Sunday, October 15, 2017

Unvarnished Truth!

I have written this blog from my heart.  I have NOT held back in any way.  I know there are folks that read this blog who are not involved in LBD in any manner.   They read it for various reasons and I appreciate their desire curiosity about LBD and me.  But, if you read this blog, you must understand why I write it.  The purpose of the blog is;  1.  To leave a journal of my LBD journey for my family and friends.  2.  To let other LBD patients and caregivers they are not alone.  3.  To educate the medical professionals about the effects of LBD.   While this blog has been recognized a number of times, that is not why I continue to write.  It's nice to be recognized and have great readership.  But it is not the reason I write.  But, thanks!  

Why am I saying this?  Just to make sure everyone know where I am coming from.  LBD is no cake walk.  it is frustrating, angering, gut wrenching, confusing, and self-centered.  


On another but related note;  My recent issues have made me realize I need more care and I intend to seek a move to Assisted Living after the first of the year.  There are financial reasons for that date, but by then, I will be ready in every way.  This move will also help my Wife by relieving her of some of the responsibilities of keeping track of me 24/7/365.  Also, one of my friends here at Azalea Trace said something to me that made extreme sense!!  He said; "People don't move to Assisted Living in time to enjoy it and benefit from the care it provides."  He is correct!  I have seen people delay they moves to Assisted Living until they are so infirm they are quickly moved to Skilled Care.  They never benefited from Assisted Living because they were so infirm they were past the benefits of Assisted Living!  I see a move to Assisted Living as a life extender, both cognitively and physically!

So, there is the unvarnished truth and why I write what I do.  I hope everyone understands.

Dealing with ANGER!

Many things anger me that would not have caused me any issues before LBD.  Some things are just normal life issues.  Some things that anger me are the way people react or relate to me.   I will admit that I expect things to go the way I want them too!!  (Now, that is honesty!)  And knowing things won't go the way I want them to does not help me deal with people that do not meet my expectations.  Instead, I get angry!  I believe this is all normal for someone where I am in the LBD journey.  It is HOW I deal with this anger that is the issue.

I do not want to be a burden to my Wife or others.   So, I hold my anger in!  I do not address it at all, verbally!!  Instead, I internalize my anger until I forget why I am angry!!   Of course, this time of internalization is accompanied by quietness on my part!  I think my Wife knows I am upset although I do not think she knows why.  She never says anything!  She just goes on being annoying in her own way until I forget why I was angry!!

This problem is exacerbated by the fact the my Wife expects everything to go her wall, all the time.  Before LBD, we discussed these issues.  Negotiated, exercised give and take.  Now, because of LBD, that does not happen.  She has never gotten over being angry at LBD.  Her plan for our lives has been derailed.  That has to be frustrating.  But what about me and my expectations?  And that is where my ANGER starts!

Tuesday, October 10, 2017

I was shocked today!

I preached today for the staff Chaplain here at Azalea Trace.  I am filling n for him for the next few weeks because he is on a Mission Trip to Central America.  I am very proud of him and his Wife and honored to be able to help him this way.

When I was setting up for services in the beautiful Chapel in Willow Brook Court, a man came in to the Chapel.  I recognized him from Independent living but he was not the same man!  In a very short time, Dementia, of what type I do not know, has completely changed this man.  He did not recognize me and I could tell from his actions he felt threatened and unsafe in his surroundings.  He was being cared for by one of the wonderful Home Health Professionals here at Azalea and was in very good hands.  Just the same, his appearance and demeanor shocked me!

How could this seemingly vibrant man go sown hill so quickly.  My Dementia journey has been gradual and fairly gentle up to know.  But he obviously has been run over by a truck named Dementia!

His condition has caught seed me to reevaluate my position and my life choices for the future.  I know my Dementia is speeding up and getting more virulent.  Maybe I will be the man who shocks someone ion the near future.

Wednesday, October 4, 2017

Calling my Wife "Mom"!

We had our weekly Memory Support Group today and Kathryn from Covenant Care was our facilitator.  She leads our group the first Wednesday of each month.  She is well versed in Dementia care and has a heart for us.  She was able to engage a number of our attendees in open discussions about their symptoms and that was very constructive.   She was discussing the fact that Dementia patients sometimes see their spouses as nurses, outsiders, or even their parent!  This answered a question I had!!  I have begun to address my Wife as "MOM"!  For instance, we are in the car, she is driving and I will say;  "look at that Mom!"

I would hear myself say that a wonder, where did that come from?  Now I know.  But, it angered me that I did no see this coming!  I pride myself in understanding my disease and helping other Dementia patients.  Instead, I needed help and Kathryn had it!!   am very thankful for her!!

My symptoms are getting more complicated and difficult and I no longer can self-diagnose them.


Tuesday, October 3, 2017

"I have to get out of here!!"

Many emotions rush through my mind at night because of "Sundowning".  Last night, as I was drifting off to sleep, I was SNAPPED awake by an overwhelming need to run away fro where I was!!  I was in a panic and I knew I needed to get away from the location I was in.  For what reason, I do not know.  But it was a real fear, flight or fight, reaction!!  It passed soon enough and I was able to settle down and go to sleep.  But each time I woke up to go to the bathroom, that emotion was in my thoughts and it continued after I got up this morning.

Today is Tuesday and my Wife has her Leaders Group for Bible Study Fellowship, so I am alone.  I had a number of errands to run and a meeting to attend, so my morning has been directed and I have had little time to just sit and think, until now.  But, now, as I write this, I am trying to understand that "Flee" emotion that I experienced last night.  There is nothing here that frightens me, so they would not seem to be the issue.  Just the same, I have no plausible reason for last nights thoughts except maybe, LBD is just finding another way to mess with me.

Saturday, September 30, 2017

The HIGHS and lows of LBD

Today, I have experienced the HIGHS and lows of Lewy Body Dementia.  Azalea Trace has celebrated Active Aging Week and there has been some wonderful activities all week.  Today, we had Hot Air Balloon rides early in the morning, right here on our campus!   I have never ridden in a Hot Air Balloon but today,  thanks to Azalea Trace we got to experience Hot Air Ballooning.  Yes, it was a tethered ride, but we still floated with only the power of heated air!  We were high enough to look over the stately tree tops and see the Escambia Bay!!  It was exciting and exhilarating!   But the remainder of the day has been depressing and difficult to walk through.

The experience of this morning brought back many memories of the exciting and dangerous things I did during my Navy career.  It all was brought to the forefront of my mind, and those thoughts have illustrated to me that I will never do anything like that again and that my life is drawing to a close.  That does not bother me but it is something that is difficult to deal with and I am not really sure I am dealing with it very well.  I miss my Navy buddies and the camaraderie of those friendships.  I miss not being able to go places, drive, take care of my own issues, like haircuts or clothes shopping.   I miss being independent, capable, and in charge.

