Saturday, July 20, 2019

I threw three pots today!

Yes, that is correct.  I threw three pot today!  A few months ago we went on an organized trip to a museum with the promise of making some "Pinch Pots".  The pot making was fin and I saw some wheels in the facility for "Throwing" pots and I told Linda I would like to do that.  She found a wonderful organization here in Pensacola called "First City Art Center" that offers instruction in many forms of art.  Glass Blowing, Pot Throwing, other pottery forms, to name a few.  She signed me up for a two hour introductory course court that met today.  There could have been three students.  But, I was the only one, so I had one on one instruction from a wonderful instructor named Pearl.  She was a delight!  She not only was an accomplished artist but she was a very patient teacher!  She went step by step, corrected my numerous mistakes and even bailed me out of some serious issues with "Centering"!

I had a wonderful time and I managed to make three different pots.  Two bowls and a flower pot.  Pearl will glaze them, and fire them and then call us when they are complete!  What a great experience!!

How did I do.  Pretty well!  I am very tired right now and I know bed is not far off.  But for almost three hours, I was able to pay attention, perform her instructions to a fairly good level and make a product I am proud of.  But, I am mentally and physically beat!  I did not eat dinner because I did not want to be with anyone.  I need to be alone, in the quiet of the "Cabin".   It was good to do something I have never done before.

Monday, July 15, 2019

Outings are getting more difficult

I have written about this topic before and recently, but it is getting more and more difficult for me to leave the confines of Azalea Trace.   Just getting in the car and going on the roads causes me agitation.  People just can't drive!!  They text, talk, eat, do anything but pay attention to the road around them.  And, if there is a stop light, forget it!  They zone out.  Then there is the destination.  A doctor's office, any type, is painful at best.  People talking, all around me.  Mostly stupid people.  You would not believe the conversations I hear!  Ignorant people trying to make sense of simple things!  I am surprised they are potty trained!!  Maybe they aren't!!!

I am not trying to be humorous here.  These are my REAL thoughts!  And those thoughts cause me to get angry, frustrated, and very anxious.    I once was an extrovert.  I was energized by crowds of people. Now, I want to be alone, with just a few people I know, like and trust, if anyone.  Again, the NUEDEXTA helps me control the anger.  But it does not reduce it.  So, I am left frustrated and agitated. That makes me tired, and running for the "Cabin".

The bottom line is, my experience with LBD is moving into a more difficult phase.  Even Zeus, our 4 year old Chihuahua knows it.  He clings to me when we are together and now demands to spend nights with me in the "Cabin".  He knows something other deny.

Thank goodness my Wife understands this.  But, she is the only one.

Today, Linda had an eye exam.  I waited in the very busy waiting room.  There had to be 25 people in there.  Most of them dumber than rocks!   All talking loud about things they had no knowledge of.  They could not even pronounce words right.  A woman was trying to tell a fellow her granddaughter was in Suffolk, Virginia.  At least that is what I got out of her statements.  He did not understand her and she said Suffolk like it was a soap brand.  So, I moved seats, to deal with a woman with a young girl doing splits on the carpet and making a vied of it with her description of what she was doing, on a smart phone.  Trust me, the phone was way smarter that her, or the adult!  In anywise, I sat there for an hour!  When my Wife was done, all I could say was; Take me home!

I am all for intelligence tests for voting!!


Tuesday, July 2, 2019

The Weighted Blanket WORKS! And other issues

Yes, it appears to work.  I have had two very good naps and one night's very deep, restful, sleep.   I do not toss and turn as much as I did before the weighted blanket, so I sleep deeper.  As a matter of fact, I did not get up once last night, that I remember.  Now, this is only the second night of sleeping with my new weighted blanket so we will see if the success continues.  but so far, so good.

Tonight, when we went out for our nightly walk, around 7PM, we ran into large groups of people coming back from the dinning room.  They were loudly talking and having a good time.  The group had visitors and they were touring the facilities.  They walked slowly, blocking the hallways and not paying attention to anything or anyone around them.

Now that I have set the scene, picture me and my Wife, trying to walk for exercise!   We diverted to another direction but ran into more revelers.  We made more u-turns and still ran into congestion.  We finally moved to eh second floor and the crowds thinned out.  But by then, I was agitated.

It is not that those people were doing anything wrong.  They were having a good time with their family and friends.  The issues is how LBD impacted me when there is noise, groups of people, and disturbances to my routine.  It is ME that has to make adjustments not the others.  I realize that now, that I am calmed down, sitting in "The Cabin".

I told Linda I needed to spend more time in "The Cabin" and less time exposed to people.  She is beginning to understand that.  I realize she wants me to be as "Normal" as possible.  Do things we always did, go places, see things.  But more and more, that is becoming a bridge too far.

I was not agitated enough to get violent tonight.  Just agitated enough to be bad company.

More and more, I realize LBD is winning.   And I feel so alone in this battle.  My wife does her best.  But there is no support group for LBD caregivers near us, nor is there a support group for LBD patients.   There is no support groups for Dementia patients or caregivers in our area either.  We have the support group we started here at Azalea Trace, but I am the facilitator of the group, so I get very little help from the group.  As a matter of fact, I am exhausted when the group is done.  We have no staff involvement, even though it was promised a long time ago.  Covenant Care stop supporting us over a year ago.  So, we are on our own.   Maybe that is why I feel so alone in my journey.

Monday, July 1, 2019

Weighted Blankets?!

I was watching TV with my Wife and a commercial for "Thunder Shirts" for dogs came on.  I blurted out; "Someone needs to invent a product like that for Dementia patients!"  My beautiful, intelligent wife said;  "Look it up on the Internet!"  I did and it lead me to a night of research.

I had heard of weighted blankets before but I dismissed it as junk science.  A gimmick!!  Boy am I wrong.  I discovered that it has been extensively researched and weighted blankets help many of us with anxiety, blood pressure, agitation, and calming down to go to sleep.   People with Dementia, Parkinson's, Restless Leg Syndrome, Autism, and Turrets Syndrome to name a few, have benefited from the weighted blanket.  Even the National Institutes for Health recommend this therapy.

Let me make one IMPORTANT note here!!!   NIH and others recommend you check with your doctor BEFORE using a Weighted Blanket!!

Much of what I read said weighted blankets and throws were good for sleep and lounging in recliners or on the couch.  There is even a formula based on the person's body weight for the amount of weight in the blanket.

I purchased one, received it very quickly,  and I took a nap under it today.  It is calming, relaxing, and after I adjusted to the weight of the blanket, very comfortable.  Tonight will be my first night of sleep with the weighted blanket, so we will see if I really sleep longer, deeper, and better.

