Sunday, December 28, 2014

My view of LBD

Much of my writings have been from the prospective of me teaching about LBD.  I figured that out as my wife was driving us home from the Commissary.    I often review my life in those quiet moments.  So, I decided to try to reflect on my emotions and perspective on how LBD impacts me. personally.

As I look back, this journey started with memory loss and some rigidity on,y left side.  I ignored it for a while and then told my wife and then my GP in Virginia.  He really keyed on the symptoms and sent me to a great neurologist.  At that point, I thought that nothing would be found.  But as the testing went on and became more intrusive, I started to wonder what the outcome would be.

Then, the neurologist sent me to The University of Virginia for a second opinion.  That really caused me to pause.  That testing and my neurologist's testing agreed and she told me she was convinced I have Lewy Body Dementia.  Linda and I were surprised and somewhat shocked.

My neurologist, who was an expert on this disease immediately prescribed Arecept and Namenda.  I now take Razadyne in place of Arecept, but they are the same thing.  Studied have proven taking these drugs early in the LBD journey help to defer the progression of the disease.

Now, four years down the road, I have seen many changes.  My reaction to the disease remains mostly the same.  I see what is happening to me as "interesting"!   I realize that seems weird, but it is how I view things.

here have been issues that depress me.  For instance, not driving, loosing my independence, and even the fact that I had to retire because I could no longer do my job effectively without extraordinary assistance.   Actually, I would have needed someone to do my job while I napped!  But then, at this point, who would drive me to work and tae me home?

The hallucinations did not bother me in the beginning.  The were small animals that I knew were not real.  But, seeing a man, in color, real as any man, walk across a busy interstate in front of me, as I drove shook me.  If I were closer to him I would have stopped or swerved to avoid hitting him and that would have caused an accident! You can see why  don't drive anymore.

I have written before about my depression over my loss of independence and friends.  Yes, I have friends, but they all olive in Virginia!  And I am in Florida.  That will not change.  That God for email and telephones.  This disease causes other issues besides memory failure and hallucinations.  For instance, I spend much of my days in another place and time.  I have day time dreams, while I am awake, that I am in the Navy, stationed on a ship, doing what I used to do.  That time continues to be comfortable to me.

I am depressed.  Some of it is chemical imbalance in my brain and some pf the depression is over my loss of independence, and isolation.

I also find conversations with new people difficult.  I cannot discuss things not related to my Navy experience since my mind lives in those times.  I am always asking people I meet here at Azalea Trace if they are Navy, where they were stationed and what the do.  This is difficult for others to deal with.

Then there are the "out of character" comments and gestures.  These started before my diagnosis.  For instance, at a Church business meeting, I would take the agenda paper and make a hat out of it and wear that hat!  My wife would "yell" at me.  She did not understand and neither did I.    Looking back, we both understand now.   There were other unscripted foibles too.  But they slip my mind right now.

I have said before that I am now in the second half of this disease and I am glad we live in this community.  I am not free to experience this disease without defense.  Before, I had to "pretend" to be normal all the time!    Why, because I knew most CCRC communities would not accept me unless I was a "Full Up Round"!   Now, when I do not feel mentally whole, it is OK.   I can be where I am without issues.

Then there is the physical side of LBD.  Again, I have written about the portion of the brain that controls the autonomic functions.  I suffer from constipation, urinary control issues, aspirating and choking, busy hands and now, more stability issues when I walk or stand and turn.  I have also lost much of my strength.  My legs have atrophied as have my arms.  I cannot life or carry heavy things anymore.  As I say; It is what it is.

All of these are aggravating at best.  They cause interruptions in my life but they have not, "YET" cause me a big issue.  They will!  I will fall and need medical attention sooner or later.  I live in the perfect place to meet those needs.

So, how am I dealing with Lewy Body Dementia?  I think I am doing well.   I am still mentally connected enough to discuss these issues most of the time.  Yes, there are times I cannot find the words to describe my emotions or feelings.  Yes, I am disconnected from the world around me.  Yes, I depend on my wife for more and more.  But, God is still giving me the ability to serve him with a Bible Study and I am hoping to find other Ministries here at Azalea Trace.  I refuse to give in to LBD.  Yes, the disease is winning.  Yes, I am willing to let LBD progress now that I live in a CCRC.   But, I will still use the abilities God reserves for Him for His glory.  That is what keeps me going!

I am still not angry about the disease.  I am not angry because elf the effects of LBD.  I am not even angry about not driving or loosing my independence.  Depressed over these things?  Yes.  Angry?  No.

What does the future hold?  I guess we will have to wait and see.  I hope you will stay with me as we take this journey together.

Friday, December 26, 2014

Settleing in at Azalea Trace

We have been here at Azalea Trace in Pensacola for just over two weeks.  We are unpacked, pictures up, and settled.   We took two long walks today and even found the second pond on this 122 acre campus. It is big enough to have a fishing pier.  But, there are signs everywhere warning you to "Beware of Snakes!"  Well, this is Florida.

Even the two miniature poodles love it here.  We got up this morning and decided to eat breakfast in the dining room.  Naturally, the meal and the fellowship were wonderful.

Then, today was our first house keeping day.  Our apartment was expertly cleaned by a very friendly, caring person.  We could not ask for anything better.

To say we are happy here would be an understatement.  The questions I have are; why didn't we do earlier? And why doesn't everyone do this? Now both questions are without answers.  We moved here as soon as God had it planned for us to move here.  And, this life style is not for everyone.  I understand that.  But, boy am I happy here.

Today is warm enough to be shirt sleeve weather!  Walking was a pleasure, and I even hit about a dozen balls at the driving range!  Again, that is part of our community also!

The furniture store that we purchased our couch and entertainment center from called and told us our furniture would be delivered 2 January!!  That is three weeks early!  Another pleasant surprise.

All in all, everything is going great and we are really beginning to feel at home her at Azalea Trace.  While I have noticed some stability and memory issues, I am more relaxed than I have been in a long time.  This was the best decision for us.  More later.

Monday, December 22, 2014

Honey. I lost the car?!

Today, we went to our house that we sold and cleaned the entire house in preparation for the closing.  We had some things left to bring over to Azalea and we loaded them into the car, along with the cleaning supplies, vacuum cleaner, and two miniature poodles.  After all, I could not leave them home alone for several hours, could I?

When we got back to Azalea, we unloaded the things to go in the apartment, and then I drove the car to the basement entrance to unload the things to go in storage and to the Azalea Store for sale.  It took several loads and some creative packing in our storage cage, but I succeeded.  Then, i took the shopping cart back that I used to move the stuff.  Took the steps to the first floor and got our mail, and walked down the hallway to our apartment.

Everything was good until I remembered the car.  Where did I leave the car?!  It was at the loading dock near the basement entrance.  Not a goo place for long term parking.  So, I had to go get the car, move it to our parking lot, and then go into our apartment.  Oh yes, I had to admit to my wife I lost the car, for a few minutes.

I was doing so well, and I enjoyed driving the car the 200 feet or so.  As you know, I no longer drive on the road, but in the parking lot or on the road in Azalea Trace's compound, I will, on occasion, drive those few feet.

Loosing the car is humorous but it is also a reflection of where I am.  I do things in order.  My mind organizes what I am supposed to do in steps.  As long as someone does not interrupt my steps with other things to do or social conversation I can accomplish that task, most of the time.  While I was unloading the car and moving things to our storage cage, I met and talked with a few residents.  But, I always got back on task, I thought.  When all the steps in my task were complete, I returned home.  What were the last steps?  Get the mail and return home.  OOPS!  I forgot, park the car.

Again, there is some very valuable insight into the workings of the mind of a person with dementia here!  Do not let this wisdom slip from your fingers.  You will be better equipped to understand your LBD patient if you understand my dilemma of today.

Where am I now, in my power recliner, watching Monday Night Football.  But, I bet I fall asleep before half time!

Sunday, December 21, 2014

What it is like to have Lewy Body Dementia: Update

Lewy Body Dementia is a little know disease that second only to Alzheimer's for frequency in the dementia world.  But, as more is being learned, the connection between Lewy Bodies and all other dementia's and Parkinson's is being drawn.

That being said, it took the death of Robin Williams to bring the mention of Lewy Body Dementia to the forefront.  Not even the death of the perennial Top 40 Disc Jockey, Cassey Kasum brought Lewy Body Dementia any notoriety.

All of us with Lewy Body Dementia (LBD) suffer from depression, anxiety, fear, and anger, caused b the unknown of our disease.  Some of us, like Robin Williams, cannot deal with those issues and choose to commit suicide.  Other, for reasons I will not speculate on, can stand our ground and make the best of a bad situation.   Many times, various doctors that I visit ask me if I am suicidal or homicidal.  I always answer no to the first and no, I like women, to the second!
You have to see the humor in that!

But, that does not mean I am immune to the stress of LBD.   For instance, I feel like a prisoner because I have no independence!  I cannot drive.  I have no bank account, no credit card I can use without my wife seeing what I am doing, and no time alone.   I cannot even manage my own medicines!  I am not complaining.  I am merely stating the facts.  Heck, I need my wife to take me to get a haircut.  I have not been that dependent on another person since I was 16 year old.

Besides all the horrors of LBD, i.e. Hallucinations, lost memory, stability issues, wet pants, getting lost, repeating the same story, drooling, aspiration, sexual dysfunction, constipation, depression, anxiety, and other issues I forget, the loss of my manhood, my virility and vitality, and ,my independence is the most frustrating and embarrassing issues of this disease.  I am not the man I used to be as my wife often tells me.  I have lost most of my body strength.  My arms and legs have atrophied and the skin hangs on y arms and chest.  Lewy Body is robbing me, day by day, of who I was.  And who I am becoming, I do not like! 

