Tuesday, December 25, 2012

2012, the year in review

This has been a very eventful year!   But you already know that.  It has also been a very emotional year for you and me.  You have seen me meltdown on this blog over the outcome of the Presidential election and have read about how LBD has effected me.  You also know that we moved to Florida at the end of 2011.  That transition has been difficult for me and the year of 2012 has had it's ups and downs as a result of that move.

Today is Christmas day.  My Pastor called me and I really enjoyed that call.  Pastor Fred is a mentor and friend to me.  He took me from an AWANA leader and Sunday School teacher to a Pulpit Preaching Pastor.  I miss Fred, my Church family at Grace Community Church in Virginia Beach, and that entire part of my life.  Yes, leaving my Navy family has been hard and they are not replaceable.  But, I miss my Church and all of the wonderful people there even more.  And, as I have found out, they are not replaceable either!

Florida has been good for me in many ways.  I truly needed to build an adult relationship with my son.  He moved to New York state not long after he was married and we just never had the time together to build that relationship.  Him and I being together, without kids or wives, is special.  We can discuss "Man" issues and help each other through the problems of daily life.  That can't be done  600 miles away or during a few visits a year.  James and I have re bonded and now have a much stronger relationship.  I have also been able to reconnect with two of my Grandsons.  They are in the middle teen years and, in both cases,  Linda and I are having a real influence in their lives.  This time is precious for them and for us.

I would not give this time with my family up for all the money in the world.  It is a precious gift from GOD.  But I still long for the times, back in Virginia Beach, with my Church family and my shipmates.  Definitely, there is a hole in my soul that will never be filled because we are no longer together.  I never thought I would leave Virginia.  GOD does work in mysterious ways.  HE also works for our good.  I will never forget that!

Merry Christmas.

Sunday, December 23, 2012

Yesterday, I cried!!

For a long time, I had been unable to cry.  I don't know why, but crying just would not happen.  Recently, I have found myself crying about things that surprise me.  Yesterday, I looked at a Christmas ornament that has been with me since I was a very little boy.  It is a little elf that was a package decoration.  Every year, it was on one of my presents.  Then, it became a traditional tree decoration.  My Mother gave it to me when Linda and I were married and we have placed it on our Christmas tree for the last 39 years!  

Yesterday, I was looking at the tree and burst into tears!  I looked at the elf and realized he was the model for the "Elf Story" that is popular with small children today.  For some reason, that little elf brought forth a flood of emotions, missing my Mother, My Mom and Dad, remembering my youth, friends, the hurts, and the happiness.  I was also overwhelmed with the deepening feeling of my own demise.  

Now that topic has never been a topic of thought for me.  Even as a Navy Gunner's Mate, as dangerous as that profession was, did I ever think of death.  Lately however, the thought of death seeps into my mind.  As I have said before, my neurologist in Virginia Beach told me I had not yet come to terms with this disease.  That was over a year ago and now I am beginning to address the outcome of LBD.   I guess I am a slow starter! 

Now don't get me wrong, it actually feels good to cry.  To be able to release the emotions that build up is a relief, not a problem.  So, I am glad this has come to me.  I am also beginning to look at life from a different prospective.   I always knew that I would die, someday.  Everyone know that.  But, in my mind, that day was an eternity away!  Now, I know that it is not.  I am beginning to enjoy life more.  For instance, Christmas!   I always dreaded Christmas.  I had some very difficult memories of Christmas from my youth and the entire hustle and bustle of Christmas was just overwhelming to me.  I resisted putting up the Christmas tree and really resisted putting up out door lights.  Now, I want the tree up as early as possible and I have my front yard as a witness to the birth of Christ with a very large, lighted, Manger scene.   I have lights along the roof of the house and I have plans for even more lights and a camel and donkey in the front yard for next year!!

So, crying is a positive thing for me and I believe I am beginning to realistically deal with Lewy Body Dementia.   More to come.

Wednesday, December 12, 2012

New neurologist blues.

Since we moved to Florida, one of the frustrations has been establishing a relationship with a new group of doctors.  The Family Practitioner is wonderful.  Not as good as my Family Doctor, Bob Dowdy, in Virginia Beach, but a good substitute.   But getting used to my Neurologist is a real challenge.

By definition, Neurologists have the bedside manner of a rattlesnake!  They are full of themselves, self absorbed, and self-proclaimed Know-it-alls.  Every time I have to go to a new Neurologist, I spend the first year of appointments trying to convince this doctor that the other doctors were correct and I DO have LBD!!  Each self-absorbed doctor thinks everyone else is wrong and only they can properly diagnose any neurological disease.   And each time, the new neurologist comes to the same conclusion, at my expense.   Even the neurologists at UVA who were tasked to provide a second opinion by my Neurologist in Virginia Beach.  Actually, that one event may have been the most trying for me.

This Neurologist is the same as all the rest.  He treats me as if I am malingering or lying!   As my wife and I describe problems and issues that have occurred since my last visit, he tries to tell me they are not related to my disease and trivializes my problems!  Truthfully, I am fed up with the drill and I am tempted to tell him and his profession to take a long walk off a short pier!  However, my wife has convinced me to hang in there a little while longer.  But one more curt answer and he is out of here!

Tuesday, December 11, 2012

Confrontation, disagreement, bother me!

I know I have addressed this problem before, but I believe it is getting more pronounced.  Any situation that is based in or has an escalation to a confrontation causes me to become upset and also causes my "Fight or Flight" responses to surface.  Normally, I just want to get away from or peaceably stop the situation and return to calm, normal conversational topics.  I have had a couple of angry outbursts in the car when someone does something that I feel threatens us.

I realize this is a normal emotion in everyone but it is amplified in me and happens earlier in situations that ever before.  Additionally, I react the same way with the discussion of our finances, even though our finances are demonstrably fine.  The normal discussion of our financial goals and condition causes me to recoil and immediately change the topic.  That or I just quickly agree with my wife and change the topic.  Now, I used to do all the long range finances and savings plans.  Now, I want nothing to do with the topic.

This change causes a challenge for my wife.  It causes her to either shield me from controversy or watch me react to it.  She has to walk on egg shells because of me and that is not fair.  But, she knows I am not at fault, it is the LBD.  The interesting part is, right now, when I am doing well, and there are no issues at the fore front, I can write about this issue and describe my emotions.  But, when I am negatively impacted by the events or topic of the discussion, I just react, without reason or thought.  This truly is an interesting, unpredictable, maddening, disease.

Of course, I know soon, I will not have the good times as much.  So, it is good to describe these reactions now for all to learn.  Thanks for listening.


Thursday, November 29, 2012

I wonder?!

I wonder where I would be, how much further down the road of memory loss, if my Neurologist in Virginia, Dr. Mary Bowles, had not been so aggressive in my diagnosis and treatment.  She got me on Arecept and Namenda much earlier than other doctors would have.

Wednesday, November 28, 2012

The Life of Pi

Today, we went and watched the movie, "The Life of Pi".  Now I have been told by a number of people, including my neurologist in Norfolk, that I had not yet dealt with my disease.  My view was, baloney.  Well, I learned tonight that they were right!   Watching the "Life of Pi" I broke down and cried!   Now, I have not cried in years, but tonight I fell apart.  Now, I need to look at why I broke down.

This is a really tough issue for me and it goes back to the circumstances of my birth and everything after that.  I have a lot to face and I will need help.  But, at least I am starting to deal with the reality of my condition.

Monday, November 26, 2012

OK, I am back, but bruised!

My friends, after three weeks I have decided to leave my self imposed prison and begin to communicate to you, my LBD family.  The results of the election were more than I could handle and I could not find a way to express my anger and disgust.  I now accept the fact that the GOD of the universe is in charge and HIS will IS being done!  It truly does not matter what I want or think!  HIS will is going to be done.  That being said, I will try to put the pieces of what's left of my emotions back together.

LBD updates;  I find it more and more difficult to deal with controversy and disagreement.  I cannot express myself effectively and my "Fight or Flight" emotion takes over.  To date, I can control that emotion.  I fear that someday I will not be able to.  I remember my "easy going" Father in Law getting into a fist fight at the nursing home once or twice when he had Alzheimer's.  I was very surprised then, but no so now.

I also have difficulties dealing with commitments on my time.  While I want to be involved in organizations I recoil at any demand on my time through scheduled, meaningless, social, meetings.  My view is, if we have something to do, let's do it.  If not, leave me alone.  On second thought, just leave me alone anyway.  I enjoy time with my wife and family without encumbrances from any outside group.  I guess I am becoming a recluse.

Any confrontation is too much for me.  Recently we had issues with out cable company.  I called them, probably not the best idea,  and they told me tough luck.  My view was, OK, I quit!   We have changed out service for Internet, cable, and telephone, to a different company at a lower rate with better service.  But I hope they don't forget customer service because they are the only other choice!  Again, that "Fight or Flight" issue.  Interesting!

Another issue is making decisions.  I can't seem to make a decision on anything.  My wife knows how to deal this issue.  She suggests one or two things like meals out, places to go, or activities, and then directs me to a solution.   I know she does this and I am fine with it.  If I have to make the choice, we will never go any where or eat any thing.

My body does not work like it used too.  I have become accustomed to my alternating bouts of constipation and diarrhea.   I also understand my issues with aspirating when I eat.  Now, I have to dal with biting my lip when I eat!   My left, lower, lip just began getting between my teeth when I eat or even chew gum!  Ouch!  I am sure this is something the neurologic tells me he was expecting, just like punching my wife in my sleep.  I a sure there is more exciting issues to come.

