxon! I sent her a message back saying we never got it. She replied that she'd look into it, to see if it had been sent.

More waiting. Then, she e-mailed that she would send it again, but unfortunately, she could only send me two boxes, which would enough for ten days. That evidently the original shipment had gotten lost and she was sorry about that.

So I e-mailed her back and told her to forget it. I didn't want to blog about or give Bob a partial dose. That my plan had been to give Bob the full dose, for six weeks, and blog about any improvements in his recovery process. I also mentioned that I have been receiving over 1,000 hits on my blog per month now, thinking that might sweeten the deal.

I didn't hear from her. I figured that was the end of it. As Bob would say, "oh well".

Then yesterday, I went out to get the mail and there was a package, post-marked Feb. 6, containing the full six week dose of CerAxon.

So we are going to start this new nutrition therapy and I am very excited about it. Like I said, there have not been any studies (at least that I have found) on citicoline and chronic post-stroke recovery in human patients, however, I did find two studies done with chronic post-stroke rats. And the results were promising, i.e. improved cognition, improved learning skills, faster recovery than the rats who did not receive the citicoline. Though I do feel very sorry for those lab rats!

There have also been studies linking citicoline with cognitive improvements in Alzheimer's and dementia patients. Studies indicating the citicoline boosts neuroplasticity and we know how important that is to a stroke survivor. One study concluding that it can reverse in "age-related change" in the brains of healthy senior adults. And other studies concluding that citicoline helps improve the memory and cognitive learning skills. And even a few indicating it helps repair vision loss. All things Bob could really benefit from. Which really makes me wonder why no one has done clinical research on the effects of citicoline on chronic stroke survivors like Bob.

I sat down with Bob and explained all of this to him, yesterday. I sometimes wonder just how much he understands, but I never "talk down" to him. So I explained the whole rigamarole it took just to get the CerAxon and all the study results and told him we would start his dose today.

And he said, "Hallelujah! I win!"

This morning I gave him his first dose with his morning meds. The nice thing about CerAxon is it's liquid citicoline, so it's easy to put in his peg tube. After I gave him his meds, I took the dog for a walk. A couple hours later, Bob was sitting in bed making a strange noise that sounded like "um um". When I went over to his bedside to find out what was the matter, I realized he was not saying "um" but "vroom!"

You know, like a car engine: Vroom! Vroom! 

Not only that, he was shifting an imaginary stick shift and moving his right foot as if he was stomping on the gas.

I asked him what was up with that and he said, he felt "good" and "different". Jeepers. Do you think this stuff works that fast? Either way, it's sure good to see him so revved up about this.

Anyway, today we started our own "Pink House Study" on the "Effects of CerAxon on Chronic Post-Stroke Patients" with only one subject (Bob) in this study and I will keep you posted.

Because I promised, here's a link to the CerAxon website: http://www.ceraxon.com/  Their slogan is "Hope, Belief and Courage to Continue After Stroke or TBI" and I kind of like that.

As well as this following link to an article about a lab rat study which concludes that citicoline may be beneficial to chronic stroke patients with cognitive difficulties:
http://ncbi.nlm.nih.gov/pmc/articles/PMC2686890/

Struggles

Here's another left-handed drawing from my formerly right-handed artist:

Struggles
by
Bob
(click to enlarge)

I must say that I am glad and relieved that Bob has found this way of expressing himself through his artwork. I have often wondered, over this past year, how it must feel to him to have had such a devastating stroke and not to be able to talk about it. To not be able to vent, complain and/or just express his feelings and frustrations. To keep everything bottled up inside as he is unable to communicate in a "normal" way...

A Crack in that Old Plateau

Bob has been "plateauing" for quite awhile now as far as his right leg is concerned. We have been doing the same daily leg exercises for nearly a year now, without much improvement in the movement of that leg. It's tedious and, often, heartbreaking work and, when you're not seeing any improvement, one sometimes begins to wonder: why bother?

Bob does try so hard. You should see the concentration on his face as he stares at that right leg willing it to move the way he wants it to--without much luck. That's the heartbreaking part of it.