I suspect Robin Williams saw who he would become and did not like the prospect.  Again, just my uninformed opinion.

As I have said, the most frustration, emasculating, impact of LBD is that it has reduced me to a dependent, prisoner, of my keepers.   My wife could give me any pills and I would take them.   She is in charge of me.  I do not determine where we go what we do, or who we do it with.  Now, my wife tries very hard to include me in decisions.  But, that is more for my emotional well being than any need for my input.  And, if I disagree with her decision, direction or plans, I am quietly over ruled or ignored.

To be fair, when I was in charge, I did things much the same way. I know; "What goes around comes around!"  I guess I never thought I would be dependent!  Heck, I always thought I would die on active duty!  But now I am dependent on the kindness of my wife.  Lucky she is a wonderful, loving, caring, wife!  But, all that niceness cannot erase the sting of my loss of manhood and independence.  She knows that, and continues to be gentle with me.

So, what is it like to have LBD?  Terrible.  But, it is the place I am now and I need to be happy where I am.  And as tough as that is, I am trying to be happy.  That is all I can do.  Try!

Saturday, December 20, 2014

Our first 10 days in the CCRC

We have been residents of Azalea Trace for 10 days.  We are beginning to settle down and set our new routine.  The apartment is looking like an organized home and we are both sleeping well.  We have met a number of interesting people and we enjoy dinners in the dinning room.  We normal eat every night with different people.   I find I look forward to different dinner conversations.  It is energizing to discuss issues with people of differing opinions and experiences.  And dinner itself is gourmet quality.  Tonight I had bourbon honey glazed pork tenderloin!!  It was tender, tasty, and wonderful.  My diet is definitely suffering here!

We eat our breakfast and lunch at our dining room table!  A habit we stopped for a long time.  Yet, in this apartment eating at the table is comfortable and convenient.  So, another positive change in our lives.

We have not been in the pool or the gym yet.  We did look at the Chapel today.   It is very nice.  I need to find the billiards room and the card room.  I her some folks play pinochle.  

Even the dogs are settling down.  But, we still crate them when we go out for more than a meal.  But, they are barking less and enjoying our many walks.

Tomorrow, our son and his family are coming for dinner.  They have not had the pleasure of our dining room yet.  And, tomorrow night, one of the  three entrees is Prime Rib!!

Monday, we will Finnish with the house and make it ready for the closing.  

How am I doing?  Remarkably well.  I have had some hallucinations and I have noticed more distant, spacey, mental feelings.  I spent a good part of this morning trying to remember the job I was going to finish.  It was about noon that I finally realized I was dreaming of the job and did not have anything pressing to do.  Also, walking the dogs in the dark is unnerving for me.  I am more unstable when I walk, so the dark makes that even worse.  It is just a matter of time before I fall.   Good thing the grass is soft.

But, I feel more relaxed as I have written earlier.  This feels like a secure, home to me and that is good.  I am adjusting well.  I believe the real test will be after the Holidays when my wife is gone on Tuesday and Wednesday mornings.  How I react to they, will be the telling thing.

One more point.  We made the choice to move to a Continuing Care Retirement Community.  I knew this was the answer for the issues that will most likely impact us.  So, there was no push back from me.  My wife was not sold on the idea until we found Azalea Trace.   This community made her feel at home.  We met a woman moving is and her daughter the other day.  The Mom was not all that happy about moving in.  He daughter was obviously the one pushing the Mom into the move.  I believe, the Mom will be happy, but I see a period of anger and adjustment for her.  It is better if the people moving into the CCRC actually WANT to move there.   Waiting to find a community when the parent is unable to make the decision on their own is never going to be good.  Look early and often.  Do your research and find a place that works for the person living there.  Then move in as soon as possible!!  Everyone involved will be better off.  Trust me.  

Thursday, December 18, 2014

The impact of moving continues

Tonight, I had a few pictures and a key holder to put up.  No big issue, even now.  Then, there was the change of address issues!  That is a never ending terror!  I tackled the DMV online tonight.  I did this while I was being asked a thousand questions by my wife!  But, even with the antiquated website Florida has, I won!  Of course, voter registration is another issue.   I suppose, if I were an illegal alien or a terrorist, and I was registering as a Democrat, I could register by CB radio!!  But, we have to go in person or SNAIL MAIL  our change of address to them!  Wow.

This is our last move.  My last change of duty stations in this life.  My wife has informed me that we have moved 18 times in our almost 43 years of marriage.   That is clearly too many times.  But, I cannot go back and change that, even though I wish I could.  But, this is the last move just based on the cost of moving here!

But, these moving issues never bothered me before.  Maybe because my wife did them in the past.  But, she is trying to keep me involved in our life and she thought change of address issues were in my wheel house.  So, I have taken this issue on, or maybe it would be better said, the issue has taken me on!

I just do not have the mental capacity to deal with things that require patience or things that require concentration.  Especially after a busy day.  Again, these are just normal LBD issues.  But, that's what I write about!

Loud noises cut through me like a knife!! And other LBD issues.

It is just short of 10PM.  I am watching football.  My wife was in the bedroom, doing what ever, and all of the sudden BOOM!!   I felt like a knife went through my entire body!  I jumped and screamed her name.  She apologized for dropping the cedar chest lid.  No one realizes how loud noises impact me.  I am vibrating inside still.

Another issue is riding in the car.  When I think cars are too close, stopping too quickly, or are puling out in front of us, I flinch!  I told my wife tonight I really do not like riding in the car anymore!   Truthfully, I never want to leave our retirement community again!  These drivers are crazy!  Running red lights, pulling out where there is no room, cutting in front of you and then stopping!  I did not drive that bad when I was drunk!

I see more and more issues increasing with how I react to anything that is out of my comfort zone.  I guess that is just the new normal.

Wednesday, December 17, 2014

We are moved in!!

The move is done!  Everything is put in place.  I am even ready to get back to our ministry at Bay Breeze Assisted Living Facility!  We are back in service!  Wow, what a week!

Now, this was a normal move for us.  My wife informed me it was our 18th move!!  I did not know that, but she did.  The real fact is, it is our last move.

How have I done?  Fairly well.  I am very relaxed here at Azalea Trace.   From my prospective, my fight to appear normal is over.  I can relax, knowing I am in a place that will care for me, or Linda, regardless of what happens.  And that reality is liberating!

Ever since Dr. Bowles told us of my diagnosis, we have lived in the shadow of "What if?!"  We looked and toured many CCRC's with many different reactions.  Some would not admit me because of my diagnosis.  Some did not meet our needs.  Some were TOO expensive.  Some were just not for us.

Then we found Azalea Trace and we both knew this was the place for us.  And, Azalea Trace, with my full disclosure, accepted me!  But, we were on the waiting list for over a year.  That was a stressful time because we saw my disease progressing.  We both knew that I would not be admitted if I took a larger downward turn.  But, in God's perfect timing, we were offered an apartment, better than we dreamed of, and moved in before the end of the year.  God is good.

So, the move was disconcerting, caused me some anxious moments, and anxiety, but I am now settled and comfortable.  So, this move IS good.

Now, we can enjoy some of the fun things, like the heated indoor pool and hot tub!!  Merry Christmas.

Monday, December 15, 2014

Progress, part two

Well, all the boxes are unpacked, the furniture is in place, the new adjustable Tempurpedic bed is here, most of the pictures are hung, and things look a lot like home!  I still can't find most things, but Linda can  I do know where emu coffee cup is and the coffee pot.  I have taken a shower, so I know how that works, much to the relief of most around me.

Another BIG issues off our plate is my large gun safe, the one that weighed 800 pound, was moved to my old neighbor's home today.  We hired the same folks that delivered it.  They were great.  So that issue is done.  We still have t clean the old house and I have some sorting to do in the garage.  That will wait a couple of days.

Tonight, we enjoyed a very good meal in the dining room.  Tilopia for my wife and New York Strip Steak for me.  Have I mentioned the food here at Azalea Trace is great?!

My wife has gone to bed early and I am up, blogging and relaxing.   I will probably watch the Monday Night Football game.  We learned tonight that our two senior citizen poodles have been making noise when we are gone.  No problem, we will crate them when we are gone from now on.  We had to do that in the Senior's Apartments in Virginia Beach before we moved to Florida.  We put them in the crate when we went to dinner tonight and they seemed OK with it.  They will have to adjust.  So will I.

Returning to our apartment after dinner, we met a lady who has early Frontal Lobe Dementia.  She is having memory issues and wants to get together to compare notes.  I plan on keeping that appointment.

I feel much less stressed here.  I do not feel like I have to be alert all the time.  I feel totally secure and I am sleeping most of the night.  My stability is worse.  As I tell Linda, the floor moves.  Somewhat like being on a Destroyer in moderately rough seas.  I did fall the other day because of this increase in my stability issues.  No big deal.

We are settling in nicely and I believe both of us are adjusting well.

It is interesting to me, how God's hand has been in this move from many years ago.  God enabled us to save for our retirement.  God gave me a career that provided me a good retirement.  My Wife worked hard, with God's help, to get her Master's Degree in Library Science and worked for 30 years as a Librarian which gave us another retirement income and more savings.  God provided us with the wisdom to sign up for the Civil Service Long Term Care insurance when we were young.  We are in Azalea Trace because God provided for us.  He exceedingly met our needs when we were our neediest!

