Another health issue

The last couple of weeks I have been dealing with "Boils"!  I have not had a Boil since I was 6!  I have terrible memories of my Mom lancing my boils with a razor blade.  No Novocaine!   But, today, we went to the Urgent Care facility to have this Grande Boil felt with.  Naturally, that meant lancing it.  Needless to say, it was brutal, even with Novocaine!!   The Doctor pressed so hard on the Boil to get some of the stuff out that my neck muscles are sore!!  He told us "Boils" are very common in Florida!!  Who knew?!  I bet the Tourist Association does not include that in the "Come to Florida" brochure!

And, to add insult to injury, I have to go back tomorrow morning to have the "Packing" changed!!

A much anticipated visit!

My Sister, from Cleveland, came for a short visit this week thanks to Her son and Daughter's generous gift of a flight to Pensacola!  It was  Wonderful to see her.  We went to Cleveland last year but she was in the Hospital the entire time.  Since then, she has miraculously recovered!  She looks 20 years younger and much healthier.   We had a great visit, including a big dinner with our Son and His family.  What a great night.

She departed very early this morning and I took a nap when we returned to our apartment.  I am completely exhausted!   Since I am so dependent on my routine, as most Dementia patients are, any disruption is difficult.  Also, you may understand the concept of "Show Time" in LBD patients.  Well, I stayed in "Showtime" for four days!   That wore me out.

Still, I am so happy she came to visit and I would rather have her here for another four days regardless of how tired it makes me.

So, I will recover, slowly.  But I will miss her company for a long time.

Another note;  My MRA is final scheduled for 12 September.  We will see what that reveals, if anything.

More MRA info

The Internet is a wonderful source of information.  I did some research and depending on the type of damage in my rain, if there is any at all, there is an option of using a stint, much like they do for heart blockages.  But, in the brain aneurysm case, the stint strengthens the blood vessel.  Of course, there is also the option for brain surgery that requires opening the skull.  But that seems to be for the occurrence of bursting of the aneurysm.   So, there are options, again based on the severity of the damage.  And again, there may not be any damage yet!  We will just have to wait and see.

What will we do if the MRA show problems?

One of our readers, Ms. D, asked me what I would do if the MRA show an issues in my brain.  The honest answer to her question is; "I don't know."   It all depends on what is wrong and what the odds of of a successful repair.  Of course, there is the issue of General Anesthesia as it impacts LBD patients.   To refresh your minds, it is recommended that LBD patients refrain from surgeries that require General Anesthesia because in more than 60% of the cases, it accelerates the Dementia.  In more common terms, I was told I would not wake up in the same time zone! 

So, the answer to Ms. D's question is;  "We will wait and see."  I have given this much thought since the issues first started.   When I am alone, in bed, I have ran through all of the possibilities.  But, there are still too many unknowns for me to make a definitive decision.

You Don't Have Dementia!!!

I have been told so many times that I do not have Lewy Body Dementia that it has become "Fighting Words" for me!   Today I went to a Navy Cryptology Museum here in Pensacola with another resident from where I live.  He asked me to go because he needed my Military ID care for access to the base!  He was honest about that.  He drove, sort of   Honest, if he can drive a car on the road, I can drive a car in a NASCAR race!!

During the ride home, he told me I did not have Dementia!   How would he know, he was a Cryptologist!?  But, he is old and I let it pass.  But, his comment made me do some research on Dementia.  One of the symptoms of Dementia patients, according to the Alzheimer's Association, is that the person with Dementia, lives in the past they are comfortable with.  In other words, that comfortable past is what they talk about and think about most of the time.    I had just spent two hours talking about my Navy experiences!!  Before that, I spent 90 minutes on the telephone with my BEST Friend, another retired Navy Chief Gunner's Mate,  talking about our Navy experience, old Shipmates, and Gun Mounts!!  Get the picture?  Not to mention that every exciting event in my life, happened in or was related to the Navy.  So naturally, I talk about them anytime I get a chance!

My dreams, what I think about before I go to sleep, what I think about when I am awake, is Navy!!  I am completely unattached to today's world, with the exception to what is occurring to our Navy ships. But, I apply my past knowledge to their plight!

I have most of the other symptoms, but this one is something anyone who knows anything about Dementia should recognize!  Especially someone who spent two hours alone with me!

As Jackie Gleason often said;  "One of these days, POW, right in the kisser!"

