Better News At Physical Therapy

The ARJO Walker

Although the news from Swallow/Speech and Occupational Therapies has been dismal, the good news is that Bob is making some real progress in Physical Therapy. So much that the PT therapist has already "passed" him on his evaluation and extended his therapy for three more weeks. This past week, the therapists finally got him "out of the parallel bars" and on the floor moving with a specialized walker called the ARJO.

I wish I had a photo of Bob using this device, but unfortunately I am always called into duty during this therapy to push the wheelchair behind him in case he collapses....

As the therapist had warned me, it is not a pretty sight. Bob's balance is still very poor and his gait quite unstable. He pretty much has to lean on the U shaped padded tray as he cannot stand up very straight and he leans far over to the left nearly toppling it over. He is moving his legs much better, no more knee buckling!, but he walks in a sort of bad imitation of a stiff 1950's movie robot, and is having a very difficult time with foot placement.

We make a strange sort of parade through the therapy room. Bob in the walker with a therapist on each side hanging onto his gait belt, trying to hold him up straight, while another therapist behind him helps him with foot placement and me, bringing up the rear, pushing the wheelchair.

But he was able to walk 20 feet on Thursday in this device!

What To Do About His Swallow....?

I am in a quandary... not sure what to do. We went, yesterday, to see Bob's Ear, Nose, Throat doctor (aka Dr. Doom) and I asked him to take a look at Bob's swallow tests, which he did. According to Dr. Doom, everyone is wrong: i.e. the new swallow test is not better as his neurologist suggested, nor is it worse as his therapist has suggested. Doom thinks the test results from Feb. and June were "pretty much the same" and the only difference between the two tests is that the final recommendations are different. In February, the recommendation stated that Bob was capable of eating "applesauce consistency" for pleasure and practice while the June recommendation was "NPO" meaning nothing by mouth, not even applesauce. Dr. Doom believes that this is because the latest speech therapist is basically worried about liability and is scared shitless she'll be sued if Bob should choke or aspirate and develop aspiration pneumonia.

I did ask about the changes that I noted in the reports, i.e. going from "severe" to "mild", and Dr. Doom stated that this was only in the oral phase and the oral phase is "pretty much cosmetic" meaning Bob doesn't drool as much, looks better when swallowing, but once the food is past his mouth and into the throat there has been no change. That Bob still doesn't have much of a cough reflex and this could be quite dangerous should he aspirate....

So I asked the doctor for his advice, I mean, what do we do now? His advice, "off the record" and "if I were you", (I guess he doesn't want to be sued either) he would skip the therapy and "just wing it" at home. "Off the record," (again) if he were me, he would let Bob eat pretty much anything he wanted to "for pleasure and practice", as long as we were careful and knew the risks, and see what happens.  And he'd be happy to order another swallow video in six months to see if there were any changes. Though he wasn't optimistic. He said that if Bob was going to recover his swallow, there should have been more improvement by now. It doesn't look good, he said, he didn't want give me any "false hope".

I asked him if he thought continued therapy would help and again he wasn't optimistic but said "it wouldn't hurt", but he agreed that doing the "dry" e-stem without anything to swallow was a "waste of time" (well, I'm was right about something!).  He suggested I talk with the speech therapist and offer to sign a waiver stating I wouldn't sue her if Bob aspirated and maybe she'd continue the therapy. Either that or find a new therapist. He'd be happy to send a script wherever I wanted him too.

I know finding a new therapist sounds like the best option, but, the problem here is money. There are few clinics nearby that offer speech/swallow but none which offer financial assistance and at $30/visit, two or three times a week, there is no way we can afford it. The nearest place that offers assistance is a 45 minute drive and with wheelchair transport, make that a 2 hour drive because the transport requires a 45 minute window in addition to drive time, and with Bob having PT three times a week on the other side of town, I just don't think we could do it, time-wise it would be too stressful.

And the waiver? I don't know if a) the therapist will go for it, and b) if I really want to go back to that therapist. I do not like the way she treated Bob the last few sessions....

So, I'm leaning toward "winging it" as Dr. Doom said, but geez, is this the right thing to do? I know that the "best exercise" for swallowing is swallowing, but I won't have the e-stem, and is that necessary? And then there is that "false hope" issue.... will his throat ever recover? Then, I'm thinking, it might be OK to take a break from speech/swallow therapy for a bit, concentrate on his PT which he is doing pretty good at and maybe, after PT, see about the long drive to go swallow therapy......

There is better news with Physical Therapy, but I am running behind schedule and have no more time to write. I will try to post something tomorrow morning!

