Mike’s Status and the VA Stuff….

September 5, 2011

Health, Mike

It’s been a busy summer and I can barely believe it is over…and we are almost 7 months post cardiac arrest.   All in all I would say we are leading a charmed life.

Mike’s cardiologist says his heart is in pretty darned good shape all things considered.  Ejection fraction is normal.   Damage from the attack is healing.  Blood pressure is quite well stabilized with meds and he’s been decreasing them.   Yes, he has a stented left main artery.  Yes, he has coronary artery disease.  I confess I don’t know the long term impact of any of that and I feel like there are mixed signals from the docs…but if I’ve learned one thing (and it was a VERY hard thing for this uber planning control freak to learn), you’ve got to take a lot of this one day at a time.  If you don’t, you’ll go crazy.

So where are we at exactly?

Well, Mike’s been sad as his recovery has reached a point where his comprehension of what is spoken to him is really good…his processing and memory of it is often flawed, but he understands.  Thus, he recognizes he has significant deficits.  I took him to the neuropsychologist for that reason…Mike has long suffered from dysthymia and I was really worried about a big time depression and thought he needed somebody to talk to besides me.  The guy was pretty great…and I seldom have a lot of use for folks in his profession.  He told him, yeah, nobody’s going to tell you not to feel sad.  You wouldn’t tell somebody grieving they shouldn’t grieve…we need to make sure, though, that it’s not interfering with your desire to get up out of bed and continue to try.  Thus, most days he is ok with it.

Memory is still a very big issue though we work on memory.  Long term memories come back in fits in and spurts and kind of jangled up.  For example, he asked where our dog Betty was. Or Beddy.    I went down the list of which dogs we have and how many and counted them and took an accounting with him.  This irritated him because he indicated to me he knew which ones were there.   I asked the color of the dog he had in mind.  Brown.  I went down a list of brown dogs in his past.  No.  None of them.  He was VERY frustrated at this point and had been holding my hand, which he proceeded to squeeze and shake as hard as he could.  Which is pretty hard.  And my hands are pretty arthritic.  It was pretty painful.  We had to stop to talk about that.  Finally it dawned on me.  I asked him if he meant our big white/creme standard poodle Bailey (or registered as Bailey’s Irish Creme) .  He looked inside his brain and thought for a moment and said YES!  I explained that Bailey had died about 10 years before.  The last car he remembers us having is one we owned about 10 years ago.  I think this is improvement…previously his recall was very random.  He told Kristin he remembered when he first met her.  (Kristin is my daughter from my first marriage.  Mike’s the only real dad she knew).  Their relationship as she grew up was fraught with dissention but since his injury he sure does love him some Kristin and beams when she comes around.  Anyway…he told her he remembered she was smiling and laughing.  Which she would have been.  She is normally smiling and laughing…was as a kid and is now.  I asked him how old she was and he held up his hand about as high as you would a small child, thought for a moment and said Oh, about six, maybe seven.  He was spot on!  Old favorite movies are forgotten…and since we have oodles of cable channels, he has a new movie to watch all the time!  His ability to create short term memories is very, very poor though I have seen him retain a few random things for up to an hour.  Overall though, he doesn’t know if he has eaten, when he has eaten or what he has eaten.  He can’t recall where we are going, when we are going, if we are going or where we have been.  A movie he may have watched yesterday is a new movie again today.  And so it goes.    We are trying something new there but I’ve tabled it temporarily.  We started with a journal so he could write down the date and then the important things he does on that day so he can refer back to it…and the multiple modes of putting that info in his brain will help him to remember/learn.  Unfortunately, I discovered that there are few words he can actually write.  So I need to do some handwriting stuff with him! I also need to do some number stuff with him as his recognition of numbers is kind of flawed.

His orientation to place/time/date/day is very poor.  We are teaching him to use the calendar and he is getting better.  However, each time we point out that it is X day on X date and X year he tells us it’s BS and it is really Y date.  So I have added having him read it to me from the newspaper.  He still tells me it is BS.  I asked if he thought I gave him a wrong newspaper?  He said well, yeah.  So now I make him go GET the newspaper.  Still he argues.  He also still tells me he wants to go home.  He recognizes he IS home…but wants to GO home.  I can’t figure that one out.   Maybe he’s saying he wants to STAY home.  I dunno.  It’s a mystery.

He does not speak above a whisper.  He can…but not very far above.  We went to an ENT who scoped his larynx to look at his vocal folds.  The cords are bowed…but not always.  The doc thinks with breath support and vocal effort training they might improve.  This means exercises for us to do at home.  The doc also said with all the respiratory issues he had it could be a result of that.  But the good news is…no structural damage, no paralysis.  Diagnosis?  Moderate to Severe Dysphonia.