As I have written before, all Continuing Care Retirement Communities are expensive.   Some, more than others, but that is all relative to the economy of the area the CCRC is located.  God placed us in Pensacola to see Azalea Trace and place us there, where the money HE provided will go the farthest.  God IS good!

So, as you can see, I am content and relaxed, finally.  I now do not have to fight Mr. Lewy!  I can relax and that is a blessing in itself.  More later.


Thursday, December 11, 2014


We are moved in!  The boxes are starting to disappear, and our apartment is beginning to look like a home.  We had a good move, under budget, yesterday.  Everything was in the apartment by 2PM.  Much of this success is because my wife did so much packing and organizing.

Of course, we did not get rid of enough stuff.  So, more kitchen equipment will need to be culled.  But, that is small stuff.  Our new bed is not here yet, neither is the couch or the entertainment center,  But, we slept in our bed and have television to watch.

The hot water heater did not work, the thermostat on a NEW unit failed.  But, no hot water was no issue because we did not have a shower curtain rod until this afternoon.  Now we have both and I am going to take a shower tonight.

Another delay was our refrigerator.  I arrived today!  So now we can move our food over tomorrow.  All little annoyances, but all in all, a good move.

I now have to walk the digs instead of opening the back door to our fenced in yard.  The walks are good for me and they seem to like them.  They are also adapting to apartment living.  The seem to accept us leaving and are keeping quiet in our absence.

Just four more boxes and we will be unpacked!  Not all put in place, but unpacked!  The closing of our home sale is 5 January.  SO, things are coming together.

I am doing fairly well.  During the pack out, I was disoriented and felt like I was drunk!  I could not concentrate on what was happening.  Our son was with me and was a great help.  I am still somewhat confused and I am more unstable when walking.  SO, the move has caused me issues, but they were expected.

My wife continues to unpack and work hard.  I try to help but I tire easy.  Still, we were up until 1AM last night unpacking.  I hope we go to bed earlier tonight!

I think this will be good, once I find my underwear!  I do have coffee and I have my coffee cup.  What more could I need.

More later.

Saturday, December 6, 2014

The emotional stress of the move on me!

This blog is about the impact Lewy Body Dementia places on an individual patient.   More specific, how I am doing with the stress and emotions of the move.

The last couple of days my wife has been focused on packing the collectibles and personal items in out home.  Then, we sorted out the things we know will not fit into our new home.  That lead to the dreaded "Yard Sale"!  That was today!

We were up at 5AM!  But the was up most of the night organizing, sorting, and working on her Bible Study that she still has to lead on Wednesday.   She is a discussion leader for Bible Study Fellowship.  An international Bible Study started by a missionary named Wetherell Johnson.

Today, was 6 hours of "Show Time"!!!   Dealing with people that want the best things for pennies on the dollar.  But, we sold most of what we need too.  Also, my neighbors came out in force to purchase many things without even a thought of bargaining.  I actually had one neighbor give us MORE than we were asking.  I really do have some great neighbors and I will miss them.

We have also taken a couple of loads to the new place insulting hanging clothes.  We will carry more over tomorrow after Church and on Monday.  Tuesday will be busy getting ready for the big move on Wednesday.

So, how am I doing?  I am exhausted!  I am very grouchy and upset.  My poor wife has been snipped at and yell at more than a few times.  When things go wrong, or seem wrong to me, I react, without social filters!!   I cannot find anything in our house, our "Brain Center" where all the pills, electronics, and phones live, is gone!!  We have sold most of the furniture that will not fit ion the new place and taken down the art work from the walls, so the house echoes!!

My blood pressure is up, I am confused, and I do not know where many things are.  Then, there are the constant questions, taskings, and directions, that I need to react to.  Find the home warrantees, move this, build me a box.  It is all required parts of moving and I have been through it many times.  Most of our moves were self-inflicted, by me.  Even this one is my initiation.  But this one is different in that I cannot life anything because of my left shoulder, I cannot drive anywhere my self, and I cannot process more than one task at a time!   All of that stresses me!  I feel like a prisoner!   For instance, I need a haircut, desperately!!   Not on the schedule.  Yesterday, my wife needed more wrapping paper to pack with.  So, to keep her on schedule, I walked to the corner and bought some from the U-Haul store!  Walked!  Yes, it is good for me, and yes, I did not get lost.  But, I will be glad when this is over and we are settled.

Last of all, I feel frustrated and depressed.  I am mentally questioning all of my decisions.  That makes me even more frustrated and depressed.  So, you see where I am right now.

I will keep you informed.  I believe Wednesday will be a tough day, even the climax of the move.  Then, things will start to get back to normal, I hope.  

Wednesday, December 3, 2014

We are now residents of Azalea Trace!

Well almost!  We took custody of our apartment today.  We paid the remainder of our entrance fee, a check bigger than any one I ever saw, well enough wrote and was on the hook to make good, and we got our keys!  Of course, there are still some things to get done, like any new home.  And the apartment has not had it's final cleaning.  But all that will be taken care of.  Oh, our refrigerator is not here yet.  Again, it will arrive soon.

So, now no more free lunches!  All meals are on us.  And, now we have to follow the rules of the community.  For instance, my neighbor called me on my cell phone while we were eating lunch.  I answered the call, at our table.  My first demerit!!   They were nice about it.  But standing in the corner with a dunce hat on is my next punishment!

The next 6 days we will move small items into our new home.  Clothes, small boxes, nick knacks, and other small items.  I cannot lift anything of substance with my left arm.  I have a torn rotator cuff that I have known about for about a year.  It has become much worse and I now cannot even lift a coffee cup with my left hand.  I had put off the surgery until we were moved into Azalea Trace just in case I have a negative reaction to general anesthesia.  LBD patients have a 60% chance of having a significant mental decline after general anesthesia.  So, our caution is well founded.

If you are interested in these issues, check out the site.  The Lewy Body Dementia Association has numerous reports from caregivers, in the Community section, describing the cognitive downturn of their LBD patient in conjunction with general anesthesia.  Also, they have a few clinical studies supporting these reports.

We will actually move in next Wednesday.  I will keep you informed.  More later.

Wednesday, November 26, 2014

Our move to our retirement community

I have written before about our pending move to a Continuing Care Retirement Community (CCRC) in Pensacola.  We were offered and we accepted a two bedroom apartment in the Independent Living area of this CCRC.  We passed the medical and mental screening and worked with the facilities manager to make the changes and updates we wanted in the apartment.  For the last month or so, walls have been removed, bathrooms changed, flooring replaced, and ceiling fans installed.  We visited our apartment today and it is very close to being complete.

The other part of this journey was to sell our home in Florida.  That proved to be much more difficult than either of us imagined.  We were told by the media and the realtor that the market was moving and we would have no problem selling our home for what we were asking!  Boy did that opinion turn out to be wrong.  But, God had a plan and it was a good one.  Today, we signed a contract for the sale of our home, for less than we wanted, but still a fair price for us and the buyer.  God is good!!

So, now we can start to pack, move things, and get set for our move.  I expect we will move into our new apartment during the week of 8 December.  Of course, the facilities manager has not called me with that date yet, but, judging from what we saw today, it could only be earlier.  We are ready!!

This has been stressful for both of us.  I have been under a tremendous amount of tension and it has displayed itself in my mental ability.  I hope that I can now calm down and relax.  Any move is stressful for any person.  Add dementia to the mix and the tension and stress becomes almost disabling.  When we finally move in to our CCRC, I know I will have issues.  I did when we move here, and I was better then than I am now.  Where is my stuff!!  Security issues, and how does this work are all issues I will experience.  But, as long as I can find my coffee cup and the coffee pot, I will do fine!

I will keep you posted.

Saturday, November 22, 2014

What did my Wife say about my realistic day dream?

I received a question regarding my Wife's reaction to my realistic day dream.  Good question!   The short answer is;  "Write it in your log and tell tour Psychologist!"   The long answer is a little more complicated.

My Wife approaches my disease and it's progress in a unique way.  She mental catalogs everything that happens.  She uses those data points to track my progress and mental plan her approach to me and my disease.  She never treats me with any difference because of my disease.  She keeps me involved in the everyday decisions even if I do not make them.   Her goal is to keep me as normal as possible regardless of the progress of my disease.

However, she let her emotional "Iron Curtain" down today.  We were talking about the stress of our home not selling yet.  I expressed that I had considered backing out of the Azalea Trace move and just staying in our home.  Linda said; "Then everyone will see me age, quickly!  When I have to find a place that will take you or try to find a way to take care of you at home, when you progress further."  That was a monumental statement from her.  Because it is the First time she has ever expressed her concern about the future.

Lewy Body Dementia is truly a journey for both of us.  What happens to me impacted Linda much more.  I need to always remember that fact.  And while some may see her as a stoic, strong, woman and wife.  I see the cracks in that "Iron Curtain" and I understand how deeply hurt she really is.

I hope that answers the question one of my readers took the time to ask.  I appreciate your replays and support.  We are all in this together.

Thursday, November 20, 2014

Day dreams

Yesterday, while I was home alone, I got involved in a "Day Dream".  Everything in this dream was realistic to me.  I could see the people and the equipment in my mind, and I was there.  I was speaking our loud, not in my "Dream Voice".

I have told you before that I spend the vast majority of my day thinking about m career in the Navy.  That time is comfortable and enjoyable for me.  I was young, strong, fit, and in charge.  I knew what I was doing and even though what I did was dangerous, I had no fear.

