Tuesday, December 27, 2011

Happy New Year!

In a few days it will be 2012!  Happy New Year!  I look at the changing of the calender with interest and maybe just a little pensiveness.  I just read a new study that presents the idea that Lewy Body Dementia patients have a life expectancy shorter that like aged Alzheimer's patients.  I found that interest and a little unnerving.  Yes, there are individuals with LBD that have survived 20 or more years.  Yet, the study found that the average life expectancy was eight years!  Now, don't get all weak knee on me.  It is a study, and that is an average.  But, it still causes me to pause since I am at the 4 year mark and I am seeing an increase in symptoms and a speeding up of their development.   For instance, I have written about the increase in muscle cramping and pain, especially in major muscle groups.  Today, while driving on Interstate 10, I had a muscle spasm that caused me to speed up and slow down, maybe 3 miles per hour, just for an instant.  No big problem yet, a big problem.  I don't tailgate, so it would not effect me there, unless the spasm lasted longer.  I drive now, but I wonder how much longer.

Another issue is perspiration.  I break out in major sweat just doing minimal labor.  Like removing the sheets from the bed.   I know from reading that the automatic functions of my body are impacted by the LBD.  But, it is still increasing and therefore an issue to look at.

I am more emotionally impacted in the evening, and this has increased somewhat.  I need my quiet time.  But, I also need to get out and about, even if I don't think I do.  For instance, I had no thought of going anywhere today.  But, my wife knew I needed a day out.  Again, I did not know that.  But, I agreed and we left the house at 9 AM!  We were out until 4:30 PM, a long day for me.  I enjoyed it and she knew it.  My wife always knows what is good for me.

Back to the New Year.  I am not afraid of the future.  I am interested in how it will unfold and I am concerned over the suffering my family will go through as I deteriorate.  This is inevitable, but still it causes worry.  So, as I look at new medical and scientific information and compare that to what I know I am experiencing, it causes me to pause.  When we are young, we want the days to pass quickly as we wait for those milestones in life.  Christmas, our driver's license, graduation,  even retirement.  Now, as I enter the home stretch of life, I am not so anxious for that quick passage of time.  Yet, I also know what the future holds.  The question is when, not how.    

Remember, I write this blog to describe what I am experiencing as a way of release for me and a resource for those sufferers of LBD and their care takers.  It truly does help me and I know it helps others because they have told me so.  Their communications with me is also a great comfort.  I am able to communicate these feelings, emotions, thoughts now.  In the future, I am sure my wife will take over the writing to continue this string to it's natural conclusion.  

Friday, December 23, 2011

Merry Christmas!

Merry Christmas to everyone!    This is a season that I have always had problems with.  Even before LBD, I suffered from depression and withdrawal during Christmas.   I did not like the decorations and made Christmas drudgery for my wife.   This year is different!  I have enjoyed the season.  I wanted a Christmas tree.  WE bought a new tree and I put it up as soon as we got it home.  Then, I helped decorate it.  I can truly say, I am fully enjoying this Christmas!!  No depression, No withdrawal.  This is good.   I do not know what brought the drastic change, but I am glad it happened.  So is my wife.

While I know that any good time is followed by a severe degradation of my condition, I am really enjoying this respite.  I will take the bad, later.

I have seen some new articles about Lewy Body Dementia on the Web.  It seems there has been more recent research on our disease that centers on the prognosis.  While some will take this news badly, I am glad to see more attention being paid to LBD.  I pushed my Neurologist for an accurate diagnosis so that my wife and I could concentrate on research and medicines specifically designed for my disease.  I never liked the "Shotgun method" of addressing anything!  Check out what is available on line.

Again, enjoy this season.  It is a season of hope and love.  That is all we really have.  Merry Christmas.

Tuesday, December 20, 2011

Tired, worn out, weak.

My son and I spent the day touring the USS Alabama.  It was wonderful for me to be back on a combat ship. As a tech rep at NAVSEACENLANT I worked 16" Guns on the Iowa class Battleships.  The ones on Alabama are 16"/45 but still awesome.  It was great, I was home.