My wife drives more and I use my cane more.  She should probably drive all the time and I should use my cane all the time.  But I go at this in stages.  I still try to be the master of this relentless disease. I refuse to give up without a fight!

Well, it is good to be back in communications with all of you.  There will be more to follow.

Wednesday, November 7, 2012

The emotions of disappointment

If you are a regular reader of mine, you will have been through my recent posts about my extreme disappointment over the election.  I am a patriot and I am a Constitutionalist.  I took and administered the Oath that Enlisted personnel take to join or re-enlist in the Navy and all the Military Branches.   That Oath says: "I will support and defend the Constitution of the United States, against all enemies, foreign and domestic.  And I will bear true faith and allegiance to the same."  I take that Oath very seriously and when I see our nation taking a path that is against that Oath, I get emotional.  Obviously!

But the shocking fact is that my wife and I have seen how the LBD has impacted my ability to deal with disappointment.   I am still very shook, very confused about my feelings and very angry.   And, except for my wife, my son, and my best friend Jerry,  no one has tried to contact me, help me deal with this shock, or even reacted to my posts!  That makes me realize that I am very much alone, with the exception of the afore mentioned loved ones, in my journey.  I am a burden to those who now regret knowing me.  People with long term, terminal, diseases are looked upon by the "Healthy Normal, community" as a burden to be suffered, occasionally.  No!!   How many times did you visit your Grandparents in the nursing home or hospital?  How about your elderly parents?  A friend who is sufferinf from a long term illness?  I thought so!

So, when I express my shock and horror about the election results, everyone, except the afore mentioned loved ones, ignored me.  It's almost like you are saying; "Please stop taking your meds!" or; "I agree with your decision to stop taking your meds!"  Maybe not, but that is how I see it.  But it is OK, I am doing better thanks to my wife, son, and Jerry.  I am still not 100%, but I am better.

So, stop worrying about me.  Oh, I forgot, you weren't.

OK, I am better.

OK, after a fitful night's sleep and some great counseling from my wife, I am convinced that I will continue to take my meds.  I have a neew goal for life;  I want to live long enough to be a burden to society!

Tuesday, November 6, 2012

I give up.

 Based on the results of this General Election and the fact that America is now a Socialist Nation, I no longer desire to live.  The things I held dear are now gone.  My life's goals, efforts, and plans are dead.  I have made the decision to no longer take any of my medicines and to no longer accept any medical help.  It is my right and I am claiming that right.

This is the last post on this blog.  I have no more to say.  Good bye.

Wednesday, October 31, 2012

You know what I hate?

Do you know what I hate about having LBD?  I hate not being me.  The old me, what I was, with the capabilities and energy I used to have.  The ability to remember complex things, names, or even to flush the toilet!

Today, I was at a Gideon's event at a Fall Festival held by our local Hospital.  I was talking to strangers, handing out New Testaments, and interacting with those of our Gideon Camp for four hours.  I was exhausted!  About two and a half hours into the event I had to sit down!  And I never really rebounded after that.

The old me could go for 12 hours and be energized by the crowd.  Of course, the old me could mow, trim, edge, and sweep the yard, front and back, and then wash and wax the car, and then be ready for a social activity at night!  But, those days are gone.

There are things I still love to do, but they are too taxing for me and I usually just think about them.   Family, acquaintances, friends, don't realize how this disease effects me.  My wife has the best grasp of how my mind and body works, but she even pushes me to do things.  Yes, I know she is pushing me to do things to help me and keep me i the best mental and physical shape I can be.  ANd yes, I understand that and appreciate it.  But maybe not at the time she is trying to ge me to do something!  If you get my drift.

I hate getting tired, forgetting, not being able to do, physically and mentally, the things I used to.  But what I hate the most is knowing I am as good as I will ever be.

Saturday, October 20, 2012

What I miss about work. Or, how retirement has changed my life!

It is hard to believe that I retired almost three years ago.  I remember the events that lead my wife and I to the decision that I could no longer fully and efficiently do what the taxpayers paid me to do.  I remember filling out the paperwork for a disability retirement, getting all the medical justifications and submitting it to my boss.  I vivid remember the day I received the letter from OPM telling me I was granted a Disability Retirement ant to be off the rolls quickly.  After I read that letter, I told my wife;  "I MUST be bad off, they approved my request the first time through!"

But what do I miss being retired?  First and foremost, the daily interaction with my coworkers.  I worked with many of these folks for 20 years.  We traveled all over the world together, rode the wire down from a helicopter to ships and back up again.  We promoted together and worked together to make the fleet more combat ready.  And yes, we rode and worked on ships in combat ones, doing tech assists and crew training in real time events.  Those people are family to me and I miss them terribly.

Second, I miss doing something that is important!  What I did and what they do IS important to the security of our nation.  I helped to recover the USS Cole, worked on the investigation of the turret explosion on the USS Iowa, helped the Navy inspect and accept new construction ships, and did repairs that ensured ships could do their mission.  Again, what we did was important, and stressful.

I will tell yo what I don't miss.  The stress!!  Some unnecessary and some a normal part of the importance of the mission.  Some individuals up the chain of command LOVE to put unnecessary, inappropriate, stress on those who are down the chain of command, just because they can!  I saw GS 14 and GS 15 managers who's only desire in life was to watch those who worked for them squirm!!  I just don't miss their ego trips.

I also don't miss those telephone calls from the Command Duty Officer at 3 AM or 5PM on Sunday, for a tech assist on a ship, 3000 miles away!  I can now actually sleep all night without the telephone ringing!

I also don't miss useless data calls!  You know, those immediate, emergency, demands for a report on the number of pencils you will use in the next century, categorized by color, use, function, and date of the first shipment.  Oh yes, that report is due by noon TODAY and it is 10:30 AM now, the first time you even heard of the requirement!  I don't miss that stupidity.

Retirement, getting away from the stress and pressures of my position, has been one of two factors that has extended my usable life.  That and my Neurologist's dogged determination to accurately diagnose my problems and get me on Razadyne and Namenda early enough for them to help me!  Those two events, in concert, have given me three years of good family time, good friend time, good retirement time.  If I had been able to effectively fulfill the requirements of my position, I would still be working. But I could not, so here I am.

Linda and I appreciate and cherish every moment we have together and I thank GOD for making this time available.  This truly is the best time of our lives!


Sunday, October 14, 2012

How my mind works, now

How does your mind work?  Are you one of those people who's mind runs all the time?  It never stops,  You think of solutions to problems that have not yet occurred?  I used to be that way.  Now, I have to really try to think of things.  Otherwise, my mind is blank.  When I do think, I often think about my past and I am very comfortable with that.  My Navy career is often the topic of my thoughts and dreams.  And again, I am comfortable with that also.

However, I do have thoughts that I do not like.  Sometimes, I think of the thing I have done that are not so noble.  Those things I did wrong either by mistake or on purpose.  Many of these "Sins" are from my youth but not all of them.  They are all "Confessed" to GOD but the bother me anyway.  In many cases, I did or said something that hurt someone I loved.  Other events that come to mind are things that I know went wrong, were my fault either by action or inaction,  and resulted in a problem, a catastrophe, or could have related in serious injury or loss.

Sometimes these thoughts, memories, of my shortcomings cause me anxiety, sadness, or even depression.  I hate and regret the fact that I hurt someone's feelings or wronged someone.  I often wish I could tell everyone that I wronged that I am sorry.  But the thought crosses my mind that they probably don't even remember.  But that may be me trying to sooth my conscience.

None of us is perfect.  In the Book of Romans it is written; "None is righteous, no not one"  and; "All have sinned and fallen short of the Glory of GOD".  I know this, but in these days of living mentally in the past, I still relive my failures.  I wonder if others on the same journey as I am have the same problems?

Saturday, October 13, 2012

Is it depression or something else?

My recent denial for admission to the Armed Forces Retirement Home was difficult to take.  I was really looking forward to living my life out with some shipmates.  Having people round you that have shared experiences helps, I believe.  But, after discussing this decision with my wife, it may be a good thing too.  Especially since we could not live together there.  Visits overnight yes, full time living, no.

But I have been having difficulty with how I feel for the last week or so.  My wife says I am more depressed, and that may be.  But, we discussed my feelings tonight and a few things came out.  First of all, people act like I have a disease that THEY will catch!!  Alzheimer's, Lewy Body Dementia, Dementia, Depression, OLD, are NOT contagious!!  As a matter of fact, IF OLD is contagious, I would think everyone would want to catch it!  It seems everyone wants to live forever.  Not me, but the health industry is based on keeping people alive and looking good, forever.  Trust me, after a face life, hair dye, and liposuction, you still look old!!  Preserved, but old!

Second, no one seems to want me as a volunteer.  I volunteered twice to hold at risk babies at the hospital.  The USS Alabama finally returned my call after three attempts.  But, they only want me to work on week days and my ride is only available on week ends.  So, that may be an issue.

I continue to have difficulty finding an active ministry to utilize my GOD given talents.  There is a Church that wants to establish an AWANA program, but they are slow to react.  Like anyother organization they want fast results but they have not done the required up front work.  And, they have not listened to us yet.

Gideon's is far to removed from active ministry for me.  They serve a great purpose, but it is not my style.

Other things have had a negative impact on my psyche.  For instance, I just learned about an abortion technique called "Live Birth Abortion".  It has depressed and upset me more than anything happening to me.  Check this abomination out on line!!  You will be upset too.

My country is falling apart and I can't do anything about it.  Because of my disease, I am unable to be an active participant in life.  This frustrates me and probably does not help my depression.  I used to get extremely angry and agitated over things like this. I would scream at the television, get angry, tell others about what angered me, and in general stir up a lot of dust.  Now, I just sit and shake my head.

