Mike Day 27 Moving Forward: Catchup Epistle

June 23, 2011

Family, Health, Mike

Well, I haven’t written for several days…and during brain injury recovery there don’t seem to be many static periods.  So there’s lots to ruminate on.  This will be long.  I should probably break it into multiple posts, but who has time.  Grab a cuppa joe if you’re reading and inclined to see it through to the end.   I’ll try to be concise (which is a difficult thing for me to do…)

We’ve had such wonderful days for about a week that I figured if things kept moving upward this might not all be so bad after all.  Like any good honeymoon, all good things come to an end, however temporarily, before the rest of the honeymoon begins anew. 

 Sunday night, found Mike standing at the sink, glasses up on his head, looking like he was trying to take out his contact lenses.  He was making all the right moves.  I asked him what he was doing…since I knew he didn’t have contact lenses in.  I thought maybe something was in his eye.  As if he was telling me the sky is blue, he told me, “taking out my contact lenses.”  “Uhhhh, Honey?  You don’t have contact lenses in,” I responded.  Oh.  Hmmmm.  He washed up instead.  I got to thinking though.  For the first time since February he remembered he wore contact lenses every day of his life for about the last 45 years.  I viewed this as a significant indicator of progress.  (Yeah, I know the neurologists would scoff at that as progress and tell me it’s automatic but I am not looking for atom splitting…just good quality of life!)  I like automatic.  I can capitalize on automatic.  Automatic can be a jumping off point to facilitate other, more meaningful progress.  I reasoned that since it seemed a very automatic move to take out contact lenses, and it seemed so natural that he would just have them in his eyes, putting them in and taking them out regularly might be equally automatic. 

See, Mike’s vision is very, very poor.  He’s really myopic.  In his regular glasses, to read time on a watch (or something on paper), he must move glasses down on nose, hold object up to one eye (6-10 inches away), close other eye, squint, read.  Thus, he has worn contact lenses for years because (a) they look better.  His old glasses, due to the thickness of the lenses necessary were what is called in the military, BCG’s (birth control glasses for the uninitiated reader) and (b) they improved his focal point and field of vision.  As he got older and needed bifocals, rather than trying to use the bifocal lenses, he simply got prescription reading glasses made to wear over his contact lenses.  As you can imagine, the lack of contact lenses has had a pretty significant impact on Mike’s recovery!  Much of the cognitive stuff that is done in therapy has to do with looking at pictures or words.  Walking around cones for balance in PT is heavily dependent on a good focal point and field of view.  Imagine doing that with vision impairment AND balance impairment.  Obviously, wearing his contact lenses might improve things.  I don’t wear contact lenses and know little about them.  Mike’s sister Mel has vision that mimics his (well, she was lasered so hers is better now) and also wore contact lenses.  She’s also a retired teacher…and from my observation she was a pretty darned good one.  When she called Monday to check on Mike I told her of the contact lens removal scenario and asked if she thought she could teach him to use them again.  She pondered for a minute and said yep. She’d give it a go.  See what he’d do with them and try to coach him through it.  (I also asked her to review money and math principles with him.  Math is lost to him I think.)  Today he’s going to Mel’s.   I know she plans to work on money…I think also contact lenses.  Last night he told me he was going to the bathroom to take his lenses out…I am more convinced than ever that this will be natural for him at this point and we have a good chance of success.  My  daughter thinks he’ll be losing them and dropping them.  I dunno.  He’s always been very, very careful with them.  And with Mel he’s in good hands.  We’ll see. Since he starts three days a week of speech therapy next week it would be wonderful if he could be doing it in contact lenses. 

Monday was pretty uneventful.  Mike relaxed, I did an online software class for my embroidery software, it was our day off and very peaceful. 

Tuesday was therapy.  Now if you recall, PT told me last week they wanted to stop his PT until his cognition caught up.  While I understood their reasons when they told me that to move him on to more advanced exercises he needed to be better able to focus, attend, follow directions, I was terribly unhappy that the reason was the cognition…when the facility was unable to provide schedules for speech therapy which would address improving his cognition.  Thus, the famous meeting and the request for me to attend therapy with him for two weeks.  Mel and I agreed to attend.  We learned his home exercises.  By Tuesday we were watching the more advanced balance exercises.  For two sessions I had been asking Mel why the heck we were there.  We were sitting like lumps…and watching this was just painful.  Clearly it was more than he could handle…unless he had some more clear instruction or queuing.  Mel’s observation was that while they might be great physical therapists, none of them could teach a classroom of first graders…or even fifth graders…successfully.  And part of physical therapy/training is the ability to convey to your patient what it is you want them to accomplish…and you do that by teaching.  If you are a therapist in a brain injury program there are special teaching needs required.  If you ask me, PT programs need some teaching skills classes incorporated.  But neither here nor there.  I asked Mel at one point if the whole point of them having us watch this was to see what he goes through and they go through as I had suggested earlier.  To say I was annoyed was an understatement. 