I have come to understand Pensacola is my final destination.  It is the last place I thought I would end up, but not the worst place to be.  Right now, the emotions of the day have overwhelmed me and It is time to retreat to the safety of my bed.   Maybe I will address this more tomorrow,

Friday, September 29, 2017

A discussion with my wife

We went to to Long Horn lunch today.  I have been trying to get my Wife to eat at Long Horn Steak House for a month!   She agreed today and we had a great meal.  We also had a discussion about my LBD and how she is dealing with it.   Now remember, my social filters are not functioning!  I was talking about the Memory Support Group and how some of the spouses do not take advantage of the information available about the different dementia's.   I then told my Wife she was not taking advantage of information I had discovered and made available to her.  She then told me this;  I want you the way you were, while understand you need to be comfortable the way you are!

That was an eye opener!!  She brought back to my memory how my Dad reacted to my Mom's end days, suffering with Cancer.  He would say;  "All she needs to do is get up and walk around the block,  Ten she will feel better."   My Wife told me, my Dad did not want Mom to be sick and that was his way to deal with it.   She also said those of us with Dementia are each different just as all caregivers are.  I agree with that.

But I do not understand why a Spouse would not want every bit of information about the disease their spouse had, and then use that information to make the Spouse's life easier, more comfortable, and better.   Denying the fact that the Spouse has a disease does nothing to help that person.  It may make the Caregiver Spouse feel better, but that seem selfish to me.   But, I am not the caregiver.

LBD, and all Dementia's are a tough, confusing journey for both the patient and the caregiver.  I believe the more factual information both people have, the better both people will be able to deal with the disease.  Of course, I could be wrong.

Wednesday, September 27, 2017

The confusion and disorientation continues

Today, while my Wife was at her weekly Bible Study and I was home alone, I was gazing out our patio doors and all of the sudden, I was wondering why the cars I saw did not have front license plates!  Virginia has front license plates and you can get a ticket if you don't have a front license plate!!  Then, it came to me that I was in Florida and not Virginia.   The question then became;  How the Hell did I get to Florida!!??

I spent quite a few minutes contemplating that question.  Then, I realized we lived in Florida.  Things are getting confusing, at least sometimes.


Monday, September 25, 2017

I am not in the present!

All of my conversations revert to my Navy life!  I never get involved in any conversation about events of today!  I can change the topic and flow of any conversation to my Navy life!  Today, does not exist in my mind!!   As a matter of fact, I am not interested in the events of today!

This is not abnormal for Dementia patients, but it illustrates to me, and anyone who cares about me, where I am in my LBD journey.   I am comfortable with my memories and experiences from my 40 years with the Navy.   I am uncomfortable with today's events and I don't like the culture of today's America or the World in general.  So, instead of dealing with things I dislike, even hate, I regress to where I am comfortable,

From what I have learned, this will progress even more.  I am OK with that.  As a matter of fact, I welcome it.  Those around me may not like it, but, that is there problem.  I am a the one with LBD!

Friday, September 22, 2017

The impact of a long term disease on those around you

In the beginning, people I knew were shocked, upset, even sad about my LBD diagnosis.  Now, in many cases LBD is a slowly progressing disease.  Especially with the new drugs that are available If and ONLY IF they are prescribed very early which my Neurologist in Norfolk, Virginia did.    And you should also know that LBD is a cyclic disease.  Ups and downs, that occur in an unpredictable manner.  Then there is "Showtime" that occurs when people not normally in the LBD patient's circle are around.  During "Showtime" episodes, the LBD patient seems "normal".

All this being said, it has been 5 or more years since my early diagnosis and people treat me very differential now.  They seem aggravated when I mention my disease as if they are very tired of me and LBD.   People expect me to have all the stamina, mental acuity, attention span and capabilities of someone without LBD!   When situation overwhelm me, they are annoyed!  Even angry and disappointed with me.  They want me to do things and be in situations that overwhelm me and tire me out quickly and leave me wasted!

I realize it must be frustrating to those around me to look and me and believe in their mind I am not sick!  But, they do not see the total picture.  They have watched me slowly deteriorate so they do not realize it is occurring.  For instance, no one can tell me when my hair turned grey and then white!  It just happened over a long period of time.  Well, that is how LBD has robbed me of mental and physical abilities.

Today after some running around doing some financial things, we w net to the commissary.  My wife likes to keep bottled water around.  We bought a 24 bottled case of water and I cannot carry that any distance at all.  That fact escaped her mind.  The fact that I had to get a cart to take our small grocery load to the apartment was just not in her mind!  She was frustrated with me.  Much like my previous post, she forgets I am impacted by LBD and wants me to be "ME".   When I am not "ME" she unconsciously gets upset.   It is not her fault, it is a normal reaction to a situation she hates.

But, like I said in my last post, these episodes take my DIGNITY from me.  I am reduced to someone who is worthless!

Patience for the LBD patients spouse, family member,  or caregiver is the most important quality!!  Compassion is nice, but patience is mandatory!


Monday, September 18, 2017

Advice for Caregivers and Spouses

Many of you know I spent 40 years with the United States Navy.  I was the Force Master Chief of the Surface Forces, Atlantic Fleet, a Command Master Chief of a Destroyer and an A-6 Air Squadron, Leading Gunners Mate on numerous ships.  The Gunner's Mate Detailer, and Instructor at Gun School, Great Lakes.  As a Civil Servant for the Navy, I was a Gun Mounts and Turrets Tech Rep, The Gun Systems Replacement Manager, the Programs Branch Head, the Search Radar Branch Head, and had numerous collateral duties of note, like the recovery of the USS Cole and the repair of the MCM's in Bahrain.  Needless to say, I had a very impressive, responsible, productive, Navy Career.

Now, my cognitive skills are not what they used to be and it shows, everyday.  The challenge for the caregiver or spouse is to NOT treat me like a mental midget!  A more correct way to express this is to say;  Spouses and caregivers should respect the Dementia Patients DIGNITY!  

I try, everyday, to be helpful, useful, and productive.  If I am asked to do something, I do it to the best of my ability.  And, although what I produce, write, make, may not be grammatically perfect, written the way you would write it, or done in a manner you would have, please don't redo what I did.  If you do not want to accept what I do, don't ask me to do it!   This treatment causes me to be angry, resentful and to withdraw from all contact!

Telling me I did not meet your expectations, through your actions, facial expressions, or comments, does nothing to make me feel useful or wanted.  Instead, those actions invoke feelings of uselessness and give me the idea I am not wanted.

Does this sound a little sensitive to you?  Well, I am sensitive.  I was a powerful man, able to do things most of you can't even imagine.  When I said things, brought forth facts, and made decisions, high ranking Navy Officers and Civilians listened and most often acted!!  Now, it seems there is nothing I can do right and no one that listens to me.

I have lost my Personal Dignity!

If you are a caregiver or spouse of a Dementia Patient, read and heed!

Saturday, September 16, 2017

Saturday night update

As I said in the last post, the MRA showed all was normal as far as the blood flow in my brain.  That was wonderful news.  As the lower dose of Effexor takes hold, it seems my headaches and BP are decreasing, very slowly.  I have dealt with a "Boil" on the back of my neck for 11 days, that required medical attention every other day.  They took my BP each time and except for one day, it was in the 139/90 range.  That is better tan a few weeks ago.  I still get short, intense headaches when I cough or sneeze.  But, all in all, I think things are going in the right direction.  I even went and played Pool last Wednesday.  The first time in at least three months.  I consider that good news since I have been pretty much anti-social for a while.