So, all of this, combines, is effecting me.  Depression, probably.  But it is more like surrendering to the way things are now.   As much as I would like to fix the things that I see as wrong, I know I cannot.  And for me, that is an overwhelming issue.


Thursday, October 11, 2012

Plans change, all the time!

I had it all planned out.  I applied to the Armed Forces Retirement Home in Gulfport, Mississippi.  I took a tour and Linda and I were very impressed with the facility.  They even have a Memory Care facility! I thought, what a great place for me.  I could be with other career military folks and especially, retired Navy folks!  Linda would move to Gulfport and I would see her everyday.  When my condition got worse, the Navy home had the facilities to deal with me.  Those plans were changed today!

It seems the bureaucrats that run the Armed Forces Retirement Home don't want me because I have a diagnosis of Dementia!  Actually, Lewy Body Dementia, but they only concentrate on the Dementia part.  Even though I am in fair to good shape now and still able to do things on my own.  I drive, manage long term money, and dress and feed myself.  I even go to the bathroom on my own!  Hell, I am better off than most people under 25!!  But, my honesty on the admission forms caused them concerns.

It seems no one wants those of us suffering from a Dementia related disease.  My wife and I applied to Westminister Canterbury in Virginia Beach and they turned me down for the same reason.  But they wanted six figure money to get in as a well person.  That on top of $2000 per month!  And that was with us having Long Term Care insurance!

I guess I understand their point.  I would be an expensive patient a few years down the road.  But wait, I got this disease because of my Naval service!  They don't see it that way.  So, instead of getting upset or depressed, I need to formulate a new plan.

Right now, I am looking for property in central Alabama to build Fort Donnie on!  My cement house, a gun tower, escape hatches out of the house, a bomb proof basement!  I almost have this plan complete!  I am still working on the air supply for the bomb shelter and I have a few kinks to iron out over my solar and wind powered electrical system.  But I am close!

I will keep you informed on my progress.

Wednesday, October 10, 2012

True tough guys

I lost a friend this week.  He was a wonderful person.  Humorous, intelligent,  generous, caring, and TOUGH!  He was really tough.  He suffered through kidney cancer, loosing one kidney and then the other along with his bladder and all connecting plumbing.  Yet, through all of his journey he maintained his independence and his drive to be as upbeat as possible.  I actually heard him complain more about the Steelers loosing than his medical condition.  He hated to ask for help even though his many friends loved to help him.  He knew that his condition would cause him to die yet he never gave in or quit.  As a matter of fact, he worked, without kidneys or a bladder until just a few months ago.  But now, he is at rest and his journey is done.

Barry was an example for anyone to follow whether you have a hang nail or cancer!  I have said that getting old is not for wimps!  And my Dad used to say, youth is wasted on the young.   But true TOUGH guys don't let the difficulties of life get them down.  They look for the good parts of life and see the positive things around them.  That is what Barry taught us in how he lived life and how he faced death.   Great lessons like that are only taught by great individuals.  We should listen to them more and complain about our conditions less.

Saturday, October 6, 2012

What spins your clock?

Even with the effects of LBD, there are things that I still get excited about.  For instance, I love cars!  Old cars, new cars, Hot Rods, Race Cars, and especially Corvettes!   I like to go to car shows, car dealers, and I love to watch Barrett-Jackson car auctions on the SPEED Channel.  When the Scottsdale auction is on in January, I watch all 6 days of the event!   I would love to go the Scottsdale and see the event in person!  Cars are one of the things that still spin my clock.

The second thing that excites me is guns.  The BIG guns of a World War Two Battleship, my ever favorite, MK 42 5"/54 rapid fire gun mounts, .50 caliber machine guns, and all rifles and pistols.  I love to shoot any rifle or pistol, of any caliber.  I love to teach individuals how to shoot and how to be accurate.  I have taught many men,  women, and children to love the shooting sports.  One of the young men I helped start in the shooting sports has won about every competition in defensive pistol shooting!  I had a had in starting him, but it was his skills that lead him to the championships!  But, shooting spins my clock!

Another endeavor that gives me great joy is serving Jesus Christ.  AS you may know, for a brief and very fulfilling time, I was an ordained Lay Pastor.  I am not highly educated in Theology, but I have a heart for the Lord and I want everyone to know about Jesus Christ and what HE did for me and what HE can do for you.  I dearly enjoy preaching GOD's Word and witnessing to anyone who will listen.

I bring these three important things that I find enjoyable up because, they are what keeps me going and keeps me positive through this journey.  I know I will not be able to do all or any of these things in the future, but right now, I cling to them with all my might.  They keep me on this side of the disease and that is where I intend to stay as long as GOD wants me to.

Friday, October 5, 2012

Holding on to today, sort of

I have done quite a bit of research on LBD, Alzheimer's, and other dementias.  There are many articles on how the diseases effect the patient but nothing written about how the patient effects the disease!   For instance, on the LBDA.org sight, I read about a study that arrived at the conclusion that prescribing Arecept and Namenda early in the progression of LBD greatly slows the progression of the memory loss component of the disease.  And WEBMD states that the life expectancy of an individual diagnosed with LBD is two to twenty years!  That's a large span and I wonder how the attitude of the patient and his or her family and friends effect the patient's life expectancy.

I have tried to maintain a very positive attitude but I find that now, four years or so into my journey I am having more and more trouble keeping myself on an even keel.  The effects of LBD are impacting me even more each day.  Loss of memory, muscle pain, lack of energy, muscle weakness, unstable on my feet, shaking when I exert myself, exhaustion, well you get the idea,  These issues make it difficult to keep a positive attitude because I know they will only get worse.   And what is even worse is that I know Lewy has some new negative issues just around the corner.  I know, because I have had a few run ins with a few of those issues!  What issues, incontinence, constipation, vision issues, and fear.  You can see how these issues can deflate a positive attitude.  Just the same, I want to remain positive and engaged.

Another issues is my recent emotional sensitivity.  I have written before about this, but it continues to impact me.  I see insults and rebukes where there are none.  Either that or I am being picked on and I never saw it before.  These issues also linger on.  All of these issues combine to cause me to withdraw and be negative.

Maybe the disease effects the attitude and not the other way around!  I really don't know and now, after putting this all in print, I am even more confused.  During the time I have been writing this, my emotions have completely shifted and I am now depressed, withdrawn, and upset.  Maybe I should just let this happen instead of trying to effect the disease with my attitude.  Maybe I will just go to bed.


Thursday, October 4, 2012

A little cheese with that whine?!

I had a realization that I might be turning this site into a Whine Fest!   It was never my intent to indulge in self pity.  Just the opposite, I want to share my journey in a positive and truthful manner.  Now, some of the things I have reported do come across as negative, and that is the impact of LBD or any Dementia.  But there are interesting and even humorous things that happen, if you just look.

For instance, the other day, my wife walked past me and I saw her in a blue blouse.  I commented on it, only to be told she was only wearing her bra!  I looked again and I saw that she was correct.  No big deal, and somewhat funny.  You just have to look at the things that occur, out of the ordinary, with curiosity and humor.  I remember in the third "Pirates of the Caribbean" movie that Jack was effected with the curse of the gold coin.  He was in the day light and could see the bones in his hand.  His reply; "Now that is interesting, very interesting!"

That is how I try to look at the hallucinations, my teetering over, or my forgetfulness. It is interesting how I see a blue blouse when there is none or remember a name one day and not the next.  Instead of obsessing over it, I have to look at it as something new and so should the caretaker.

So, I will try to be more humorous, more inquisitive, and more upbeat!

Wednesday, October 3, 2012

Changes in my life.

Life always continues to change.  In the Navy, we had a saying;  "The only constant is CHANGE, and the rate of that is variable!"  That was certainly true before my Lewy Body diagnosis and it has only accelerated more as of late.

We moved to the Pensacola Florida area last October specifically to be close to my son and his family.  We had lived 600 miles apart for eight years.  Because of job moves, they lived in up state New York and we were in Virginia Beach, Virginia.   When they moved to the Pensacola area, we visited to check out their new home and as a family, we had a discussion about living close again.  My on wanted to take a daily part in my journey and Linda and I welcomed that.  So, we moved Florida.  That move came with many issues and emotional problems that I deal with even now, a year later.  I miss the Tidewater area of Virginia.  We lived there for over 30 years and it is home to me.  But, it is comforting to be close to my son and his family.  They are there to help us and that is a blessing.

One of the most emotional and difficult parts of this move has been leaving my friends and my Church family.  My Church, Grace Community Church, Virginia Beach, is a loving, Bible centered Church.  It is small in size but BIG in service.  I liked to call our Church a Hugging and Eating Church because we hugged everyone and had some great meals together.   My Pastor helped me grow spiritually and personally.  He encouraged me to preach GOD's word and my Church family bestowed upon me the honor of Ordination.   That singularly was the greatest honor ever given to me.  Greater than anything I did in the Navy, as a Civil Servant, or as a human.  Serving GOD, Preaching and Teaching HIS word is the greatest honor anyone can have.  I miss my Church, the fellowship, the spiritual support, and being an Associate Pastor to that great group of people more than anything.

We have search for a new Church home, but finding what we had at Grace is difficult if not impossible.  Yes, we will find a new Church Home but I will never find a new HOME Church!   And that emotional void hurts.