There is always a "but" in today's stories though.  That would be that for the first time, I had difficulty getting around the ship.  Normally, before LBD, I could go up and down ladders, in and out of hatches, without ANY effort.  Today, after an hour I was tired,  We broke for lunch and in the afternoon, I was stumbling, having trouble lifting my legs over the "Knee Knockers" and in general having trouble moving about.  Tonight, even after a soak in my son's hot tub, my legs are stiff, tight, and sore.   I know, what am I complaining about, I got to go see the USS Alabama.   True, and it was wonderful.  But it reminded me of what is happening to me and that always pulls me up short!

Again, this is a report, not a complaint.  Just two months ago, when my wife and I toured the same ship, I was able to get around without pain or difficulty.  Today, that was not the case and I believe that is a progression of my LBD.  I know, soon, I will need my cane all the time and a walker some of the time.  I expect that.  For now, I will remain stubborn and hard headed until I fall and break something!  That's my way of fighting back and not giving in to LBD.

Thursday, December 15, 2011

Where do I go from here?

This posting will upset those close to me and I am not writing it to evoke that emotion.  However, I need to record what I am feeling, my reactions, and my emotions.  I must be totally honest for my own well being.

The move to Florida has had it's benefits and issues.  I did not realize how much I liked having the Grandsons, my son and daughter-in-law so close.  We have had a number of family meals, outings and talks, that would not have happened if we lived in Virginia.  We have more planned.  Another positive is, this year, I am enjoying Christmas!  I wanted a big Christmas tree.  I put it up without prompting and even decorated it.  That is different for me.  I am getting more acclimated to the area and even drove back from the commissary today, without the GPS!  I did not get lost once.  So, all these things are positives.

However, my mental acuity, my desire to stay home,  my moodiness, depression and difficulty with nights has become more of an issue.  I continually have issues with noises at night and I have problems getting to sleep at night.  I do not feel, in my mind, that Florida is my home, even though I like this house.  My emotions tell me this is a nice place to visit, now let's go home.  But, my mind tells me, my stuff is here, so this must be home.  I am in conflict.   I spend more time thinking about the past, my parents, my Navy career, old shipmates, school friends.  I look up old friends through computer searches, but I don't contact them because I fear rejection.  I am secure in my home, and frightened otherwise.  It all wears on me.

Another frustration of LBD is the continual "on and off" of this disease.  I have had times that I felt there was nothing wrong with me, and other times, I feel so out of it, that I don't know how to take my next step.  I got a haircut today, and for a while, I was really not in the chair.  I could not figure out how my hair got so long.  After the haircut, I sat on the bench waiting for my wife.  I could have been anywhere.  Florida, Virginia, Ohio, California, anywhere.  Then my wife showed up and I was back "on".  That is very frustrating to me.  I had another thing to write, but it is now, not in my mind.  Another frustration.

So, "Where do I go from here?" is really the question.  My logical mind says; "This is home now."  My LBD mind says;  "Where do I go from here?"

Friday, December 9, 2011

Evening anger and stress

I have been blogging quite a bit lately.  There are two reasons;  One, I have noticed more issues.  Two. I need to release the stress through my writing.  Writing these blogs feels like I am talking to friends, who care.  It is good for me. Tonight I am writing about my evenings.  When the sun goes down, I am really noticing an increase in the effects of noise and stress.   I have written before about how noise causes me to react negatively. I get angry, yell, cringe, recoil, to a loud noise, the increase in volume of the television commercials, or the telephone ringing.  I also notice that I am more verbally aggressive to things I view on the television.  I say things I would not normally say and react in a manner that upsets my wife.  It is unintentional but, disturbing just the same.

Another issue is my reaction to stressful situations.  During the day, Things bother me less in the day than at night.   For instance, television shows.  A drama during the day, I view as entertainment.  But at night, the same genre of drama upsets me so much that I need to turn the show off.

Another issue happens when there is an issue in our household.  I try to remain calm, not loose my temper, and not react to others emotions.  But that internal fight causes me emotional issues, internal anger, and depression.   I try not to show it, but I know it shows.  Just the same, loosing my temper over something, big or small, is not productive and certainly not good for me and those around me.  I am truly not sure how to deal with this issue.  I will bring it up with the new Neurologist in January.  That's not too far away.

