A visit to the neurologist...

Yesterday we finally got to see the neurologist after a four-month wait.  The appointment was supposed to be June 25^th, but due to “unforeseen circumstances” we were forcefully rescheduled.  I’m wondering about the “unforeseen” part because this is the second time this has happened.  That just meant I was already annoyed when we went to Pensacola.  It’s a forty-five-mile drive from our house to the hospital in Pensacola.  Ordinarily the trip takes about an hour door-to-door, but not yesterday.  We had rain that was like the proverbial cow pissing on a flat rock.  I’ve driven through tropical storms with less rain.  And where there is bad weather in Florida, there are also drivers who forget how to drive in bad weather.  We were five minutes late, even though we gave ourselves 90 minutes.  I was spring-loaded in a pissed-off position, and I badly wanted someone to say something, ANYTHING, about us being late so I could lay into somebody.  But wouldn’t you know it, the staff at the hospital were too nice.

Unlike when we journeyed to the hospital to get Carol her MRI, the check-in at the neurology clinic went as smooth as glass.  Instead of having to fill out yet more reams of paperwork, they handed me an electronic tablet that is connected to the patient portal.  All they asked me to do was verify the information on the tablet, and we were in.  I thanked the office staff.  When I told the lady who checked us in about the horror show that is the MRI and the lab, she gave me one of those “you gotta be shitting me” looks.  I told her “yes, it’s all true.”  At least information sharing at this part of the hospital is living in the 21^st century.

The doctor asked Carol if she was feeling any pain.  She replied that she did not.  Then he looked at me and asked “is she getting better?”  All I could tell him was that she hadn’t gotten any worse, and that she was still seeing the tree people that only she could see.  He asked me if she’s acting on her hallucinations, and I told him “no”.  With that he doubled her dosage of Aricept, which is a medication he gives to Alzheimer’s patients.  I asked him about heavy metal poisoning.  He did say there was such a thing as “chemo brain”, but then I told him her last chemo treatment was in March 2017.  The last time the nurse visited our house she told us about a therapy for glutathione deficiency.  He hadn’t heard of it, so he excused himself to do a little research.  He found something and told us if we wanted to go down that road he would order the test.  He cautioned us that since this wasn’t a “standard” treatment for Alzheimer’s/dementia, that insurance probably wouldn’t cover it and that it might cost us a “small fortune”.  Since I’m not independently wealthy, I don’t know if we’re going that route.

I asked him to write me a letter that states her diagnosis so I can use it for legal matters later.  And there it was in black and white:

“…senile dementia of the Alzheimer’s type…”

It’s one thing to talk about a diagnosis, but quite another to read about it, especially when the subject of the diagnosis is your wife.  It has a kind of “finality” to it.  It didn’t make me any happier, and Carol started to cry when we got the letter.  She said she wanted to see her mom and dad [see the last bit about me not being independently wealthy].  I used up all of my leave time running her back and forth to all of her appointments, so I have to build it back up so that we can visit her sister for Thanksgiving [I cashed in travel miles].  She got a little pissy with me, for which she apologized after we got home.  I told her that I know it wasn’t her fault, so she needn’t worry about it.  But it was a silent car ride all the way home. 

A few days ago we were out and about and I had the Allman Brothers playing in the car.  She looked at me, smiled and said “I really like this music”.  Since we’ve been married, we’ve seen the Allman Brothers Band six times, Gregg Allman and his band four times, and Dickey Betts’ band once.  So me playing that all the way home from Pensacola was good for her.  But I had an epiphany while I was driving, and it wasn’t a good one.  I remembered when Ronald Reagan revealed he was suffering from Alzheimer’s, and that he lived another 10 years after that.  After I did the math, I realized that if I retired when the time is right [meaning that the house was paid off], most likely I wouldn’t have anyone with whom to enjoy my retirement. ☹

But at least I don’t have smallpox…

A post script – I asked Carol if it was ok if we went to Colorado after we go to Wisconsin, and she said “yes”.

The Speech Therapist, Take Two

When last we saw the speech therapist, things didn’t go so well.  She called me at work the week after we last saw her and I told her about Carol’s trauma.  I suggested she wait another week before trying to come to the house again to resume therapy.  She took my feedback and told me that she would try another approach.  It was with some trepidation that we welcomed her into our home again.  I told my co-workers that I might have to “fire the speech therapist”.  My expectations were low.  I was worried more about how Carol would react to her visiting again.  In hindsight, I needn’t have worried.  I’m happy to say I like the “different approach”.  More importantly, Carol was good with it as well.