So, this issue becomes one of my LBD issues.   While living in Florida has it's positives,  there has been some emotional issues that have been difficult to deal with and have left me feeling empty and lost.  Long distance relationships are always difficult.  Being with people is always better than talking to people.   Our best friends, Jerry and Marcia have paid us a visit and that was wonderful.  Now, if I could only get them to move to Florida.   Maybe I should try to establish a Grace Brethren Church in Gulf Breeze!  But honestly, I am not physically or mentally equipped to accomplish that.  Yes, I know I can do all things through Jesus Christ who strengthens me, bt I have not been given any spiritual direction to undertake this endeavor.  So, I continue to try to make a connection with a local Ministry that I can work in and there is some movement to establish an AWANA program at a local Church.  The Pastor there is personal, energetic, and interested in reaching people for the Lord.  So, I may be back in AWANA again and that would be great.  Only time will tell.

I present this issue to you to further illustrate how difficult it is to disrupt the routine of an individual with any Dementia.  Yes, I am only at Phase II or III but it still has caused me emotional and mental distress.    I also write this to be completely honest and open about this journey.

I have noticed that I am more emotional, less thick skinned, and easily hurt over statements made too me and emotions that would have been brushed off in a day gone by.  Not, I am easily upset, angered, and emotionally injured easily and I find it more difficult to heal. I dwell on issues and things of the past.  Things I have down wrong and things done wrong to me.  Yes, all sins confessed to GOD and buried in the deepest ocean with a "No Fishing" sign posted!  but, I am now weakened and vulnerable. And I now strike out over that hurt.  Verbally or by withdrawing from the situation but still my way of getting back at the individual or the situation.  I beat myself up over these things and sometime I find relief.  But that relief is getting hard to find....

Monday, September 24, 2012

Anger of the caregiver.

I was at a Gideon's meeting tonight and one of our members had a prayer request for himself.  He said his wife had Alzheimer's and that he had issues being angry with her over her disease and the situations it presents.  He was frustrated with his situation and with himself and Linda and I understood.

I talked with him after our meeting and told him I had Dementia also and my wife had many of the same issues.  I also recommended the local Alzheimer's Support group.  He was not interested.  Why, because he wants to do this on his own!

That's not abnormal for many men and women who are of a "Type A" personality.  When something happens that we cannot fix, we immediately get angry and make even more attempts to fix the issue, each time getting more frustrated.  The "Type A" personality will never give up but will get more and more frustrated until he breaks!

Help, professional help, is the issue but it is seldom accepted.  Now I write from experience since I and my wife are "Type A" personality individuals and neither of us likes to ask for help.  But, we did attend an Alzheimer's Association support group and it did give us some insight.  But we did not take advantage of the help in depth.  But realize, this is a brutal disease that impacts both the sufferer and the caregiver!  And that impact is negative, immediate, and everlasting!  There is no cure for the disease or the mental anguish for the caregiver!

So, outside, professional, help is recommended not only by those who are educated in this area but by me!  I had a neurologist asked me how I was dealing with my disease.  I told her I thought I was doing well and she immediately said; "No your not!"  It shocked me.  Not her abruptness but her correctness.  I had been fooling myself, smiling through the tough times, keeping a stiff upper lip, toughing it out, what ever phrase you use to cover up your fear, desperation, and depression!

I know what people want to hear, I know the "proper" responses, and I can put forth a facade of being normal.  But, inside, I know I am not  the way I used to be and the changes terrify me!  The physical weakness, lack of energy,loss of motor skills, and lack of stability in walking.  The mental issues of loss of my short term memory, inability to select the correct word, fear, getting lost, and the overwhelming feeling of doom.  Yes, Dementia, in any name, is a devastating diagnosis.

But look at the disease from the care giver's point of view.  The one they were planning on traveling with in retirement, the one who they walk on the beach with, the one the caregiver has spent his or her life with is now gone or at least going.  Yes, leaving!  Oh yes, the sufferer is still there, physically, but not mentally!  And it is the mental part of our loved one that we interact with and love.  So that loss is the most traumatic part for the caregiver.

So, again, outside professional help is not only needed, it is required if the caregiver is going to survive the ordeal mentally and possibly physically!  Stress can induce strokes or heart attacks for those who are in a weakened state!

Another issue is providing a break for the caregiver!  There are memory support units that provide daily or weekly respite care and I recommend that for every caregiver.  I know my wife is refreshed by outings out without me or worry about me.

So, tonight's interface with another family suffering the pain of Alzheimer's.   Presently dealing with their condition unsuccessfully!  But maybe, our interface will encourage them to seek assistance.  They still have a long journey ahead of them.

Friday, September 21, 2012

Dizzy!

Today, I woke up dizzy!  OK, there's a joke in there somewhere, but I mean I was dizzy.  My head felt numb and I was very unsteady on my feet.  Today was the day we had planned to go to the Commissary so I was determined to carry out our day's plans.

I took a shower and was glad our builder, D.R.Horton, redid out master bath shower at cost complete with three grip bars!  I held on with one hand and washed with the other.  It worked and we headed for the Commissary.

Riding in the car was difficult in the beginning.  No, not because I am the world's worst passenger.  But because the effect of things speeding towards me was overwhelming!   That sensation subsided after a while.  In the Commissary, I did fairly well until checkout!  Getting the items out of the cart and onto the checkout conveyor was difficult.  The up and down movement made me dizzy, or more dizzy!

But, we made it home and after unloading the groceries, I was able to sit down and rest and I felt somewhat better.  We took a nap in the afternoon and now I feel better.

I consider myself a good boy today!  I did not even consider driving today!  I knew I was not in any shape to drive.

Again, like the incident where I did not know I had clothes on, dizzy is a new issue.  I don't know if it is related to my LBD or an inner ear issue.  I did not have any allergy issues, no congestion, no coughing, no, sneezing, so I lean towards LBD.  And, since LBD does effect different parts of the brain, it makes sense to me.  Oh well, it's another thing to put on the question list for the neurologist appointment in December.

As have said before, things are progressing and starting to effect me more.  I am more emotional and more tired.  It is to be expected and I am handling it OK.  But, I also know I am really in a fight to the finish.

Wednesday, September 19, 2012

Do I have clothes on?!

OK, here is a new and disturbing issue.  Yesterday, I was out at a Church meeting and I wore long pants and a nice shirt.  I even has socks and shoes on!  Believe me, here in Florida, that is "Formal" wear!   When I came home, I got undressed and sat on the couch drinking a cup of coffee and watching television.  My son called and said he was coming over to set up our new printer.  I took the call and then I got up from the couch and told my wife; "I'd better get my pants on if we are going to have company."  The problem was, I had my shorts and a t-shirt on!

I actually felt as if I was sitting in my undershorts and I was convinced of it even as my wife told me I had my shorts on.  Sanding up, I had to look and feel my shorts before I was convinced.  This is the first time I have had this issue and it unnerved me to say the least!   Now, after I saw I was wearing shorts, I was OK and I felt fully dressed.  But, just the same, I was upset that this issue had surfaced.

So, next visit with the neurologist, I will have a new issue to discuss.  I hope he does not reply; "I was expecting that."

Thursday, September 13, 2012

Advice II

We are independent beings.  When we become old enough to get our driver's license we are standing at the DMV with our money in hand.  Independence at last!!!  Do you remember that wonderful feeling?  So now, skip ahead a few decades, you know something is wrong.  You mind is slower, you can't remember things, your motor skills are not what they were, so you go to your doctor.

Tests, questions, maybe a PET scan, maybe an EEG, and then the verdict;  You have a Dementia type disease.  What do you do now?  What happens to your independence?  All of us who are on the journey called LBD know exactly what I am saying.  A rush of thought go through your mind and one of the first was probably how long can I drive?!  Yes, the thought of life expectancy was there, would I need to be institutionalized, how long before I get bad, but my independence was foremost in my mind.

I still drive, but I am much more careful, defensive, deliberate, than I was.  I never drive when I am tired and I seldom drive at night.  And, I have started to let my wife drive more ofter.  She is a very good driver and I trust her without question.  But she will tell you I am a terrible passenger!!  Just the same, a slow transition resulting in me no longer driving is the right thing.

I was very fortunate because my Neurologist diagnosed my disease very early!  That has permitted us to work out the future before it happened.  That also permitted the memory support drugs, Raxadyne and Namenda to work their magic. Now I know they are beginning to reach the end of their effectiveness, but we are ready.  I know friends who either had a very quick onset of Dementia or denied the warning signs and symptoms and delayed seeking treatment until it was too late for the drugs to help.

So, this edition of advice is simple;
First;  Go to your doctor as soon as you feel the symptoms occurring!!  This is the most important thing you can do for yourself!!!

Second;  Make a plan with your spouse, your children, for the progression of the disease.

Third;  Begin a process that will gradually lead to YOU no longer driving!  My plan gives my wife total control over my driving.  I even have this in my Living Will and my Medical documents.  She knows me best, especially after 40 years of marriage, so she knows when I am unable to drive.

Fourth;  For the caretaker, take your new passenger out, even when there is no where to go.  This will enhance his feeling of being independent as he looses that independence.

These things have worked for us.  But, as the old commercial used to say; "I am not a doctor, and I don't play one on TV." so discuss this with your doctor when you do what I recommended in step one!

You and you spouse are the strongest part of your support group.  Yes, a great GP and a understanding Neurologist is important, but they don't see you 24/7.  Your spouse does so listen to that person!  They won't steer you wrong.

Saturday, September 8, 2012

My first outing with my walker

Today, my wife, my son's Sister in Law, and myself took a very informative walking tour of the historic district of Pensacola.  Since we moved to Florida, we have been trying to acclimate and my wife thought this was a good opportunity to learn more about Pensacola's history.  The tour was two hours long and conducted by a History Professor from a local college with 50 years teaching experience.  He was marvelously entertaining and very informed.  It was naturally hot our and very humid, but this is East LA!

