Monday, March 30, 2015

I guess I am just doing too well!

I was sitting in the bathroom, thinking, and it came to me;  I am handling Lewy Body Dementia way too well and people don't believe that I am ill because of my "Hacker" personality!  It is true.  I do not complain openly.  Yes, I bring my issues to this forum.  But, when someone asks how I am doing, I always say; "Outstanding".  I always have a joke or a funny story to tell anyone who will listen.   I am bright and engaged, or at least I try to look that way.

And what does all this get me?  Condemnation!  People deny I am ill, call me a liar, indirectly, and do not see my issues.   Truthfully, I get very aggravated about this treatment.

Since I joined the Navy, I have always been a "Hacker".  Truthfully, I became a hacker even when I late in my youth because of my family circumstances.  But, the Navy showed me that "Hackers" advanced, were liked, and were depended on.  And since, early in "Boot Camp" I decided I FIT in the Navy, I wanted to be what the Navy wanted me to be!!

That carried over to my Civil Service career and into this disease.  and because of that, I get short changed in the treatment I get from others.  Even family members.   And while I do not want people doting all over me, I would like some recognition of the effort I put into dealing with LBD.

Am I an invalid?  Not yet.  But I am handicapped in may ways.  But, that fact goes fundamentally unrecognized.  And I feel shortchanged over that.  I suppose I am just whining.

Recently, I have let down my guard, so to speak, since fighting LBD has become more than I can continue.  But still, I get little recognition.    Maybe, they just don't care.  Or, maybe, as I have written before, they do not understand.  Whatever the case, I am on the short, very stinky, end of the stick.

Note:  I can hear you say:  Boy, that a wuss!  He is really trying to get sympathy.  or something along those lines.  And, I understand your point.  

But, look at mine.  I live in a retirement community with may folks dealing with health issues.   Yet, when my disease comes up i get: No, there's nothing wrong with you.  That's not a real disease.  I never heard of that.  The doctors must be wrong!  And other condescending replies!!  This happens all the time!! I have received these comments of unbelief at best and "Your a Liar" at worst, from acquaintances  and family too.  Now, my friends, those of you who have stood beside me, through think and thin.  You have always been there for me.  So, don't think I lump you in this group.  But, in my new State, I meet many more doubters than acceptors.  My pastor here, actually asked me often, how I am dealing with LBD.  I appreciate that.  But, he is THE ONLY PERSON who ever asks that question here in Florida.  Yes, I get calls and emails from you, my friends, like Jerry, Steve, CJ, Cathy, Jim, Don, Big Head, and others.  But, with the exception of my Foster Sister, not one relative has ever asked how I was doing.  So, you can see my point.

I guess I am feeling sorry for myself.  But, I believe I have a right too.

Sunday, March 29, 2015

Anger vs Pain

It is worth the study to see how constant pain impacts one's mental picture.  I have had leg pain. off and on, due to my LBD for quite a while.  In the past, the pain has been limited to the evenings.  But recently my leg pain has been almost constant, along with upper arm pain and some neck pain.  In the evenings, my leg pain increases to the point that I am now taking some pain medicine.  And if you know me, you will know I do not take pain meds unless I am in extreme pain.

I have also told you I have been having issues with increased agitation and anger.  I have connected that to my recent experiment with Namenda XR since the anger and agitation increased right after I started taking that new drug.  But, there may be a contributory cause in the leg pain.  I don't know and it is hard for me to definitively tell.

The point is, being in constant pain must be contributing to my issues.

I am also having increased stability issues when walking in the open.   Walking down the hallways here at Azalea I do OK.  We have grab rails if I need them.  But, for instance, today walking in the gravel Church parking lot, I had issues with my feet shuffling while walking. That made me unstable.

Oh well, more challenges to overcome!

Friday, March 27, 2015

Namenda XR update

I have not yet recovered from the changes I experienced with Namenda XR.   I am still very agitated and angry.  My memory is still FUBAR, and I am depressed to a level I have never seen.  If I stay in this state for much longer, I will have to admit, and my wife will also, that this is the new norm.  I really do not see any chance of this getting better.

My wife told me today that she does not want me to take any other new drugs!  She said, that she wants me to stay on what I now take, but no other changes or additions.  I agree with her.

I realize all of us with Dementia of any kind are lab rats for the medical industry.  We are the first generation with drugs to combat Dementia and the producers of the drugs really do not know what the effect and impact of the drugs on humans will be over a mid to long period of time.

We saw the same careless experimentation on women in the 1960's with birth control pills and hormone therapy.  And we all know how well that turned out.  And before that, in the 1950's was the use of thalidomide for fertility issues!  I do not expect a better out come for me.

