Wednesday, July 30, 2014

Shaking hands

We lead a Bible Study at the local Assisted Living Facility.  I enjoy this weekly event.  To call this a Bible Study is a little miss leading.  Every week, I deliver a 30-45 minute sermon to ten or so lovable seniors.  They range in age from 70 to 97!   All of them are sharp as tacks and follow along in their Bibles.  They will stop me in a micro-minute if they disagree or if they do not see where I am reading or quoting.  We also conduct a Communion Service the last Thursday of the month.  We have been providing this ministry for over two years.

On the days that we provide Communion, we always offer Communion to any individuals that cannot venture out of their rooms for one reason or another.  Today, while we were offering Communion to one of our regulars in her room, my left hand began to shake uncontrollably while I was holding a small tray with the Bread and Wine on it.  My wife acted quickly and nothing was spilled.

This is not the first time I have had hand shaking issues but it is definitely the most concerning.  Most of my parkinsonian symptoms have been the rigidity and stiffness in my legs and now in my arms and shoulders.  But shaking is starting to increase.  I also notice it when I lift my coffee cup or pour coffee out of the pot.  It seems things with some weight cause the shaking.

This could be related to the rigidity issues and the muscles fighting with themselves.  Or not.  But it is an increasing issue.

So, as is my purpose for this blog, I am sharing another change in my condition in hopes of keeping you informed and maybe being a help to  to others dealing with LBD.

Friday, July 25, 2014

Things they weigh me down

Since I have been afflicted by LBD, some things have become a weigh on my outlook as well as my mind.  Many of the things that some people find rewarding, relaxing, or even sought after, cause me to feel overloaded and overwhelmed.

When we lived in Virginia, my wife and I agreed to sell our house and move into a Senior's Apartment.  I truly felt free when we lived there.  I had people to talk too that were the same age as me.  I had NO maintenance.  And I had no worries.  When we wanted ceiling fans installed, maintenance did it.  I wanted another cabinet in the bathroom, maintenance installed it.  There was a gym, a pool, and again, people to talk to that understood what I was going through.  The seniors even went out, once a month, for dinner and a social time.  And, any evening the weather permitted, there was a group of people, out by a garage, sitting on lawn chairs and talking.

We moved to Florida and I have none of these things and I HAVE all of the maintenance of our home and all of the worries of maintenance. I have no one to help and everything to do.

Another weight is our future living situation.  We are on the waiting list for Azalea Trace.  That list is not moving.  I am on the waiting list for the Armed Forces Retirement Home in Gulfport Mississippi with a prospective move in date of November 2014!  That facility meets all of my needs but excludes my wife.  So, another worry there.   While we have looked at a number of communities that meet some or all of our needs, Azalea is the only one that meets all of our needs in one package.  But, they cannot even begin to tell us when we will move in.

Then there is the issue of ME passing the mental testing required to prove I am able to live independently!  Since I am experiencing progression of my mental decline, I worry if I will even be accepted at Azalea or the AFRH in Gulfport.

Now, I hope you understand the things that worry me.  I have totally given up on moving back to Virginia Beach.  But I would like to settle in palace I can relax and spend the remainder of my days, in peace, without worry about my surroundings.  That does not seem to be too much to ask for, does it?

Tuesday, July 22, 2014

I had an appointment with my Psychologist today

I have to admit, I NEVER thought I would be meeting with a Psychologist.  I was a U.S. Navy Master Chief Gunner's Mate!  We are tough, independent, leaders, that do not ask for help!!  Well, LBD taught me that I needed help.  I needed someone, who I could talk too about MY issues with this disease.  Not to mention MY issues with my Wife and family as we all deal with this disease.  And it has helped me!

Today, we discussed our trip to Iowa and my "Christmas Tree" hallucination.  His opinion was than the "Christmas Trees" impeding my trip to the bathroom represented me being trapped in my routine.  He said that I cling to my routine so hard, that my fingers hurt!  He is correct.  He also said it was good that we took the trip and broke my routine.  He was also pleased that I actually enjoyed myself and had such a good time visiting with my Wife's cousin.  All that is true.

Some of the things we discuss I will not write about.  But, it is good to be able to talk to someone, unrelated to me, without retribution, that has a professional opinion that can help

I meet with my Psychologist once a month.  I find that is all I need right now.  I am totally open with him and I know he is totally confidential with what I tell him.  These meetings are beginning to help me deal with Florida and helping me feel more comfortable here.

We also discussed how secure and serene I felt in the Memory Support unit at a local retirement community that we visited.  He seemed surprised at first at my contentment with the confines of the facility.  Until I told him of my need for security and safety.   Then he understood.