Trouble With Speech Therapy

It was a distressing day with Speech therapy at Rehab yesterday. Bob's regular therapist was gone so we had the substitute (remember the "goood jaaahb!" lady?) She, too, did a "dry" Vital-Stem on his throat, a complete waste of time, if you ask me, and then she said she was going to "finish the test". And I'm thinking, finish the test? I asked her what she meant and she told me that the other therapist was in the process of "testing" Bob and she was going to "finish the test." This floored me because at the last session the therapist made no mention of a "test". I know that she had shown Bob flash cards, etc., and made notes of his answers, but she always makes notes and that session didn't seem unusual to me.

So I asked this therapist what the test was for and all I got was a pretty evasive answer, i.e. "it's just a test". And I'm thinking, what on earth is going on? Because, before when they were getting ready to discharge him, they didn't do a "test". And now, during these "extra" four sessions, the ones ordered by the neurologist as an extension, they are "testing" him? Instead of doing therapy? I ask her why they are testing him now and the answer is "to see where he stands". So I ask if I'll get to see the results of this test, to see "where he stands"? She says "Oh, I don't think it's a good idea for people to know where they stand"..... Huh?

So she proceeds to "test" Bob on things I absolutely know in advance he's going to fail. Like reading. And writing. Those two things I have been begging the therapists to work with Bob on, but they have not done it. She shows him some words and asks Bob to read them out loud and, unfortunately, Bob has no clue. At one point, she left the room and the word in front of Bob was "chair", so I lean over to Bob and whisper "the word is 'chair'" and when she came back in the room, Bob said "chair!", but that was the only one he got right. Then she gave him a blank piece of paper and asked him to write his name, which he did. He can do that. I have taught him that. Then she asked him to write letters, i.e. "T, G, R, etc." I think he got the "T" right but that was it. She asked him to write the word "cat" and he wrote "dog" (no kidding) and she asked him to write a couple other words which he either drew complete blanks on or wrote some unintelligible squiggle. She asked him to write the numbers "one, two, three" and he couldn't do it. And that was the end of the session.

It feels like they are trying to sabotage him. To screw up his chances of continued therapy. As if they are going to use this "test" against him. I am quite concerned about it. I mean, are they going to show this "test" to the insurance company or his doctor in order to prove that continued therapy is a waste of time? Or what? Right now, it is my understanding that the insurance company is not the one pushing for the discharge. Bob's case manager told me that Bob's insurance plan has no limit on the amount of therapy he can receive as long as it is "medically necessary" and so far, according to the case manager, there has not been a problem with the insurance. It's the therapists themselves who are pushing for the discharge and I don't understand it. It's as if they just don't want to work with him. And here they are "testing" him on things they haven't even covered in therapy.

I am feeling sick to my stomach over this. And feeling like I made a big mistake asking for more therapy.

Still Dealing With Bladder Problems

It's been a rough week with the neurogenic bladder problems. We missed a day at Rehab because he wasn't feeling well. We were back to see the urologist, who doubled his medication and said if this doesn't work it's either a bladder implant or a full-time catheter. Neither of which are very appealing.

Need your prayers! Bob is terribly uncomfortable and I am going crazy....

A Little Miracle During Mirror Box Therapy

Yesterday I went to the pharmacy to pick up some prescriptions and found these little squeezy balls called "fuzzy balls" and bought two of them for Bob. My idea was to put one ball in his affected hand and the other in his good hand and have him squeeze the ball during mirror box therapy.

I must admit, we have not been as regular as we should using the mirror box, mostly because of time constraints, so I was pretty amazed at what happened during our therapy session. As Bob was squeezing the ball with his left hand and watching the reflection in the mirror, I noticed a bit of movement inside the mirror box. So, I ran and got my camera and made this little video to share with you. (I had to upload it on YouTube because for some reason it wouldn't upload straight to my blog...) I apologize for the shakiness, at one point Bob bumped the table, but watch this video and keep your eye on his thumb because the darn thing starts moving! This is the first movement Bob has had in his hand, other than the electrically stimulated movement from the Bioness machine.

I am amazed and feeling quite blessed this morning and full of hope that his right hand/arm will recover!

What's It Like to Have Aphasia?

I have been trying to teach Bob to read, with great difficulty (I might add) and not much luck. I was looking for some reading tips for aphasics on the internet and found this interesting aphasia simulation at http://aphasiacorner.com which shows you what it is like to have aphasia. Do click on the above link and check it out. It's enlightening.

Still haven't found any tips on teaching Bob to read and certainly wish the therapists would work harder on this with him, but the therapists seem to think teaching Bob to put on a t-shirt, one-handed, is more important than teaching him to read. They will spend 30 minutes or more with the t-shirt business. Personally, I don't give a hoot about his ability to put on a t-shirt and desperately want him to be able to read again. I guess that's the writer in me talking....