But, there is no other choice except for not taking drugs and going down hill much faster than I am.  Or at least I think I would be going down hill faster than I am.  Maybe, the drugs are doing more harm than good.  But, how can I tell.  There is no "Control Group" that I know of in this experiment.

I find myself thinking more and more about my life in the Memory Support facility.  I actually long for that security and isolation.  Right now, I am not in a good place mentally.  I hope tomorrow is better.

Depression. How does someone other than the patient really know?

How does the doctor or psychologist really know what the patient is telling the truth when they ask those questions like;  Are you suicidal? Are you homicidal?

I ask this question because of the recent airline disaster in Europe.  But it is based in my own experiences. For instance, those tests we took in the Military.  You know, the ones that judges our emotions about certain "Hot" topics.  I knew what answers they were looking for and which answers would flag me as a risk, crazy, or the best person for the job!  The same applies on the Spiritual Gifts Tests that many Churches use.  I can make myself look like Billy Graham or Jim Jones, depending on how I answer the questions and I KNOW what answers they are poking for.

So, when I am in the doctors office, how DOES he know I am honestly answering those questions.   Since I know what answers will cause me to be institutionalized, and which ones will guarantee my freedom.

So, the question is;  Who know the mental health of the individual in question?

Certainly the individual impacted does.   At least in the early stages of depression.    I certainly knew when I was depressed and that is was impacting my job performance and my life.  But, I present that those closest to you may know before the individual that you are suffering from mental problems.

My friend at work, Don Bolick, knew two years before anyone else that I was having dementia issues and depression!   When I became too confused to do my job, Don helped me decide to retire on a disability.  The truth is, he carried me in my job for a long time.

My Wife knew and was reticent to confront me with what she knew.  But, when I asked for help, she took the lead to get me the medical assistance I desperately needed.

In my case, I was the last person to accept the suggestion of depression.  I fought it and saw that diagnosis as dehumanizing and emasculating.  I was a Master Chief Gunner's Mate.  Rough, tough, smart, ready for anything!!  The truth was and is, I was a broken human being in need of help, understanding, and medical assistance.

My point and premise of this post is to alert you, the caregivers and family members of individuals with Dementia of any type.   We will not always be honest and forthcoming about out mental issues.   As a matter of fact, we will discuss sexual dysfunction before we will discuss, honestly and openly, our mental problems!!

So, YOU have to see our problems and confront us about them.  You have to make the hard decisions about weapons in the home, wandering, driving, and independent movement.  And, YOU must make the decision to place us in a facility that can tend, 24/7/365. to our needs!!

While this is one of the most difficult and personal posts I have ever written.  But, as this disease progresses, I must be honest for the benefit of anyone reading my Blog.  So, there it is!  I hope this helps someone make the right decision for your loved one.

Thursday, March 26, 2015


I have talked about having issues with controlling urine and solid waste.  It seems now that I get NO forewarning as to having to GO!

Tonight, we went out to dinner with our Son's in-laws.  It was his brother in-laws birthday.  We know all of our Son's sister in-laws and their husbands and we like them.  So, this was a very enjoyable evening.   The restaurant was about 15 minutes from our retirement community.  When we left the restaurant I did not have to go.   When we got home, the loyal doggy duo needed to go out.  I felt no emergency to go, although I knew I would have to go in the near future.   So, we took the dogs out and after about 5 minutes, I realized that I was in extremes!!    I had to Go!  Now!!

Now, my wife is not comfortable with me going behind something to hide and relieve myself.  No peeing on the trees!!   So, we started walking back to our apartment, quickly.  It became painfully apparent I was not going to make it!!  I could no longer control the leakage and I was wetting my pants, in uncontrollable pressurized leaks.

I dashed into the building before ours and, leaking all the way, I made it to the public bathroom on the first floor.   My underwear and Levis were soaked!  I walked home, now unpressurized, and told my wife of my accident!

Now, she understands and is sympathetic.  I have resisted wearing adult incontinence products, but the is the second time in two days that I am washing soiled clothes.   Yes, last night, I woke up with soiled skivvies.

I know that my LBD is causing this.  It is one of the issues that occur about half way down the LBD road.  And, that is where I am.  But, know, and understanding, does not make the frustration and embarrassment go away.

But, it is time to man up and buy some adult incontinence products.  Since I suffer from both urine and solid waste issues, throw away skivvies are the only thing that will work.

I will let you know my choice and how they work.  How in-depth my report will be.  It just Depends!

Monday, March 23, 2015

They don't understand!