Yesterdays "Day Dream" had me reporting to a Cruiser.  The day I got aboard, we had a Gunnery exercise and the guns failed to fire.  As I started to investigate the reason for this failure.  I discovered the Gunner's Mates were failing to do proper Pre-Fire checks.  They had not tested the firing circuits as outlined on the Pre-Fire maintenance card.  Furthermore, they did not know where the test equipment was that was required to do these checks.  I was livid.

In my "Day Dream" I was using "Sailor" talk to get their attention and I was actually walking around the house talking and gesturing.  Now, I have dreams that are about my Navy career and that are very involved.  But this time, I was fully awake and fully engaged in this "Day Dream".

It does not frighten me.  As a matter of fact, I was comfortable and happy as I went about restoring professional discipline to my new division.  I actually felt like I was back in uniform and and back in my element!

As my disease progresses,  expect more of these episodes.  Right now, I come back to "Today"after my "Day Dream".  But, I know that these episodes will get longer in length and then, one day, I will not come back to reality.  But I know, when this happens, it is a comfortable time for me.

Monday, November 17, 2014

Riding with you wife!

Most of you know I have all but gave up driving.  I have kept my license but I choose not to drive.  My vision issues, hallucinations, and the legal ramifications of my disease have caused me to do this.  I am not happy about it because I am fundamentally a prisoner in my home.  I cannot even go get a haircut without someone taking me!

Think about that!!  When was the last time you had to ask someone to take you to get a haircut??  Then, add the fact that I live in Florida, have no friends here, and only have my wife to chauffeur me around.

So, MEN, how do you like riding with your wife?!  I am not casting dispersion on women drivers.  But, I am not a good passenger, even if another man is driving, and I am even worse when my wife is driving. There is s dent in the floor on the passenger's side of our new Subaru where I have REPEATEDLY tried to apply the brakes!!

There is another issue.  Travel.  I hate airplanes.  The airline industry has degraded into a cheap bus company.  Their planes are flown until they refuse to fly anymore.  Most airlines are flying aircraft that are 20+ years old!!  Couple that with the fact that the aircraft are maintained by contractors that were hired by the airlines for being the LOWEST bidder!!  Not to mention the aircraft are flown by people that drink too much, carouse with men or women when they are supposed to be resting, and are held to schedules by their employers with salary cuts and bonus reductions.  Oh, you may add most pilots are ex-military pilots that either washed out of the military with bad evals and would not qualify for command or only went in the military to get they wings and required hours and then left the military to get a job as a air born bus driver.  Then, there dis the way the airlines treat passengers.  I remember she flying was luxurious.  People actually dressed up to fly.  Meals were served on dishes!  There was cabin service.  Luggage was free. There was NO carry on baggage and only coats could be in the overhead bins.  Now, flying equates to ridding a bus in rural Mexico!   The only thing missing is chickens in the overhead bins!!   And then there is the cost of the torture of air travel!!

No I hate flying and will only do it in extreme emergencies.

But, this limits my trips because with only my wife driving, we are limited in any distance we drive.  Where I could drive until the tank was dry, stop for gas, coffee, and a Head stop, and drive until the next tank went dry, she is tired, exhausted, before the end of the first tank.  I once drove from Virginia Beach Virginia, to the Pennsylvania/New York state line on the northeast extension of the Pennsylvania Turnpike in one stretch!!  My wife's bladder was in danger of bursting and I was in trouble for the entire weekend!  But, those days are gone.

So, another sad effect of LBD is the imprisonment of the sufferer!  And trust me I AM imprisoned.   I dearly miss my friends in Virginia! My life is devoid of male companionship and friendship.   But, there is little any of us can do about that.  It is, the way it is.  Or, as Betsy Walsh, from NAVSES Philly says; "It is what it is!"

So, I ask the question once more; How do you like riding with your wife?  I thought so!

Wednesday, November 12, 2014

Robin Williams had Lewy Body Dementia!

We found out yesterday and FOX News reported on air today that Robin Williams had Lewy Body Dementia.  Now, everyone will assume that he committed suicide because of this disease.  They will speculate that his hallucinations were tool real, too frightening for him.  Or, the prospect of the diseases ravages were too much for him to live with.  Both or none of that speculation may be true.  Only he knows for sure.  

But the god thing that may come from his death is that Lewy Body Dementia may now get some attention and those of us who choose to LIVE with this disease may actually get some attention.

I have read on the web page from others with LBD that they are sick of being told they are not sick or they don't look sick!  LBD is a fatal, neuro-degenerative disease with no know cure.  We are not sick, we are dying!   The Lewy Body tangles will effect every part of our brains until our involuntary functions stop and we die of septicemia.  Of course, the most prevalent cause of death in LBD patents is aspiration.  But the end have been given a death sentence as sure as Stage Four Cancer of the pancreas!  It is time those in the day to day practice of medicine and the general public recognize that.

Mr. Williams chose to take his own life.  That is tragic for his family and for the LBD community.  But maybe his death will give Lewy Body Dementia the recognition that will drive the medical field to actually recognize our disease and then they will try to help us.  

It took Lou Gehrig to publicize ALS.  He put a face on that terrible disease.   Maybe the death of Mr. Williams will do the same for Lewy Body Dementia.

Monday, November 10, 2014

Neurologists that actually TREAT Dementia?

I have read numerous posts on the blog about their difficulty finding a Neurologist that actually understands Lewy Body Dementia, well enough treat the individual with LBD.  I have had my own issues with neurologists.  Today, I did a search for the Gulf Coast and found few neurologists that state that they deal with dementia patients, well enough LBD.

The fact is, many neurologists try to tell us we have something other than LBD.  Strokes, Parkinson's, Depression, or other diseases, are the favorite diagnosis.  Then when we aren ourselves with knowledge, the doctors get angry and tell us to go away.

Lewy Body Dementia is either the second or third most diagnosed dementia.  And, recent medical discoveries are connecting Lewy Bodies to Parkinson's and Alzheimer's!  If that bears out, LBD is the MAIN case of all dementia's and movement disorders!!

It is a shame, be we in the LBD community must be pro-active.  We must do research on this disease and keep a log of the symptoms our loved ones are experiencing.  What we do may help medical science and it will certainly help our loved ones.

I also read a study that stated that individuals with autonomic function failures have a high risk of early death.  The fluctuations in Blood Pressure, constipation, dizziness, all are functions that are negatively impacted by the Lewy Bodies impacting the Autonomic functions of the brain.  I wonder him many neurologists have read that study.  I intend to take a copy to my neurologist to educate him!

Keep reading the LBDA web site.  Keep looking for new studies.  Knowledge is our best weapon against Lewy Body Dementia.

Saturday, November 8, 2014

Feeling dizzy

I slept in this morning and woke up to a call from one of my Navy Buddies.   After an 80 minute telephone call, I got up and made plans to apply a new paint sealant to our 2015 Subaru Outback.  After brunch, I tackled the car.  The sealant and tire dressing went flawlessly!  After two hours, the job was complete and the care looks great.

However, all the physical activity, the up and down action required to wax a car, apply dressing to the tires, and buffing left me suffering from dizziness and a feeling of looking at things from a distance!

These feelings have continued into the evening.  I assume that it is caused by the LBD impact on my autonomic functions.  That is my guess!   If it gets worse, I may seek medical advice.   But, I think it is just the new normal.

I have written about this issue before and it is just getting worse.  I suppose I should watch what I do.  But, I enjoy waxing the car and keeping it looking nice.  It is one of the few things I still enjoy doing.  So, I will keep on taking care of the car until I fall down doing it!

Still, dizziness and seeing thing as if they are far away is an issue I need to deal with.  So, I thought I would report it to you.  Remember, LBD is a journey that changes everyday.   This was today's report of my journey.

Tuesday, November 4, 2014


Thank You!!  When we started this blog, with the encouragement from my neurologist and my wife's technical ability, we never thought so many of you would enjoy and benefit from my open discussion of Lewy Body Dementia.  No accolade or award is as sweet as the honest  comments from your peer group.  I deeply appreciate your comments, prayers, and readership.

I have said this before, you are my support group, my treatment team, my LBD family and I appreciate each one of you.  As I have said before, I will continue to write as long as I can.  And, I am sure you recognize that my journey is speeding up and gaining intensity.  No big deal!  I am still here.  Maybe a little more grouchy, fuzzy, unstable, or disoriented, but still here.  And, as long as spell check works, you will be able to figure out what I am typing for a while!

Again, I thank each one of you for being there for me!

How does it feel to have Dementia?

Good question!  How does it feel, what are the sensations, how do you see things, does it hurt?   All questions I bet you would like to have answers too.

First of all, only the Parkisonian issues related to LBD cause physical pain.  Now, the Lewy tangles impact parts of the brain that control bowel and urine issues and those can cause pain.  But you should already know what constipation feels like.

As for the mental issues related to the dementia part of LBD.  If you are a drinker of alcohol you may have an idea as to what I feel mentally.  For instance, today, I see the world around me at a distance.  My brain is responding very slowly.  My vision is fuzzy.  And my body movements are slow and clumsy.

You may have had those issues if you had a little typo much alcohol to drink.  But, drink more and your speech becomes slurred, you drool, maybe even wet your pants!  You loose control of what you say, and even babble!  Nothing looks right to you.

Then, when you wake up, you are confused.  You do not remember last night.  Maybe you don't even know where you are when you wake up!