So, if you are a LBD patient, I recommend a visit to a Psychologist.  It is not a sign of weakness!  It IS a sign of strength.  It takes strength to admit you need help.  I know!

Monday, July 21, 2014


I dream every time I go to sleep.  My dreams are very realistic.  Realistic to the point that sometimes, I continue to act on the topic of the dream throughout the day.  Many times, my dreams are about a tack or job I am working on and when I wake up, I continue to think and try to accomplish that job.

Other dreams are about people of my past that I miss.   Some of them are now passed on, some are not.  Many times, I wake up trying to contact that person, as if they were still alive.  Many times these dreams upset me.

Then there are violent dreams.  Fights, survival, Navy events involving gun mounts or small arms.  Many of these dreams cause me to actually "Fight" in my dream.  Or, I am moving my hands as if I was using tools in the gun mount.  I know this because my wife has observed these actions and been the recipient of one of my punches in my sleep.  This REM Sleep disorder is "normal"in LBD patients.

Sleep is my refuse and I like to sleep.  I nap daily and I retreat to the bed whenever I am upset, agitated, or angry.  If my two miniature poodles and I are in bed, I am secure.  Why, because if I hear, feel, or see something, and the dogs do not react, I know what I see is not real.  I did not have that insurance policy in Iowa recently when I was trapped by the Christmas trees when I got up to go to the bathroom!  That hallucination has upset me greatly.

My dreams continue to effect me and upset me.  Much like my hallucinations, they seem real to me.  And the reality of these dreams and hallucinations is increasing.  We will see where this leads.

Sunday, July 20, 2014

Fear of the future!

I have been trying to figure out why I am so upset, so agitated, and why I am trying so hard to find a retirement community to live in that meets my wife's standards of location, care, accommodations, and cost.

It may be fear.  Fear of my future.  Fear of the destination LBD is taking me.  Fear of the unknown.

I am consumed over finding a safe place for me to spend my remaining days.   I know I have lost my ability to protect myself and my wife.  My hallucinations have become more real and more disturbing.  The Christmas Tree hallucination really unnerved me.  And now I know where my fear originates.  In the unknown.

My wife does not understand.  I am unable to explain.  But I am sure that I need to find that place of safety and security soon.    Am I depressed?  Yes.  I have lost my independence, my manhood, and my ability to make my way in the world.

Fear never drove me before.  It is a strange emotion for me.  But, fear is now the driver.  Not fear of death, but fear of living with LBD.   I hope I find that safe place, before I do not recognize I am there.

Friday, July 18, 2014

I can't remember anything!

OK, that could be an over statement.  But, my short term and even my long term memory is degrading.  At a dinner out last Wednesday, with my Nephew and his wonderful family, I could not remember my Daughter in Law's name!    I loose thoughts while I am processing the very same thought!   This is really becoming a problem.

Right now, I have lost my entire thought process for this post.  So, I will leave it right here.  I am becoming concerned that I am loosing total control of my thought process.

Wednesday, July 16, 2014

The effects of travel on me

We just returned from a 6 day trip to Iowa for a family reunion.  We stayed with my Wife's 94 year old cousin.  She still lives in her home, cooks, cleans house and pulls weeds in the yard!!  She is doing better than I am!   It was a very pleasant visit.  The reunion was on Saturday and there were over 100 people there.  It was a big success and a wonderful time of family members connecting.

That being said, the trip has taken it's toll on me.  For instance, either Sunday or Monday night, I had to get up to go to the bathroom.  Nothing new there.  I go out of bed and headed for the bathroom, and I was immediately surrounded by decorated Christmas trees!  No matter which way I turned, there were Christmas trees blocking my way.  They seems to have substance and actually impeded my movement.  Finally, I was able to read through the trees and feel the wall, the dresser, and finally, the door.

I also had a very vivid audio hallucination and saw a man walking across the back yard that was not there.   Since we have been home, I have been more mentally disconnected, disoriented, and confused.  I have said before that I do not travel well.  But this trip illustrated that fact even more.

It is disheartening since I was feeling pretty well before we left.  But that is the nature of LBD.  The "Up and Down" nature of this disease gives you false hope one day and despair the next.  I try not to attach too much positive energy to my "Up" days and not to be too dismayed by my "Down" days.  But, it is hard to do.

Right now, I am leveling off a my lower mental stage.  Not a bad position to have.  Level, is always my goal.  It really does not matter where I am, I just want to be on an even keel.  It is sort of like working for a boss that is a jerk one day and a good guy the next!  I would much rather work for the jerk that is always a jerk!  At least I know what I am dealing with everyday.  It is the same way with LBD.  I know this will progress downward.  So, I would rather go downward and stay there, than go down and then up and down again.

So, I do not think I will travel for a while!  I am not ready for another downward turn.