The therapist took the information she gathered from the first visit and came up with some things for Carol to read.  I sat quietly as she went over these things with Carol.  She wanted Carol to read things to herself, and then to read them aloud.  She wanted to gauge how well Carol looked at the written word and be able to not only say them back to her, but also to see if Carol was able to “connect the dots” as it were.  Among the things she listed were “days of the week”, “months of the year”, and “seasons of the year”.  She wrote down my name, the names of our boys, and the name of the current US president.  When Carol read Donald Trump’s name, she remembered “I don’t like that guy”.  That’s my girl… J  The therapist asked Carol to review what they had gone over before her next visit, which she did.

The therapist returned two days later armed with more of the same, but she had some different stuff as well.  This time she came with pictures.  There were pictures of furniture, houses, coffee, and other household items.  It was like having pointy-talkie things that we used to give aircrews for use if they got shot down behind enemy lines.  She also had pictures of shapes.  On one piece of paper, there were two instances of every shape.  The therapist asked her to match each of the pairs.  Carol was able to do this effortlessly.

The therapist was very happy with Carol’s ability.  It boosted Carol’s confidence as well.  She gave us some tips about how to cut down on misplacing things.  Since she is able to comprehend what she reads, the therapist suggested to write down notes and put them in places where she would put things, like “purse”, “phone”, “glasses”.

The therapist saw us twice last week.  She will see us twice every week – Tuesday and Thursday afternoons.  Suffice to say, we’re happy with her work.  After her last two visits, Carol said “I really like her”.  Perhaps she forgot about the trauma from the first visit.  I don’t feel like I have to fire her now.

Misplacing Things

This is a short one, but no less important…

We all misplace things.  It's a fact of life, especially as one grows older.  I'm a creature of habit.  I have specific places for specific things.  When I can't find something where I thought I put it, I get annoyed. I get really annoyed when things I look for “grow legs”.  I haven't been diagnosed with any cognitive disability [yet], and I can't imagine what it's like for Carol to misplace something.  She doesn't misplace many things, but the things she misplaces are important.  The thing that gets misplaced most often is her purse.  She usually carries it with her wherever she is, including inside our house.  Sometimes she might misplace her cell phone, but it has an obnoxious green cover on it which makes it easier to find.  She’s getting more creative about the places she leaves the phone, but I haven’t had to tear the house apart looking for it [yet].  She misplaced her glasses case [with the glasses in them], but only once.  I had a good idea where she kept it, so it was easy to find.  That, and it’s flowery with about nineteen different colors on it. 😊

The first time she misplaced her purse, both she and I were pretty freaked out about it.  Her wallet is in her purse, and with that wallet is her driver's license (her only form of ID), her debit card, and credit cards.  The only saving grace was that she hadn't been out of the house, so I figured it had to be in the house somewhere.  It didn't turn up for a couple of days, so I went through the grind of reporting all the lost credit cards.  That part was easy compared to replacing a lost driver's license.  Here's a quick question - do you know your driver's license number?  Do you know where to find that number if you don't? Luckily, I found out.  I looked up my auto insurance on USAA and there it was.  Whew!  That might seem intuitively obvious to some, but it was a shot in the dark for me.  Anyway, after we got the new credit cards, I gave them to Greg for safe keeping.  He’s a good kid – he won’t abuse my trust.  Everything good about my boys comes from their mother.

Of course, after I ordered replacement credit cards and a replacement license, we found the purse.  There had to be a way to avoid this heart-stopping experience from recurring.  I told one of my co-workers about this, and he gave me an excellent suggestion - a GPS tracker.  He recommended one in particular - Tile.  There are other GPS trackers on the market, and I wasn’t sure which one to get.  When I least expected it, I found Tiles on sale at Office Depot.  I was there buying something else, and lo and behold, while I was in the checkout line, there they were for $25 apiece.  After reading the box, they were exactly what I was looking for.  I bought one. 