All of this relates to how the dementia portion of LBD impacts me and I bet most LBD patients.  Right now, I feel like I have been drinking, steady, for a while!  Things look distant to me.  I am tired, lethargic, and disoriented.

So, that is my primer for those of you who ask the question on how we feel.  I hope this helped.

And while you are doing that, do this!?

Do you remember the time when you could tell your wife or husband; "While you are doing what you are doing, do this other thing."?  I guess in the computer age they call that multi tasking.  Well, I can no longer do two or more things at once.  And, if my wife tells me to do something when I an already dong something else, I drop the first task and do the second task!  You can see where that could lead to a catastrophe!  Like, when I am cooking!

I have informed her of this problem, but she still insists on tasking me when I am already engaged in something.  I guess old habits are hard to break.

I can't even follow a recipe anymore.  I only cook things I have in my memory.  Like, I can cook eggs.  I can cook a steak.  I can cook chicken.  Don't expect me to follow the recipe on the Campbell's soup label for a new chicken dish!  I will be totally confused by the second ingredient.

I am passion this along because many of you have lived with your spouse for 30, 40, 50 years.  Most of that time, he or she has been mentally alert and able to do many things, at once.  But now, tasking us with more than one thing at a time is overwhelming and can lead to anger, frustration, outbursts, and even crying!

We are not who we were and we cannot do what we used to do.  Save both of us the frustration and give us one task at a time!  We will both be better for it.

Monday, November 3, 2014

Does your LBD patient "Pretend" to be OK?

It is called "Show Time" in the LBD community when we put on the show of being OK or normal when company is around.   But, does your LBD patient pretend to be OK when the caregiver is around or at a doctor's visit?  I used to!

It was how I was raised up in the Navy.   As a leader, we were supposed to emphasize the positive!  So, for decades, she someone asked me how I was doing or how things were going, I always said; "Outstanding"!  I would go to a doctor's visit and tell them I was doing good or that I was dealing well with the disease.  I actually had a neurologist in Virginia tell me I was a liar!!  She said I had not yet dealt with my disease!  She was right.

Now, more and more, I am trying to be honest when someone asks me how I am doing.  But, that requires me to be retrained.   Honesty is required on my part for others to understand where I am.  So, if I want them to understand where I am, I have to tell them, honestly.

So, I challenge you to challenge your LBD patient to tell you exactly how they feel and what is happening in their view!  This will clear boundaries between the caregiver and the LBD patient.  No longer will there be a chasm between the caregiver and the patient.  Both of you will understand.  But this will not happen if the caregiver does not insist that the LBD patient be painfully honest!

Yes, there are embarrassing topics that require discussion.  But honesty will pave the road to understanding.

Feelings and emotions that I notice

I am sitting in my den, with my two faithful miniature poodles, Marcel and Shari.  I like to sit here in the quiet and look out the window.  It is sunny out and the wind is moving the trees just a little.  The sky is blue, cloud free, and it is relaxing to me to look at this scene.  It could easily be a painting or a photograph!

As I sit here, I think of my past, where I have gone and what I have done.  I think about my youth, my parents, old friends, successes and failures.

All of this makes me realize the finality of this disease.  Our pending move to the Retirement Community cements this.  Why, because it is the last move.  Regardless of how long I live or stay lucid, I will never leave Azalea Trace until I die.  Now that is a sobering thought.

The old statement; I don't remember getting old, when did they?  regarding our children and grand children is correct.  Life has gone by so fast!  So many things have happened that I remember like they were yesterday, how can this be the beginning of the end?

But, it is.  And I might as well embrace it.  After all, Azalea Trace is a beautiful place with much to do.  In the visits we have had there, we have been treated like old friends by the residents in Independent living.  And, I will not have the worries of maintenance.  Yet, we have moved so many times in our marriage, settling in one place, with no chance of moving is difficult for me to digest.

I know this entire situation is a tremendous stress on my wife.  I can see it in her emotions, reactions to issues, and the level of worry she carries.  I am not the helper I once was.   Heck, I don't even drive the car?  Oh, I still wax it, wash it, and keep it clean. But driving on the road is probably long gone for me.

I yearn for one more time with my family from Cleveland, one more time with old shipmates, one more tour of a Navy ship, one more underway time, one more Firearms competition.  But, those thing are difficult to make happen.  I do understand.

So, I sit here, alone, except for the two poodles that follow me everywhere, and I stir around in my memory, stopping to look at the things that I did well and not so well.  Thinking, what if...  And know that will never be again.

Dementia is a strange, difficult, sad, journey for me and my wife.  The hardest part is that no one really understands where I am mentally or emotionally.  The truth is, they will never know.  That is the most cruel part of this disease.

Hug your dementia patient.  That means the world to us.

Sunday, November 2, 2014

Speech difficulties

I have noticed, lately, that I am having difficulties speaking.  I cannot find the correct words, I studded, and mumble, trying to get a thought out.  Now, for those of you who know me, this must come as a complete surprise!  Most of the time, you probably wish I would shut up!

It is not related to being tired or even stressed.  This problem is not always with me either.  It seems to be intermittent.  But, when it happens, I am frustrated.  It seems as if my mind cannot fine the word I want to say.  Then, my mouth, lips, and tongue refuse to work together to make the word come out!

I realize this is a classic symptom of LBD, but I promised to report any and all issues related to my journey with LBD, and this is a problem.

Related to this, is my mind jumbles letters together, or drops them out of words that I am reading.  The result is, I see and read a different word or a word that does not make sense.  You can imaging what an issue this is when I am Preaching!  But, even singing in Church can be an issue.   I simply lose the ability to read.  Not all the time, just intermittently, like my speech issues.  Again, I cannot tie it to anything like being tired or stressed.

It seems those Lewy Body Protein Tangles have found another place in my brain to clog up!  Maybe I should have changed my filter regularly.  You know, the old oil filter commercial; "You can pay me now, or you can pay me latter!"

Sunday, October 26, 2014

Old, alone, and unwanted!

You may know that one of my lifelines is a Seniors Ministry I have at a local Assisted Living Facility (ALF).  These people are sweet, salt of the earth, lonely people.  The are forgotten for the most part.  If their families visit at all, it is once a month or even less.  The visits are short, the conversations are stilted, and those who visit are glad to get our of the ALF as soon as they can.  It is as if they think they will catch whatever their relative has!

When the opportunity came to us for this Ministry, I was happy and frightened at the same time.  When I was younger, we had m\Linda's Father in a Nursing Home because his Alzheimer's had become combative.   It was difficult to visit him, especially in his last year or so, because he did not recognize us.  On the other hand, if I went out of the room to check with the nursing staff, when I came back in, I was a new visitor!  It made him happy, so who was I to argue.

Now that I am older, and dealing with LBD myself, I identify with those who I minister too.  They are very attentive during our weekly studies and they ask good questions.  After our study, they love to discuss the news of the day or any other topic!  They are lonely for outside contact and Linda and I provide a small dose of that needed medicine.

We have been blessed to conduct two Baptisms for this group.  The most recent was last Wednesday.  The gentleman I Baptized has advanced MS.  So he is very rigid and has difficulty moving.  Yet, he climbed the 20 steps to the Baptismal on his own.  His second issue is that he is afraid of water.  So, stepping into the Baptismal waters, which were about 3 feet deep, was a monumental act of courage for him. But, he did all he needed to and we Baptised him!  Praise the Lord!!

When he came out of the water, the smile on his face lit up Heaven!!!

Now, think of this.  The Activities Director of the ALF loaded up 11 moderate to severely handicapped individuals over the age of 70, onto a bus, delivered them to First Baptist Church of Gulf Breeze, Florida, and unloaded them into the Sanctuary for a Church Service!

The Pastor at First Baptist is 40 and has little idea how to minster to Seniors, especially those that are handicapped either physically or mentally.  He has approached me about starting a Seniors Ministry at First Baptist and I agreed.  Why?  There are many more individuals in ALF's all over Gulf Breeze that need and hunger for spiritual ministry!

They are not monetarily wealthy people but they are wealthy in experiences and love.  And every once in a while, there is one person, ready to accept emus Christ as their Lord and Savior.  They only need an Ambassador of God to help them close the deal.

Working for God with these precious people keeps me wanting to keep going!  I love them and they give me back more love and friendship than I could ever hope for.  Why don't YOU stop by an ALF close ego your home and open up a relationship with just one of the forgotten people.  I guarantee you will receive blessing that far exceed anything you invest!

Saturday, October 25, 2014

Activity blanket

My wife noticed I have difficulty controlling my hands when I am sitting.  She noticed this today at our son's home.  I am constantly ringing my hands, rubbing my arms, rubbing my pants, or other hand activities.  She recommend we get an activity blanket.  The idea actually excites me since I am always doing something with my hands.

I am either picking my fingers, or rubbing my hands, my arms, or using the computer to search endless subjects my mind comes up with.  So, maybe a blanket with different textures and maybe some mechanical activities might help me control this busy hand issue.

This is an admission on my part that my LBD is progressing and I am OK with that.  In fact, I am more and more giving up fighting this disease.  I actually feel better relaxing and not fighting this disease.  For instance, I do not drive anymore.  Yes, I still have my driver's license and I could still drive.  But, why should I?  Driving is difficult and stressful for me now.   Then there is the liability issue if I were involved in an auto accident as the driver.  So, why stress?

On the same point, if an activity blanket, or as it is sometimes called a fidget or busy hand blanket, helps me deal with my hands always searching for something to touch, then I want one!!

This is truly an interesting change in my mental approach.

No one like to read or talk about the tough times!