As I have written before, there is much information about what we are experiencing on the Internet.  Some of it is JUNK.  But much of it is vetted and good for us to investigate.  Look for recognized sources and numerous endorsements from accredited medical organizations before your try anything.  And, check with your Doctor!!

Will this help me?  We will see.


Wednesday, June 19, 2019

Old Shipmates are the BEST therapy

As I have written before, my best friend Jerry has been my lifeline as long as I can remember.  We talk every week for at least an hour.  Mostly we talk Navy things.  Our Navy!  Sometimes football or other things of interest, but mostly Navy Gunner'a Mate talk.  Then there is my very good friend, Doc Wolf.  He and I were on the USS Stein together and he calls me to cheer me up and get me on track often.  He put me in contact with a now, not so young, fellow Stein shipmate, who called me today.  We were on the phone for an hour!  Steve was a young, misunderstood, Gunner's Mate when I came aboard the Stein as a GMG1  It was my second tour on Stein and things were pretty bad when I returned.  The GMG1 I was relieving was incompetent and self centered!  And the young Gunner's Mates that worked for him suffered because of it!

I quickly discovered that everyone was very wrong about Steve.  Yes, he had his own way of doing things.  But, it worked!  He did great work, on time!  He was dependable, eager to learn, and had great value to the Navy!  I realized he was someone the Navy needed to keep!  As it turned out, Steve found out he and the Navy were a good fit.  He reenlisted, went to Mk 13 Mod 4 Guided Missile Launcher school. made Chief, then later, Warrant Officer and retired from the Navy as a CWO4 after 26 years of very successful Naval service!

I had very little to do with his wonderful, successful career, except realizing how great a Sailor and Gunner's Mate he really was.  Of course, a blind man on a galloping horse should have seen that!!

I am very proud of Steve and honored he called me today.  He made me feel better than all of the drugs and therapy I endure.  It was a great day!

Saturday, June 8, 2019

I HATE nights!!

On the outside, it appears I have had a fairly successful life.  Had a good Navy Career.  Accomplished some good, even interesting things.  I do have a wonderful, beautiful, very intelligent wife.  Our son is a success in the computer industry and he has brought me much happiness and pride.  So, you would think, my mind would be filled with the good things of my life.

But nights, are evil for me.  My mind continuously runs replays of all my failures, all my mistakes, the very difficult times of my childhood, the times I made mistakes, did not do what I should have, and every other bad event in my life.   Every night, I am tortured by my short comings and failures!!  Those thoughts tell me I failed GOD and my family as well as the Navy.  Those thoughts tell me I was an unwanted mistake of my unwed Mother.  They tell me I am worthless, unwanted, and abandoned. They play over and over in my mind until I finally fall asleep after hours of tossing and turning.

Each night, real events of my past from as far back as 3 years old are played out in my mind as if they had just occurred!  They are real to me in that moment and the pain, embarrassment, guilt, and rejection, flood over me in explosive waves.

Seldom do I just go to sleep.  There are almost always mental arguments, insults, regrets, mental recriminations, and all the anxiety and depression these thoughts bring me.  I know it is the LBD torturing me.  But that does not help.  Sometimes, after a couple of hours of tossing and turning, I get up and play games on the computer to try to get my mind off of my past failures.  But as soon as I get back in bed, BANG!!, the bad thoughts attack me again, and again, and again.

This has increased in recent months and is now very difficult to combat.  I do not know what the answer is.  Maybe there is not an answer.   LBD is more than memory loss, difficulty moving, and orthostatic hypotension.  It is mental torture that comes when I am most defenseless.

This is the first time I have openly disclosed this issue, in any manner.  I hope being open helps others deal with their inner tortures, if they have them.

Friday, June 7, 2019

The impact of Lewy Body Dementia

I read an article yesterday, about a long term Miami Newscaster that committed suicide because he thought he had LBD!  He was in his mid-fifties.  His mother died of LBD and he had another relative with LBD.

Of course, you remember Robin Williams committing suicide because he also had LBD.

I know as well as anyone the personal impact of LBD.  From the time the first symptoms show up, your life is permanently, irreversibly, changed!  Everyday, something changes in your ability to remember, do things, communicate, walk, interact with people, and even be intimate with your spouse.  Soon, you have to stop working because you simply cannot do what you once did.  Driving is a thing of the past, as is the freedom to do what you want when you want.  I can't even get a haircut when I want to!

But, the most maddening thought is that things will only get worse!  And I believe it is that thought that drives people with LBD to suicide.  But, there is hope.

I still believe being in a support group, surrounded by other Dementia patients, is encouraging, and empowering.  Discussing how we overcome our issues, laughing at the things that we encounter helps me, and others, cope with this disease.

The story about the Miami Newscaster hit me hard.  I believe suicide is not an option.  I know mutual support from other Dementia survivors is.

Look, I have spent many quiet hours alone, thinking about this issue.  I believe I am tougher than LBD, as long as I depend on GOD to get me through it.  I cannot face this disease alone and GOD helps me everyday.  But HE also places people in my path that help me.  I encourage you to seek GOD first.  And then you will see all the support HE has provided.  LBD is tough, but we are tougher.


Wednesday, May 29, 2019

Memory Support Groups

I personally believe there are not enough opportunities for those of us with Dementia's of any type, to get together and discuss our personal reflections of our disease.  Being together, openly discussing our personal issues, in a secure, non-attribution environment is therapeutic and cleansing.  Each of us have many issues we are dealing with.  Many insecurities caused by our Dementia journey.  Discovering that another person has similar issues, fears, concerns, and experiences, helps us understand the we are NORMAL!  Yes, we are normal, considering the disease we are impacted with.

Cancer patients have support groups at just about every hospital in the country.  Alcoholics and drug addicts and even over weight individuals have support groups.  And individuals impacted by Dementia, and their care givers, need support groups too.

We started such a group here at Azalea Trace three years ago.  We are still going strong, supporting each other, and acting as sounding boards for each other's issues.  Some of our founding members have passed away.  Others are now too far along in their journey to attend our weekly meeting.  But we have gained new members and we will continue to grow because we meet each other's needs.

You do not need a professional to start a group.  All you need is a will to help others.  The National Institute of Health has numerous pamphlets about most Dementia's and also regarding care giving and research.  The Alzheimer's Association and the Lewy Body Dementia Association are also full of information you can use to educate Dementia patients and their caregivers.  Another great asset is a book titled, "The 36 Hour Day".  I have also found that local attorneys, doctors, nurse practitioners, and psychologists are all wiling to address groups of Dementia patients and their caregivers.