But, I am sure you really want to know how I did with my wheeled walker.  I believe the correct name for my device is rotalator.  In any case, it and I did very well.  I purchased a model with eight inch wheels and it handled the bumps, cracks, and sidewalk debris without a hitch.  But the best part was the seat!!  Other people in the tour, those not needing the assistance of a device like mine, were envious.  At every stop on the tour, I had an instant, comfortable seat, and I used it!  This kept me from getting too tired.

One of my issues is stamina.  I get tired quickly when I am out walking or doing something.  My cane helps me keep stable, but a long walk, or in this case, tour, makes me tired.  Without a place to sit down, I am in trouble.  So, I  normally avoid this type of event.  Now with the walker, I will be able to go more places.

In the past, I would have been embarrassed to use such a device, but now, I use what works.  The heck with appearances, and I recommend one for anyone with issues like mine.  You have a choice;  You can either stay home, fall down, or use a device that works for you!  And like I said, I was the envy of 50 people.  So, I would say my first outing was a success!

Friday, September 7, 2012

Leg pain is back in spades!!

When I was first diagnosed, like so many of you, my neurologist and my GP both thought I had Parkinson's Disease.  But I had memory issues that predated the problems with my stiffness and stability issues,  So she went deeper and after extensive testing, determined I had LBD.  My leg and arm stiffness was an issue and I was prescribed Requip which I have terrible issues with and then Sinemet.  I took the Sinemet for about two years until the nausea became too much for me to deal with.  I told my neurologist I would rather put up with the stiffness than the nausea.  So, for about two years, I have been off and Parkinson's meds concentrating only on my memory issues and tolerating the stiffness.

Well, I believe, no I know the time has come to restart the Parkinson's medicines.  The pain in my legs. lower back, and arms, has become constant and is increasing in intensity.  Also, my instability has increased.  Tomorrow we plan to attend a History walk of Pensacola.  It is scheduled to last two hours and for the first time, I am taking my wheeled walker.  So, I am going to ask my neurologist for a recommendation on a medicine to reduce this pain and rigidity.

So again, things progress.

Advice

I was sitting here on the couch having my usual issues with "Sundowning".  Evenings are tough for me and probably most with LBD.  I realize the LBD Association, WEB MD and other sites have information about our disease.  They have symptoms, treatments, testing, and eve life expectancy, but no advice!  So I thought I might write about some of the things I have learned over the journey of LBD.

Since LBD is unpredictable, no one has exactly the same problems.  And since it is an up and down disease, one minute you are pretty good and the next minute you are terrible, problems change from day to day.  Just the same, there are a few things I think will help everyone.

First, if you can, retire or quit work as soon as possible!!  The stress of work is detrimental to those of us with LBD.  I had a high stress management position that required me to be on call 24/7!  I literally had no down time for the 20 years in civil service.  When I was diagnosed, I was determined to continue working and my boss was a wonderful support!  But, when I could not recognize long time friends and work mates, and when I could not remember HOW to send travel orders through the computer system, it was time to retire.  Leaving that high stress job was the best thing I could have done.  Now I can nap when I need to, sleep in if I feel like it, and have no demands on me.  I have also found out that with your neurologists help, Social Security disability is easy.  So, I recommend you retire or quit working as soon as possible.  It will definitely extend your good days.

Second;  My neurologist was tenacious!  She did her research, got a second opinion, and asked colleagues.  She prescribed Razadyne and Namenda early on in my disease.  I have read on the LBD Association site and on WEB MD that early use of these drugs delays the severe onset of dementia and that LBD patients have a better response to these drugs than Alzheimer's patients.  Now, I am not a doctor and I can only relate what worked for me and what I read.  So, do your own research and talk to your doctors!  But, while my memory is getting worse and my short term memory is almost non existent, according to my present neurologist, I have been diagnosed with LBD for over four years!  I would say that Razadyne and Namenda are my friends.

Third;  Learn your physical and mental limitations and let everyone know about them!   Friends, family, most people, think you are faking it!  You look normal, you are not drooling on your shirt or peeing in your pants, so you must be normal.  Well, I'm not.  I get tired easily, am not as strong as I was, cannot judge space, make bad financial decisions, and can't remember my address or phone number!  I cannot go all day, or paint a house, or even do yard work.  As a matter of fact, my long term GP in Virginia Beach told me, NO YARD WORK!  I try to follow that.  But, yo must set your own limits and then enforce them.  Don't let the crowd drive you.  The results of overdoing it can be dramatic.  I know, I wrote about my experience taking down my storm shutters.  I nearly passed out!  And when I came into the house, I was breathing very hard, my heart was pounding, I was sweating profusely, and I was weak.  That all lasted for about an hour!  I did not follow my own advice.

Forth;  Have some fun!  We are going through a traumatic experience.  We have a degenerative neurological disease that is not curable and leads to death!  Sounds terrible, but it is the truth.  Now, the late George Carlin said;  "Doctors have discovered that saliva causes cancer!  However, only when taken in small doses over a long period of time."  So lighten up and have some fun.  Do those things you never thought you would.  Last year m wife and I went parasailing!!  It was great!

Last;  This should be first!  Take care of your caregiver.  Probably your wife or husband are taking care of you.  They know everything about you and are taking on most or all of what you used to do.  On top of all of those responsibilities,
they also manage you meds, I have 15 prescriptions at the present, help you move around, maybe do all or most of the driving, and have very little personal time.  So, while you can, give you caregiver a break.  Arrange some personal time for them.  If you need constant care, have a friend come over and stay with you.  Also, most nursing homes have respite care day and longer stays.  Trust me, we owe everything to our caregivers.  Show them some respect!

These are a few that came to mind right now, I hope more will come to memory later.  There is one final point.  There are a number of outstanding blogs about LBD.  Most are from the caregivers and they are excellent.  The bloisphere permits us to have a large support group with varied experiences.  I encourage you to use this asset and to let the authors know you are there.  Share your experiences through comments.  I don't know where Linda and I would be without this support group.

Well, I am exhausted, so I will follow my own advice and go to bed.  More tomorrow.  Thanks for being there.

Monday, September 3, 2012

Giving up!

Those of you who fight the daily fight with LBD know what I am about to say.  The rest of you are cringing in your boots for fear of what I am going to say.

Everyday, those of us afflicted with LBD choose to fight the fight.  To get out of bed, eat, deal with our digestive systems, walk, interact with other people, and do the things that those without LBD do.  We have to make this conscience choice because there comes a time that it is easier to say NO!  That's right, NO I won't do it anymore.

I suffer from this problem from time to time.  Not because I have progressed so far down the LBD road, but because I sometime fail to see the reason to keep up the fight.  Sometimes it seems futile.  I can't do what I once could.   I don't remember what I once knew.  I don't want to do the things I once did.

The other issue is family, friends, others, don't seem to understand the frustration I face, the effort I expend, to look "normal" to them, to function in their world.  Everyone wants everything to be as it was but I know it can't and never will be.  Many times they get frustrated at me because I am not interested in the things of life.  So, I try to put on a brave face and go about doing things I am not interested in. It is futility.

So, a constant dance goes on in the life of the LBD sufferer and the LBD caregivers and loved ones.  Sometimes one of us gets frustrated and feelings get bruised, other times the facade holds.  It is a constant dance.

One thing I have learned that helps me it to have a mental mission to keep mentally and physically for.  No, I am not just talking military mission but things we plan or desire to do that will require me to be in good spirits.  For instance, my favorite ship, the USS Caron (DD 970) is having a reunion in Washington D.C. in October 2013.  I will be there if I have to take a Greyhound bus!!  That event keeps me trying to maintain or even get stronger, more mobile, and mentally more connected!  I want to see my shipmates one more time.

So, when you LBD sufferer seems out of sort, uninterested in life, or seems to just want to give up, give him some room and some time to gain control of these emotions.  If you can, help you LBD sufferer find that special mission to focus on.  However, pushing him or her will only exacerbate the problem and may cause a blow up that both of you will regret.  It's just the way it is!

Thursday, August 30, 2012

Agitation!

I notice more and more that I get agitated, and angry at the drop of a hat.  Tonight my wife was listening to silly ring tone samples on her IPAD.  That should not have invoked anger or frustration in me, they were funny, but I got agitated and angry over the noise.  This seems to be happening more and more.  A few days ago I was putting up the storm covers for the windows for the first time.  I got screaming angry over the problems installing them.  Again, I would not have had this problem a few years ago.

So, I went to WEB MD to check the LBD symptoms and there they were.  Agitation and anger.  Now that does not make controlling my temper any easier, but at least my wife and I can understand why this is happening.

Today, I took down the storm covers.  Naturally this was much easier, so I attempted it myself.  Bad Idea!  I got so sweaty, tired, and unstable on my feet that I had to sit sown between windows to rest.  Now I was not rushing but just going at a slow pace.  Just the same, my body cannot deal with exertion and by the time I was done, I was panting like I had run a marathon!  Linda told me, that was the last time I did that alone.  I'd like to argue, but I know she is right.

So, that issue caused me to get upset over living in a house vice an apartment or community for people over 55 or more.   You see, we sold our home in Virginia Beach and moved into an over 55 complex to get me away from home maintenance.  When we moved to Florida to be next to the grandsons and my son and daughter in law, we bought a home because it made financial sense.  But not physical sense for me.  Again, I can rationalize the decision but I get emotionally agitated over the end product!!