I notice many of the posts I write about the tough, emotional, issues that I suffer caused by LBD are the least read.  Yes, I can and do check statistics.  Why, I am interested in what interests you.  No!  I do not change what I write about.  Why?  Because MUCH of what I write is unfiltered, emotional, feelings and actually problems that are happening at the time I write about them!  This is a real time log of my life.

My wife is very resistant to read about LBD.  I have given her articles from LBDA.Org and she never reads them.  My son is the same way.  Why?  My guess is they have their heads in the sand!  As long as I am doing relatively OK they believe I am "normal" and they can relax.  If I mention a new or increasing symptom, my wife calmly changes the subject.  Now, in her defense, she says she mentally catalogs those symptoms and changes.  But, she does not read about this disease.

I on the other hand, have done tons of research because I want to know what is and will happen to me.   That is the technician in me.  ow does it work, why does it work, what was the last thing it did before it failed, and is there a way to fix it.

For instance, recently I have begun hand shaking.  This is new.  I have great difficulty getting my fingers on a button or even on the correct key wen typing.  The other day, I was trying to grab something with my thumb and it would NOT go where i wanted it too!  Annoying issue for me.

LBD is an emotional disease for the person with it.  As things go wrong, or as the Lewy Bodies settle in a new portion of the brain and screw that function up, it lets the sufferer know he is NOT in charge of what is happening.  For instance, blood pressure fluctuations.  I am experiencing more dizziness when I get up or move quickly.  This is something I MUST pay attention to, because I could pass out and fall!

Back to my point.  I do try to write about the good times and issues.  But, LBD is NOT a good thing to have and I find myself getting more angry about having it!  I guess that is normal!

Wednesday, October 22, 2014

Don't compare me to someone else!

When I was a little boy, and even into my teenage ears, my birth Mother, Betty Kampf, always used to hold me up in a negative way, against Henry Barry, the son of her friend and hair dresser, Cammile Barry.  I ALWAYS fell short of the excellent example that Henry set!  Right!  He turned out to be a draft dodger, he went to Canada to avoid service to my country.  Notice I said; "My Country".  Henry deserted My Country so it is no longer his, even though President Ford gave the Viet Nam draft doggers, this chickens and cowards, amnesty.

Henry grew up in the two parent home.  Yes, his parents did not sleep together and his mother had boy friends, but, he did not know that then.  He was a child of privilege!   His family was well off, if not rich.  His uncle owned a string of Buick dealerships, up and down the East Coast.  I don't remember what his father did, but they were well off.   I did not like Henry.  And I did not like being compared to him and always coming out in third place.

I never did that to my son or my grandsons. I have seen wives try to do this to their husbands!   "Why aren't you like so and so!  He coaches soccer, is president of the PTA, and is this and that."   I actually had a woman try to compare her husband to me, in front of both of us!  I drew her up short! Quickly!!

Two people are not the same.  We are all different!  We all have different experiences, skills, abilities, strengths, weaknesses, and habits.  

In any case, I have always hated being compared to others.  But, some neurologists and other doctors have tried this with me.  I treat them the same!  I let them know that my experiences with LBD are exactly that, MINE!!   What I am experiencing is most likely different than the next person.  Yes, we have some similar experiences.  But even those may be experienced differently or at different times or frequency.

My point is, lost, I suppose.  I was sitting here, alone, living in the past.  I had an urge to call my mother on the telephone, just to talk, be noise, and see how she was.  Then, Henry and how my mother treated me came to mind and I got angry and upset and decided not to call her.  Which is good, because she died in 1991.  But, that fact escaped me for a while.

Now, I am sure some of my fellow LBD sufferers experience the same sort of mental confusion.  But, their's is probably different than mine.  But we all are on this confusing journey, thing to make sense of where we are and where we are going.  Of course, we will never figure that out.  Maybe I should not be left alone at home!  Or, maybe it is good to deal with the emotions of the past.  The founding Commanding Officer of SEAL Team Six, Dick Marcinko, a fellow Slovak, used to say: "Pain is God's way of letting you know you are still alive!"  I wonder if that applies to emotional pain?  If so, my brain is still alive!!

Thursday, October 16, 2014

Stress of selling our home

As I wrote earlier, yesterday was great!  Today has been more difficult.  I was called by our realtor at 0800!  That's 8 AM!!  Is this woman nuts?  She said we had a showing at 2:30PM.  Then, an hour later she called and said we had another showing at noon.

I realize people have to look at the house to buy it.  But the stress comes when we have to get the two miniature poodles in the car and disappear for that hour or so.  We did OK for the first showing, except that we had to disrupt our friends from out of town's departure plans.  The sec on showing was not as easy,  We packed up and left well before the showing and we were headed back when my realtor called with the excuse that the showing realtor was running lat and would not be here until 4PM!  At that, I told my wife I needed to be home!

Being out of my familiar surroundings, trying to coral two poodles in the back seat of the Subaru, driving around in neighborhoods I don't want to be in is stressful and makes me angry.  And by the time I got home, I WAS angry.  SO, I went to sleep, after the late realtor took some woman around our home that was obviously not interested in the house and most likely not able to pay for it!

I have sold many homes, and I know it is stressful.  But now I have full blown LBD and I am not of the mind to put up with stupid, mental midget Realtors!!  I pray the house sells soon.

Great therapy!

Yesterday, we had a visit from an old shipmate.  He and his wife and brother and sister in law came to Pensacola to visit and vacation.  Today, is their 43rd wedding anniversary!  We have not seen each other in 31 years, yet it was like we have been together the entire time!

Sea stories, catching up on the last 31 years, and good fellowship.  It was a wonderful day.  Early yesterday morning, Chris, from Azalea Trace, called us to see how we were doing.  He asked if there was anything he could do and I said, I would like our guests to eat dinner in the Azalea Trace dinning room.  Chris said; "No problem"!

Now our friends, might have been a little concerned about eating dinner at a retirement home!  I am sure they pictured pureed food, no sharp kitchen tools, sparks, and bibs!  When we walked into the grad lobby at Azalea, they were awe struck!  Dinner was first class.  Steaks, tilapia fish, dessert, the salad bar, were all delicious. The wait staff went above and beyond.

After dinner, we took a tour of the facility and they were further impressed.  All in all it was a great evening.

Being with my old shipmate as just the therapy I needed.  When we returned home, we sat in the living room for a while, did NOT turn the television on, and when to bed early.  I fell asleep quickly and slept through the night.   Nothing is better for me than being with old shipmates.  Thanks Dave and Reba!  Come again soon.

Saturday, October 11, 2014

Doing what I liked to do, one more time

I am a NASCAR fan.  I watched a race, a few years ago, that Mark Martin won.  In the post race interview, he was in tears.  Mark said,  I know I may never win another race, so this is so emotional to me!

Today, my son and I went shooting at a new indoor range in Pensacola.  It is a "Class A" facility in all aspects.  As good as Camp Allen in Norfolk.  Just James and I.  We had breakfast, went shooting, in a very relaxed atmosphere, and the range personnel were friendly and engaging.  It was a good time and I eve shot pretty well.  Yes, my vision gives me pro blame.  I can no longer see the front and rear sights, and the target.  So, I have to line up my front and rear sights and then look at the blur that should be the target.  But, I know how to compensate.  Maybe I should change to "front sight" shooting.

The Mark Martin story came to mind and I realized this could be the last time I go shooting.  I tired easily and we were only on the range for about 90 minutes.  When I was an active shooter, I could shoot all day and still be fresh.  I remember IDPA matches at Blackwater in North Carolina where I would shoot, moving from one stage to another, all day in the heat.  Yes, I was tired at the end of the day, but I could still shoot the night shoot!  Today, I came home and took a nap.

The reality of all this is, LBD has robbed me of stamina, strength, and vision.  All things necessary to do what I have loved to do, for a long time.  Days like today illuminate the losses I have experienced.  These days bring all the is negative about LBD to the forefront.   Maybe, that is why I seldom do things like this.  When I do, I realize where I am in my journey.

Still, I enjoyed my day,  My son looked out for me all day,  He looks for the signs that am getting tired.   When I was younger, and so was he, he would complain if I wanted to leave the range before dark.  Now, he takes carer of me.  Days like today are important to me.  Bonding time with my son.  I need to make more of these happen.

Sometimes, it is hard to judge where I am in this journey.  On days like today, my position on the map that shows my journey with LBD is very evident.

Thursday, October 9, 2014

My wife, my caregiver, my friend

I have not written about my wife in a while.  I am sorry about that.  She is everything to me and I love her.  This is her second time around with Dementia.  Her father died of Alzheimer's in 1991.  Back then, there were no medicines, no memory support units, and no understanding of the Dementia patient.   If they were in professional care, they were tied to chairs if the wandered, left to themselves, and cleaned up and dressed only when visitors or family were expected.

Today, there are medicines to extend mental capacity, memory support facilities that do their best to give the Dementia paint a normal, fulfilling, interesting, life.  And more is being learned.  I have met professional caregivers through the Alzheimer's Association that have degrees in Senior Care!  That never existed when my Father In Law was suffering from Alzheimer's.

Since this is my wife's second dance with Dementia, she has some ideas as to what to expect in me.  Yet, I still surprise her.  For instance, before we knew I was affected by LBD, I would do unexpected, socially unaccepted, behaviors at Church Board meetings!  She would correct me, and even chastise me for my fooling around in an important meeting.  She, nor I, never that I had Dementia and she did not know at that time that I did not know what I was doing or that what I was doing was not acceptable.  She and I do now.