I strongly encourage you to start a support group in your area if there is not one already in progress.  If there is one, join it!You will be enriched and comforted by the camaraderie.

On a personal note;  Our group is a lifeline for me and Linda.  Everyone in the group has so much personal experience to relate to the other members of the group.  When one of us has an issue, and finds a solution to that issue, we share it wit the group so the others do not have to "reinvent the wheel" when they encounter the problem.  It is amazing how many times we answer issues before the occur.  I am indebted to each member of our group.  The have kept me going!! Thanks.


Wednesday, May 22, 2019

My GENERAL view of the Medical Profession

If you have read my ramblings for any time you know I am dissatisfied,  in general, with those who pose as Medical professionals.  Yes, there are some, maybe even many, who do the best they can.  But most do only what is required to stay employed and to keep from being sued.

Recently, my GP became somewhat concerned over my blood work.  Over the last 18 months and three routine blood tests I have shown anemia!  For 17 of those months, she said it was nothing to worry about.  Just a small lowering of those levels.  No big deal.  Then, this week, she tells me the numbers tell her I am loosing about ½ pint of blood a day!  That seem significant to me.  My reply was, look at my colon since I had half of it removed 18+ years ago and the cancer may have returned.  She agreed but ordered another blood test for that day.  The next day, the assistant called me and said, no problems, the new blood test said I was not anemic and allay levels were normal!  Really?!  Three previous tests over 18 months say there is an issue and one, non-fasting test says I am fine?!!  Something is fishy in Denmark!

I guess we will wait until we see rivers of blood running out of me from one orfice or another.

Just like the neurologist-psych cognitive tests my Wife took and reported she is perfect normal, even tough she cannot do basic math, drives on the wrong side of the road and gets totally confused at the drop of a hat!!

My new approach to doctors, is to avoid them as much as I can.  The Hippocratic Oath used to say; First do no HARM.  Now it says; First, DO NOTHING!! 

Tuesday, May 14, 2019

Increase in confusion and feeling disconnected

Recently, I have been more confused and disconnected from the environment I live in.  I am more and more dependent on my routine.  If that routine is changed or interrupted, I am off track for the remainder of the day.  For instance, because of scheduling issues, I had to be i up and ready about 30 minutes earlier than I normally am.  I got up, started my morning routine, but things just did mot go smoothly.  When I got in the shower, I forgot the washcloth.  I did not want to ope the shower curtain because of water on the floor, so I did not wash my face.  After I got dressed, I went to breakfast, and where i usually sit was full, so I did not eat breakfast.  I then went to my Wife's apartment to meet the scheduled activities and from then on, I have been totally out of sorts.

Again, I am very routine driven and my morning was completely different.  We have noticed this more lately.  Any change causes me to loose mental connectivity and get more agitated and confused.  Nothing seems to reset my clock, except starting another day.

Recently, because of these issues I was agitated and started yelling and cussing at a sport aviation aircraft that buzzes our community.  Another resident heard me.  Not my problem.

The bottom line is, issues are getting worse and I don't care who knows.  Words come more difficult and I find myself feeling lost walking around our community.  Not that I can't get where I want to go, but nothing looks familiar to me.  Strange, but probably normal.

I don't know when my next neurologist appointment is, but it will probably be interesting!

Sunday, May 12, 2019

Happy Mother's Day!!

Our son is coming over today to celebrate Mother's Day with Linda.  She is a wonderful, nurturing, Mom and an even better Grandmother!  As I look back at all she endured during our young married years, I am amazed at her strength, fortitude, and dedication.  Nothing fazed her!  And remember, I was deployed much of those years, so she was on her own!

However, I now look at the daunting task she has dealing with me as my Wife and my caregiver.  Being the spouse of a Dementia patient is never easy, comfortable, or enjoyable.  Yet, she seems to find happiness in every moment we spend together.  I am truly blessed to have Linda as my Wife.

As my days get more difficult, she will share the burden of my care, frustration, and confusion.  We will make the best of the good moments and ignore the difficult ones, as best we can.  That is our plan to survive the remainder of my, no  OUR  Lewy Body journey.

Happy Mother's Day my Love!  You are my inspiration!!

Sunday, May 5, 2019

Unrelated health issues

 My last two or three semi-annual blood work up have shown increasing anemia.  Now, I eat plenty of meat!!   I eat ice cream.  And I eat broccoli.  But, now my GP wants to go on a fishing expedition to see if I am bleeding internally.  My guess is that I am.  But, I do not see any signs of that externally.  But, I am color blind, so brown solid waste could have red blood in it and I would not know.  And NO, I am not asking the nurses to check my poop!

I did have a large tumor at eh place in my colon where the small intestine dumps into the colon, 18 years ago.  That resulted in me having half of my colon removed.  Everything has worked fine since then.  But, it would not be out of the question to have another tumor show up.  I did have a colonoscopy three years ago with no issues.   But, those things can grow fast.

My guess is she has another colonoscopy planned for my future.  I have had too many of them since the tumor was found 18 years ago.  I am somewhat reticent to go through this process again.  I see the GP later this month.  We will see what her plans are and then I will decide.  Since surgery is not the best thing for Dementia patients, this may be a complicated decision.


Saturday, May 4, 2019

The last two posts came from...

A reader, sent me a comment asking me to reflect on the beginning of my LBD journey.  I did, and it caused me to reflect on where I am now.

This disease is kicking my ass!   If this were a bar room fight, I would give up.  I am defeated.

I have always been the tough guy.  I took the tough assignments.  Raised my hand for anything that no one else wanted to do.  In Gun Mounts, I was the person who did the dangerous stuff.  I was on the ship's fire fighting team, full Damage Control Qualified, actually tough small shipboard fires and flooding.  I volunteered as a GS to take overseas jobs in combat zones.  I pushed myself to work hurt, come back from surgeries faster, and was a tough as I could possibly be.  I went through a windshield in a car accident and worked on the ship the next day!  But, I am defeated and I admit it.

As I  said in the last post, I am not who I was.  That was not an easy thing to say.  I stilling to move to that concrete home on 20 acres.  But, I know that will never be.  I often look at myself in the mirror, or in retrospect and ask myself;  How did I get this old!?

Lewy Body Dementia has defeated me.  I quit.  I give up.  I need to spend the majority of my time in "The Cabin" isolated from anyone or any event that will cause me to loose my temper.  I need, no, I MUST HAVE my routine to function.  I cannot deal with people anymore.  It is time for me, to be isolated.  Once, I enjoyed the energy generated by crowds of people.  I enjoyed public speaking engagements.  Parties, banquets, conventions.  Now, I want to be left alone for the most part.

Yes, I still enjoy visits from friends and families.  And I long for more of those.  But people in general are an annoyance to me.