This may be one of the signature LBD positive swings I have experienced since I was first diagnosed.  I have learned to appreciate these respites and fear them at the same time, because they always lead to a big downward turn!  But, I will enjoy the good times while they are here.


Tuesday, September 12, 2017

MRA Results and other issues

Yesterday, I had an MRA to see if I had any vascular damage in my brain, possibly caused by high blood pressure.  Praise God, there is no aneurism or arterial weakness detected!  While I was not worried, I was concerned.  I can honestly say, it is only God's providence that has kept me through this disease.  That being said, what next?

I asked my neurologist to address the high BP issues.  I do not want to increase my Effexor dosage so some sort of BP med seems to be in order, on my mind.  I truly hate what Effexor did to me and I blame that on the so called neurologist  had when I first moved to Pensacola.  He elevated my Effexor dosage much higher than necessary.  I trusted him and He violated that trust.  Never again!

On other issues, I am still dealing with this "Boil" issue.  I still have a drain in the incision and while it is decreasing, it is still draining.  Having the drain reinstalled every other day in painful and annoying. Hopefully, tomorrow will be the last visit for this issue.

Evenings are getting more difficult.  Noise causes agitation and anger in increasing volume.  More and more, television viewing is bad for me most of the time.  Loud commercials seem to dominate television.  News programs are mostly commercials and inane dribble.  Local news is nonexistent her in Pensacola.   I find myself in bed, earlier and earlier.    Bed is my safe area.

I hope the headaches decrease soon.



Wednesday, September 6, 2017

The Azalea Trace Memory Support Group

We started a Memory Support Group here at Azalea Trace about 6 months ago.  It is made up of individuals that have a dementia or some dementia symptoms.  The basis of the group is self-support.  We discuss our symptoms, how we are dealing with those issues, and get feedback from other group members that either have the same issues or are earlier in their Dementia journey and want to know what the future may hold.  We have had a number of Health Professionals meet with us to educate us on Dementia issues and related health issues like choking, falling, exercise. 

Today, our group had a luncheon with the new Director of Azalea Trace, Ms. Tammy Hardy-Farber has extensive training in Dementia care and is very up to date on the new care methods!  She gave us some information of the new construction of the extension of our Skilled and Assisted Living facilities.  Both of these communities will have Dementia Care Communities.  This is exciting news and very much needed.

I love the fact that our Director and all of the Staff here at Azalea Trace support or Group.  Tammy especial cares about Dementia care since Her Father in Law died of Alzheimer's.   She is a visionary in Dementia care!  We are truly in good hands!!

Tuesday, September 5, 2017

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!!

Thursday, August 31, 2017

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.

Wednesday, August 23, 2017

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.

Tuesday, August 22, 2017

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!"


Monday, August 21, 2017

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.

Friday, August 18, 2017

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!!

Thursday, August 17, 2017

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!

Wednesday, August 9, 2017

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!

Tuesday, August 8, 2017

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!!

Sunday, August 6, 2017

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.

Wednesday, August 2, 2017

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.

Sunday, July 30, 2017

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.


Thursday, July 27, 2017

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!


Wednesday, July 26, 2017

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.

Tuesday, July 25, 2017

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.

Wednesday, July 19, 2017

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.

Saturday, July 15, 2017

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?

Friday, July 14, 2017

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.



Thursday, July 13, 2017

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.



I cannot deal with life and people anymore!

Normal things in life now cause me to get angry.   Today, we went to get the oil changed at the local Subaru dealer.  It is where I both the car and in the past, they have had a good service department.  But, lately, the changes they have made in their service staff has made their service department just another welfare office!!  They have always washed cars as part of the service.  Today, the female service writer, who knows as much about cars as I know about orthopedic surgery,  told us our car was ready.  We paid, and when we went out, I noticed the car was not washed.  I asked the other female service writer if the stopped washing cars after service and she said no.  That pissed me off!   I walked back to our car and told my Wife I needed to leave right then!  Leaving was better than me blowing up!!  At least I could reason that out.

This is just an example of my inability to deal with simple issues in life.  I have lost my temper because of people talk loud outside of our apartment.  I get angry at bad drivers and yell at them, people telling on cell phones and not paying attention to business, and other simple issues.   Things that I believe are wrong make me angry and I react to that anger.

I know this is because of the progression of my LBD.  I also know it is also related to the withdrawal from Effexor.  The question is, what can I do about it?!  I have emailed with my Neurologist, yes that is the new way for a doctor to interact with patients, and she has not offered anything I consider valuable.  But, this frustrates and angers me also, since medical treatment in Pensacola Florida is as good as medical treatment in a mid- level US City in the 1940's!!

So, I am in a struggle that shows no sign of improving.  Maybe, keeping me out of contact with people and society is what we will come too.   We will see.  I am just reporting the progression of my condition.



Tuesday, July 11, 2017

Emotional issues, as they unfold

Especially at night, I have emotional issues that are related to LBD and beginning to impact me more and more.  Doing my "Due Diligence" research about the emotional issues related to LBD.  For instance, I have beliefs, not feelings, but actual beliefs that an individual is taking our money.  Depleting our accounts.  Do I feel this way all the time.  no.  But especially in the evening and as I fall asleep, those beliefs take control of my thoughts.  There are other emotional issues that I cannot remember at this point.

Now, I will tell you, this is normal for Dementia patients.  So, I am normal.  It is a normal progression of my LBD and that keeps me from getting frightened by the symptom.  I believe knowledge is power over this disease.  The more we know about what is going to happen, the better prepared we are to face it.   Websites like LBD.ORG and others are great sources have documented symptoms of LBD.  Issues other LBD patients have dealt with.  We need to have those facts at our disposal!


I am really becoming a HAND FULL for my Wife!

Since I have been off Effexor, I have become more emotional, angry, agitated, dissatisfied, and vocal!! I yell at drivers,  and recently chastised a young mother who was letting her 18 month old son make every effort to become "Road Kill" in a Target parking lot while she tacked on her cell phone!!  If we had not stilled the traffic, that little boy would have been dead!!

I also, recently, flame sprayed a staff member for telling me I did not need to use my cane!!  I believe she is in for psychological treatment!

The bottom line is, I am angry and no longer bashful about letting others know.  I often lament the fact that I hate Florida, the people in the community we live in, and not being with friends I made over 40+ years connected to the Navy!!  I actually feel sorry for my Wife and apologize often!  She is in a terrible spot!!

This is new for recent times, but not new in my life.  When I was in the Navy, I was not bashful about letting people know I had serious doubts about the purity of their gene pools and their parenting!!  But, I am sure my Wife thought those days were over.  Surprise, they're back!!

I just sent an email to my Neurologist discussing this and my BP/ Body Temperature, Urine control, and other Autonomic Dysfunction issues.  I am anxiously awaiting her response.


Monday, July 3, 2017

Loneliness, depression, being alone

Tomorrow is the 4th of July!!  A day that we used to grill with friends, tell Sea Stories, drink beer, and have fun.  Boy, do I miss those days!!  I miss my friends in the Norfolk area.  I miss the Navy connection.  I miss my Church friends there.  I miss being in Virginia.

