Sunday, November 24, 2019

Linda's Testing Results!

Well, that was quick!  We received an email from our Neurologist Friday night telling us her results were totally normal!  No sign of plaques or tangles.  No brain degradation.  No Alzheimer's!  Outstanding.

So, now;  what is her problem.  I went to the Internet and looked up the side effects of some of the drugs she takes.  BOOM!!!! There it was.  Zoloft, is not supposed to be prescribed for people over 65!!  It causes dementia like issues including memory issues, sight issues, and instability walking. The warning says when people over 65 take Zoloft, they are at aa higher risk of falling and breaking a hip, leg, or arm!

She has stopped taking Zoloft and we were supposed to see our GP tomorrow for a scheduled appointment.  Today, they called us and said she had an unplanned issue and they canceled our appointment.  Since the GP prescribed Zoloft, we were anxious to see her.   But, she is not the most informed, up to date, well researched, doctor I have ever seen, so who cares,  My Wife is off Zoloft.  And we will see if her dementia like issues go away.

Of course, the neurologist we see knew she was on Zoloft too!  You would think she might have tried getting her off that med before we had the PET scan that we may have to pay for out of pocket.

I have said this before;  Medical care in Pensacola is poor at best!  Do not move to the Panhandle of Florida if you want to see a doctor that cares about you or knows anything discovered past 1920!!

Maybe it is time to move.

Saturday, November 23, 2019

Linda' Testing

Yesterday, we went to get Linda's PET scan for Alzheimer's and PCA, Posterior Cortical Atrophy.  The Hospital we went to was exceptionally modern and very professional.  The entire experience was bathed in caring concern and professionalism.  We were impressed!  This test is designed to find the plaques and tangles that are the markers and cause of Alzheimer's and related diseases.   Since she has all the symptoms of PCA, that would also be identified by this test.  It is a simple test and not invasive.  She had to fast the night before  and then she had an IV of the things the PET Scan looks for.  The testing took 90 minutes start to finnish!

Now, we wait for the results.

Why get this test?  Well, for one thing, a new drug that stops Alzheimer's in os's tracks is in Level 3 testing with great results.  Its is presently called BAN 2401.  You can look up these tests on the Centers for Disease Control WEBSITE.   And since the PET scan can find Alzheimer's 20 years before the first symptom appears, it may be the end of Alzheimer's when coupled with the BAN 2401 drug.

Some insurances will not pay for the PET scan and we do not know if our insurances will pay or not. If not, we will have to pay about $4000 for the test.  Expensive, yes.   But the benefits may be really BIG!  I have spent much more on worse things than this!  Again, we will see.

Friday, November 15, 2019

Everything is overwhelming!

Everything seems to be more than I can handle.  I am overwhelmed by the simplest things.   Riding in the car is an overwhelming sensory experience!  Everything seems ready to crash into us.  The cars are so close.  A scheduled event is a monumental thing.  I only seem somewhat comfortable in the "Cabin" with complete silence and all the lights on.  If the computer needs an update or has issues loading, I simply turn it off.   I stopped playing "Freecell" because of the constant attack of ads!  I deleted the app!!

My head feels like it is empty, literally!  It feels numb and empty.  My vision is distant and fuzzy.

These are issues that have been getting worse recently and now seem to be a really big issue for me.  I am even more anti-social!  I do not want to be around people.  Quiet, calm, well lighted surrounding are what I need.

I will give credit to Neudexta.  It keeps my anger outbursts at bay, for the most part.  If I do get angry, it seems to be short lived. That is a blessing.

I am truly glad I do not drive, even though, I ask my Wife, everyday of I can get my Driver's License back!  She grins and says no.  However, I still have to drive the car in to the car wash track!!

This is a further deepening of my LBD journey.  Not unexpected, but frustrating just the same.

Wednesday, November 6, 2019

Helping others...

As you all know, my Wife and Started a Memory Support Group here at Azalea Trace over three years ago.  We started with three brave souls and now have attendance in the upper teens, every Wednesday!  We have had numerous guest speakers, like today when we had a speaker from the Therapy Department come poll us on things they could do better for Dementia patients!

In the capacity of Facilitator of the group, I have tried to help people deal with the effects of Dementia, for the patient and the caregiver.  I research new information like the great news about the Ban 2401 drug trials, or information on how to deal with different Dementia issues.  We have discussed every fact of Dementia, even the need to prevent your Dementia patient from getting septic because they do not have bowel movements!  Yes, that is a BIG ISSUE for Dementia patients!  It can and will kill you!

But, recently, my efforts to help a couple has caused me serious problems because I got in over my head.  I often tell folks; "I am not a doctor, and I do not play one on Television!"  In this case, I tried to help with issues I clearly should have stayed away from.  In the end, I did get the folks connected to competent medical care,  But, I am now very agitated, and the sanctity of "The Cabin" has been breached.  The wonderful Nurse Team and the Director of Assisted Living noticed my issues and interceded in a very efficient, caring, gentle manner.  They are professionals in the first degree.  

And I am starting to hang up my spurs as the Facilitator of the Memory Support Group also.  My ability to lead this group is diminishing fast and my Wife has asked a group member to take over.  I agree!  I never realized I was where I was until this week.  It is time I be a full time Dementia patient and enjoy the wonderful care this facility offers.  I am worn out and at my wits end.