Speech continues.  He’s working hard and his word retrieval is improving.  Diagnosis?  Mild Receptive Aphasia, Moderate Expressive Aphasia, Moderate to Severe Cognitive Communicative Deficits.  I recently read that the patients who have statistically done the best at recovering from aphasia get 9 solid hours of speech therapy a week.  Mike got what I thought was a lot…3 days a week.  However, that’s really only 2.25 hours a week.  Factor in what we do at home…either in homework or whatever I dream up which, since I am chatty cathy, is a lot, I STILL think it’s not enough focused effort.  I went out to do some research on the web.  I went back to parrotsoftware.com and signed up for their 7 day free online trial…and will do the subscription thereafter.  It’s $25 month.   I had Mike doing some word retrieval last night.  Well…we started with some cognitive stuff…cause and effect.  He got VERY frustrated VERY fast and hand squeezing started anew.  Word retrieval got better.  Of course he got frustrated but when I offered the chance to stop for the evening he refused.  He’s motivated to work.  I also discovered bungalow software…which though pricey if you buy the software has most of it online for a $50 a month subscription.  I’m going to see how the parrot goes and then look into adding that.   I am really determined to improve his communication skills.  He is very, very self conscious and feels like he looks stupid.  He is isolating himself from people and activities because he fears he will need to talk.  We gotta get this thing put behind us if we can!

Inhibition control is pretty poor.  Witness the hand squeezing stuff.  And occasionally the “punch”.  I say punch because that is what he is doing…but it resembles that of a three year old child lashing out when you have simply picked them up and removed them from whatever they are doing they shouldn’t and they are frustrated.  Still, his strength is far greater than a 3 year old.  We do a lot of discussion regarding that topic of NOT HITTING.  His social inhibition skills are really sketchy too.  The other night we took the dogs out front for their last exercise.  I guess nature called Mike too and he followed suit.  Right off the front porch into the ornamental grasses.  There was no stopping him.  SIGH.  Thank goodness it was dark.  He seemed unconcerned when I asked what would happen if one of the neighbors came out and saw that.

I hope…by the end of this month…to have him start on Aricept to see if it will help his memory.  I introduced the idea to the neruopsychologist and he thought it was a great idea.  I have an appt with the rehab doc on Sept 21 so we will see what he says then.  We’ve also made an appt with a neuropsychiatrist but she is a busy lady and we can’t get in until Jan 3.

Really, truly, our lives are pretty ordinary with few major issues.  It’s difficult on Mike to be sure…and a lot of work.  But I remain hopeful for as much recovery as possible.

On a different note.  A friend of Mike’s stopped by recently.   He was horrified to learn I knew little of Mike’s Veteran’s benefits and was not availing ourselves of them.   Thus I’ve been spending most waking minutes not dedicated to the house or Mike to investigating these benefits and getting them started.  Mike’s got VA health care…small co-pays…but it will afford us adult vaccinations or him (like community acquired pneumonia and maybe shingles and definitely flu) which our medical insurance does not cover.  But he needs!   So he is registered and has an appointment…it’s out to October 24, but that’s ok by me!  They also have dental care…and we have no dental insurance since he retired.  His teeth took a beating during the hospitalization so my next goal is to get him registered for that.

I also recalled another sailor contacting us just before Mike was stricken.  He had ischemic heart disease and numerous stents.  The VA made a connection between Agent Orange and Ischemic Heart Disease.  Mike had some records from the ship that helped this fellow establish that he was in Vietnam at the time…and so he got a 10% disability rating.  VA benefits with disabilities can be very helpful when you have a chronic condition…if you are 100% service connected disabled, you qualify for priority VA health care with no co-pay.  So Mike might not have had to wait till October 24 for an appointment at the VA if he were disabled by them.

Since Mike was on the same ship and now had Ischemic Heart Disease I thought it wise to look further and establish a claim.  I came to discover the Navy had just added Mike’s ship to the Brownwater list for 1966-1971.  Mike was on this ship early 1971-1974.  Sailors on the brownwater ships are presumed to have been exposed to Agent Orange and no further proof is required to prove their claim.  I also discovered that if he is determined to have a service connected disability for Ischemic Heart Disease, the VA will also look at all conditions that have been created BY that service connected disability and rate them for possibility disability and will also look at pre-existing conditions that are aggravated by the Ischemic Heart Disease for rating inclusion.  Obviously, as with all things to do with the government, the paperwork burden is pretty onerous.  And they are hugely backlogged at the VA so it could take a year or more to process.  But I am knee deep in filing the claim.  It is my fervent hope that the VA can provide cognitive therapy…and since they have so many TBI veterans I suspect they may!…which our insurance DOES NOT COVER.  If I can get him cognitive therapy on a regular basis I will be ecstatic.

SO.  That is where our busy lives are at.  For me, it is busy but feels isolated.  I confess to being unusually teary when I think of all that has transpired.  Some kind of post traumatic thing I am sure.  I am hopeful, with our lives falling into some sort of new normalcy I can get back to some of my great loves…sewing, quilting, embroidery, reading…my HOT TUB now that the bedsore is healed and Mike can use it too.  We just keep moving forward getting to know each other again, forging new roads to our marriage and our lives, learning to love each other with all of our frailties.  And like I said…the picture could have been so much more grim that I am sure we are being watched over and provided for by some divine intervention…our lives are pretty charmed these days.  I am grateful.  So grateful.

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