I have learned that no matter how much others try, not matter how much they really care, they do not understand what a LBD patient is going through!  It is not because they are dense, stupid, or self-centered.  It is because, like child birth, back surgery, or shingles, you have to experience it to understand it!

Today, we went to a new dentist.  A practice very close to the retirement community we live in.  It was recommended to us by a number of the residents here and they were right.  A very gentles hygienist and dentist.  A pleasant staff, and we were totally impressed.

My wife explained what I had and how it impacted me.  When the hygienist and dentist came in to treat me, they were complete ignorant of what LBD was or how it manifested itself, even though my wife gave them a good briefing.  The question is: Why were they so lost on about LBD?  The answer is, they just don't understand.

I guess if I were drooling on my shirt and peeing in my pants, they would have understood.  And trust me, I was close on both counts today.   But, the only time I got agitated was when I was filling out the new patient forms.  They kept asking me the same questions, sheet after sheet!!  I actually BARKED at the receptionist!!   I have no apologies for her.  They should change those repetitive, stupid, forms. And, they should understand I have LBD with a major in Dementia!!  Just look at my meds!!!

But, think about it.   I am this agitated and angry with a major dose of meds to control that.  What would I be without those drugs!!   Maybe they should recall me to active duty, take me off my meds, and send me to fight ISIL!!  On the meds, I am ready to strangle most people.

Oh well, those who do not HAVE LBD just cannot understand what we are going through.  It is not their fault, they just cannot understand what they have not personally experienced.   So, I try to remain calm, they to educate those who seem interested, and try not to choke those who don't.   These thing keep me busy, all the time.

Thursday, March 19, 2015

The NAVY was and IS my life!

We had friends from Church over tonight for dinner in the dinning room of Azalea Trace.  We had a great dinner and the tour of the campus.  We then went to our apartment and socialized.  I dominated the conversation and all I could talk about was Navy and my Navy experience.   It is a good thing our guests were career Navy.  The difference is, He served in the Navy as a career.  I lived Navy and still do.

More and more, all I think about is Navy.  With the exception of my Ministry at Bay Breeze Assisted Living Facility, I might as well be in the Navy!   I even find myself discussing, in my mind, whether I should "Put in my papers" to retire!

I have written before about the experience I had, while my wife was at her Bible Study, I hallucinated that I was on a ship, in the gun mount, discussing the fact that the Gunner's Mates we not doing Pre-Fire procedures correctly.  I was talking out loud, walking around, in my mind, on the ship!

The folks I worked with as a Civil Servant used to say that I never took my uniform off when I retired from active duty.  The real truth is, I never retired in my mind and I have not retired yet.   And, as my LBD progresses, and it is progressing, I am more and more living in the Navy!

I cannot talk to someone without checking their pedigree.  What service, Officer, Enlisted, Surface, Air, Submarine, Duty stations, and the other question; "Did you know so and so?"

I realized tonight that I am much worse off mentally, than even I thought.   When Linda and I are home alone, I seldom talk about anything but Navy.  Not even cars, houses, being a survivalist or guns!  I am  almost totally entrenched in my Navy experience.

The revelation that came to me tonight shook me.  I am farther down the Lewy Body road than I thought.  This thing is winning, and I am soon to be lost in my Navy thoughts.

Oh well, at least it was a time I look upon fondly.

My Wife is special!

You know we recently went through a down turn caused by a shift from Namenda to Namenda XR.  We shifted back to regular Namenda and I am getting less grumpy and my cognitive skills have seemed to level out.  So, for the moment, we are back on course.  All be it, somewhat altered.

I also have a torn rotator cuff in my left shoulder that has needed repair for quite a while.  I cannot lift much with my left arm and my motion is limited in that arm.  The pain is significant and I would like to get it repaired.  However, general anesthesia is not a good idea for LBD patients because there is a better than 50% chance I will not wake up in the same Time Zone!!

My Wife is against the surgery because she wants me as I used to be!  She clings to the hope I will not get any worse and she wants to avoid anything that might make me worse.

That is a Special Love!  People often try to change their spouse or friends.  I have heard it said, he would be great if he would only stop doing this!  But, my Wife likes me just as I was.  Of course, I am not as I was and I will never be that good again.   But, she still loves me, cares for me, and ignores my many faults.

It takes a Special type of Love to deal with the problems caused by LBD.  Yet, she does it with a smile.  Through all my emotional ups and downs, my hallucinations, my urinary leaks, and my cognitive decline, she is always by my side, holding my hand, and ensuring me I am fine!  She never tells me I have declined.  Instead, she tells me about all the things I can still do!

I am blessed to have Linda as my wife and care giver.

Monday, March 16, 2015

Namenda, Part Three!