I am not the man I once was.  And I finally recognize that.   LBD had won.

More on the beginning and now

The last post is somewhat jumbled in time line.  I cannot fix that, I just do not remember how.  But, that is indicative or where I am.  Today, in the take out portion of the Independent Living community, I was waiting for a Cheeseburger for my Wife and I.  We decided to eat dinner in her apartment.  In any case, as I arrived the LPN form AL where i live was going into Take out to attend to a resident.  It seems a Independent Living Resident who uses an electric scooter, and had it in the small take out room, against the rules, ran over another resident.  It is not the first time this resident has hurt someone with the scooter and that resident should live in AL or Skilled care vice IL.  That resident cannot or will not walk.  In any case, I blew up because the the violation of the rules and common sense!!

I really should not mix with the residents of IL.  I need to stay in AL where I am mostly calm.  My Wife still tries to integrate me into a normal life but it just is not a good idea.  I was right in my assessment of the situation but me blowing up and flame sorting everyone around me does not help the situation.  But, in my defense, why doesn't management address these egregious violations of common sense?!

My family, friends, and especially my loving, Wife, must address where I am in my LBD journey.

Linda wants to go visit her very dear cousin in Iowa.  I totally agree she needs to see her.  This cousin is 97 years old!   I would love to go see her also, since I too love her.  But, travel, especially in an airplane, is out of the question.  We were planning the trip and I stopped and said: maybe James, our son, should go with you.  I physically and mentally cannot do it anymore.

Being out of my routine, my comfort zone, is not good for me or anyone around me.  Everyone needs to help me with ease issues.  I am not the man I once was, and I never will be again.

My FIRST signs something was wrong

I was with the United States Navy for 40 years.  Twenty years as an Enlisted Man, a Gunner's Mate, retiring as a Master Chief (E-9).  Then I became a GS, Civil Servant, first working on Gun Mounts and Turrets, and then promoting into management, for another 20 years.  That 40 years was very stressful with constant deployments, trips to foreign places, and combat tours.  Late in my Civil Servant career, when I was a Branch Head of the Search Radar, Electronic Navigation, Precision Aircraft Landing Systems, Branch, I was driving home, stuck in Norfolk Virginia traffic on Interstate 64.  Dead stopped in the traffic, listening to talk radio, and all of the sudden, I did not know where I was, where I was going, or where I came from!  It lasted a few minutes and then passes.  I figured it was the result of stress and did not tell my Wife.  

Linda and I BOTH knew something was wrong.  I did not feel like my brain worked like it once did.  I was kn ow in the Gunner's Mate Community for having near TOTAL RECALL of facts, electronic prints, hydraulics, and mechanical functions of many Gun Mounts and Turrets.  All that was going away and we both knew it.

Also, during this period, but I do not remember exactly when, I developed hallucinations.  I saw things, very distinct things, that obviously were not there.  I also developed REM sleep disorder.  Or, acting out my dreams!  I actually punched my Wife in the head during one of these episodes.  I also had some shaking in my hands and later developed walking issues that are much worse today.

A couple of weeks or more later, I had the same thing happen.  I then thought something was wrong and told my Wife.  She sent me to my GP who was a fantastic doctor.  He in turn, sent me to a Neurologist.  After a long series of tests, exams, ad trips in the MRI/CT tube, she sent me to the University of Virginia  where they did the same thing!  Then the Neurologist gave me some drugs and told my Wife to watch me.  I had reactions to that drug or those drugs and that gave the Neurologist a BIG clue as to what was going on.  After all that, she told us I had Lewy Body Dementia.

So, that is how we came to be diagnosed with LBD.  The journey has been slow but has now picked up steam.  I hope this helps others.

Thursday, May 2, 2019

Friday, April 26, 2019

A White Paper on Dementia Care

Dementia care has two sides.  How the facility deals with the person with dementia, and how it deals with residents without dementia.   If you have dementia and are fortunate enough to live in a community that does NOT co-mingle dementia residents with non dementia patients, this does not apply to you.  But where I live, the do co-mingle dementia and nob-dementia patients and they are not very good at it!

Case in point, today;  It is now almost 10 PM.  after a three hour nap, a four mile walk with my Wife, and a peanut butter and jelly sandwich, I am calm.  Not yet over my anger, but manageable.  I discussed the events of the early afternoon with a senior LPN here and she gave me some insight into how things unfolded.  It seems the resident who's relative caused my pain really needs to be moved to Skilled Care.  But, she and the family are against it.  Who the Hell is in charge here!!!  She disrupts others lives and caused me to go High Order, and her rights are important!!!

The community I live in lives in corporate fear of the Americans With Disabilities Act (ADA).  There are people living in Independent Living with 24/7/365 care givers.  They cannot walk, feed themselves or go to the bathroom.  How is that Independent Living?!  There are people living in Assisted Living in the same condition, with 24/7/365 care givers.  Again, that is not what Assisted Living is for.  Assisted means you need some assistance, not 24 hour care.  But, management seems hamstrung by some asshole attorney's view of the ADA!!  That is not what the ADA was passed for.

Having people in AL that are a nuisance to others is unfair to the rights of those who actually qualify for AL.  The same can be said for Independent Living.  If I live in a a facility that is supposed to be populated with able, mobile, self-sufficient people, but is instead, populated with invalids, my rights are being violated!!

However, in the AL scenario, mix Dementia residents in and it becomes a total mess.  In my case, I moved to AL to have a quiet, calm, atmosphere without noises that agitate me!!  Remember me, I chased the so called security guards around the first floor of IL one night because they were not doing their job!  One of them quit and one totally avoids me now.  Chicken!  Not to mention the FEDEX driver.  I NEED quiet.  And a screeching witch in the room across from me does not qualify as quiet and calm.

Azalea Trace, and ACTS must solve this issue.  The must place people in the level of care they require, not what they or their family want.  Regardless of how much money they have or how much political pull they can muster.  If management neglects their responsibilities in these matter, it may not be pretty.

Agitation rears it's loud, profane, ugly, head!!s

Today, we rode the Community bus to the Navy Commissary to do some shopping.  They provide this service every week.  The new Step Down Bus is wonderful.  Clean, modern, comfortable and roomy.   The perfect vehicle for us and I thank ACTS and Azalea Trace for this wonderful asset.

However, some old women cannot be satisfied!  And one of them was on today's trip and set me off before we even got on the bus.  But, I held my tongue and was quiet throughout the trip.