Latest test

With the head pain issues and high BP, my neurologist has decided to order a MRA of my brain.  They are worried about possible strokes and the head pains concentrated in the left side of my head as I wrote about before, have them worried.  The MRA test that is ordered looks at the blood vessels in my brain to see if they are clogged or bulging.  Since the headaches have not decreased, I believe this is a good course of action.  I will keep you informed.

How things are progressing

I am BLESSED  to have a Neurologist's Office that is proactive and very caring.  My Neurologist is young and embraces technology.  They have an email portal that enables me to have near realtime communications with the staff.  Since I went back on Effexor, and even during the time I was off Effexor, I kept my Doctors informed of how I was doing and the issues I was having.

I told you before that during the time I was off Effexor, my BP spiked and caused me headaches, dizziness, and other issues like muffled hearing.  Well, the BP is lower but not where it was before I went off the mega dose of Effexor.  That is because of the autonomic issues in my brain due to LBD.  However, my Neurologist is worried that the earaches that increase when I sneeze, cough, exert myself, and get my head lower than my waist, may be a symptom of something going wrong in my brain, de to the increased BP.  So, they have me monitoring my BP and headache location and intensity and then reporting it, daily, on the email portal!!   Not bad.

The head pain is located around my left eye, left forehead area and radiates behind my left ear.  It intensifies when I cough, sneeze, exert myself, or get my head lower than my waist.  Why, I do not know.  However, the neurologist told me in an email she was probably going to do another brain scan and possible put me on a mild BP med.  Makes sense to me.  The good part is, I do not have to go into the office to get this information!!  Isn't technology wonderful!!

Back on Effexor; Update two

It has been a couple of weeks since I went back to taking a low dose of Effexor XR.  Many of the negative issues are gone.  But the headaches that come on when I sneeze, cough, or bend down with my head lower than my body are still there.  Those headaches are sudden and sharp, located in my forehead area and behind my left eye.   My BP has dropped to 135/85 when I am sitting in the chair, an improvement over the 160/110 readings before I went back on Effexor XR.   This issue is directly related to the Autonomic Dysfunction issues caused by LBD.  I am a text book case!!  The Neurologist is concerned about them and is considering placing me on a BP med and ordering another, more specific, brain scan.  I agree with both of these approaches.

I am also experiencing agitation, anger, and angry outbursts, but not as severe as I was before I went back on Effexor XR.   This is an balancing act.  Getting me back in physical and emotional balance while trying to retain some emotional release.  I do not envy my neurologist!

A pending trip

Our Middle Grandson is in Army Boot Camp at Fort Benning Georgia.  This weekend is Family Weekend.   He is close to graduation and I guess the Army does things different than we did in the Navy in 1969!  We are going up, alone with His Wife, and Parents.  It is only a 3 hour drive, so that part is good.  But my Wife's preparations for any trip, be it a week or a month, is a painful litany of lists, walking back and forth, looking in every nook and cranny in the apartment, and asking me a hundred time what outfit she should wear.   She has always been a very nervous traveler.  And it has always bothered me, but no, with LBD, her gyrations now drive me crazy!  She has to pack enough for a month in the arctic!   I take two pair of skivvies and a tooth brush!  But the most disturbing part for me is it has lasted ALL day!!  And now into the night, my most difficult time.   I have tole her this many times. to no avail.  She does what she does!!  She wants to be equipped for any happenstance!  Heck, I never took as much stuff on an 8 month deployment as she does for a two day trip!!

I hate travel now.  I never really liked travel, but now it is a bridge too far and the preparation is too painful.   But, once there, I hope we will have a good and interesting time.   Until then, I have to endure the skittering around and the constant quest to take more things!

Neurologist visit today

We met with my Neurologist today.  She is a caring, professional, medical professional that I respect and trust.  We discussed the unfortunate Effexor experiment and how I am doing now that I am back on a much smaller dosage of Effexor.  I AM doing better but she reserved the right to increase my dosage slowly and cautiously as we see how I progress.  My BP was down, now 130/80.  Much better than 160/110!!   I am also becoming less agitated and grumpy.  All good things.  I am having less issues regulating my body temperature and  I am having less issues regulating my bowels.  SO, things are getting better.

We also discussed the brain CT scan that was done a few months ago.  She was able to get the previous scans from my Virginia Beach Neurologist.  The comparison shows some deterioration, but not major deterioration.   The "Black Holes" are still there and increasing some.  Again, that is to be expected.