PS;  One other issue, every evening my legs now hurt, ache, feel tight, like the muscles are fighting with each other.  During the day, if we walk a moderate amount, my legs hurt and begin to get weak.  The fact is, I just cannot walk as far as before.  Walking is an exercise my wife and I both enjoy.  But I cannot do our Batann Marches anymore.

I also notice other large muscle groups being painful in the evening, even without excessive use during the day.  But it is my legs that worry me.  The Family Practice Physician I visited yesterday did a leg lift test and then asked me if I noticed weakness in my legs.  I told him I had and he acted like he already knew what my answer would be.  Again, something to discuss with the new Neurologist in January.

Funny things

Yesterday's doctor's appointment brings a funny story to mind.  A while ago, I had an appointment with my previous neurologist's Psychologist.  She and I had a good discussion about how I was dealing with my disease and at the end she asked me; "Are your suicidal?"  I answered hew with a simple, "no".  Then she asked me; "Are you homicidal?"  My answer was a little longer,  I told he; "No, I like sex with women!"  It took her a minute to digest my comment, and then she burst into laughter.  

I had an Executive Officer on a ship that I was stationed on that always said; "If you aren't having fun, your doing something wrong.  Life is supposed to be fun!"  I agree with him and I try to find humor in anything I can.  That moment was funny, at least to me.

Thursday, December 8, 2011

Found a new Doctor!

One of my fears with the move to Florida was finding a doctor I could relate too.  My Family Doctor in Virginia Beach was a wonderful, caring, personal, man with professionalism and compassion that is rarely seen.  I was his patient for 15 years and I did not want to leave his care or his friendship.  Today, I went to visit a Family Practice doctor who was recommended by my Son's Brother in Law, who is also a Doctor.  This fellow is very caring and seems genuinely interested in my care.  He listened to my ramblings and I believe he was interested.  However, I learned something today filling out all the forms, answering all his questions abbot my condition, my past injuries, my exposure to the hydraulic fluid in the Navy, and my surgeries;  I learned that I am SICK!  There's a lot going on with me and none of it is good.  I am a wreck!  I was rode hard and put up wet.  I abused my body and the Navy did the same, for over 40 years and now I am paying the price.

I suppose this is nothing new to you who read my blog, but it just overwhelmed me to openly discuss everything at one.  In one 45 minute appointment, we discussed ten years of medical procedures, operations, medicines, tests, and symptoms.  Again, I say, WOW, I am sick!!

I also had difficulty conveying all of my issues.  I would formulate an answer to his question and then loose half of the answer.  Then, two questions past the answer I lost would pop up in my memory and I would tell him about that issue.  He must really be confused!  I know I was.  But, he calmly listened and asked leading questions.  I almost felt like I was talking to a speed dating service!   Maybe not.  But, it was rapid fire questions and answers, separated by gaps in memory on my part.  But, he is a keeper.  Now, we will see how the neurologist is in January.

Wednesday, December 7, 2011

Law and Order on dementia

Tonight, my wife and I watched a new episode of the television show, "Law and Order, Special Victims Unit".  It addressed the effects of Dementia on one's ability to understand the difference between right and wrong.  I will tell you that the writers went around the "Prostitution" corner to portray this issue and I wish they would have chose another venue to portray the terrible effects of Dementia.  But, at least they DID show the terrible confusion that someone with Dementia suffers.

The person effected with Dementia was a retired professional football player suffering from Dementia from the terrible beating that football players take starting in "Pop Warner" youth football, high school, college, and maybe, if they make it, professional football.  However, many military men have had numerous, repetitive concussions and suffered them long before they came under the scrutiny they are now.

In any case, the person suffering from Dementia commits suicide in the end because he finally faced his disease and he could not live with the reality of that truth.  One of the facts that this brought out was the need, the absolute necessity to diagnose Dementia early.  Why, because when we are still in "The Now" we, the effected persons, can deal with the disease logically.  We can talk about Dementia, research it, digest it.  The person in "Law and Order" was pretty far down the Dementia path when he finally faced his disease.