It’s easy to use – it’s absolutely Tony-proof.  Tile has a free app for your cell phone, and you can sync with it using the Bluetooth feature.  For an additional $25, you can subscribe to being part of a Tile network.  If you’re out of range of the Tile you’re looking for, other Tiles in your area can tell you where it is.  I added the boys and Mark’s girlfriend Vivi to my network.  Whenever I’m gone, they can track down a missing purse in my absence should the need arise.  We haven’t tested that capability yet.  Since I bought it, we haven’t lost Carol’s purse.  She temporarily misplaces it every other day, but since I put the Tile in her wallet [which usually doesn’t leave the purse], I can breathe a lot easier.  It’s amazing the piece of mind that $25 can buy.

This isn’t a paid advertisement for Tile.  It just happens to be the one I bought and fits the need to track valuable information.  I’m sure other GPS trackers work just as well.  The point is I’m glad my friend and co-worker made the suggestion because I was incapable of thinking outside the box at the time.  Thanks, Rich!

In-home Care Visits

Last month Carol had her annual physical with our family doctor.  Physically, she’s healthier than I am.  I would kill to have her blood pressure.  Her cognitive abilities are still the elephant in the room.  We were supposed to see the neurologist at the end of June.  Due to “unforeseen circumstances” our appointment was cancelled.  This is the second time this has happened, so I’m a bit annoyed with the hospital in Pensacola.  But at least we got to see the family doctor.  We discussed the need for some in-home care for her for whenever I’m gone.  She suffers panic attacks whenever she’s alone in the house. 

My boys both work at the local airport.  They work anywhere between 4:30pm and 5:30am.  They do things like loading/unloading luggage, cleaning the planes, downloading the commodes, etc.  When I’m home [not TDY] I work fairly normal hours, but sometimes between when the boys go to work and I come home from work, she panics.  She doesn’t feel safe at home alone.  She suspects the “tree people” or other people around the neighborhood would try to come in the house.  The problem we have is that my work takes me away from home, but she can’t be alone at night.  We need someone to care for her during that time.  That nut is proving hard to crack.  For the time being, my co-workers are picking up the slack of me being off the road, but I don’t know how long that will last.

Our doctor referred us to a service for in-home care.  That place didn’t take our insurance, and our doctor referred us to another outfit that does.  They’re called Nurses On Call.  The doctor ordered the gamut of services – in-home nursing, physical therapy, occupational therapy, speech therapy, and social work.  Not long after that referral we received our first in-home visit from a registered nurse to assess Carol's needs.  We discussed how Carol sees "people" in the trees, and she told us of some patients of hers in the past who saw people not only in the trees but also inside the house.  She was glad to hear that the people only Carol can see haven't come inside, because some of her patients hurt themselves trying to avoid the imaginary people who come in the house.  That visit went fine.  She told us to expect other visits in the coming days.

A couple of days later both a physical therapist and an occupational therapist paid us a visit.  While the physical therapist was with Carol, I walked the occupational therapist around the house.  He was looking for potential hazards, like the shower, the stairs, the stove, basically anything that can cause any harm.  Since Carol was diagnosed with breast cancer, she hasn’t driven a car.  Carol doesn’t use the stove – she doesn’t cook.  Neither do I except on Thanksgiving and Christmas.  She fell into the shower (only once) while walking by it [she wasn’t feeling too good that day], and I was in the next room to pick her up.  But she hasn’t fallen in the shower.

The physical therapist put Carol through her paces.  He had her sit in a chair, get up quickly, walk to the other end of the kitchen.  He had her walk up and down the stairs.  He assessed her balance.  He assessed her ability to follow instructions.  She passed with flying colors.  Both therapists put their heads together and concluded that Carol doesn’t need their help.  She can do normal things like you and I.  On top of that, her long-term memory is good.  Her short-term memory is not so good.  Sometimes she can’t find the right words to express what she wants to say.  That’s where the speech therapist comes in.

While the visits with the nurse, the physical therapist, and the occupational therapist went well, the same cannot be said of the speech therapist.  She was friendly enough.  That wasn’t the problem.  To do her assessment of Carol’s needs, she did the same cognition test the neurologist did in December.  Only this time, Carol wasn’t quite as receptive to the questions.  As the speech therapist kept asking her questions, Carol became flustered.  There were some questions she couldn’t answer, and this frustrated her.  After a few minutes, she told the therapist “I’m done – my brain is full”.  I don’t know how speech therapists go about their business, and when she asked us if we had any questions, I didn’t have any.  I didn’t know what questions to ask.  Once the door closed and she was gone, Carol cried on my shoulder.  She said the therapist made her feel like an idiot.  I reassured her that she’s no idiot.  She hates what her brain is doing to her.  I do, too.