OK, the Psychiatrist that runs my drugs told me to stop taking Namenda XR and go back to the twice a day Namenda.  That was last Friday.  The negative effects have NOT subsided!!  If anything, I may be even MORE agitated and angry.  This is not a good thing, trust me.  If you remember, I got very angry when we lived in the Senior's Apartment in Virginia and almost caused some people bodily harm!!  Presently, I am maintaining my cool.  But I hope this wears off soon.

Another issue, that may or may not be related to the Namenda XR.  The pain in my legs has become almost unmanageable.   My legs hurt all the time.  And any pain that does not subside becomes an issue.  I have not taken any pain meds yet, but that is soon to change if this does not go away.

I have explained before that LBD is a "Plateau" disease.  I believe I have fallen of the plateau I was on for quite a while and dropped to a "new normal" because of the Namenda XR experiment.

That is the nature of this disease and I expect it.  That does not make it easier to deal with.  However, it is the fact and nature of this disease, and I am sure my disease has taken me to the next, lower, level.

More to come.

Saturday, March 14, 2015

Namenda, Take Three!

Well, we called the doctor that prescribes my psychotropic drugs and he told us to stop the Namenda XR and go back to regular Namenda. That shift started yesterday and we have not seen any change in me, yet.

I am still grumpy and agitated and my cognitive abilities have not improved.  But, we hope those issues will subside.  However, they may not.  That is the truth of LBD.  Some changes stay!

We will see how this goes.

Tuesday, March 10, 2015

Namenda XR, take two!

Today, I actually feel like I have Dementia!  Yes, I know I have had LBD for a while.  And yes, I knew it was progressing.  But, the last few days, I have really been disconnected and cognitively slow.   This may be from my change to Namenda XR, or it may be a new progression of the disease.  I just do not know.

But, it is definitely a significant downward turn and that is upsetting.  We have an appointment with the neurologist next month.  So, this will be the main topic of conversation, if I remember it!   We will see.

More later.

Sunday, March 8, 2015

Namenda XR possible side effects

This week, I started taking Namenda XR.  I have been on Namenda, twice a day, for a long time.  But, my doctor decided Namenda XR would be easier for me.  He said, the difference was it was "Timed Release" and I would only have to take it once a day.  Big deal!  I take eight pills in the morning, and twelve in the evening.  One pill more in the evening is no big deal.  But, I do what my doctor says, until it causes me issues.  And Namenda XR may be causing me issues.

What are the symptoms?  I have been much more grumpy and agitated, starting about two days after the medicine change, according t my wife.  I am also much more cognitively impaired.  I am more foggy and disconnected mentally.

I guess we will sat the course for another week or so to see if these issues subside.  If not, we will talk to the prescribing physician and ask to go back n regular, twice a day, Namenda.

The last thing my wife needs is me more grouchy and agitated than I normally am.  And I do not like feeling more cognitively compromised.   So, we will see what we will see.

Tuesday, March 3, 2015

A friend that is closer than a brother!

I have told you before that I have Lewy Body Dementia.  I spend much of the time thinking about my time in the Navy.  What I have not told you is that every week I spend at least an hour on the telephone with my dearest friend, GMC Jerry Hart.

I first met Jerry as a student at Gun School.  He was a NAVVET student converting from Corpsman to Gunner's Mate.  We were stationed together later in our career when he became the Gunner's Mate E-5 and below and schools detailer.  Jerry is a consummate professional.  A dedicated Navy man and lover and he and I became life long friends.

Jerry knows what I am going through and every week we talk for as long as I need to get back on an even keel.  It does not matter what we talk about, Navy becomes the topic.  Most of the time, Jerry mentions an event that I remember and off I go.   Cussing and discussing the events of my Navy experiences as I remember them.  Then, when I wind down, Jerry skillfully interjects another issue that HE KNOWS I will react too.  And off I go again.

Jerry is better at therapy than my Psychologist was!!  Today, as is the norm, Jerry called me and we talked for an hour and 26 minutes!!  It is heaven for me.  A release from my LBD problems and a trip down memory lane.  

Jerry has his own health problems, yet he is such a good friend, that he worries about me more than himself.  There is a Bible verse that says: "a friend sticks closer than a brother."  Jerry is that friend for me.

Jerry has put up with my ambitions, my self-centered nature, and all of my quirks and never complained.  He is closer to me than any blood relative.  Jerry has carried me farther than I have gone on my own.  I appreciate him, respect him, and love him as a brother.

This is a topic I should have written on before.  Tonight, my head has been full of my thoughts of Jerry and our friendship.  I am a luck man to have him as my friend.