Yes, Azalea Trace has a big indoor, holiday dinner tomorrow.  We will eat with some folks we are acquainted with.  I say it that way because I have never made any friends here in Florida or at this CCRC.  Since we are younger than most, there is no age connection.  And since Linda and I did not grow up rich, with servants, gardeners, and nannies, we have no connection there either.  And, since I am surrounded by Military Officers, mostly Reserves who never did anything, I have no Military connection.   I am alone, lonely, and with no hope of ever having a friend.

I told my Wife that one of my biggest frustrations is things are wrong in my life, and while I can identify them, I cannot do anything to change what is wrong!!   Life is much more difficult that I ever experienced before.   I miss my life!!

Maybe I am just difficult to get along with!!

Saturday, July 1, 2017

Yesterday was a great day!

Yesterday, at the request of our Grand-Daughter In-Law, we went to the USS Alabama Memorial.  My Wife, Son, and Allie went to tour this great Battleship.  She wanted to get some idea of what I did for 40 years and the Alabama is a wonderful teaching tool.  I have not been on the Alabama for a couple of years and I was very excited to be "Home" on a Navy ship again.  Once aboard, I am young again!  My memories of being a Navy Gunner's Mate, a Master Chief, a Leader, a MAN, come alive.  I don't hurt!  I can run around the ship, bound up ladders, duck through hatches, and know exactly where I am on the ship, no matter what!!  People were following us and listening to my explanations of the systems on the ship.  I spent some time with young and older people, explaining al l the capabilities of the ship and her systems.  I was home!   I was young and alive again!!

Everyone else got worn out, but, at least in my mind, I could have gone on for hours more.  This may have been my last trip to the Alabama.  It was a good one.

Thursday, June 29, 2017

Fear of Death!

As you know, I was a Master Chief Gunner's Mate in the United States Navy.  After that I was a Navy Civil Servant, first as a Tech Rep for Navy Gun Mounts and Turrets and later in management of technical assists for Search Radars and other electrons sensors.  I did many dangerous, exciting things that most men can only dream of.  Some things I did are features in movies and video games.  So what you say?   Well, in the beginning of my career, when I was a young Gunner's Mate, gun mounts frightened me!  Here I was in a large Navy Gun that fired 40 rounds a minute of 5" ammo, each round weighting 75 pounds, propelled by a powder tank weighing 44 pounds.  Again, 40 rounds per minute!!!  When things went bad, they went bad fast!!  I saw live, explosive projectiles have their nose fuze ripped off!  Propelling charges crushed and spilled all over the gun pocket.  Guns fail to fire with the gun barrel hot though to cook off the explosive charge!!

Then, a very good friend of mine was killed, during combat operations in Vietnam, in a MK 42 Gun Mount!  I had to make a decision then to continue my Navy career, without fear, or get out!  I stayed and I was never frightened of death on a Navy ship again.   Death on a Navy ship, would come swiftly, explosively, and quickly.  I knew that and that type of death does not cause eke fear of distress.

But, what I am facing now, is something I have not come to terms with.  When Red Mills was killed, everything became clear to me.  But, now, slowly dieting everyday, nothing is clear to me!!  Instead, like I was when I was a young Gunner's Mate on my first ship, I am frightened, unsure of myself, unsure elf the unknown.  My body is slowly dying and I know that.  My brain is deteriorating, loosing control of my bodily functions and emotional responses.    And it is the slow steady, unrelenting approach of death that is more frightening than the sudden death caused by combat or training.   I have no control of anything.  What I do will not change anything.   am being overwhelmed by Lewy Body Dementia and I hate it.  I hate it because I am afraid.  The unknown is always unnerving.

I believe this is an emotion I have not expressed before on this blog.  And, maybe never out loud either.  It does not help me to express these fears.  But it may explain my recent issues.

Nights are still very difficult

Since I started the Effexor withdrawal, nights have been the most difficult time for me.  I have had some nights when I felt pretty good.  The electric zapping in my in brain was all but gone.  The pressurized feeling in my head had subsided also.  But, the last couple of nights, these issues have returned along with extreme depression and anxiety.   From what I have read, this is normal for those of us who choose to stop Effexor.  Some of what I have read, written by doctors and hospitals that know, tell me I may not succeed in this effort.  I would be devastated by that failure, even though it would not be totally my fault.  Effexor is a dangerous, powerful drug, that is extremely addictive.  It rewires the brain in ways science still does not understand!  Yet, they still prescribe it!  

Last night I felt so bad that I was seriously considering going back on Effexor or another anti-depressant drug, to help me cope.   But, right now, I still have some fight left.

One of the side effects that made me want to get off Effexor was the lack of emotions.  Getting off of Effexor has given me back my emotions.   But, since I did not have any emotions for such a long time, how long I cannot remember, dealing with emotions anew, is a challenge.  Yesterday, a staff member of ACTS, made a comment that plucked a nerve in me.  That individual made a comment that "I should not be walking with a cane.  I looked too health to need a cane!"  Well, that fired me up and I flame sprayed that individual.  I asked that person where they got their medical degree at?  I asked them if they were licensed in Florida to practice neurology?   Yes, I was angry.  Two neurologists and a physical therapist recommended I use a cane.  Seems like a no brainer!!  But, that individual thought they knew better.  I bet that person never talks to me again.

The moral of this story is two fold.  First of all;  I am emotionally raw.  My experience with LBD and my view that I do not have long to live, has stripped me of social skills.  The second part of the story is, individuals that work with senior citizens should learn to keep their opinions in their pocket!!

Again, nights suck!!  My days have not been all that good either.  And maybe, where  I am in my LBD journey will make stopping Effexor or a drug like Effexor, is impossible!    Only time will tell.  And when I know, you will too.

Tuesday, June 27, 2017

Future doubts

When I was younger, and I went to bed, I  knew I was going to wake up in the morning!  I had plans, things I wanted and needed to do!  And don't tell me, you never felt that way because all of us did!  Now, when I go to bed, I have no assurance I will wake up in this world.  Truthfully, many times I hope I will NOT wake up in this world!  I now have no plans and nothing that I need to do.  Instead, all I can see is things and decisions that I messed up!!  Decisions I made wrong, things I wasted money  and time on, and people I hurt.  I see my sins and failures, not my accomplishments or successes!  As a matter of fact, based on the perspective I have now, I can't see anything I did of value.

Yes, hind sight IS 20/20!  It is always easier to judge what you did after it was done.  But, looking back at my life, I am not satisfied with my accomplishments.  I find no value in what I did in my life.  Why, because everything I stood for is being denigrated and trashed by the people I spent 40 years defending.  The people that I considered to be the slackers, the takers, the crooks, and the immoral ones are now touted as the "Greatest, Moral, Brave" ones!  Why did I spend countless years away from my family, doing what the leaders of America said I had to do, to be pissed on now!  Based on the conversations I have with the "Landed Gentry" I live around, I am worthless, never had any worth, and should not be allowed to exist, in America as they, the Landed Gentry, have engineered it to be.

I am also very concerned about the financial decisions I made concerning my Wife's future.  I hope we made the financially responsible decisions that ensure my Wife's financial security after I die.  Yes, ACTS has a program to meet the needs of residents that run out of money, if that was not their fault.  But, I still worry.  And that worry consumes me and robs me of any satisfaction in life.