I did notice that Mike was holding his foot peculiarly as he did his balance stuff.  He has been doing this at home, in bare feet, but I thought it was corrected when shoes were on.  He walks more on the outside of his left foot with the toes and forefoot pretty much up off the ground.  He can flex, point, curl toes etc so it doesn’t seem to be tone.  I have to tell him, put your foot flat on the floor and he does…only to raise it up again.  I mentioned it to the therapist when I noticed he was walking in his shoe the same way while trying to walk around cones…and stand with one foot on the balance bubble the other on the floor.  Hello?  How does one balance when one stands that way?  The therapist said he saw his toe poking up in the top of the shoe.  That was it.  This was not satisfactory to me.  I wanted them to look at his foot, out of the shoe, and determine if there was some physiological, mechanical reason for this that might require some sort of assistive device.  I didn’t think I should have to communicate that to these professionals verbatim.  But.  When it became apparent they were not going to pursue it I told Mike to sit down to take his shoe off so they could see how pronounced it really was.  They did.  They couldn’t figure it out.  They called a host of therapists to evaluate.  One decided it looked like Babinski’s sign.

Do you know what Babinski’s sign is?  Well, it’s a neurological indicator of badness.  Something is usually wrong in the spine or the brain.  If the foot of an adult is stimulated with a blunt object on the side and up along the foot to the toes, the big toe, points upward, the other toes spread out like fingers.  Whole hosts of neurological testing is typically done if that sign is evidenced.  The (irritating) PA for the (hated and useless) neurologist early in Mike’s illness was always checking his Babinski and looking grim.  We argued over it endlessly.  I’ll explain why shortly.   Anyway.  Think of a baby…a tiny baby.  Do you know how their big toes curl up and the rest of their toes spread out so sweetly?  That is pretty much what a positive Babinski looks like.  In babies it is normal because their CNS is not really fully developed.    In adults it indicates a neurological issue of pretty good magnitude. 

Well.  As I used to tell the PA from neurology, and I told the therapist who felt it was Babinski’s sign, Mike’s toes…for as long as I have known him, have had Babinski’s sign.  His feet are unique.  As a family we teased him about them unmercifully.  His toes are long and like fingers.  They are prehensile.  They spread out all over and move in all directions as he stretches his foot or his foot is stimulated.  Over 60 years Mike has received numerous physical assessments.  Never, until his cardiac arrest, were there any concerns about his neurologic status or Babinski’s sign.  It was simply normal for Mike.  We teased him that he probably wasn’t too evolved.  The PA was using the Babinski as evidence of his serious neurologic damage…and the therapist, likewise and who probably reads too much, felt it was evidence of his neurologic condition.  (Like I need Babinski or them to tell me his CNS has suffered serious compromise!)   The therapist went on to check for Babinski on his right foot.  There was no reaction.  That’s one of the possible options.  However, as I pointed out to them, before the arrest, Mike’s toes on both feet presented with what looked like Babinski’s sign.  I thought the right foot’s lack of response was more troubling and evidence of the nature of the neuro insult than the response on the left.  The response on the left, for Mike, was normal.  The response on the right, for me, seems to confirm the magnitude of the left brain and frontal compromise that he has experienced.      The therapist suggested taking him to the neurologist.  I was like FOR WHAT?  He has no seizures so she won’t medicate or do an EEG.  CT or MRI will show atrophy…maybe.  But what do we do with that information?  It won’t be news and it won’t drive a treatment plan.  He doesn’t have migraines…so no meds.  There’s no pharmaceutical protocol that exists for brain injury that I’ve found in my treatment.  At this point, in vintage Robin fashion I told the therapist that this would be yet another waste of $25 and I’d pass.  Do they think there is a mechanical, external, assistive sort of thing (orthotic, brace etc) that will help to correct this “habit?”  That is all I really want to know…not your medical advice.  No?  Ok.  Move on.  Next topic.

The next topic was…”Therapist X, why are we (Mel and I), sitting here through these therapy sessions?  There is no apparent useful purpose and I’m wondering the point?  Is it simply to see what he’s like in therapy to prove your point?  Well yes, she told me, that was the point.    I was like, do you think I don’t face the same stuff at home?  DUH!  Instead I said there was no point in continuing this then.  I also concluded that I must not be the communicator I thought I was.  My entire point in my discourse to them when they suggested abbreviating physical therapy was NOT the cessation of physical therapy.  It was the abysmal inability of the facility to provide a therapeutic schedule for speech and cognitive therapy.  Jeez.  Since I pitched my fit they’ve scheduled him three days a week.  At the risk of sounding harsh to the therapist, which I forewarned her I might but wasn’t trying to be, I told her that once his cognition began to improve, given his current physical level, I didn’t personally think they had anything to offer in the way of advanced physical therapy.   Like what advanced PT I asked?  Advanced balance.  Big deal.  Friday is his last PT session. 