It was a production, informative, visit.  I am feeling better and I realize I was foolish to try to get completely off Effexor.  I promise I will never try to play Doctor again!  Trust me, the three months of misery taught me a valuable, painful, lesson!!

Back On Effexor; Status Update

I have been back on Effexor (37 mg) for three days.  The Brain Zapping has stopped.  That is a wonderful thing!!  I have not had my BP taken, so nothing to report there except my ears are not as clogged with pressure.  So, that is positive. I still have headaches but not as severe and they go away if I lay down.  I am still grumpy during the day, but after I tale my Effexor at night, I get more mellow.  All positive so far.   I have an appointment with the Neurologist this Tuesday, so we will see what that brings.  More later.

Back On Effexor

As I wrote before, the grand experiment of stopping Effexor has come to an end, today.  I went through a controlled draw down of Effexor starting 14 May.  I was on 225 mg of Effexor, a very high dosage according to my Neurologist and what I have researched.  The plan was to reduce the dosage to zero over 3 weeks.   May 28 was my last day on Effexor.  The side effects of stopping this drug have been terrible as I have written.   Yes, I did regain my ability to express my emotions.  That's has been a good and bad issue.  I also regained my sexual functions.  But, the autonomic portion of my brain, which had been diagnosed as dysfunctional, went completely wacky.   My BP spiked in the second week of the draw down causing headaches, ear ringing, loss of hearing, and severe dizziness.  I also experienced difficulty regulating my body temperature.

So today, I took my first Effexor pill in 10 weeks.  I am on 37 mg, a far cry from 270 mg.  The goal is to return my BP and other Autonomic functions to as close to normal as possible.  If I have not written this before, Effexor has been found to have a positive impact on Autonomic Dysfunction.  That discovery was a surprise to my Neurologist and me.

My hope is that I will retain some emotional release and some sexual function along with regulating the Autonomic Dysfunctional issues.  Again, we will see.  I also hope the Brain Zapping will subside! While it is less than the beginning of the draw down, it is still there, still intense, and still annoying.

So, the gran experiment is over.  I gave in or gave up.  I cannot defeat Effexor or live with the damage it caused me.  I wish I could tell the Neurologist that increased my dosage to the dangerous levels, what I think of him.  But, discretion may be the better part of valor.

I will lee you informed.

I have decided NOT to fight anymore

I was trying to go to sleep last night, and as always, I was reviewing my day, my month, and my life.  It came to me, that is is time that I stop fighting.  No, not Fist Fights, but that constant emotional, violent, interaction with people, things, environment, and events that make up life.  For instance, a couple of weeks ago, I got extremely upset with the local Subaru Dealer's Service Department.   And, I have had a running issue with the maintenance department here at Azalea Trace.  It came to me last night;  I am flailing against Windmills! 

I cannot change anything or anyone.  So, why try.

And, since I have had some serious BP issues lately, the stress of fighting everything I used to think was wrong, unjust, or unfair, is not good for me.  For instance, today after Church, I went to the Nurses Station to get my BP monitored because I was dizzy along with all the other BP issues.   I cannot extend my life.  What I want to do is improve how I feel while I live!  Like I have said before, I am tired of feeling so bad!

So, I am going to try to let life proceed on it's own without my intervention.   I am just not going to fight anything, anymore.

Noise makes me angry at night

My wife has had a summer project to organize 45 years of family photos!  She has worked very hard on this project and often chooses to work well into the night.  I understand she wants to get this project completed.  But, believe it or not, photo organizing can be very noisy!   And the noise is amplified as the night progresses. 

She is up and down, tearing papers, opening and closing photo albums, in an increasing crescendo as the night progresses.  To accomplish this project, she required the television to be ON!  Not that she is watching it, but she likes the back ground noise.  Well, there are some commercials on the television that are very loud, with people screaming, that annoy me terribly.  With all the photo albums spread all over the couch coffee table, and floor, my wife cannot find the remote to mute the sound when these terribly annoying commercials attack me!  Get the picture?!

I realize, now that it is mid-morning, that it is Me that has the night issues and not her.  But, that does not help me at night.  More and more, I realize I need to be in Assisted Living/Memory Support for my sake and hers.

LBD is picking up steam!

I give up!