The tedious bit comes from the fact that Bob still can't count so I have to sit with him and count off the repetitions. He can count to ten, but once past ten he gets all mixed up, i.e.: 10, 11, 17, 21, 24, 50! (Though I must admit, that's one way to get these exercises done quickly!) So I'm right there, every day, counting for him. He also forgets which exercise comes next, or will completely forget an exercise, even though we've been doing this same routine for over a year. Everything is so much harder when you throw the aphasia into the mix.

One of the exercises we do are leg lifts. This is done lying on the bed and is basically lifting the leg straight up. Bob could never lift his right leg up without first bending his left knee and pressing down on the bed with his left foot, thus pushing his right leg into the air.

So you can imagine our delight and surprise when this week Bob was able to actually lift that right leg into the air, without the help of his left leg! And not only that, he was able to do this smoothly without the usual jerking and jumping of his muscles. (OK, not every single time was it smooth, but several times it was smooth sailing all the way up and down.) It was so fun to watch, as each time Bob did a leg lift, he cried out, "Hey hey hey!!"

So it appears he's gaining more control over that confounded leg! And after all this time, finally, cracked that old plateau.

As they say, folks: Never give up.

Discovering My Inner Drill Sergeant

Seems these past couple of months, it has been really hard to get Bob motivated and I can't say it's been an easy task to keep myself motivated either. It's definitely hard to stay positive, to keep trying, when you're experiencing little to no results. We've been working hard, for 8 months now, without the help of outside therapists, doing our own Pink House version of Outpatient Rehab. This consists of approximately four hours each afternoon of leg exercises, arm exercises, tongue/mouth exercises and speech exercises and is capped off with a daily walk at the rail.

For awhile, back around November, Bob was progressing beautifully.

Then, all the progress seemed to come to a screeching halt. A long plateau. Or worse, a bit of backsliding... a regressing instead of progressing. 

And all the cajoling, pleading and/or threatening did not seem to be working, anymore. Bob seemed to be finding more and more excuses to not get up and walk that rail. The biggest excuse being he "has to pee" and I tell you, this guy can spend two hours or more trying to pee. And no amount of begging/crying/pleading would convince him to let go of that urinal. Which really put a damper in our schedule.

For awhile, I was at my wit's end as to what to do. Ultimately, I sort of gave up, you know, an ok, whatever, spend all day peeing, see if I care! kind of attitude. Thinking maybe he'd just come around on his own. But he didn't...

So, I've had to steal myself and dig down deep into my somewhat dwindling reserves and discover my Inner Drill Sergeant.

Yes, and put my boot down, so to speak.

So, now it's AT-TEN-SHUN BOB! What? You got to pee? Well, you have five minutes. FIVE MINUTES! Then, we're up! And if you need to, YOU CAN PEE AT THE RAIL! 

HUP TWO THREE FOUR!

Yes, it was time to pull out some bigger guns.  

Like: WHAT DO YOU MEAN, YOU'RE DONE? GIVE ME FOUR MORE! FOUR MORE!

HUP TWO THREE FOUR!

Believe me, this has not been easy for me. I am not drill sergeant material. I am, at least I like to think I am, a nice person. I am, probably, way to soft for this job.

The first time I tried this tactic, Bob looked at me as if I'd lost my mind. Like he didn't believe it. Like he thought I was joking. But I said, "No kidding. No more Mr. Nice Guy. I'm going to whip you into shape even if it kills you and I both! I AM NOW YOUR DRILL SERGEANT! AND THIS IS BOOT CAMP! BA HA HA!"

I was worried this whole technique might backfire. That Bob would just simply refuse to cooperate. But weirdly enough, he has become resigned to it. He now does his therapy, once again daily, without complaint. Well, without as much complaining...

And I have pushed him from an all time low of 9 times at the rail, up to 20 times in the past two months.

So HUP TWO THREE FOUR!

At ease.

Brain Block

Here's another left-handed drawing by my formerly right-handed artist:

Brain Block
by
Bob
(click to enlarge)

Bob tells me that he has "one and one-half brains", by which I believe he means one undamaged hemisphere and one-half of the other hemisphere is undamaged. (Which I am quite glad to hear as the doctors said only 20% of his left hemisphere was undamaged!) The damaged part of his brain, he calls his "Brain Block" and the above is his artistic vision of that part of his brain.

Bob loves to hear comments on his artwork, so feel free to leave one for him and I will certainly pass it along.