Life is not as I thought it would be at this age.  I guess I was wrong about that too.




Monday, June 26, 2017

Impact of Effexor withdrawal

Well, it has been 7 or 8 weeks since I started the draw down from Effexor.  The side effects of doing away with Effexor have subsided somewhat.  The "Electric-zapping on my brain has diminished as well as the pressurized feeling.  I am more emotional that I was when I was on Effexor.  That is good, since I hated being a Zombie.   I do cry at the drop of a hat and for no apparent reason.  Not a big "JAG" of crying, but tears and emotional release just the same.  I now cry every time I think of the death of Marcel or Charrie!!  I miss both of them.  And, while on Effexor I was completely impotent, I am regaining sexual function again.  Another good thing.   (Although, my Wife might tell you I am a bit of a pest right now.)  But I am happy.

I am more introverted and more introspective than I was on Effexor.  I am sleeping well and I am not taking naps!  Those two may be connected, but I do not feel the need for a nap right now.

One thing that has surfaced in spades;  My unhappiness with living in Florida.  I have no Surface Navy friends and no Church friends.  I am as alone, socially, as if I lived in solitary confinement.  Yes, there are people her to talk to.  People I have nothing in common with, who have no respect for my life's experiences, and see no value in me because I was an Enlisted man.  I might as well be invisible. I have stopped playing billiards because there is no fellowship there.  Socially, I would be much better in Virginia.  Long term care considerations make this the place I will stay.  But, I am not happy about that.  But, my happiness is not any one's concern.

Being a Effexor Zombie had it's benefits, but I like being connected to my emotions.  So, I will just have to find a way to deal with the negative issues.  Just the same, I am confident that I did the right thing getting rid of Effexor.  More later;

Thursday, June 22, 2017

Quality of life vs Length of Life

I have suffered for over seven weeks as I withdraw from Effexor.  That journey has been documented on this site and is well documented on the Internet with academic papers from MAYO Clinic.  The reason I decided to get off Effexor was some very negative side effects that made my life worse than life without the drug.  The truth is, we have no control over the length of our life.  God determined the length of our life before we were formed in our Mother's womb! (Psalm 139)  But, we can have an impact on the quality of our life.

How, diet, exercise, following our Doctor's advice, not smoking, not abusing alcohol or drugs, and paying attention to our bodies reaction to the drugs we take!  Then, openly communicating the issues we face with our families and Doctors.  Every drug we take, has side effects.  Some are more important than others, but al side effects impact our quality of life.

For instance, I had a total emotional detachment while on Effexor.  Not emotional response to anything at all.  No tears, nothing!  I was also became completely impotent.  Now, after almost eight weeks of withdrawal issues, both of these sided effects are gone.  I am happy!

I would rather live well, enjoying life as it is presented to me, than be a zombie.  Yes, I suffer from some depression and yes, the withdrawal has been tough.  But, I am better off now and I have some other drugs I may try to delete from my treatment regimen also.  Of course, we will have to bounce those decisions off of my medical team.

Also, today was my MRI to determine if the brain damage from dementia has increased.  The Neurologist also wanted to see if I  had a stroke.  I am anxiously awaiting the results.

But now, I am going to relax and rest.  More later.

Tuesday, June 20, 2017

Appology

Recently, I have been a hot mess of negative emotions and anger.  Yes, there are reasons related to the progression of my LBD journey and the issues of withdrawal from Effexor.  That being said, there is no reason for me being as negative and mean as I have been on this blog and in my everyday life.  For this, I am sorry!!

Truthfully, I have just forgotten that Jesus walks with me and I am able to deal with anything in my life as long as I lean on Jesus!  I am human, and I just lost track of where I should be.  SO, I sincerely apologize to those of you who read this blog, the wonderful folks here at Azalea Trace, my Family, Friends, Shipmates and the poor strangers that have seen such a negative person.

I will say in my weak defense that this is a difficult journey that has increased in difficulty recently.  But, that truly is no excuse.  I trust the King of Kings and the Lord of Lords!  There is no other in Heaven or on Earth that I need to overcome anything in my life.

Jesus got my by the neck tonight and shook me!!    I am back on track, thanks to Jesus now, so I again plead for your forgiveness and I thank God for getting me back on track.  No matter what happens, I am Heaven bound!!  Praise God!!

The impact of my LBD on my wife

I am not an impartial observer when it comes to my Wife.  I love her with all my heart and I detest anything that causes her stress, emotional distress, or depression.   We have gone through numerous Navy Deployments, training times, yard periods out of home port, tech assist trips, and other times of forced separation over our almost 45 years of marriage.  She has had to deal with a number of surgeries including my colon surgery.  But, I have seen my LBD journey cause her more worry, depression, and distress than any other issue we have faced together.  Any other challenge we had to face, has an end date!  Each challenge always had a "Get Well" ending.  Even the removal of half of my colon because of a tumor had a prognosis of good health.  But, LBD only has a future of "Bad to Worse"!   And, we are now getting into the "Worse" stages of this disease.

I can see the stress in her face, in how she reacts to life, and how she tried to keep herself busy.  I know her coping skills and trust me, she is using everyone she has, all the time!   There is no help.  No support group and no one she chooses to confide in.  Instead, my Wife stoically suffers today and our future, on her own.   It is just he way.

Me, I am oblivious to the future.  LBD is taking away my ability to see any thing in the future.   Tomorrow is too far away for me to see or think of.   Tomorrow will just have to take care of itself.  I am too busy trying to deal with right now.

Just the same, the thing that pains me the most is how my LBD upsets the Lady I love.

Monday, June 19, 2017

Thanks for the advice. NO, I WILL NOT go back on Effexor

I have thought long and hard, or at least as long and hard as LBD will permit, about going back on Effexor.  Yes, I agree, stopping Effexor may have accelerated my LBD issues.   But that is a small price to pay for the misery Effexor caused me.   The side effects of Effexor are insidious.   But, after a long time on the drug, I realize I was an emotional zombie in every way!

No, I would rather live alone in a locked room than go back on Effexor.   And think about it;  I never heard anyone tell a Heroin addict to go back on Heroin!  And when I was a drunk, no one ever told me that I should not stop drinking.  Am I having issues.  Yes.  But some of these issues are being caused by self-centered, egotistical, morons that believe they are the only people with the ability to reason.

No thank you.  I will NEVER take an anti depressant again.   The rest of the world will just have to learn to deal with me.  Or, they can leave me alone.  

Sunday, June 18, 2017

Let me open up about something

I am totally unhappy living in Pensacola and at the CCRC I live in.   Yes, Azalea Trace is a wonderful, luxurious, high class facility.  Yes, I have family I love here in Pensacola.   But, I am not in an environment that meets my socialization needs.  Neither Pensacola or the CCRC I live in has people that I share anything in common with!  It is not their fault and I try not to think the are being jerks on purpose.  They are rich, college educated, silver spoon people that have never done anything close to what I have done.  They did not grow up poor.  They are not blue collar.   I clearly am!