Last Wednesday I got a call from the same speech therapist and I gave her feedback on her last visit.  I told her that she might want to alter her approach because I don’t take very kindly to my wife being made to feel like an idiot.  She thanked me for the feedback and told me that she was scheduled to come see us that afternoon.  I told her that Carol was still too traumatized from her last visit, and that we’ll see her next week…maybe.

We saw the nurse again.  We told her about the fiasco that was the speech therapists visit.  She told us that Nurses On Call just hired a psychiatric nurse, but it’s going to be awhile before we see her.  She asked if the social worker had dropped by yet. “No.”  She provided the “where the hell is the social worker” feedback to her office.  Who knows, I might get a call from them soon.  She also gave us some tips on how to begin a heavy metal detox without breaking the bank.  But that is for another entry…

     

We Didn't See It Coming

We didn’t see it coming.  It was the week after Thanksgiving last year.  I had just spent a week testing in Terre Haute, Indiana.  I was on my way home, where I would spend one day, unpack, maybe relax, watch some Bundesliga action, and then pack again to leave on the following Monday to go to Langley AFB, Virginia for yet another test.  There I was, eating breakfast in the Indianapolis airport while waiting for my chariot to take me home when from out of nowhere, I got a text from my son Greg.  Until then, Greg never texted me about ANYTHING.  I knew something from him had to be serious, and it was.  His mother was wandering about the house, acting very confused, unsure of who was in her house, unsure of who the people in the house were, and that she was seeing things no one else could see.  Greg wasn’t sure what to do, so all I knew to tell him was to be with her, be patient, and answer any questions she had.  Then right after I landed in Fort Walton Beach, I got another text, only this was from my other son, Mark.  He simply asked “when are you coming home?”  I told him I’d just landed and that I would be home in a few minutes.  I ran two stoplights getting home…

After I finished texting with Greg, my next text went to a friend in Oklahoma.  Her name is Jackie, who is a registered nurse and a teacher.  Additionally, she is also a patient advocate.  I call her “Nurse Jackie”.  No, she isn’t the pill-popping drug-addicted nurse like Edie Falco played on Showtime – Jackie is the real deal whom I trust with all medical questions.  I asked her what kind of doctor I should get Carol to see.  She replied we needed to see both a neurologist and her oncologist.  She said it was imperative that Carol have a CT scan and a complete metabolic profile.

Carol is a breast cancer survivor.  She did six rounds of chemo along with radiation therapy.  Chemotherapy did a number on her brain [they call it “chemo brain”].  Since she finished chemo, she was somewhat forgetful, but not like this.  When Greg told me about Carol’s confusion, I had a nasty flashback to November 2016.   A month after Carol got her breast cancer diagnosis, my sister Judy was diagnosed with a Grade 4 glioblastoma.  That’s the same thing that killed John McCain.  Judy was recovering from having her glioblastoma removed when a heart attack killed her.  Prior to Judy’s diagnosis, my nephew and my brother-in-law told me about Judy having very bad headaches and was also acting “confused”.  When I got the texts from Greg, I couldn’t help but think “oh shit – the cancer’s back!”

I knew that I would have to see the family doctor in order to get to a neurologist.  While I went to Virginia, Greg made the appointment to see the oncologist, but they wouldn’t see Carol until the first week of January.  He had even less luck with our primary care doctor – she was booked solid for months.  Greg did his best, so I cut my trip short and came home.  Maybe I could get somewhere with these people that he couldn’t.  Several years ago, I experienced chest pains while we were out eating dinner [they turned out to be back spasms that felt like chest pains].  Carol insisted we go to the emergency room.  I discovered then that the words “chest pains” got you to the front of the line at the ER.  I took a chance that if I wrote something similar to our primary doctor, I would get the same result.  One thing that Greg told me was that Carol was seeing “people” in all the trees that surround our house.  We call them the “tree people”.  Knowing this, I wrote to our doctor that Carol was having hallucinations.  As it turns out, I cracked the code.  The word “hallucinations” did the same trick for Carol that the words “chest pains” did for me several years ago.  Instead of having to beg, plea or grovel for an appointment, they called me to say they wanted to see Carol ASAP.  We got in two days later.