So, while some people, who watch me from the outside, say that I am not getting worse, I know that I am.  And frankly, their attitude pisses me off too!  MY best friend's Mom had Lumpus.  She was a trooper and tougher than most men.  She dealt with her infirmities in a stoic manner and made the best effort not to have he disease rule her life.  At her Grand Daughter's wedding, people kept asking her how she was doing which was beginning to get to her.  I was the one who asked that question and put her over the top.  She said to me;  FINE, how are you doing!!!  I learned my lesson and never asked her again.

The moral of that story is, be honest with me.  If I seem worse, tell me, don't tell me what you think I want to hear.  Because I really don't want your platitudes or sympathy.  AS President Reagan said, there I go again!  Maybe I will take a chill pill and relax in a dark room.  

Tuesday, August 28, 2012

My wife and my friend

I received a comment from a reader today.  That reader commented on my Navy blog but also commented on a post my wife placed on this blog a while ago.  He told me I had a great wife!  I have known that for almost 40 years!  But, it was good to get someone else's opinion too.  She has always stood by me, encouraged me, kept me in line, told me when I was wrong, which in itself is a tough job, and now, has become my caregiver.  Some of you may not think I need a caregiver yet, but I do.  For instance, I can no longer make sense of all the medications I take.  And keeping medical appointments is not in my ability either.

But, her biggest task right now is to be my sounding board.  I need someone to talk to, be with, and tell my inner fears to.  I suffer from serious insecurity issues.  I am constantly asking her if I did this or that correctly.  Now, I never had that issue before, but now, I need to know I can still do something well enough to pass inspection.  Of course, what I can do is limited.  I'm not even permitted to drive the riding lawn mower, but sometime I sneak a few laps in before I get caught.   Truth is, I get over heated and suffer from excess sweating at the drop of a hat.  So, her care and attention IS necessary because I am hard headed, still!

I know her role in my disease is very difficult.  And she has the most difficult times to come!  I appreciate her love and care and I appreciate the difficult times to come.  I try to make her load lighter, but there will come a time when I will be unable to help her.  Yet, my wife is always there, by my side, keeping me on track.  I could not ask for anything better.

Sunday, August 19, 2012

Alone with myself

I have a place in my mind that I go, very often.  It is a place that fits my needs and that I am familiar with.  Everything is as I want it and I am comfortable and safe.  In control.  Every night, before I go to sleep, my mind goes to this place of serenity.  It relaxes me and helps me go to sleep.  No matter how the day went or how I feel, this trip to my comfortable place is a guarantee of sleep.

Some times I build a house in my mind, other times I modify a truck for a specific purpose.  Sometimes I work in my garden, or just ride my ATV around my property to make sure all is secure.  If you are interested, my house is made of steel reinforced concrete and is easy to heat and cool.  It is a small house, 1000 square feet, with one bedroom, one bath, a living room and a kitchen.  The doors are braced from the inside for security against intruders.  I also have an outside kitchen for summer cooking and canning.  I use solar and wind turbines to make electricity.  No connections to civilization.  No cable TV, no city water or sewer.  Just me and my home, secure against intruders, self sufficient, standing against the onslaught of evil.

It seems, more and more, I seek refuse in my comfortable, safe place.  I wonder if others with Dementia have this escape too.  I have never told anyone about this until now.  Why, I don't know.

Thursday, August 16, 2012

Stress tests results and other issues that are resolved.

Well, I finally received a telephone call from my GP about the nuclear stress test I took 13 days ago!  I had determined that I was OK when they permitted me to leave the hospital after the test!  No ambulance, no chest scars, no IV, just me walking out.  So, I figured I was OK.  However, 13 days is a long time to wait for test results that could have foretold of big issues.  But, I should be happy that I am fine and I am.

Second, My left thumb developed a click every time I move the end of my thumb.  The pain began to increase so I went to my GP and he sent me to a "Hand" specialist.  This specialist was wonderful.  His office x-rayed my hand, the Doctor looked at my hand and told me it was a tendon issue that may be cured with a cortisone injection.  AS he said, he gave me three chances to run away from the "shot", but I stayed and received the treatment.  I am glad to say my thumb is feeling better.  I hope it stays that was, surgery is not in my health care plan.  I told you all before, no more tests.  Well, the nuclear stress test was out of my control, but no surgery except life threatening situations.

On the disease front, my wife believes my hallucinations have increased.  I agree.  Nothing frightening, just strange things like birds flying through the living room, the feel of someone moving across the bed, and my usual small mammals running around on the floor.  I continue to get tired easily and sweat profusely at the least little exertion.  Maybe a little more exasperation with the world around me, but that may be related to the political season.  Or maybe not.  I guess I will know in November.

Tuesday, August 7, 2012

Seeing things that aren't there.

I have had hallucinations for quite a while.  Some of them are fairly benign.  For instance, a small rodent running across the floor, movement out of the corner of my eye, or a dog going into a room when my dog is laying next to me.  I have seen people, but not as ofter.  Once, in my bedroom, I saw two girls sitting on a bench against the bedroom wall at the foot of the bed.  They were dressed in white old style dresses.  None of these hallucinations frighten me because I know, for now, that they are not real.  Last night, I was sitting on the couch with my feet up and for some reason, I saw my foot and that startled me!  I guess I did not expect my foot to be there.

One point of interest, the vast majority of my hallucinations are in the evening or night.  I credit this to the effects of  my "Sun Downing".

I also have touch and auditory hallucinations.  Many times I have the feeling of someone moving on the bed when I am the only person on the bed.  That happened today when I took my afternoon nap.  I have also experienced a human touch on my shoulder when no one was in the room except me.  I hear my wife's voice when she is not talking or not even in the room.  Many times, I have gone and found her in another room and ask if she called.

Again, all of these issues are normal for someone with LBD. My wife has grown to accept them and my reaction to them.  While I don't tell her about everyone, I tell her about new ones or nights when the visions are particularly plentiful.  I also know, someday, I will not deal with these issues as logical as I do now.  But, for now, they are just entertainment.

Monday, August 6, 2012

An unexpected award and a new look.

I have been writing this blog for a while.  It came to being because of my wife and my neurologist, Doctor Mary Bowles.    They both believed it would be therapeutic for me and also a record of my long journey into eternity and they were right. But I never knew that what I wrote would be useful to others.  But your comments have caused me to understand that all of us in the Lewy Body community, sufferers and caregivers, benefit from sharing our experiences.  The best support group is you, who read all of the Blogs written through the challenges and pain of this mysterious disease.  I call it mysterious because even Medical Doctors don't know what Lewy Body Dementia is.  We, all of us, are pioneers and together we will inform anyone who wants to know and educate those who will listen.  I wish to convey my heartfelt respect for those of you on this journey.

I was informed today that this Blog was awarded a Best Blog award from Healthline.com.  It was one of 25 other Blogs recognized in the Dementia community.  I was surprised and honored by this award.  It is recognition of the efforts of my wife and you, the readers.  Thank you for being part of my journey.

We have a new look for our Blog and I hope you like it.  Again, it is the artistic efforts of my wife that make this Blog possible.  She is the my love, caregiver, and mentor.  Of course, we will gladly take inputs and ideas.  Your comments are always welcome.  Again, thanks for being there!  

Friday, August 3, 2012

The Stress test, without results.

I hate to keep you waiting, but I do not know how well or bad I did on the nuclear stress test.  Back in the Navy, when we had our nuclear stress tests, call Nuclear Technical Proficiency Inspection, (NTPI) we knew immediately how well we did.  For instance if the Weapons Officer and the ASW Officer were immediately fired, we knew we did bad!  And if the Captain was smiling, we knew we did well.  But, those who administer this test have the ability to tell you nothing!  No matter how much you plead.

How do I think I did?  OK.  It took three levels of incline and speed to get my heart to the target heart rate.  My blood pressure at that point was 140/80.  My target pulse was 136.  I had no chest pain and I could still breath.  Additionally, the nurses and technicians did not stop the test abruptly and throw me on the gurney and I was permitted to go home.  So, nothing can be too wrong.  Or can it?

When the doctor tells me, I will tell all of you.  Until then, we are in the dark.  The symptoms that started this testing are still there, and they may always be.  If this is from my LBD, I guess I will have to live with it.  Again, I await my doctor's call.  Maybe Monday.

Wednesday, August 1, 2012

Nuclear Stress Test!

OK, That sounds like they are going to blow something up and see if something else can stand the blast!!  And I guess that is exactly what they are going to do to me tomorrow morning.

I got the call today and was scheduled for my stress test tomorrow morning.  There was an opening for tomorrow and I decided to take it.  Why wait, jump in and test the water.  But, I will be truthful with you and tell you I am apprehensive about this test.  I am still pretty tough and I can take a fair amount of pain.   When I had half of my colon removed, I did not take the any meds prescribed for me and I got off the pain pump in the hospital quick.  I don't like narcotic pain meds and will do just about anything to stay away from them.  But Dentists and heart tests still terrify me!

Since I have had these sweating, shortness of breath, and low energy issues I have been concerned about my heart but I was also told that my symptoms were probably related to my LBD.  Also, based on what I have read about LBD on WebMD and the Lewy Body Dementia Association site, I was pretty confident it was the LBD.  But, when my GP did the EKG and he and his Cardiologist friend decided I needed a stress test, I began to worry.  He told me there was a minor change from my last EKG that caused them to be cautious.

So, tomorrow morning at 8AM, they will pump me full of isotopes and make me walk for a while.  Hopefully, I will get to leave after that.  But there is the outside chance they will keep me for further treatment.  Eleven years ago, I had this test and I failed!  That lead to a heart catherization which came out fine.  But, signing the permission forms for that catherization was frightening!!  I had to sign a form for the catherization, a form for a stint procedure and a form for open heart surgery!  I asked the Doctor when the open heart surgery would happen and he said; "Right then!"  That scared me to the point of passing out!  They might be cracking me open like a crab!!  Not a comfortable mental picture for me.  Now, I am facing tha again, with even more symptoms, and I am not comfortable or at ease about tomorrow.