Today, I decided to go back on an anti-depressant medicine.   The brain-zapping has decreased but nit stopped.  My blood pressure has not even began to go back to where it was before I went off Effexor.  My ear ringing has not decreased, and I am agitated and angry most of the time.   Hopefully, going back on an anti-depressant will help me back to what used to be normal.

As far as my BP, my research has revealed that Effexor does help with Autonomic Dysfunction, so maybe that issue will get better.  I also hope the brain-zapping and ear ringing goes away.  But, I mostly hope my anger and agitation go away.   Being difficult with my Wife is not good and not the way I want to be.

I sent an email to my Neurologist late this afternoon.  I am curious about her reply and drug of choice. I gave her my preferences;  No weight gain, limited sexual dysfunction, some resemblance of emotional release, and as low a dose as can be effective.  We will see.  Soon, I hope.

How I see things

Individuals with Dementia, especially Lewy Body Dementia, have perceptions that are not true or even based in a loose interpretation of the  facts.  I suffer from this.  It may be related to hallucinations.  I am not sure.  But, I know I have beliefs that come and go, that are not true, even though I think they are.  When do these perceptions occur?  Mostly at night, and especially when I am trying to go to sleep.  The perceptions cause my heart to race, my agitation to increase, and also cause me to get angry!  None of these are good for me. or anyone around me.

One of the issues of perceptions I have written about before is loss or theft of our savings and money in checking.  Truthfully, I do not manage our finances or even understand them.  But, at times, I am sure someone has their hand in our cookie jar!!

Another perception I have is no one really cares about me!  This normally manifests itself as a feeling of being abandoned, unwanted, and as a burden to everyone around me.  During these times, I want to be alone, living away from everyone, and isolated socially.  This is strange for a person who once was a hyper extrovert!  But, it is a perception that overwhelms me every night and most times I lay down to take a nap.  I have this all consuming feeling of being useless, unwanted, a burden, and someone everyone want to be rid of!   This issue has put my wife under extreme stress, even though she tries to hide it.  I have not discussed these perceptions with her, but she sees them.

We have an appointment with my neurologist in two weeks.  My views  will leave there with some new anti-depressant drug to try.  I am clear enough to know being off the anti-depressant is not working!  I have tried to research some of the anti-depressants out there, but I have had no success.

I believe and even hope, that sooner, rather than later, I will be living in Assisted Living, alone, away from noise, screaming television commercials, and people.  But, because of policies here where we live, that will have to wait until January 2018.    And no, I don't think they give waivers.  

Trust me, the later innings of this LBD game are brutal!!  And, a slough as I WAS,   I am no longer able to battle this foe.  I am defeated both mentally and physically.

I am extremely tired of feeling so bad!

My head is pressurized,  cannot regulate my body temperature, I have no idea what my BP is because I quit taking it weeks ago, but my hand and feet are freezing to the touch, My back hurts, I am having problem hearing because my ears are clogged, I ache all over, and I feel as bad as I have ever felt in my life.   Truly!  I did not feel this bad after my colon surgery!   I am also having increasing issues controlling bowel and urine.  I have had these issues in the past but they are increasing.  Emails with the neurologist have not been fruitful and my GP got her degree from a Cracker Jack Box!    Real medical care in Pensacola, or every south of Atlanta, west of Miami, and east of Houston, is nonexistent!  Not to mention, most doctors I deal with don't even believe or care that I am suffering.

Am I overstating things?  I don't think so.  After 6 years in this lost land, I have yet to find a doctor of any type that I would trust to lance a boil!  Honestly, I trust Navy Corpsmen more than I trust Doctors in the South!!

The unemotional truth is, I am getting worse.  The LBD is progressing and I am feeling the results of that progression.

Yesterday, our Grand Daughter in Law, who is an RN student came to visit.  I really love her and appreciate her attitude towards my disease.  She real cares about ma and asks probing questions to determine how I am doing.  It was great visit.

So, how this goes is anyone's guess.  I am going to contact the neurologist again and see if there is nothing we can do to help me feel better.   I do not feel confident this will succeed.

I just emerald my neurologist with all this info.  We will see what tomorrow brings.

Perceptions verses reality

Recently, I had our Subaru serviced.  I had it in my mind "Perceptions" that the service was not done correctly.   That "perception" has haunted me and upset me the last few days.   I even sent a rather "Hot" email to the service manager.   I tried to tie a nap today and my "perceptions" kept me awake and agitated.   So, I decided to open the hood and do my own inspection.  I found out I was wrong.  My "perceptions" were incorrect.   I sent the service manager an email apologizing for the portion of my complaint that I was wrong about.