When we got back, I helped with storing the groceries and took Zeus the Wonder Dog out so he could feel part of the activities.  Then I walked over to my "Cabin" in AL, to get ready for lunch.  The meal was great, one member of the wait/cook staff was his usual loud, talkative, smart ass self.  But, I kept my tongue, enjoyed my meal, talked to a few friends', and retired to my "Cabin" to rest before a presentation we wanted to attend that was scheduled for 1:15 PM.

While I was settling down to nap, through my closed door, I heard this loud, screeching, southern, female voice screaming about taking her dog to the vet.  I listened for five minutes or so and them became overwhelmed with agitation and anger.  I went out into the hallway to see where the maddening noise was coming from and tracked it to a room diagonally across from me.  The door was WIDE OPEN  I closed their door telling them to keep the door shut.

I then went to the Nurse's Station and tried to calmly explain my issue to the Nurse.  I failed!!  I blew up!!  I let the Nurse know, in no uncertain terms , and anyone else within a 50 foot radious, that I thought the woman taking, no screaming, in the room was an inconsiderate, disrespectful, BITCH!  Trust me, there were more adjectives.  I then stormed out!

When I returned from the presentation, things were quiet.  I guess they got my message.  Next time, I will not be as polite!!!

Wednesday, April 24, 2019

A retirement community trip!

Yesterday, my Wife and I took an organized trip planned by our retirement community.  A three hour bus ride to an Art Museum.  "yippee"   From my prospective, I would rather watch grass grow or paint dry.  After the art torture, we went to a Pub for lunch.  14 senior citizens, at a Bar, having lunch.  Nothing could go wrong there?  Right?!?  Then another three hour bus ride home.

Let me give you my review.  I hate old women!!  They never did anything constructive in their lives.  The think they know everything and are not bashful about telling you or anyone else your wrong!  Nothing is ever right in their world!!!  The piss and moan about anything and every thing and they know a better way to do it!  By the way, there were three men, counting me, on the trip and not one of us complained.  Of course, we could not have gotten a word in edgewise!

Some of the old women complained the trip was too long.  Some of the old women complained the food was too greasy!  Hell, they ordered fried food in a Bar!  What did they expect?!?

When I got home I was exhausted, from fighting to keep my mouth shut and restraining myself from beating the shit out of these people that have lived too long, for no good reason.   My Wife spent her time patting my hand and trying to calm me.

Linda and I decided we will NEVER take another organized trip again.  It is not worth the aggravation, or the risk!

Saturday, April 6, 2019

Stability issues

I am having more noticeable, disruptive, stability issues.  I have been stumbling more, tipping backwards, and when I walk, sometimes the hall way looks like the deck of a Destroyer, pitching back and forth.  Yes, I see the flood tilting left and right!  Hey, that makes me feel at home!!  But, it is not conducive to stability on dry ground.

I have not fallen, yet.  But it has been tough and go a couple of times.  It is not because of strength and we walk nearly every day, three to five miles!  But, I am becoming more unstable, especial in the transition from sitting to standing or changing directions when I am moving slow.

I am not sure what this means.  But, it means something.  Kind of like what a Gunner's Mate who worked for me used to say;  I don't know what's happening, but it's happening FAST!"

Have you and your Dementia Patient POOPED Today?!

I have written about this before but it has reared it's ugly head again.  My Father in Law, who had Alzheimer's died because he could not evacuate his bowels at all!  A person who lives where I live very nearly died for the same reason, and a friend of a person who lives here died because that person's large intestine ruptured spreading solid waste (POOP) through out their system!!  I cannot evacuate my bowels unless I take Myralax, Clearalax, type laxative every day.  If I miss one day, I am constipated for three days!!!

Look, I know some folks are uncomfortable with this topic.  But caregivers, you need to track your loved one's bowel movements!!  It is a matter of life or death!!

The why of this is the autonomic portion of the brain gets impacted by the Dementia and the signal that tells the large intestine to contract and push out the solid waste stops!  So, no solid waste movement!!

Forewarned is forearmed!!     The more you know, the better off you and your loved on will be.

Dementia, still remains "That dirty little secret"

It amazes me that individuals will not talk about health issues.   Women still talk about uterine cancer as a female issue!  Men will not discuss prostate cancer!  And ED is reserved for dirty jokes.  And when a person begins to show Dementia symptoms, it is covered up like they got VD from a hooker!!

And not only the person with the Dementia issues covers it up but their Spouse as well!  Look, all diseases MUST be brought into the light of day to insure the patient gets the best care and the caregiver makes the best decisions for the patient, their loved one.

Where I live, I have become the Dementia point of contact for the residents!  We started the Dementia Support Group, but now people who think they may have issues seek me out, secretly, quietly, to ask questions.  Many WILL NOT see a Neurologist.  Just like people hide UTI's!!  They think it will get better if I bring cranberry juice or in the case of Dementia, if I read more, move more, take whatever is advertised on late night TV.  But, most likely none of this will work!  So, they get worse, their spouse gets more stressed, and in both cases, they normally end up in the hospital, or dead.

If you are diagnosing yourself, you have a FOOL for a patient!!

With the new medicines ready to be released in the next few years, a accurate diagnosis IS the key to proper treatment and possible a cure of Alzheimer's.  Yes, look up BAN 2401 on the Internet!  It is VERY promising for stopping Alzheimer's in it's tracks.  It has not been tested for other dementia, but Alzheimer's is 70% of all Dementia, so this is big.

My last few posts have been caused by what I see where I live.  I am frustrated with the residents and the organization.  There is so much that can be done to make the lives of Dementia patients and their caregivers good, enjoyable, less stressful, and easier.  But, we have to admit we have an issue, and be willing to openly discuss it with others.  And we MUST seek out help and knowledge!  Or, we can hide in the closet and die a terrible death alone, and most likely kill our spouse because of stress!!




Friday, April 5, 2019

The Stages of GRIEF!

I live in a Continuing Care Retirement Community that is filled with well off people.  No welfare cases here!  And as in any retirement community, there are any number of people with various diseases.  Some that are fast in their attack and sure in their outcome, like Cancer.  Others that come on suddenly and unexpectedly, like broken hips.  And the ones we all see others having to deal with but we hope we never will, like Dementia and Parkinson's.

I have observed the way spouses deal with their loved one's diagnoses.  I have seen people work through the Five Stages of Grief: "denial, anger, bargaining, depression and acceptance".   And, I have observed something I never expected.  Some people, caregivers, husbands, wives, children, NEVER get beyond stage one or two!  That's correct, they either spend the rest of their loved one's life saying; "There' nothing wrong with Him or Her!"   Or they spent the remainder of their loved one's life terribly angry at them for getting the disease they have!