My journey with LBD has caused me, in increasing amounts and occurrences, to talk, think, and even hallucinate about my Navy times.   My mind is comfortable with the 40 years of my Navy life.   Maybe even obsessed!  I have no one to discuss Navy times with.  No one that was a Ship owner, a Division Chief, who ever had a sea detail station, chipped paint, world 24 hours a day until they dropped to pass a material inspection, repair a gun mount, or shoot Naval Gun Fire Support to keep the Marines save in Beirut or other combat situations.  No one knows what a "Hot Gun, Foul Bore" is or how dangerous that is!!  Nobody cares that my friend GMG 1 Red Mills died in a gun mount explosion off the coast of Vietnam!  No one cares about me, what I did, or who I am.

But all of those thoughts, experienced, fantasies, hallucinations, and events are all that I think of!!  

The problem is, what do I do?  Where do I go?  Is this the beginning of the end?   Do I push to move to Assisted or Memory Care now?  And WHY is any of this on my mind or even my problem?  Shouldn't these issues be someone else's responsibility?   If so, who do I turn too?

Look, I do not want to sound too dramatic, or even crazy, but I need help and I do not see any help on the horizon.  It seems irresponsible to leave me to make my own decisions when I think I am still in the Navy more times than not!    But the truth is, I do not live or operate in the present.  Ask anyone who real knows me.  Like Bo, John, or Jim, all men I play billiards with.  Or Rick, a retired Psychologist who's dog I walk sometimes.

Trust me, I am opening up more than ever before because, for the first time in a very long time, I am frightened!   This week, I intend to find a direction for the future.  If I can.

Two other points;  One, this week I threw in the towel on ever living in the Armed Forces Retirement Home in Gulfport Mississippi  (The Navy Home).  We are here at Azalea.  Linda cannot live in The Navy Home.  I MUST provide for her future.  So, that dream is dead.

Second;  I have not resigned myself to the reality that here is where I will remain until I die.  I will never live or have communion with Surface Navy Enlisted Men again.  Who I was has died.  But, who am I now.  Do I even exist anymore?  I believe I am an empty shell of my former self, with a video of my previous self playing 24/7/365 for anyone to see, if they were interested.  Which they are not.

LBD has taken over me.  Replace me with someone I do not know.  The old me lives in thoughts and sea stories, told to an empty room.

Last though for this post.  I do not even know who I CAN turn too.   I feel alone, lost, and disconnected from life.  Yes, I know my wife, son, grandsons, Allie, my middle Grandson's wife, my Best Friend Jerry and his wife, all care about me.   But, they do not see what I am going through.  They see what the wish I was or what I once was.  Maybe I hide my issues well.  I hate to disappoint them.  They love me and I love them.  But, I need help with the direction of my future.

There, over the last couple of hours,and through at least three editions,  I have told you in detail where I am.  Honestly, openly, and truthfully.   It hurts me to be open like this.  I have tears in my eyes as I am admitting my weakness, my fear, my inability to run my life, my frailty.   I am ashamed of the power LBD has over me.  But, it it what it is.  Lewy Body Dementia.

And "I still have miles to go before I sleep."





The frustration caused by LBD

I am sorry, but I do write plenty about the frustration I deal with in my LBD journey.  Things that should not bother me, DO!  Yes, there are drugs that can help with the.  I know because I am in the sixth week of sheer torture trying to get off of those types of drugs.

Why do I write about these issues?  Because person frustration, anger, animosity, and depression are all part of the LBD journey.  And maybe, just maybe, someone who is related to someone on a LBD journey will better understand their emotional baggage if they read what I am going through.  I have been blessed with an ability to express my emotions and I see that as a strong suit.

Just the same, I realize that has been a common thread for my writing lately.  But, I am where I am and it is what it it!  I just pray it helps others to understand the emotional journey LBD and all other Dementia's cause.  More later.

Wednesday, June 14, 2017

Improving!! One step at a time

Yes, it is 12:30 here in Pensacola.  I took an nap tonight and then played pool.   When I went to sleep at 3 PM, I felt the effects of the Effexor withdrawal.  Extremely cold hands and feet. headache, body pains, electric zapping in my head, and a pressurized head.  I woke up at 5:15 and it took me a while to get fully awake.  I went to play pool and when I cam home at 8 PM, I was starting to feel better.  We had some scrambled eggs and toast at about 9 PM and that really picked me up.

More and more, I feel a little better everyday.  It seems I have turned the corner on this Effexor withdrawal.  Yes, I sill have times everyday when I feel terrible.  But even the level of terrible is getting less.   But, I am having increasing times of feeling better, maybe even good.

I have written before that I read a paper on the Internet from MAYO Clinic that stated  the withdrawal from Effexor was worse than the withdrawal from Cocaine or Heroin!  I never used any illegal drugs.  But I did drink gallons of Bourbon and Beer and I can tell you I never felt this bad.  But, it seems the "hangover" is subsiding.   I remember times when I thought I was going to die.  That was replaced by the feeling that I was NOT going to die!!  Now I think I am going to live.


Tuesday, June 13, 2017

Sorting old photographs

My withdrawal illness has brought about a burst of energy for my Wife to organize and sort decades of family photos.  Why, I am not sure since this has been on her list for a long time.  But, now, it seems to be the number one issue for her summer.  It may offer her an escape from my issues or it may be exactly what it is, an honest desire to get those photos identified and sorted.   Just the same, it keeps her busy and detached from my issues.  I believe that is good!

I have been doing some in-depth research about high blood pressure in LBD patients and autonomic dysfunction.  I cannot fine any connection between SSNRI withdrawal and high BP.   I have found some MAYO Clinic articles about Serotonin and autonomic dysfunction.  But, that was related to an increase in SSNRI drugs dosage not a decrease!!!   My next chase has been to see if SSNRI drugs help the autonomic portion of the brain control BP since my BP spiked after the Effexor drawdown.

But, the bottom line is, as I have stated before, I am a "lab rat".  Medical science has no earthly idea how any of the drugs prescribed for me have impacted me!!   Or, how the withdrawal will impact me in the future!

The truth is, my BP is somewhat better, but not back to normal and I am concerned it will never return to my 120/68 readings that I had before Effexor and the Effexor withdrawal.   Heck, I may not even live through this!  MAYO findings do connect autonomic dysfunction as it related to BP as an indicator of early death due to LBD.   We will see if my experiences track with MAYO's research.

Monday, June 12, 2017

You make me cry!!

We are approaching 350,000 views on this Blog!  It amazes me that you, the readers of my Blog, have found value in the things I have written about my journey with Lewy Body Dementia.   I knew from the beginning I was a "Lab Rat" and that my doctors were going to "Try" different things on me and do numerous tests to see what happened.  I have honestly, truthfully, and openly written about the effects of LBD on me and my family.   It has been an interesting and difficult journey.  But, it has been worthwhile because of those of you who read this Blog and reply to me about your journey or the journey of your loved one.

We are in this together and we can help each other through the trials and troubles of LBD.   I continue to write, even though it is difficult sometimes, because of you!!  Thanks!!