When I has a bowel accident, she never even blinks.  She just says, we can deal with this.  She helps me remember things, find the correct word, and deals with my need to always know where she is, even in our home.  She has never got anger when I ask her what her name is, or where we are, when we are laying in our bed.  She understands these issues and takes them in stride.

It was my wife and my Neurologist in Virginia, Dr. Mary Bowles, that encouraged me to write this blog.  My wife designed both of my blogs and still keeps them up to date and me on track.

She meets my every need.  She even anticipates my needs!  Let me relate something she did for me, early in this journey.  It was the night before an appointment with Dr. Bowles.  My wife wanted me to have my thought together to see her and wanted me to put together as symptoms list.  I did not want to.  I resisted her and became sarcastic.  She yelled at me and let me know this was not just about me!  She had an investment in this journey too!!  That was a very important lie eon for me to learn.  She does have a big investment in me and my well being.  She like being with me and wants me to be as well as I can be as long as God will let me.  Of course, I have to do my best and follow doctor's directions.    Now, I am a team player in this journey.

Her Dad could not help.   We never knew he was effects with Alzheimer's until her Mother died.  By then even if there was a treatment available, it was way too late.  We were blessed in that we were diagnosed early, by a tenacious Neurologist, and medicines were developed that would help me maintain or at least slow the progression of my Dementia.

Now, I am loosing mental ground at a faster rate.  We see evidence of that everyday.   I compare this to a slow leak in a tire.  n the beginning, the tire stays up and you can drive.  Then, as you loose more air, you can feel the car handle different.  Little by little, you notice the car does not drive the way it did.  Then, you hear the flopping noise of the tire as it comes apart and no longer supports that corner of the car.

I am at the stage where the handling is getting worse.  The tire is still there, but after loosing half of it's air, the car wobbles and sways, as goes down the road.

My wife has her hands full with me.  But she manages it well.  I am blessed to be her husband.  Thanks Linda!

After the diagnosis, why do we go to the doctor?

Discounting the Psychologist I go to for help dealing with my emotions, I wonder why we continue to go to doctors after we have a confirmed diagnosis of LBD?

Why do I ask that question?  Let's look at the facts.  My meds have not changed in a long time.  As far as the memory portion of my disease, there are no other drugs I can take.  Unlike my Neurologist in Virginia, this Neurologist does not do follow on cognitive testing.  I can agree with that.  I know my mental capacity is deminishing.  There is no need to spend money to confirm that.  And, why confirm tehe down turn.  since there is no other meds or treatments to help.  As far as my anger issues, my doctors are very reticent to prescribe any meds to help with that issue until I become physically violent!

But, I go to see the neurologist once every six months and the Psychiatrist every three months.  Yes, they write the prescriptions to keep me on those med that are slowing the process of my LBD.   But, I still see these visits as an increasing waste of time.  Today, I saw the doctor that writes the prescription for all of my memory drugs and my depression meds.  He asked some pertinent questions and then said he would keep my meds the same.

Baring a violent outbreak or other issues that would require institutionalization, I really don't understand what I have all these appointments.    I will see my Neurologist this month and I am going to ask him about my blood pressure drops that have lead to light headed issue and almost passing out.  Also, bowel issues and other balance issues.  Since Sinemet causes me so many negative issues, I doubt he can help with the balance issues but the other autonomic issues he may want to address.

I just wanted to bring this topic us, as the patient, and see if anyone else has issues with the numerous, I believe useless, doctor's appointments.  Of course, I may just be having paranoia issues as most LBD patients do.  After all, people have stole food from our home and followed me!  These things I am sure of.

Tuesday, October 7, 2014

How little things cause BIG issues!

I am in a period of stress and anxiety.  Our house is on the market.  We are under contract at a CCRC.  We have given them $35k and our apartment is in the process of being remodeled.  We are on the hook for a substantial last payment and monthly payments that are bigger than anything I have ever seen.  The sale of our home is required for this to work.  Even the mention of budget, payments, or money makes me sick.

Now, before someone writes me and tells me everything will be OK.  Or even that God has this in His hands.  I know that!  But, my mind does not process things like this in a manner that even relates to logic, truth, or faith.  Instead, I for into panic, fear, and depression.  I get angry, defensive, and my fight or flight emotion kicks in!

I have had many long thoughts and dreams about running away!  Really!  Running away, hiding, being homeless, and never having contact with this life again!  Serious stuff, I know.  But it is where my mind escapes too.

Those of you without LBD need to understand that those of us with LBD do not have a mind that deals with reality like yours does.  My mind is broke and does not function like it used to.  For instance, social filters.  You know, saying things in a social environment that are not appropriate.   That was early in the journey.  Now, I panic when I face change, or difficult situations, or even normal daily issues.

When we are at Azalea Trace, I am comfortable, even happy.  I feel it is the best place for both of us.  When we are win our apartment, even in it's pre-remodel state, I feel at home.  Today, we spent time there planning where our furniture will go.  But, now, a few hours later, I am in a panic.  Overwhelmed, frightened, and depressed.

So, I will retire to my bed and escape to sleep.

Monday, October 6, 2014

Considering a Continuing Care Retirement Community?

First of all, thanks for all the well wishes and prayers connected to our acceptance at Azalea Trace.  We are very blessed to be moving into this exceptional community.

I have been very open about our desire to move to a CCRC and I have received many strange looks, quizzical looks, looks of disdain, and questions about my sanity!  The last should have been know by anyone who has know me more than a week!  But the biggest question I get after; "Why would you do that?" is;  "Is that a place where they take ALL OF YOU MONEY!?"

The simple answer is NO.  But, they do have an entrance fee that is substantial.  Some CCRC's have lower Entrance Fees.  Some have NO entrance fee.  That's correct!   Some have no entrance fee.  However, in those communities, if and when you need assisted living or skilled nursing care, you pay at the going rate of that time.  Now, if you are just retiring, with no know major health issues, a no fee community would be good or even the best for you.  But if you are relatively sure you will need more care in the future than you or your spouse can provide on your own, a community that locks in your costs may be the answer.  It certain was for us.

Then, there is the tax break.  No, up front I will tell you I am not a tax attorney or a CPA.  You must check with the IRS, your attorney, and your CPA on any tax information.  However, my research tells me that a significant part of the entrance fee and the monthly living costs can be tax deductible as medical expenses because you are purchasing health care in advance.  Much like your premium on your medical insurance.  Now, most of us never reach the threshold of medical deduction, but with the entrance fee, you may.  Again, check with you people.

The other reason we are moving is peace of mind.  I cannot do home maintenance anymore.  Heck, I can't do personal maintenance anymore.  I need to wear my glasses to safely shave.  I am not permitted on ladders, after I cut the beam my ladder was leaning on at our Home Church in Virginia Beach!  Me, the saws all, the 2X10 beam, and a 20 foot extension ladder all came down at he same time!! Scared Pastor Fred to death!  So, you can see, home maintenance is not in my future.

Living at Azalea Trace provides all we ever wanted and more.  Is is costly.  Yes.  But God has provided for us richly.  He set this entire move up and I trust Him for our future.

I hope this answers some of the questions we have received.  We appreciate every one's concern for our well being.  And rest assured, we will be better off in Azalea Trace than anywhere else.  Come visit us after we move in and I am sure you will agree.

Saturday, October 4, 2014

My life in the past

I have written before about my life in my memories.  I spend a lot of my time reliving my life.  You will note I say, reliving instead of remembering.  That is because I actually can place myself in those memories, as if they are what I am doing right now.

I have had urges to call my Mother, even though she died in 1991.  I have had other urges to call or talk to other deceased relatives or close friends.   I have also had immediate feelings that I have the duty and I am late or that I need to get to work.

Today, I was shaving.  Nothing remarkable there, except I now need to wear my glasses to shave safely!  I can't see what I am doing without them.  Then, I was transported into the small bathroom of our rented home on Fairville Avenue on the west side of Cleveland Ohio.  I remember being a boy, maybe 11 or so, watching my Dad shave.  He used a shaving cream that came in a tube.  He got his brush wet with hot water from the tap, and then spread the soap from the tube on the brush.  He would then lather his face with the brush.  Then her would replace his glass.  I asked him, why do you wear your glasses when you shave.  Dad said; because I can't see what I am doing without them!

Reliving my past consumes much of my time.  Much of it is pleasant, like my memories of Dad.  Some is not so pleasant and some even upset me.   Some of these memories I cannot shake.  They stay with me all the time.  Others come and go.  Many of my mistakes and wrong doing haunt me and many times I have vivid memories of wrongs that were done to me.

I seldom think of the time I live in.  Politics upset me because I see the America  live dying.  So, I choose to actively ignore the news.   I find little interesting about the time I now live in.  The only time I am mentally engaged with the world around me is when I am teaching God's Word.  Otherwise, the past suits me fine.

Life was free of the confusion of my disease then.  It had a future and endless possibilities.   Now, I only see endless confusion with no future.   It is no wonder that my mind relives my past.

Thursday, October 2, 2014

Lewy Body ups and downs

Lewy Body Dementia is such an up and down disease.  I have written about the up times I have experienced recently.  And the good days are always shadowed by the down days.  Tonight the sundowning is worse, I am angry, and while I am still in control of my emotions, I am extremely upset and overwhelmed.

This week has been extremely stressful and busy.  Yes, good things cause stress too!   But it seems the good times make the down times deeper and more drastic.