But,  I will be there bright and early, ready to be poked, prodded, and exercised.  Hopefully, all will be good again.

Monday, July 30, 2012

Anger issues Part II

OK, I went off course on my last post.  I was going to talk about the anger issues.  Like last year at our Seniors apartment.  We had returned form a shopping trip and we had numerous bags of food to take up to our third floor apartment.  No problem, we had a cart in the garage that handled the bags well and there was the elevator.  When I pushed the elevator button, nothing happened.  No lights, no sound of the elevator moving to the ground floor.  Nothing!  I thought the elevator was out of commissioned.  I was frustrated but I also understand that mechanical things break.  Just the same, it WAS working when we left because we rode the elevator down.  So, I started carrying the groceries up the three flights of steps and then I noticed the elevator stopped on the second floor, door open, and full of furniture.  Someone was moving into a second floor apartment.  I said to the young men moving the furniture;  Move the furniture out of the elevator so other people can use it.  The sarcastically said; "No, it's OUR elevator!"  I BLEW UP!!  I mean really BLEW UP.  I was ready to fight, I was screaming at the top of my lungs using language that would have won me the World's Swearing Championship!  People in the next building, behind closed doors, heard me.  I know, they told me!  Then, after challenging them all to a fight, I went over and exploded on the management staff!!  It was ugly.

After I returned home and calmed down, I knew I had to apologize to everyone and anyone I offended.  I did so, even to the sarcastic young fellows.  I was embarased and my wife was upset.  That was the first time I really understood that my "Social Filters" were broke.  LBD had taken my ability to be nice in tough times.  Something I used to pride myself in.  It has happened more recently also, but you get the idea.  In the blink of an eye, I went from happy to ready to fight!  I was not just angry at the situation, I wanted revenge!  Thank GOD for restoring my sensibility.  But I know, this will only get worse.  So, we guard against it and try to stay out of situations that may encourage rage.  But I cannt stay completely away from life, so in my daily interactions, I am sure I will once again explode.   can only pray it is controlled.  My wife is my human rock and sh understands me better than anyone else.  She should after 40 years of marriage.

Anger and rage are real issues for those of us suffering from Lewy Body Dementia.  Again, thanks to others for sharing their experiences.

Anger issues

I was reading a blog post from a care giver for a LBD patient and I read an excellent article on anger issues. This disease has numerous symptoms that come and go as fast as the weather changes in Florida.  One of these issues is anger or outbursts of anger.  I gained important insight into my own disease by reading her experiences with her husband's anger issues.

I also get angry, even elevating to rage.  Presently, I recognize that emotion and either contain it or go to bed where I am alone to let it pass.  Since 99% of my time is spent with my wife, who is my care giver, the LAST thing I want to do is explode on her.  Being a retired Navy Master Chief Gunner's Mate, she has heard me explode before and I am sorry for that.  However for a long time, I have made every effort to control my anger and contain my outbursts.  Before LBD, that was easier because I knew what I was getting angry about.  Now, anger has it's own agenda and sometimes I don't recognize it before it explodes in my brain!

My wife is still able to rein in my outbursts with various techniques ranging from calm explanations to loud demands to calm down.  All of her techniques work, so far.  Like I said, I also work very hard to be civil and in control.  I fail sometimes, but right now, I think I am doing well.

It is beneficial for me to read about other LBD sufferers issues and problems. First of all, it gives me the assurance that I am not abnormal or broken.  I am just suffering from a disease.  Second, other peoples experiences give us an insight into what will happen next.  That is very valuable when you are trying to figure out the newest issue of LBD.  Because having LBD is an on the job learning curve.  It is like being fed with a fire hose.  There is little information out there and most GP's don't even know what it is.  So, the sufferer and care taker are on their own, especially in the middle of the night when a new problem pops up.

To my fellow bloggers, thanks for being there!

Saturday, July 28, 2012

Calls from friends

I have written before how telephone calls and visits from friends are the greatest boost to my mood.  Yesterday, I received a telephone call from a friend I worked with for 20 years.  He is always upbeat, encouraging, and witty.  Yesterday's call was no different.  Now Tim is dealing with his own issues looking out for the physical and emotional well being of his Mother.  Tim and his wife have been his Mother's only family support for a long time and now, as she needs even more help, they continue to be strong and steadfast.

As we talked, Tim asked me how I was doing and I told him I was doing well and that I was getting accustomed to Florida.   Tim then verbally punched me in the nose!!  He said; "Why don't you write about being better.  You sound like you are miserable!"  Well, point well taken!

But, in my defense, when I write about being unhappy or uncomfortable about my surroundings, it is because I am!  However, in Tim's defense, I have been doing better.  I do not feel as lost here in the Panhandle of Florida.  But I will not fulfill the recall on my Garmin GPS because I am afraid to be without it!  I am beginning to make some friends in the neighborhood.  A new retired couple moved into the house across the street.  I am glad to see the because they are older than me!  My next door neighbors are a great couple and they watch over us like we were their parents.

I have also joined the local Gideon's group, so I now have a Ministry to pour my energies into.  All in all, I am doing better emotionally.  Health wise, is a different story.  My medical condition reminds me of an old joke.  A fellow walks up to me and asks;  Can you lend me a thousand dollars until my brother gets better?  I reply, what does he have?  The fellow replies, AIDS!

My memory is getting worse, any exertion reduces me to a sweating, shaking, collapsed, pile of humanity.  I have had to purchase a rolotator, ( a wheeled walker) to help me get around when I am unstable and weak.  My doctor is fairly sure it is related to my LBD, but he did an EKG and discussed my issues with a Cardiologist.   Now they want me to do a stress test, just to be sure.  So, my health continues to get worse, but I am happier in my surroundings.

The bottom line is, Florida is good and I am as good as I can be!  Thar's not a bad way to be.

Please keep those calls and visits coming!  

Saturday, July 14, 2012

A trip to the water park!

I enjoy water parks.  I like to ride the water slides.  Not the extreme ones, like the 160 foot drop, 60 mph ones, but the gentle, or even slightly fast slides with plenty of turns and drops.  I am like a kid at the water parks and have enjoyed a number of water parks with my grandsons.  Sadly, I found out last Thursday that those days are over.  We went to a park close to us here in northern Florida.  It is a park directed at the large tourist trade.  But it was nice, clean, and well ran.  But, it was built on the side of a hill!  I have never seen so many steps just to get from one ride to another.  Not to mention climbing up to the top of the slide.  To say this place was not handicap accessible would be an understatement.  Yes, I know, handicapped people don't go to water parks.  Yeas they do!  The water park in Virginia Beach IS handicap accessible!  Not all slides, but the wave pool and other places.

Just the same, I got extremely tired in quick order and had to sit and rest the rest of our stay.  I was out of breath and weak!  No, I did not have any chest pain.  I was just winded and weak.   When I got home, I could hardly walk and I had great difficulty getting out of my chair!  Now, being totally truthful, my legs and arms have been experiencing stiffness, pain, and rigidity, for the last few weeks.  But, these last few days, I have had to depend on my cane.  Of course, that makes my right arm hurt all the more.  My arms begin to shake after a short time of strain.  So yesterday, I did something I have been putting off for quite a while.  I bought a rotilator, or as some call it a walker with wheels.  It is easier on my arms and gives me better support.   Additionally, it has a seat and it has a storage compartment under the seat!!  The wheels are larger than most so it will navigate gravel and rough terrain.  OK, not an off road vehicle but more usable than a smooth tile floor model!

This is just another expected step in the progression of my disease.  Yes, I expected it, but I did not welcome it.  But, it is what it is.  By the way, my legs are still sore and stiff, now two days after the water park.   SO, the cane and walker are still in service.

While I was in the store purchasing my walker, I looked at the chairs that help you get up.  I think that will be my next purchase.

Friday, June 29, 2012

No more medical tests!

I have finally decided that I have reached the point that I no longer will take or tolerate anymore medical tests!  The last test where they shoved a garden hose down my nose to see if my swallower was working right was the final straw.  And believe me, the thing was much bigger than a straw, even a soda straw!!

But there are other tests I have decided not to have.  For instance, a colonoscopy.  No don't get me wrong.  I believe strongly in colonoscopies as a preventative test.  A tumor found early, polyps removed early, can extend your life.  Please get the base line colonoscopy when your doctor says to.  But, I have had half of my colon removed due to a tumor found in my baseline colonoscopy when I was 50.  And I have had a number of colonoscopies since then.  But no more.

It is just time to say, this far and no farther.  On the advice of my neurologist, only emergency surgery is recommended.  So why do these intrusive, uncomfortable tests.  Not to mention the money spent for the tests.  It is time for me to take charge of my medical issues and treatment.

I don't recommend my stance for anyone else.  But it is the right choice for me.

Tuesday, June 19, 2012

No elective surgery

I believe I have written about the possibility of me getting the surgery to solve my Gastro-Intestinal Reflux Disease (GERD).  I have taken Proton Pump Inhibitors for 30 years!  They work but I would and my wife would like me off of the meds.  They have some side effects.  I had the first test, and it was a doosey!  The ran some type of device through my nose and into my throat to test the closing of my esophagus valves.  I now know why they wanted my stomach empty!  I gaged, did the dry heaves, and in general spent 20 minutes in misery!!

Then, during a normally scheduled appointment with my neurologist, I asked him if having this surgery, which requires General Anesthesia, was advisable.  He said, NO.  He also said, all elective surgeries were out.  Emergency surgery is OK.  Nice to know.