Sunday, June 11, 2017

Lost interest in things that used to interest me

One of our LBD family sent me a comment on loosing interest in things he used to love to do.  Now, he, like me, has lost interest in those activities.  It is somewhat unnerving in that things that once consumed our time, money, and our attention, are now little or no interest to us.   I loved shooting.  I was a big IDPA shooter and liked anything related to Defensive Pistol Shooting.   I was also active in the Friends of the NRA and Navy events.  I loved to cook out on the grill and have medium size groups over to enjoy time together.  Telling sea stories, discussing shooting disciplines, comparing trucks, all kept me involved.   Now, those things do not hold my interest.

Actually, few things hold my interest.  I do research LBD issues and Dementia issues in general including new trends in Dementia care.   But, that is about it.  I do not read, socialize, or play any games with the exception of 8-Ball once in a while.  Instead, I like solitude, quiet, and privacy.

I know other Dementia patients that have the same outlook, so while it is an issue we have to deal with, it is not something we should be concerned about.  Being introverted seems to be normal for those of us with Dementia in general.

On the other hand being alone all the time is not good for us.   We started a Dementia Support Group here at Azalea Trace that gives those of us with Dementia a weekly time to compare notes!!  I recommend all of us find a social out reach that meets our needs, based on where we are on our Dementia journey.

Thanks for the comments and inspiration!!

Saturday, June 10, 2017

New, old emotions

One of the reasons I wanted off of Effexor was that I had no emotional outlet!  I could not cry!!  I was like a zombie!   Well, I have been completely off Effexor for two weeks and in the entire drawdown for 5 weeks.  And boy do I have emotions now.  I can cry at the drop of a hat!  And while I am glad to have some emotional release back, I hope it becomes more controllable in the near future.

Friday, June 9, 2017

Dizzy, High BP, and some left side of my face and body feelings?

I have discussed many of the issues I have suffered during my Effexor withdrawal.   I also talked about my hands being very cold.  Today we rode the community bus to the Commissary and when we returned, I was very dizzy and I was cold and sweaty at the same time.   The left side of my face felt thick and a little numb.  We took a 5 hour nap after we got home and I woke up feeling better.  But, during the nap, it came into my mind;  When do I feel bad enough to push the HELP button?   The thought of going to the Emergency Room late in the evening does not appeal to me.  Needless to say, I DID NOT push the HELP button.  And I do feel pretty good after eating dinner.  My hands are warmer, I am not dizzy, and the strange feelings on the left side of my face and body have dissipated for the most part.   Just the same, I will watch my progress through the night.

Just the same, I am improving as the withdrawal issues subside.  Tomorrow is the end of the second week without and Effexor after a three week draw down.  This has been very difficult on me and while I am sure getting off Effexor is right for me, I have have asked myself WHY I ever started taking Effexor and why in the world the FDA permits this drug to be sold!!

I have been told by neurologists that I am a "Lab Rat".   I have been prescribed drugs where the Doctor said;  We will see what this does.  And some times, we stopped the drug quickly because of the side effects.  Other drugs required numerous increases in dosage that brought on the side effects slowly and in an invidious manner.  Now, after the end of Effexor, I will be on drugs I know help me with limited, manageable side effects.  Hopefully, if I live through this Effexor withdrawal syndrome, I will be on a staid course.  We will see.

Wednesday, June 7, 2017

Autonomic Dysfunction after Effexor

As you know, I went off Effexor in a Neurologist controlled withdrawal over 5 weeks ago.   The side effects of the withdrawal have been difficult at best.  The Brain Zapping, ear ringing, pressurized head, are all issues to be reckoned with.  But, there are some I am dealing with  I did not expect.  For instance, my Blood Pressure has gone up exponentially!!  Before I went off Effexor, my BP ran 120/68.  Now, it spikes at 162/110 and does not go lower that 140/80.  My cholesterol is 160 with a high "Good" HDL level and low bad cholesterol levels.  So, I do not believe that is the cause.  Instead, I believe it is a result of the increased Autonomic Dysfunction issues I have previously been DX with.

Another issue is the fact that Effexor med it so I had no emotional release.   Now, I have emotional reactions to any and every event.  And those emotions may be hyper elevated.  This is something I need to watch.

The Neurologist ordered some blood work to check for a stroke and had set up an MRI for the end of June, to check on the progression of my LBD and to check for strokes.   We will see what we will see.

One other topic;  I have done some research on the Internet about SSRI drugs.  Cleveland Clinic, Mayo Clinic, and others medical brain trusts have nothing but bad things to say about the side effects of SSRI drugs.  Yes, they help with depression and some people really need them.  I venture to say SSRI's give these folks better lives.  But, it was also evident to me that the SSRI class of drugs was over prescribed.  And since, Mayo now says getting off an SSRI is worse than the withdrawal from Cocaine and Heroine!!   In my case, I believe I was prescribes Effexor in effort or at least, had my prescription increased in error.    In any case, I am now dealing with the consequences of this drug and those issues may kill me!!  Oh well, I always knew I was a lab rat.

Sunday, June 4, 2017

Effexor withdrawal Update

Today makes one week since I have been TOTALLY OFF Effexor.  I am improving and the withdrawal symptoms are decreasing.  I still have ringing in my ears but it is not as loud as it was.  I can actually hear my Wife speak.  I still am experiencing the "Electric Zapping" at night.  But again, it is not as intense as it was even a week ago. I am still grouchy, especially at night.  And the loud screaming, asinine commercials on Television drive me to distraction!  Why they believe screaming at me will cause me to spend money, is lost on me.    I also still have issues with my social filters.  If  am aggravated by something I hate, everyone in a 10 square mile radius will know it!!

Tomorrow I have an appointment with my Psychologist,  That will be interesting!!  I bet he learns something about Effexor withdrawal!

The MRI is scheduled for 21 June.  Nothing happens fast in East Lower Alabama!

While I know I am suffering from agitation, some depression, and anger,  I still know getting off Effexor is the right decision!!

Thursday, June 1, 2017

Effexor withdrawal and my most recent visit to the Neurologist

Since I began the draw down of Effexor I have had numerous issues that are well documented on the Internet.    Electric Zaps in my brain, loud ringing in my ears, and head pressure have been the most prevalent issues and all of these are subsiding.  However, my Blood Pressure has gone way up.  162/102 was the highest recorded readings and it has not gone down much.  My Neurologist got me in quickly and my BP was still high, around 150/94.   A month ago it was 118/68 in my GP's office.  She believes it is related to the Effexor draw down.

She did a thorough exam and showed concern over my stability issues that have been progressing even before we decided to get off of Effexor.   She decided to order another MRI, to see if I may have suffered a small Stroke and to check on the Black spots and White spots in my previous MRI's.

I worked with a fellow in the Navy that used to say; "I don't know what's happening, but it is happening fast!"  He may have been right, related to my LBD journey.   So, next week, I will have another MRI and then I will await the results.  I am curious about the Black and White spots.  We will see what we will see.  More later.

Wednesday, May 31, 2017

The continuing saga of Effexor withdrawal

Today is the third day I have been totally without any Effexor.  This is the day, according to my Internet research, that my system is free of any of the drugs that make up Effexor.   From what I have read, quitting Effexor and the withdrawal from that drug, is worse that the withdrawal from Heroine and Cocaine!  In any case, this morning, my blood pressure spiked.  It was 160/102.  The nurses took it manually not with the BP machine!!  They took it again three hours later and it was 158/94.  About four weeks ago, in my GP's office it was 120/68.