I have seen spouses treat their Dementia impacted spouse like it was their fault they were sick.  Some actually abandon their spouse to skilled care!   That's right, they seldom visit them!  Others are actually mean to their sick spouse.  Both verbally and I believe sometimes physically.  And others deny their spouse medical equipment that might ease their suffering.  The excuse I have hears is that thing costs too much!!

A long time ago, when my Father in Law was dealing with Alzheimer's and was in a Nursing Home, we met a wife of another Alzheimer's patient and she was continually angry at her husband!  Everything was HIS FAULT!  But she was most angry because they money was going to his care!  She wanted to travel and could not because of HIM!!

No one plans to get a disease.  It happens.  And, spouses, husbands or wives, all took the same wedding vow.  "In sickness or in health, until death due us part."  I actually believe some spouses are glad their ailing spouse is dead!   It is like; "Finally, I can get on with MY LIFE!

This attitude hurts me when I observe it.  I have never commented about the attitude and I hope I never do.  And yes, I understand how GRIEF can ruin the best persons attitude and the best relationship.  But, if you truly love someone, I due not understand how you could deny them anything in their time of need.  But, I am old fashion and out of step with today's society.  And boy am I glad that I am!!



Wednesday, April 3, 2019

Things we give up as our LBD progresses

OK, Can we talk, frankly?   All of us have to stop doing things we like to do because of LBD.   Many of them involve our independence, like driving, going somewhere alone and independently, even bathing, dressing, and feeding ourselves as the disease gets worse.  Trust me, I know folks here where I live that can no longer feed themselves.  It is a possible issue for all of us.

Some of the things we have to give up are things that give us pleasure.  Recreational activities we loved. like golf, tennis, or for me, shooting.  But one that may be a big issue for some of us is SEX.

I have written before that I can no longer have sex because it just does not work.  I believe it is a combination of the effects of Effexor, (that nasty, insidious, drug that does not work for me and does work against me!) and the effects of LBD.  In any case, I am completely OUT of the sex game and it bothers me!!

Up until now, I had always held out hope that I would be able to perform at some level if I got off Effexor.  Now, I know that was a fantasy unto itself.  My sex life is over.  This is not how I pictured my late 60's to be.  But, it is what it is.  However, mentally dealing with the reality is more difficult than I had ever imagined.  And before you write me and tell me about those magic pills... They don't work for me, AT ALL!  I tried them with no success.  So, I need to work on accepting this as the new normal.

I will let you know how that works out.

Saturday, March 23, 2019

Tact Issues!

It has been accurately said about me, that I have all the Tact GOD gave me.  I have NEVER used any of it.  And, that is based in some fact.   I have always been an opinionated, loud mouthed, asshole.  Especially when I know that I am RIGHT!  A persons seniority. never made a difference to me.  If I thought they were wrong, I told them.  If they disagreed, I told them in a more descriptive manner!  Admiral, Senator, Captain of a Ship, if they were wrong, they got told so!  And, as I got senior in the Navy, I became known for Flame Spraying anyone who crossed me.  I can tell you stories that will shock some of you and make others laugh until you wet your pants.

But recently, I have really lost control of my social graces.  It occurs mostly when I am tired or overwhelmed.  And, I HAVE actually embarrassed myself, if that is possible.  The real point of this post is, I am loosing control of my emotions and the things that anger me come out, in flaming words that WILL make any REAL Fleet Sailor blush.

How do I or how can I deal with this issue.  Let's look at a few ways.  Don't get tired.  Don't get overwhelmed.  Don't talk to stupid people!  Don't leave the "Cabin"!  

No-one said LBD was going to be easy.  But up to now it was relatively easy.  Now things are getting tough and I need everyone around me to understand that.  But, they still don't.  Or at least I don't think they do.  But that may be me and not them.


Tuesday, March 19, 2019

One of the harder issues of LBD

As most of you know, I live in Assisted Living and my Wife lives in Independent Living.  We spend our days together although I am spending more time in The "Cabin" my Assisted Living hide away lately.    I moved into AL because of my agitation and anger issues caused by noise and people.  My wife is still very active.  She constantly had projects she is working on and is up until all hours of the night.  She loves to have the Television on, just for the background noise.  She is up and down, walking or pacing all over the apartment.  It is how she thinks and relaxes.  As my LBD progressed that caused me issues. Coupled with the noise of people having parties in the hallway outside of our apartment, and other issues I have discussed in the past, my Medical team, the Azalea Trace management, and my Wife and I decided me moving to AL was a necessary thing.  That was a year ago and I believe it was good for me and her too.

However, today, as we were taking our daily exercise walk, she opened up about how me spending more and more time alone in the Cabin has impacted her.  She realizes I need that time to maintain my composure and mental health.  But, it hurts her to have me leave in the early afternoon and not return until after dinner.  Now, I am not out drinking, I am asleep from 2 to 4:30.  Then I eat dinner and take my night pills and return to walk with her and watch some television.  Then, I leave again between 7:30 and 8 PM..

I need and enjoy quiet.  I seldom have the television on in the "Cabin".  No radio, no music, just quiet and Solitaire on the IPAD until I am tired enough to sleep.   Of course, since I moved to The "Cabin" I have not chased any Security Guards down hallways yelling and cussing at them for being incompetent nor have I PUNCHED any delivery personnel for speeding on the Campus!  But those positive issues do not mitigate the fact that I am away from the woman I love so dearly.

She has the most difficult part of my disease,  She is watching me fade away bodily and mentally.  I cannot do what I once could and  am a shadow of myself cognitively.  I search for words, forget my points in conversations and constantly talk about the past.  I am moody, angry, and pretty much useless as a husband.  Yet, she treats me with loving kindness, tries desperately to understand, and is always looking for ways to make my life easier and more fulfilled.

We communicate constantly about the issues of this LBD journey.  And every time we talk, I feel her hurt.  I wish I could help.  This is the hardest part of my disease.

Lewy Body Dementia is a TERMINAL Disease!

There, I said it.  LBD is a Terminal Disease.  Let me explain.  I am never going to get better or be cured of LBD.  It will only get worse and it will lead to my death, sooner rather than later.  Yes, most LBD patients die from aspiration.  The second most probable cause is becoming Septic or septicemia.  But, both are caused by LBD.

Why do I post this?  Because in the last couple of days, I have been run over by this TRUCK numerous times.  It is now a weight around my neck.  Yes, I have written about this before in one manner or another but it is in my thoughts all the time now.

My heart rate is wacky.  My heart POUNDS in my chest on occasion. I have difficulties breathing sometimes.  I get dizzy when I lay down or look up because of orthostatic hypotension.  My body parts are different temperatures, i.e.  my right hand and arm are ice cold and the rest of my body is hot.  My vision becomes tunneled from time to time for no apparent reason.  All of these symptoms can be traced to LBD.