Carol got her head CT, an EEG and her metabolic profile.  The CT was clear.  That meant there was no cancer.  The CMP revealed a Vitamin D deficiency, but nothing else.  The EEG came back “normal”.  We also got something else we were looking for – a referral to a neurologist.  Without a referral, YOU pay out of pocket, not the insurance.  The local neurologists were booked for months [that is a recurring theme in these parts], so we were referred to a neurologist in Pensacola.  Pensacola is forty miles west of us, so at least we didn’t have to go too far.  We saw the neurologist two weeks after we saw the family doctor.  He gave Carol a cognition test.  He asked her thirty questions.  These are simple questions like “what is today”, “who is the President of the United States”, “what city are we in”, and so forth.  She answered nineteen of the thirty questions correctly.  That puts her in the dementia range.  He then ordered an MRI so he could rule out a stroke as the cause of her current difficulties.

Since this was going to be a contrast dye MRI, Carol had to get bloodwork done so that the MRI techs and the neurologist could be certain that her kidneys could handle the dye.  Here is another thing I learned going through this process – medical establishments in this area are lousy at communicating with each other.  Carol had her blood work done locally.  We told the neurologist that we were getting the blood work done in Fort Walton Beach, and we told him which facility was going to do the work.  He requested the information accordingly.  Fast forward a couple of weeks to when it’s time for the MRI.  We made the drive to Pensacola to get the MRI, only to find out they never got the results of Carol’s blood work from Fort Walton Beach.   It amounted to this – no blood work results, no MRI. 

We had to trek upstairs to the lab so that we could get the blood work done [again].  While we waited, I filled out reams of paperwork.  Carol now has much difficulty filling out forms, so I did it.  Most if not all of the information they requested on the hardcopy paper was information I had already provided to the hospital’s patient portal.  I pointed this out to the person who took our paperwork, and I asked why he couldn’t get the information off the portal.  His answer – “we’re not connected to the patient portal”.  My response – “what good is having a portal if you can’t use it?”  To my surprise [as if I wasn’t surprised already], he answered he wished they had such access.  The nice young man took our paperwork and we headed back downstairs to get the MRI.  As they say in the commercials “but wait, there’s more!” 

For our trouble, I was presented with yet another stack of papers to fill out.  As I was filling them out, I noticed they were the same exact forms that I filled out just one floor above us in the same building.  In addition to medical establishments in this area being lousy at communicating with each other, this particular hospital is lousy at sharing data within its own walls.  The imaging department didn’t have access to the patient portal either.  Maybe someday this hospital will be dragged kicking and screaming into the 21^st century, at least as far as data sharing is concerned.  After I finished the paperwork [again!], Carol got her MRI.  I was tempted to have some choice words with the management, but they had already gone home for the day.  The people doing the actual work were as nice and professional as could be, and we thanked them profusely because we were the last appointment of the day [and it was Friday], and they stuck around for us.  The results of the MRI?  Good.  Nothing unusual, and best of all, no stroke.  We left the hospital thinking to ourselves “we know what it isn’t, but we don’t know what it is”.

With all of these tests coming back “normal”, we’re at a loss to find out what’s wrong with Carol.  The next time we saw the neurologist, I asked him directly - “the MRI was clear, the CT scan was clear, the EEG was normal, and the blood work didn’t show anything bad.  What's wrong with my wife?”  He answered me as directly as I asked him [which I greatly appreciate] and he didn’t mince words – “your wife might have Alzheimer’s”.  I asked if there was a way we could know for sure, and he said “no”, not until it’s progressed far enough that it can’t be mistaken for anything else.  Carol is only 58.  How could someone so young have something like Alzheimer’s?  My friends and co-workers wonder the same thing. 

Here’s a little tidbit that is interesting and makes me go “hmmm…”  Two guys from my office, both of whom are in the same age group as Carol and I [between 55-60], have medically retired.  The cause?  Dementia.  Is this a strange coincidence, or is there something environmental going on here?  It has been suggested to me that Carol go through some kind of heavy metal detox.  We spoke with a nurse who visited the house yesterday that as we get older, our bodies don’t make the necessary things needed to detox.  The next time we see the neurologist will be at the end of this month.  In the meantime, I have some homework to do about heavy metal detox and how to go about it. 

More to follow…