The LBD issue her is, my mind manufactures issues that do not exist!   It is normal and expected, since I have done my research on LBD.  But, it is still very upsetting and completely impossible for me to control!  Only when I am in a phase of being as near normal and cognizant of reality as I get, can I reason out when I am wrong.  The question is, will I fall back into my "perceptions" as the evening becomes night?

Death, comes to all of us

Unless Jesus returns soon, and he may,  we will all face death.  That is, our passing from our earthly body to our Resurrection body.  The make up or that Resurrection body is determined by our relationship with Jesus Christ.

Think about that.  I do, often!  You either believe Jesus was the promised Messiah that died for our Sins and who's blood washes us clean.  If yo believe that, you will stand before God, represented by Jesus, the King of Kings and the Lord of Lords.  If you do not believe this, then you eternity will be torture.  Again, the time to decide what you believe is right now!

I have come to the point that many of the entertainers I liked have died.  I don't much like what they call entertainment today.  Most of my friends, family, and professional icons are dead!   My mentors, leaders, my friends, those who taught me, trained me, corrected me, and encouraged me are all gone, or almost all gone.   I miss them, their friendship, mentorship, and truthful, honest opinions.  I have very few people I can turn to for advice, guidance, strength, and friendship today.

I am a dinosaur.   Extinct, looked down on, treated with disrespect, misunderstood, even despised!  I have nothing of perceived value to add to the world, according to the folks I live around and the world I live in.

I have written about past friends that are gone;  Jim Smith, Bill Mowery, Vern Van Matre, Harold Wheeler, Kenny Colden, Joe Donnell, Dave Kelly, My Dad, Pete Schaffer, Sonny Mills, Harry Fresch, My Mom, and so many more that the emotions are overwhelming!!

Soon, I will see many of these folks.  How do I say that?   Since I stopped taking Effexor, my emotions have returned and also by perspective of the progression of my disease.  Effexor held me in a place of suspended emotional animation.  I was a Zombie.  But, now, along with the tears, comes reality.  I am OK with that.  Maybe even at ease with it.

I have sinned.  But Jesus has washed my sins away.  I have done some things of value and some foolish things.  But, only what I did for God will stand.  I am sure of that.  And I am glad of that also.

We recently went to the Seacrest Wolf Preserve n Florida with our youngest Grandson.  It was a surprise High School graduation gift.  We took the VIP tour and had over three hours ,just the three of us, alone in wolf families.  Many of the wolves came up for petting and some of them actually kissed us.  The wolves particularly liked my beard and liked to "Kiss" me.  While we were with the arctic wolves, the tour guide told us the Alpha Male would not come out to us.  He also said the Alpha Female probably would not make contact with us.  Well, the Alpha Female mauled me for attention.  She even laid on her back and let me rub her belly while she gently chewed my forearm.  The Alpha Male came close to me to watch the love fest.

The tour guide said I must have put off some "Positive Vibes".  The truth is, and I did not say it then, is;  Animal know when humans are sick, and maybe approaching the end of their earthly life.  I believe that is why I was treated so well by all of the wolves at Seacrest.  Again, it's OK with me.  I have had an exciting life.  Done things most men can only dream of.  I have had a wonderful Wife to share my best time with and a Son I am proud of.  The end of earthly life is the beginning of Heavenly life!!  I am ready!

Why do I write this?  It is part of my LBD journey and where my mind has been for awhile.    Thanks for sharing this with me.

Evaluating loneliness

I have written before, may times, about being lonely.  I have no one to compare life's experiences with.   As a Navy Enlisted man, we call that telling "Sea Stories".  Now, as a primer to Sea Stories, I need to educate you that all Sea Stories begin with; "This ain't no shit"!   I talked with one of the few fellow retired enlisted men here, but he has nothing to talk about!  He never did anything, went anywhere, influenced anything or anyone, in his 20 year career.   What the Hell did he do?!  What a boring asshole!  I don't think he ever got drunk or hit anyone in fight!

My wife is tired of my sea stories, even though I have told her things I NEVER told her before!  Those things must have skilled my mind before now!  But, I have no one else to talk too.  This does not help with my mental issues related to my LBD and the terror of Effexor withdrawal.   Yes, I know I am flogging a dead horse!!  But, I am lonely, bored, and without mental stimulation.