I have also written about my increasing mental disconnection and fog.  This seems worse tonight.  Things that should not or would not upset me before are enormous issues to me now.  For instance, my wife was talking about budget issues and her successes in managing our resources.  I have told you before that my wife is an expert manager of our finances.  But her talking about it caused me great stress and anger.  Now that is not normal.

So, as we travel down the LBD road, numerous bumps, potholes, and sink holes seem to cause increasing disruptions in our lives.  These disruptions are difficult for the sufferer and the caregiver, equally.  I realize that.  But, I can only deal with my side of the pain.  I am not sure my wife understands that.   And I am not emotionally equipped to tell her.  

New phase of mental fog

We had our cognitive screening for admission to Azalea Trace.  My wife went first.  So, I was sitting outside alone, in a strange place, trying to hone my grasp on the facts I thought I would be asked.

Then yesterday, my wife had a scheduled Bible study and we had the appointment at Azalea Trace to select the materials and appliances for our apartment.  We decided to have me accompany her to save time and gas.   I was alone in the car waiting for her for three hours.

During both of these alone times I noticed a significant feeling of disconnected mind.   I could not remember the date, month or year.  I could not make mental connections or sequences.  I was in a fog.

These episodes are occurring more often and seem to be more disconnected.  As write this, I am having problems formulating words and sentences to explain how I feel.  This is truly difficult to experience.

I am now drawing a total blank.  So. I will close and add some later.

After a break;  I seem to need a small number of people around to talk to and just have by me.  I used to get energy from large groups.  For instance at Navy events where there are many people that I know or have a professional relationship with.  Those events used to energize me.  Now, they drain me and exacerbate my memory and anger issues.

This fogginess is increasing in depth and occurrence.

Wednesday, October 1, 2014

Things are looking up!

When I retired, I had a period of rebound.  Because I was away from the inherent stress of my profession, I felt better.  Less stressed.  I felt like someone had taken the 100 pound weight off of my chest!  It took a while, but that was how I felt after the initial shock of retiring wore away.

Today, we met with the facilities director to select the colors, flooring, appliances, and even the plumbing fixtures for our apartment at Azalea Trace.  After that meeting, I began to feel like the 100 pound weight had been lifted off of my chest!  I am beginning to feel like this is really going to happen!  We really are moving to a exceptional facility that is willing and able to care for Linda and myself, no matter what!  All my worry, concern, and searching will be done.  We have a CCRC that will meet our needs.  I am beginning to feel happy, secure, and even free of worry.

Yes, we have to sell our home.  But we have been on the market one day and we have already had a family tour our home!  Our home is in the ideal location in Gulf Breeze and I believe we will have no problems selling our home.  Yet, since it is not sold yet, that is a nagging issue for me.

So, when God brings the new owner of out home to our home, I will have nothing else to worry about.  Remember, I do not have any exposure to the budget.  So, those issues are left to the capable care of my wife, who is a great manager of our income and savings.  I am blessed to have her by my side.

So, things are on the up swing for me.  I know more down turns will come my way.  That is the nature of this disease.  But, outside stressors are being reduced and that is good.

Monday, September 29, 2014

We passed the test!

Today, we passed the cognitive ability test at Azalea Trace and we are officially under contract as Life Care Residents.  This means, whatever health or mental issue occurs, we are taken care of by the facilities at Azalea Trace.  Of course, they do not have a hospital, but full rehab facilities are there as well as skilled nursing, assisted living, and memory care.  We will be in the Independent Living portion of the community.

As we walked around and ate lunch today, I could not help but be amazed at the number of people that came up to us and introduced themselves. As you know, this has not been the common practice we have experienced here.  We ate lunch with a very nice couple that have been residents for a year.  The Husband told me, he has never regretted moving in there, as he enjoyed his custom made chocolate soda for desert!!

The Cognitive testing was administered by the RN that oversees all health care.  She was very pleasant and interested in us.  I enjoyed her.  Which is good, because her office is right next to our apartment.

Wednesday we meet with the head of Facilities to pick all the remodeling things for our apartment.  Colors, cabinets, flooring, moving walls, bathroom fixtures, everything!  That should be fun, until I have to pay for it,  But, it is our home.

I even met with the Staff Chaplain.  He offered me Pulpit time already!  Seems he needs some Sunday relief ever once and a while and he has had no one to depend on! It was nice to be wanted again.

So, today was a good day and we feel good!  More later.

Friday, September 26, 2014

I do not react well to stress

As I am sure you know, we are in the middle of the approval process to move into Azalea Trace, a continuing care retirement community in Pensacola.   If all goes well, we will sign our contract for occupancy on Monday.  Before that, we meet with the nurse and go through a cognitive skills test of some magnitude.  We have been assured by the staff that we will be admitted.  We did drop our medical screening reports from our doctor off today.

The next step will be to select the changes that we want made to our apartment.  We are not planning anything to drastic.  But we are going to move a wall to open up the kitchen.  Our tentative move in date is the first week of December.  So, things will begin to move quickly after Monday.

We have to sell our home, liquidate some furniture, and other home items including some larger kitchen equipment.  We will eat our main meal in the dinning room of Azalea Trace so we do n to need all the kitchen equipment required to prepare a meal for a Cruiser size ship's crew!!

Today, we went to the credit union and moved the money required for the down payment of the Entrance Fee.  We than will have to pre-pay the cost of the renovation and then, before we move in, pay the remainder of the Entrance Fee before we move in.

All of these events, issues, financial decisions, decorating decisions, have me stress and upset beyond belief!  Change is difficult for me and this will be much, much more difficult than the move to Florida three years ago.  While the end product will be good for me, the next two months are going to be tough.   I find myself getting angry and stressed whenever we discuss these issues.  My wife has to deal with these issues and she does good with me.  But I know my reactions stress her too.

I have an appointment next week with my neurologist and I am going to ask for some meds to help me deal with my anger and stress.  He has said before he could help with these issues and I am now ready to let him help me.  So, I will be adding another medicine to my daily regimen.

Living with this disease is challenge without any changes in my life.  With changes, I am overwhelmed and much more effected by my anger and stress.

Thursday, September 25, 2014

New OLD issues!

I was doing some research on the Autonomic issues caused by LBD.  I have had and written about a number of these problems that I have encountered in increasing amounts.  Inability to control body temperature, urinary and bowel issues, and even vision issues.  But, today I learned about two that I did not know about.  First one is irregular heart beat.  Now, I was diagnosed with that a while ago, but was that caused by the LBD or a heart issue?  I cannot say.  Then there is the fainting!  I have had issues with the room spinning, getting dark, and me passing out or almost passing out, ever since the beginning of this disease.  Now I learn it may be caused by my Autonomic system not being able to control my Blood Pressure!    It is already documented that my BP is erratic.  But now I know, or at least strongly believe, that this is caused by LBD!

These are important symptoms to understand.  They also let me know what parts of my brain the Lewy Bodies have effected.  But it also causes me concern.  I have passed out and get very light headed very often.  What is that going to become?  And, during my recent hernia surgery, the doctor asked me when I woke up;  Do you have an irregular heart beat?  Obviously I do and now I know why.

As a person with LBD, I have found out that the research into what this disease causes and effects is up to me!!  Most doctors, including neurologists, can't even spell Lewy Body Dementia!  It's true, I have had to spell it for doctors before!!  So, discovery is up to me.  Which means, it is up to YOU if you are a caregiver or person with LBD.

This truth is sad, if you think about it.  But it is the TRUTH!  So, arm yourself with reliable information before you see your doctor or have to go to the Emergency Room.  It may save your life!

Tuesday, September 23, 2014

Anger comes out!

Today, we had to go get my wife's medical exam for our pending admission to the Continuing Care Retirement Community.  After that, my wife recommended we get a haircut.  The lady who cuts my hair cuts my Wife's bangs also.  She does a good job, but she is set up in a women's beauty parlor with all the ugly smells of those places.  I know because my biological Mother lived behind a beauty parlor and I lived with her for about a year.  That is another story, but suffice to say, I got myself in a lot of trouble because she worked until 2AM every night!!

In any case, the barber was taking a long time with the fellow before us and after she was done with the haircut she was doing smart phone training for the idiot she had just barbered!!  After ten minutes of this foolishness, I stood up and asked her, loudly, are we cutting hair or selling cell phones?!   She told the patron I was kidding and I convinced these two fools I was certainly NOT kidding!!!  The fellow slinked off, apologizing to me.  I did not accept his weak apology.  I would rather have kicked his but!  Then my wife sat in the chair for her short trim.  I was in a seat, around the corner from where the barber chair was, so I could not hear their conversation.  The barber told my wife;  "It's OK, I understand, my Mom has dementia too."

It was nice that she understood and my wife appreciated that.

Earlier in the day, at my Wife's doctor's appointment, a topic, I will not divulge, that is very emotional for me, came up.  I exploded loudly in the doctor's waiting room!  I walked around outside of the office while my wife had her appointment.  I was calmed down by the time she came out.

The point here is, I am loosing my control of my temper!  Thing that aggrieve me or anger me I now let whoever is near know.  I realize this is a product of the failure of my social filters.  But, it is a big negative step in the progress of this disease for me.

Believe me, I try to control my temper and in the past, I have done well.  But recently, very recently, that control has failed.  Especially when I am tired or it is the evening and my sun downing has taken effect.  Clearly, the Lewy Body tangles have finally disabled the portion of my brain that controls my emotions.  I have also had a strong urge to cry recently.  Another classic symptom of dementia.

So, here we go dealing with a new issue.   I wonder how this is going to turn out?