Saturday, October 26, 2019

An argument that I had

Recently, I have had a strong desire to move to a remote, defendable, location in a fortified home and live an isolated, quiet, life.   Recently, one evening when I was alone at "The Cabin", I had a lengthy, verbal, argument with my wife about this topic.  Every thing I said about the need for me, and us to move to a remote, quiet location was expertly countered by her.  After a lengthy discussion, I agreed that she was right.

The problem is, I was alone in "The Cabin"!  I was talking out loud but she was not there.  She was there to me and she was discussing the idea with me.   Then I realized, I had lost the argument with my Wife and she was not even there!  Damn!!

I have had this occur in the past.  But, this is the first time I lost an argument to no one present!  This is a frustrating journey.

Saturday, October 19, 2019

That disoriented, lost, feeling

Recently, I have had a more constant disoriented feeling.  Things look unfamiliar, distant, eve fuzzy to me.  I feel like I am in a mental fog.  Naps sometimes help me with this issue, as it did today.  But, it returns as I get more tired or if I am agitated.  I am always more comfortable in "The Cabin" but I continue to spend great times with m Wife in our apartment.  We have had some wonderful outings and meals together in recent weeks.   She is also taking a very welcomed, active, role in the memory Support Group she helped me start three years ago.  She brings a fresh view of dementia care and of my experiences to the group.  And she relieves me of the stress of facilitating the group!  She has been a tremendous addition to the group.

Writing has become more difficult also.  I post less often because of that.  My days are now shorter and I spend more time napping and alone.  It takes a lot out of me to constantly control the agitation that groups of people cause me.  "Show Time" is loosing it's positive effect.  I guess that is to be expected.

Recently Linda has been tested for cognitive functions.  That test showed she was doing "Normal".  But, her issues with math, vision, thinking that everything is her fault, and sequencing actions, told us something was wrong! She met with our Neurologist and told her of her deep frustration and fear of her issues.  Tests were ordered.  But, I got online and did some research.  I found a little diagnosed condition, directly related to Alzheimer's and Lewy Body Dementia, called Posterior Cortical Atrophy.  It is a dementia that effects the portion of the brain the controls vision!  The symptoms of PCA fit her demonstrated issues to a "TEE"!  We took a copy of the Mayo Clinic and Cleveland Clinic research to our Neurologist and they are now moving in that direction.

My question, is why do I have to do the research?!   Yes, I know doctors are overworked today.  And we are lucky I am so tenacious.  But still, shouldn't the doctor's office have someone employed to do research?!   That is Linda's idea, not mine.

That's all for now.

Saturday, October 5, 2019

Recent happenings!!

We recently went through a tough spell caused by a change in my routine.  I must remind everyone that all of us are learning how to deal with Lewy Body Dementia, every minute of every day.   Linda and I were reminded of that fact, abruptly, about 10 days ago.  She brought an orphan, feral, kitten into our home, ostensibly to foster.  Our dog, Zeus, wanted to play with the kitten since he likes all animals.  The kitten was not so sure of that fact.  We purchased all the necessary kitten supplies and some things not necessary.  The kitten was living the "GOOD LIFE"!  Zeus became jealous on the second day and I was becoming very agitated because my routine had been altered.  Zeus decided to show his jealousy by urinating on his newer, luxurious, dog bed!   I exploded!  Yelling, cussing, I threw the dog bed in the dumpster and said I never wanted the cat and wanted it gone, now!  Or words to that effect.

Luckily, a CNA in Assisted Living where I live, was looking for a kitten to adopt.  We took the kitten to her and she agreed.  The kitten went to his luxurious new home that afternoon.  But that is only the beginning of the story.

I became very closed off from Linda and everyone else.  For three or four days, I did not shower, brush my teeth, or shave.  I missed meals, and did not talk with Linda except for mandatory issues.  She, kept trying to get me to talk, but I refused.  I was in a very DARK PLACE!

She finally got me to discuss my issues and she in turn brought up some issues that were bothering her.  It was a frank, pointed, tense, discussion.  It was not an argument.  We were both open to the other's opinions and issues.  At no time did either of us discount what the other one said.  And, the exchange helped me settle down.  But, as Linda knows, I am still not completely over this.  My short term memory has suffered, I am more easily agitated and have blown up since then,  I am more closed up and reclusive, and I run from anything that makes me agitated.  For instance, I love Barrett Jackson Car auctions on the Motor Trend Network.  There is one in Scottsdale Arizona that I watch faithfully, start to finish which is 7 days long!!  The Las Vegas event was this weekend and I was anxiously waiting for a much advertised collection to come up for auctions.  What did the morons at the Motor Trend Network do?  Put commercials on for half of the collection being auctioned off!  I shut the show off and WILL not watch it again.  The pissed me off!

The point of all this is, the recent happenings have impacted me in a very negative way.  Introducing that kitten into our life was a mistake.  I know Linda wanted to make sure that under nourished, black kitten lived a good life and I agree.  But, it caused both of us issues that will impact me for ever.  Changing my routine is not a good idea.  But she did not fully understand that she she started.  How could she?!  It is not her fault!!  There is no manual on how to be a LBD care giver, written by a successful LBD caregiver.  Why, because there has never been a fully successful LBD caregiver!!

So, LBD caregivers, take note!  Everything is an experiment.  Some work, some don't!  Learn from your mistakes!