Now, we know LBD impacts the Autonomic portion of the brain.  Along with my increased BP, I was cold as an ice cube!  My skin was very cold to the touch, even the Nurse Practitioner commented on it.  She told me to go relax and I took a nap.  I woke up at 5 PM and felt better, although I have not had my BP checked since 1:30 PM..

After the 1:30 PM check, I had my wife call the Neurologist's office and ask for an appointment.  They fit me in tomorrow at 2 PM.  That indicates to me  they are concerned also.  We will see what comes from that, but one thing is for sure, I WILL NOT EVER take an anti-depressant!

Since I got up at 5 PM, I do feel better,  The ringing in my ears is now only in my left ear.  I still have a slight headache, but I have refused to take anything for the pain, since the beginning of the drawdown!  

I just looked over this post and I realized, while I have written it in one sitting, it is very disconnected. That is how my brain is working and that makes sense since Effexor rewires the brain and the withdrawal process tries to put the wires back on the original posts!!   A tough process, as I can testify.

I will keep you informed of the process in hopes that other can learn from my misery.

Monday, May 29, 2017

I feel like hammered dog Do Do!

I was feeling physically and mentally bad for quite some time.  Recently I decided to ask my Neurologist to get me off of Effexor.  I had become convinced that Effexor was no longer benefiting me.  I knew the withdrawal would be difficult, but that was an understatement.

As we started the decrease in the dosage from 225 mg, to 150 mg, to 75 mg, and now to zero, my issues have increased.  Now, I have been without Effexor for two days.  The headaches and head pressurization, whack became terrible when I coughed, sneezed, or tried to blow my nose, have passed.  I still suffer, (and suffer is the correct word)  from numerous Electric Zaps in my brain and ears that sound like gun shots!!  I also have extremely LOUD ringing in my ears.  Now, my ears have had ringing since I was on the USS Mullinnix  (DD 944) in 1969!!  But this makes it difficult for me to hear.  Since the Internet says all of the Effexor will be out of my system Wednesday night, I have hopes these issues will pass.  In a nutshell, I am in misery.

Add to that misery the fact that we have been busy with the High School graduation of our youngest Grandson and the departure of our middle grandson to Boot Camp, and some responsibilities here at Azalea Trace, and you can see that I have not been able to hibernate like I would like.

I think, based on my personal experience and research, that Effexor is  a adequate drug to treat depression in the beginning.  But, like all SSRI drugs, it requires increases in dosage.  And at some point, looses it's effectiveness.  Getting off Effexor is a long, painful process that has not yet subsided. I pray I will start getting back to something that feels like "Normal" soon!!

Sunday, May 28, 2017

There is a difference between pity and respect

For those of us who have any form of Dementia, in my case LBD, how others react to us has an impact on the Dementia patients emotional stability!   Trust me, it is true.  

Now, what do I mean.  From diagnosis to death, our cognitive and mental abilities change.   Some individuals progress quickly, but most of us progress in spits and spurts.   The challenge is to understand where the Dementia patient is cognitively and physically, and then fit your response to where the individual is.   I realize this is difficult for you who deal with us.  But, not paying attention to our condition causes us, the Dementia patient, further frustration!!

I have a Grand Daughter in Law that pays particular attention to my progress.  Of course, she is in Nursing School so she has a good insight into my disease.

The bottom line is, you cannot expect me, or any other Dementia patient to do what they used to do, regardless of how good you think they are doing.  We do not function like we used too or how we would like to!   We will try to meet your expectations, probably to our own detriment, until we are so bad we cannot do anything.

There comes a time when the Dementia patient, including me, run up against their disease and finally stop trying to meet the expectations of others and succumb to the ravings of our disease.  When that time comes, and it has, we need your respect, help, and understanding.  These are not pity.  The simply are the way to help us be part of life while dealing with our disease.

 

Friday, May 26, 2017

Trying to sleep, but my life keeps me awake

OK, I admit that the withdrawal form Effexor is difficult.  And going to sleep is very difficult and I have had to stay up latter than I want to, to get completely exhausted so I can finally go to sleep.   And during that awake time, m mind wanders back through my life.  The things I spent the majority of my life doing, and how useless it all seems to be to the world, my fellow citizens, and the people I live with.  Yes, when I was living the life of a career Enlisted man was exciting, dangerous, wild, and crazy.  And, all of us who served together through the Cold War, Vietnam, Lebanon, Libya, Central America, Iran/Iraq War, and various other then Classified operations believed that what we were doing was important.  Now, I am not sure my 66 years were well spent.

The prospect of death changes one's view of their life.  At least it has mine.  No one really, truly cares, or is interested in what I did.  The people I live with don't even believe I am telling the truth when I try to explain what I did.  To them, if I did not fly a fighter, I was nothing but a low priced enlisted slave.  What I did  had no value.  To be discarded is the worst fate of all.

Thursday, May 25, 2017

Living in a community I don't fit in.

The community I live in is a wonderful, luxurious, community.   I have written about this before.  But, the vast majority of the people that live here are over 80.  The community caters to people of that generation.  Nothing in the way of entertainment, eating venues, or care are modern, up to date, or state of the art.  There is an expansion of the Assisted Living and Skilled Care areas that is planned to start this year.  But, the first shovel of dirt has not been turned and it is almost June.  And while the plan for the extensions of these communities has a publicized Memory Support community, there is no information about these units or when they will be available.  With new Memory Support communities opening in Pensacola, I wonder if we made the right decision, based on the attitude here.

The present community has little capability to deal with Dementia patients.  My efforts to start a Memory Support group for those of us with Dementia was originally met with a brick wall from management and the nursing staff.  Persistence got the group started and now we are getting marginal, cursory support from management and the nursing staff.  But there is still NO publicity in any calendar or in the comment news ether about the group's meetings.  

Another issues is, since the average age is so high and so many of these folks still cling to Independent Living Apartments, there is little opportunity for younger Seniors to move in.   Many of these folks employ personal aids to take care of them in Independent Living apartments.  Sort of a personal, assisted living community!  That coupled with the fact that Azalea Trace is knows as a "Nursing Home" instead of a CCRC, does not help with the recruiting of younger residents.  But the "Nursing Home" reputation is well earned and deserved.

For instance, many people that live in Independent Living apartments cannot walk down stairs, use rotators or electric carts to move around, and if a FIRE broke out on a floor above the first floor, would be TRAPPED in their apartments, doomed to die.

Another issue for me is, the over 80 club that runs this place is also a bunch of retired Military Officers, most of which were reserves that never did anything, and all of them think Enlisted Personnel are personal servants who have no value and did nothing but scrub pots and clean toilets.  Trust me, you can't swing a Cat and not hit an O-6 around here!  (And I bet you do not know what the phrase "Swing a Cat" means!  No one here does, trust me.)

Maybe I am just having a difficult day.  I do have friends here, but no one that I am considered equal too.  I am always the "Burdened" individual in any conversation or situation.  I do many things to help the community including filling in for the Staff Chaplain for services and last year the Christmas Program.

Again, maybe this will pass, when I am 80!  The truth be told, I will be surprised if I make it to 67.