There is no denying it, LBD is getting worse and more challenging and IT WILL WIN.  All the drugs in the world will not stop this relentless disease.  Therefore LBD is a Terminal Disease.

Now, how I deal with that truth will define me for the remainder of my days here on earth.  I try not to let LBD define me but that battle is a difficult one.  It is like saying I am not a Master Chief Gunner' Mate or I am not a follower of Jesus Christ.  More and more, I am overwhelmed by the reality of LBD, just like many of you.  As tough as I am, as hard headed as I am, as determined as I am, I was not ready for this outcome.  And truthfully, I don't know how the rest of this journey will go.  But, I will still trust God.  I know he has plans to prosper me and not to harm me.  That will keep me going.

Sunday, March 17, 2019

It appears Effexor has won..

My third attempt to rid myself of the prescription poison called Effexor has ended in defeat.  I have written before that a doctor who called himself a neurologist in Pensacola, who has an orange bill for a mouth and white feathers on his body, has me taking 240 mg of Effexor a day!  My present Neurological practice reduced me to 75mg a day. Recently on the advice of another doctor, I tried to get completely off Effexor.  As I was told to do, and as I described to my Neurologist practice, I went from 75mg to 37.5 mg per day for three weeks.  Then to half of that a day for another three weeks.  All without any side effects like Brain Zapping.  So, I thought, I could stop Effexor all together and that is where the wheels fell off the cart!  Brain zapping and other side effects took over.  I went to 9mg a day and then back to 18 mg per day and the brain zapping reduced but stayed with me.  I contacted my Neurologist practice and they directed me to go back on one pill, 37.5 mg, a day.  They told me I may not be able to stop Effexor, ever.

No doctor practicing medicine in the US should be able to prescribe a medicine for a patient that they cannot get off !!!   

The side effects of Effexor for me are terrible.  Furthermore, it does not mitigate my depression.  In fact, it makes m Depression worse!!

But, it appears, I am stuck.

Sunday, March 10, 2019

These emotions are RAW and REAL!

What I posted yesterday was real time!  I wrote exactly what I was going through, without filter.  That is my promise to myself and to you.  LBD hurts, physically, cognitively, and more importantly mentally!  I am hurting mentally right now.  Thank GOD I have a scheduled appointment with my long time Psychologist tomorrow.  I believe that will help.  At least I hope so.

But, I also know we all get abandoned by family and friends.  Look, we are no longer fun to be around. And then there is my need to have a quiet life in the cocoon I have created, on purpose.  I moved to My Cabin, (Azalea Trace Assisted Living) to prevent me from hurting someone.  I had already punched the FEDEX man for speeding on the campus  and chased the security boys for not doing their job in a professional manner, and I knew it was going to get much worse.  So, I escaped to my own safe room!!  But, that only keeps others safe when I am doing really bad.  I am still getting punched and kicked by my own memories, failings, and emotions about how my life has changed.  And many of you have the same issues or if you are a caregiver, maybe you can see your loved one in my description of my emotions.

I am broke physically and mentally.  My Wife does a great job trying to keep me functioning and trying to smooth out the ruts in my life. I could NOT ask for more from her.  In the beginning, when we were first diagnosed, she pushed me to be as active and normal as I could be!  I often revolted against her pushing.  But, she was right and it helped me.  Now, she recognizes I need quiet time, alone time, seclusion when I am having a bad day or more.  She really is a blessing to me.

I said yesterday in my post it might be time to retreat.  Don't think I have not given that possibility a lot of deep thought.  I am tired of fighting this battle, knowing it can't be won.  Yet, I still find the strength, through Jesus, My Lord, to go one more round.  But I do not go on with my own strength, but His.  I am spent, completely.

Saturday, March 9, 2019

It may be time to retreat!

I am having a BAD night!  I had Zeus over to the cabin tonight and he demanded more attention than I wanted to or could give him.  He got a swat on the butt and taken back to Linda.   She and I discussed my mental issues and that helped me immensely.  But, I am now STILL dealing with my anger and depression.  I  told her and I will now tell you, I have spent my life having people use me, and having people PISS down my neck and tell me it is raining.   Most folks dd not like me, but I was valuable to them because I am talented dedicated and smart,  so, they used me to accomplish their goals, they looked good, they got the awards, and they threw me away, like a piece of garbage.  My Division Head at MARMC, George Cox, was very good at using me for HIS benefit!!  The only person in my life that I can really say is in my corner, is my Wife.  Yes, I can also count on Jerry and Marcia.  But truly, that is it.  Sorry if you are not on this list.  And yes, many of you helped me move many times, helped me do a roof, fix plumbing, remove skylights, fix cars, etc.  But, I did the same for you.  So, we are even.

I am in Florida, against my will.  I was taken here on false pretenses,  I know I cannot move back to Virginia for numerous reasons.  But, I am still a prisoner.  I get visited once in a while.  But, Linda is my only source of comfort and compassion.

I am constantly bombarded by my past failures.  The circumstances of my birth and raising.  Even my failures in my Navy career.  I seldom feel like I succeeded at anything and I seldom feel truly wanted by anyone except my Wife and Jerry and Marcia.  No one, outside of those three individuals try to understand how I feel or how LBD has impacted m life.

I have had so called Doctors tell me I am not sick.  People that do not know me, tell me the same thing. But I am overwhelmed by what is happening to me and I am quickly becoming unable to cope with these issues.

One of my favorite mental escapes is to mentally build my Concrete Survival home.  I have doe this man, many times.  But not, halfway through the mental constructions, I heard run my mind;  You idiot, you can't do this.  You can't even drive!!  You are broken and dependent on everyone for the simplest daily issues.  Even my brain has deserted me.

I know I am where I will be for the remainder of my life.  I have no control over anything.  This is not how I thought things would be.  But, it is what it is.

Thursday, February 21, 2019

I look perfectly normal from your view..BUT I'M NOT

I wish I had a dollar for every time I heard that.  There's nothing wrong with you!!  You're perfectly fine!  Well, no, I am not.  But I put on a great show!!  Women fake orgasms all the time, I am told.  And Dementia patients "FAKE" normal all the time!!  I know this for a fact!!

But inside, we are frightened, angry, lost, confused, and unsure of ourselves.  Furthermore, we feel we cannot trust you, to tell you, how we feel and what is going on in our brain!  That's RIGHT!!  We don't trust you!    The doctor, the psychologist, our kids, our spouses, our friends, our caregivers, the neighbor, the people we worked with,  No one!!  Why, because you keep telling us we have nothing wrong!!