So, today, I called the doctor's office that was planning other tests and the pending surgery and told them I would not be having the surgery or other tests.  They sounded disappointed!  I guess they had a new car or an extension on their homes planned!

The neurologist said that general anesthesia has a high possibility of making dementia worse.  In other words, it may speed the progression of the disease by a jump!  He said he had seen it numerous times and really recommended against it.  So, the moral of the story for us with Dementia is, emergency surgery only!

  

Friday, June 15, 2012

Anger, revisited

I have written about anger, especially my anger, in the past.   I wrote about the time I lost my temper, BIG, at our previous apartments.  NO, we DID NOT move to Florida at the request of the apartment management! (ha ha)  Just the same, anger out of frustration and self pity is a problem.

Now there is a revealing statement.  I am frustrated over the way I am treated by the medical world, the Veterans Administration, other people.  It frustrates me when people who do not know me and have no reference point as to where I was mentally or physically, tell me, I am fine or that I don't appear to be sick!  I do have a diminished self because I cannot do or remember the things I used to.  I feel less of a man because I fall of ladders, get exhausted mowing a small yard, or get completely incoherent in a store.

But most of all, I hurt, mentally, inside, continuously.  Some of the medical professionals call this depression, but that is not it.   It is more like self loathing.  An I angry, yes.  Do I show it outwardly, no.  Why, it is just not a good idea.  So, I hold my anger inside, control it, subdue it.  I have told you before, for some reason, I cannot cry.  I have had that issue since just before my diagnosis.  I believe it is related to LBD just like acting out my dreams is.

Another issue is communicating with others.  I find it increasingly difficult to discuss my symptoms and their progression with anyone.  The doctors don't care and others just glaze over and ignore me.  Some want to tell me they have the same symptoms!  That really aggravates me!  If you have these issues, go through the pain of getting a diagnosis of your own.  Other wise, quit diminishing my disease by telling me my symptoms are no worse that yours and you are normal!  I am not normal, I have Lewy Body Dementia, and I am tired of having to prove it all the time.

Since I was a small boy, I have known I was color blind.  Not totally, just what they call a color deficiency.  Every time I would tell some one that, they would give me a color test!  "What color is my shirt?"  They did not believe I was color blind even though the medical community said I was.  Their opinion was, you can walk, talk, function in society, you CAN'T be color blind!  It's the same invisibility I suffer with LBD!

However, my anger must be controlled for my well being and the well being of my wife.  Sh has been the one true supporter and cheerleader through all this.  Regardless of how the medical professionals treat me of better yet, ignore me, I must remain in control.  SO, since you are my only support group; is this an issue with any of you or those you care for?

I figured it out!!

I am sitting here at home, my wife is at her water aerobics workout and it's quiet.  Jut me and Marcel the wonder dog.  So, I was thinking, maybe even reflecting on my life since the diagnosis of LBD.  Not how I have progressed or how life itself has been.  But my frustration with both of my Neurologists.  And I have determined where my frustration is.  If someone has Cancer, a broken arm, fibermyalsia, their doctors treat the like they have what ever it is they were diagnosed with.  The patient is told of problems to come with the treatment and told how they are progressing.  The patient and the family even have resources to go to for support.  Groups of people and professionals that know the disease and may have even experienced it.

With LBD, at least my experience, it has been completely different.  My neurologist in Virginia doggedly attacked my earliest symptoms.  She ordered tests, did research, and even consulted with colleagues in her field to make sure she was correct.  She sent me for a second opinion at a research hospital that reconfirmed her diagnosis.  After that flurry of medical activity, she stopped treating me like I had a disease and treated me more like an appointment she had to suffer through.  The neurologist here is the same.

I get no interest from the doctor in recent changes and symptoms even if my wife brings them up.  I get a blank stare for 15 minutes, a few grunt of acknowledgement, and then I sent out of the door with an appointment in three or six months.  Sine my issues are inward and cannot be seen with the naked eye or even a MRI, the doctors tend to forget that I and my wife are suffering.  Both neurologists know where to find sympathy, it is in the dictionary between shit and syphilis!

So, my frustration is that I am treated as though I don't exist.  Either that or I am a annoyance that has to be suffered to get the insurance payment in order to pay for the new Mercedes!

Am I feeling sorry for myself?  Maybe!  But I think I am really tire of being invisible.  The LBD Association web sight has all sorts of statistics showing that this is a disease of considerable numbers.  Yet, there is no support groups, no telethon, and no Hollywood stars coming to our support.  So, I have come to the conclusion that we are ALL invisible.  I don't yet know what to do about this invisibility, but the next time I have some quiet time, I am going to think or reflect on it.  If I remember!!

Wednesday, June 13, 2012

Latest visit to the Neurologist

Yesterday, I had my latest visit to my new neurologist.  I am beginning to think that if the Neurologist did not diagnose you with LBD, they don't believe you are sick.  That coupled with his attitude of, the drugs work, sort of, so what are you complaining about, lead me to believe I would be better getting my drugs from a corner Unlicensed Pharmaceutical Salesman!  Honestly, do these people understand what compassion, care, and concern are as it applies to their patients?   I have honestly had my fill.

On another note, I did get some, offhand advice from this quack.  I was considering having the reflux disease surgery done.  I have been on Nexium and it's relatives for 30 years!  I really would like to stop taking that pill.  I seems that maybe the surgery has a good track record.  I have seen the surgeon that does this surgery here and I am undergoing the preliminary tests.  So, I asked my Neurologist if General Anesthesia is a good idea for me.  He acted like I was asking him the meaning of Life!!  But, with some prompting, he finally said, elective surgery is not a good idea because it MIGHT cause me to go further into dementia.  He actually said he has seen this in other patients.  His attitude was; "Other Patients that are really sick", but that's my read of his attitude.  So, in any case, I probably won't have the surgery.  However, my wife wants me to complete the testing, just in case it reveals that this is more than elective surgery.  I agree with her.

I had the first teat today.  They ran a tube with sensors in it down my nose, into my throat to measure the closing of my lower valve in my esophagus.  Boy, was that a terrible event! The tube, through my nose, down my throat, caused me to gag, dry heave, and choke, all at once.  I finally settled down and completed the test.  No wonder they wanted my stomach empty.  They knew what was going to happen.  In any case, that is a test I won't have again!

So, the medical profession continues to depress me.  All that schooling and they have the personality of a bent shit can!!

Wednesday, June 6, 2012

Being with others helps and hurts!

Today, my wife went to do water aerobics and left me at home.  I enjoy these brief periods alone.  Well, alone with my constant companion, my miniature poodle named Marcel.  I any case, I was thinking, reflecting, accessing, and in general, doing a mental inventory of where I am.  I quickly slipped into a quiet mood.  I was comfortable, not worried or threatened, and also not particularly connected to the world around me.  My mind was on my Navy days and I was happy.

When Marcel let me know that my wife was home, I was jarred back into the present.  I had to interact with her.  I had to answer and ask questions, pay attention to her replies, and help her with packages.  While it is an effort for me to be engaged with people, I believe it is good for me.  I believe that, without that human contact, I would quickly slip into a malaise that would overcome me.

Just the same, I enjoy the quiet of being alone and I enjoy being in that comfortable place in my mind.  So you see, it is my interface with people that keeps my dementia at bay.  That and all the drugs I take.  But, I did read an article on the Lewy Body Dementia website that the Alzheimer's drugs, Namenda and Arercept, taken early in the disease, have a great effect for a longer period of time.  So, people and medicines keep me going.  More to come.

Sunday, June 3, 2012

The LBD support group on the web.

My wonderful wife built my blogs for me and encouraged me to write about my experiences with Lewy Body Dementia and my Nay career.  My neurologist agreed that this was a good exercise for my brain.  I enjoy writing about what is going on in my brain.
I have also gained a large support group from other bloggers in the LBD community.  I read many of their posts and have learned that many of you are going through many of the things that I am going through.  I recently read a blog about the feelings of a husband with LBD as written from the wife/care giver's view point.  This blog is such a strength and help to me.  Recently, I read about her husbands feeling and fear of leaving or her getting rid of him.  As I read that blog, I thought, I have had those feelings too.  Not directly, my wife wanting to get rid of me.  But more the idea of being such a burden that I can't see anyone wanting to be around me.  Now, let me first say, logically, I know my wife will never feel that way.  But, in the hollows of my dementia, when I am not totally connected to reality, especially at night, I get lost in my own insecurities.   I really belie e that is what many of us experiencing the uncertainties of dementia go through.  We are insecure!  The way of life that we lived, built, dreamed of is now slipping from our fingers and we can't stop it!!

Like I wrote earlier about feeling lost in the gun store, a place I normally feel completely at home in, I am insecure in many situations in my life.  Driving is becoming a challenge.  I can't drive as long as I used to.  And as a man, I think it is my job to do the driving.  The reality is, I really need to let that go.

There are other issues too.  Again, I have written about my fear of dealing with the everyday budget issues.  When my wife starts to talk budget, I have a fight of flight reaction!  That's not normal for me, but it is what it is.  The fact is, I am so insecure in my own abilities that I retreat into my own  mental happy place.   When I can sleep, sleep is my friend.

So, while I am logically sure my world will remain as close to the same as it can, I am constantly reminded of the changes, my own mental and physical changes, and where all this will lead me and my wife.   This is a difficult topic for me to open up about.  Yet, that is what this blog is supposed to be about.  

So, thanks to my other blog support group members.  You are a great help.  And thanks to my wife and family.  I know you are going through even more grief and worry than I am.   But, with GOD's help, we will get through this.