OT suggested the other day that one of their sessions could be OT Technology on the computer…with its huge cognitive component.  She would ask the case manager if she could get him scheduled.  The Case Manager hasn’t looked into it yet as of yesterday.  She is concerned that Insurance won’t approve it with whatever the specific code suffix is.  She has it on her desk and she’ll get to it.  I am frustrated by how slowly these people all move.  I’ve gotten the Nintendo DSXL, the games, our WII and balance board is getting hooked up to our bedroom tv today, a new PC with touch screen capability and a large 23 inch monitor is en route…with an account to Luminousity on record, and a list of iPad apps to evaluate.  I’ll provide my own Occupational Technology thanks.  I guess working in software apps for ten years is going to pay off. 

We met with the Speech Therapist, Lisa.  She did Mike’s initial evaluation when he came to the rehab.  She is astonished at how well he’s doing based on that initial eval where they thought progress would be minimal.  With only two speech sessions and the way we are at home, Mike’s cognition is improving measurably.  She’s upping the ante on the kinds of practice work she’s doing with him.  I had just been looking at some workbooks for the SLP and thinking of buying them…$45 each!!!…and noticed that they are the identical workbooks that Lisa uses for her sessions and for me to work on from home.  I’m going to pass on buying them until they discharge him from Speech.  Then I’ll see which would be useful.  I’m excited to watch the changes that will occur as he is receiving the mental stimulation of the computer and the speech classes. 

Tuesday night, after a hard day of therapy, Mike was exhausted.  He got out of bed early in the evening to take the dogs out.  He put his sneakers on…and failed to tie them.  Of course he tripped.  Of course he fell.  As I watched in horror, he plummeted toward the ground and caught himself part way down.  He tucked, rolled, and landed harmlessly on the tile floor.  Somewhere in his brain, as he was falling, he recalled football and wrestling training.  I was terrified.  But impressed.  He went to the powder room…but didn’t get there in time and was bowel incontinent for the first time in a month.  We went to bed about 10 and by then, Mike had regressed to folding the edges of fabric as he did in the hospital.  In the middle of the night I awoke…he was doing the same thing.  He told me it was a “religious frogiman for the minister.”  I got him back to sleep.  At 4:45 I woke up to find him rummaging in the drawers for something to “cut the religious frogiman.”  He was dragging the sheet around behind him.  No amount of redirection would work and he was pushing me out of the way.  I called my son on his cell and asked him to come downstairs.  He did.  He, too, got the explanation that “it was a religious frogiman that needed to be cut.”  Mikey pointed out it was a sheet and he said he knew it was.  Mikey then wanted to know why he wanted to cut it.  Mike said, “to show your mother.”  Mikey said “Mom’s right there.  She sees it and she doesn’t want to see the sheet cut.  Let’s put the sheet down and go back to bed.”   Mike declined.  Finally Mikey grabbed the sheet, took it out of the room, said “There.  The Frogiman sheet is gone.  Enough of this.  Now get to bed.”  Meekly, Mike went back to bed and to sleep. When he woke up he was still tired from lack of sleep, groggy, but not confused.  To say I was taken aback and worried about this confused state is an understatement.    Since he was ok yesterday, I think it was isolated and instigated by the exhaustion both mental and physical from therapy. 

Last night was dreamy.  Mike was funny and charming.  I told him many funny stories about our life together.  Many he recalled.  I was surprised at one point.  A week ago he asked me how we met.  I told him the whole story.  He smiled.  I never expected him to retain it since he doesn’t retain much.  When I began the story telling hour last night I asked if there was anything he might like to know about.  He said not really, just anything.  I asked if he remembered how we met.  He said, “at the hotel right?”  Since we had met in the bar of the Atlas Hotel, a local pub, I said yes.  I asked him who introduced us.  He said “Debby!”  He was right.  I don’t know if it is part of regaining some memories…or if his short term memory is improving and he recalled the story.  Whatever.  I was thrilled.  And today holds all new possibilities for learning…    


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One Comment on “Mike Day 27 Moving Forward: Catchup Epistle”

  1. Beckie Says:

    Hope things are going ok. Since you haven’t posted in a few days, I imagine that you are just really busy. At least that’s what I am hoping and that Mike is being well behaved!
    Beckie in Brentwood, TN


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