Look, personally, I trust my Wife, and my friend Jerry with everything I feel and experience.  I tell them, express my insecurities, fears, emotions.  They listen and try to understand.  But, I do not tell anyone else all of the truth!!  It is like going to the dentist.  He asks you;  "Do you have any problem areas?"  Nope, everything is just fine!!  In other words, if you can't find it, I'm not telling you!!

And yes, I have posted many personal issues on this forum.  But there are issues I have NEVER discussed.  Because sometimes, I get replies telling me I am a fake!  Which is what people say when they say, you look, sound, act, write, perfectly normal.   So, as a defensive measure, I close up.

Here at Azalea Trace, many residents have told me, in no uncertain terms, that I am a fake!!  Even residents of Assisted Living.  Yes, I had female pastor, (There is no such thing!)  that I was a fake!!   She said she knew how to diagnose Dementia and I did not have it!!  Well, I know how to identify compassion, and observing her interactions with the folks here in Assisted Living, She is a fake!

Just the inner fear Dementia patients experience is more than can be described.  I see it in my Wife as she deals with what her future will surely hold.  Many times at night, when I am alone, in the quiet of my Cabin, I realize this is it!  I will never get better, only worse.  I will never drive again, do anything independent again, or make my own decisions again!!  That reality hits me in the face like a cement wall at 100 miles per hour!!  No helmet, no air bag, just me and the wall,  BANG!!!

And yes, my LBD has progressed slower than some others.  I credit my Neurologist in Virginia, Dr. Bowles, for her quick action in my car.  She used treatments that were previously reserved for mid or late term LBD to slow my progression.  A Neuro-Psychologist here in Pensacola recently told me I would NOT have receive tat good a treatment here.  I obviously was blessed!!  Praise God!  However, the LBD is getting worse and my ability to act normal is no longer sufficient to cover that up.

Linda and I face some very emotional times.  Every Dementia patient and their spouse do the same thing.  So, instead of playing doctor,  try to be empathetic and sympathetic!  It will help us and make you look like a nice person!!  Even if you are not.


It''s been a while...

It has been a couple of weeks since I posted.  Frankly, I have not felt mentally connected enough to write.  So, let me try to fill in the blanks.

The visit with Jerry and Marcia was the highlight of my year!  They are our very best friends and have been very supportive and understanding of all my issues throughout the 30 plus years we have know each other.  They are closer to us than our own families!!  We had a great time, just being together and catching up on the daily issues of our lives.  Both Jerry and I are dealing with physical issues related to our Navy careers.  Our Wives are both trying to deal with those issues!  IT NEVER STOPS.

My Wife had her Neuro-Psych testing 11 days ago and we are waiting the results.  She knows she had some issues with the testing.  Numbers are her biggest problem.  We know this because she is having major issues with the check book.  Something she has expertly managed for our entire 46 year marriage.  Waiting for a diagnosis almost worse than getting the diagnosis!  But, we wait.

Her Neurologist team has restricted her night driving because of a recent issue where she became dangerously confused driving at night.  This brings her possible loss of driving privileges to the forefront.  Since I no longer have a driver's license, we would be totally dependent on the transportation services of Azalea Trace.  A very sobering thought.

I also now face the very real possibility of becoming a caregiver as well as a Dementia patient!  We knew a couple that this very situation occured to.  Aimie and Lorain Caron. the parents of the Medal of Honor recipient,  HM3 Wayne Caron, the namesake of the USS Caron, (DD 970).  I remember Aimie sending me a late Christmas card one year, explaining that he was very busy "trying to bring Lorain's memory back."!  I may be in his position soon.  Yet, we live in a facility that is prepared and ready to help us deal with this possibility.  The Director of Assisted Living has already told me, he will do everything possible to make our lives comfortable and fulfilling.  Since he has already done that for me, I am confident, Linda's future is secure also.

The Nuedexta continues to help me deal with my anger and agitation.  As I have said before, I still get angry, but I am not on edge all the time.  It is refreshing for Linda and me to have me less agitated.  Because of the success of the Nuedexta, and at the prompting of the Neurologist-Psychologist that did my recent memory testing, I have been in the process of weening myself off of Effexor.  This drug is "EVIL!!!"  The side effects far out number the benefits.  So far, I have had NO issues reducing the dosage of Effexor.  Unlike my past attempt.   I pray that I can succeed in completely stopping this drug and NEVER take it or any drug related to it, again!

Our lives seem to be experiencing some difficulties right now.  But, not to worry, GOD has our lives planned and orchestrated.  Nothing will happen to us that HE has not already provided for.  We just have to let go of our control and let GOD BE in control!


Saturday, January 26, 2019

The BEST surprise!

A couple of days ago, we received a telephone call from our BEST friends from Virginia Beach.  Marcia opened up the conversation with;  "Would you like a visit?  We are on the road headed your way!"   We spent two days talking and reminiscing about the past and catching up on each other's lives.  What a wonderful surprise.  We toured Azalea Trace and they enjoyed the Outstanding culinary offerings we have everyday.  It was a renewing, wonderful time together.  Yes, it was cool in Pensacola and we did have a typical thunderstorm, but who cares, we were together!

Those three days were the BEST days I have had in a very long time.  Thanks Jerry and Marcia!!


Thursday, January 3, 2019

On another point....

When I was having more severe anger issues, before Neudexta, I would spend my nights building in my mind, my concrete house on 10 acres with all sorts of defensive emplacements.  I would fight battles with those who would want to invade my compound.  And I would defeat the aggressors before I could go to sleep.  I have always wanted, longed, dreamed, planned to live a survivalist life.  Of course, it never happened.  But, before Neudexta, and it's calming effect on me, I still tried to cling to that fantasy.  Now I realize that dream is lost.   It is difficult to recognize a dream is lost.  But it is comforting to understand that I now recognize my limitations, caused by LBD.  Reality is harsh, but necessary.

The New DRUG for an OLD problem, works! So far.

Well, it has been 9 days since I started Neudexta and I am now on two pills a day.  I can report that I am much less agitated and angry, especially at night!  I did notice at the end of the one pill a day work up that it helped the most at night, which is when I took the pill.  But now, as of yesterday, I am o n two pills a day, morning and night and the impact seems to last all day.  I am much calmer.  Even my Wife has noticed this and commented on it in our Dementia Support Group her at Azalea Trace.  I have not noticed  ANY side effects.

Now, 9 days is not a conclusive trial, but still, I am very happy with how I feel.  I would not say I feel normal, but I am more calm and have much less violent, angry thoughts and outbursts.  I am having an easier time going to sleep also.

The lessening of the agitation makes my entire body relax.  I will keep you updated as we progress in this latest experiment!