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.