Do we, those who suffer from Dementia think about suicide?  I cannot answer for everyone, but I have.  But, I choose NOT to take my own life because I did not give myself life, GOD did.  Therefore, I cannot, I am not authorized, to take my life. Truthfully, it is not my life, but Jesus life, since HE lives within me.  So, suicide is out of the question.  Yet, I will welcome my "calling home" when GOD chooses to call me.  Until then, I will continue to share my experiences and my journey until I am unable to do so.  Thanks for being there for me.  It helps to know I am reaching so many people.

Another issue came to the fore front today as I read the blog of a fellow sufferer's wife and caretaker.   He has lost his ability to remember the people in his life and can be difficult to take care of.  She has chose to sleep in a separate bedroom to maintain her sanity.  She monitors him by camera and monitor, so he is never really alone.  In her blog, she told of the stress, pain, and dismay of making this decision.  Those of us who suffer from LBD can be difficult to live with and even worse to sleep with.  Bad dreams and the fact that unlike people not suffering from LBD, we CAN act out our dreams!  So, we can and DO hit our spouses, not in anger, but in acting out our dreams.  SO, I can see the day coming when my wife will have to do the same thing.  While I try to be a good patient, I fail and I am not as far down the road as this ladies husband is.  She has endured much more than she should have and has bore that burden in love.  Separate bedrooms will only make he a better care giver and give her the rest she needs.

The moral of this story is, caregivers need care also.  If you are related to a caregiver, step in and give them a day off, and afternoon out, or a special dinner.  They will appreciate it.

Sunday, December 4, 2011

It's not what you say. It's how I perceive it!

My last visit to the neurologist in Virginia was to  a new neurologist at the recommendation of my neurologist.  The new doctor was young, newly educated, and more up to date on LBD.  She was wonderful, not bashful, and not affraid to say things that shocked me.  St told me that I had not yet come to terms with my disease.  I openly disagreed with her and she said I was full of, you know what!  Now I know she was right.  Her forcefulness made me think, and I have been since that day.  I have known in my mind, that I was sick for a while, but I never really accepted the fact that I was sick and I was not going to get better.  I have been doing OK, some ups and more downs, yet I always fooled myself that I would be OK in the end.  Now, I am beginning to digest the facts that this is as good as I will ever be and I am going to get progressively worse until I die.  Now that is the reality of my condition.  Again, I have addressed that fact in theory, but not as a actuality in my life.  I have written that I have the ability to look at my disease as if I was out of my body, looking at what was happening to me in a subjective manner.  Now, I am actually experiencing the problems live!  She really shocked me into looking at the realit of my condition.

That brings me to another related issue.  My emotions are raw and I am sensitive about anything directed at me.  When my wife asks me a question about something I have done, I automatically think I am being disciplined!  I react as the child who was caught!  Today, I addressed that with my wife and she understood my emotional position.  She is good about listening to me and trying to understand my needs.  So, much like how I reacted to the neurologist, I react in a defensive manner whenever I feel challenged, disciplined, or corrected, by anyone.  That's is just the fact of where I am.   And, since I now am getting better at accepting the reality of my condition, I can tell you, it will not get better.

So, like the title, it's not what you say, it's how I perceive what you say.  If I get defensive, you will have to look at what you said through my eyes.  That's called compassion.  And that is what I need.

Friday, December 2, 2011

Lost things that are important to me.

Today, my wife and I had a good day.  We had some business to conduct at the County Tax Assessor's Office and that went very well.  We walked on the Navarre pier.  It was beautiful, the weather was warm, the Gulf of Mexico was inviting, and we had a great time.  After that, we went to the Air Force base to check out their rifle and pistol club.  They have a good facility that will meet most of my needs and desires.  The thing that was missing was Navy personnel!  I was surrounded with Air Force personnel.  Not that they are bad or sub-standard, but they are not the people that I have been with for 40 years.  Additionally, Pensacola is an aviation base.  So the sailors and officers there are "Brown Shoe" sailors not the "Black Shoes" that I am used to.  Neither the Air Force personnel or the Navy Aviators know about or care about Navy combat ships, gun mounts, or Gunner's Mates!  And I miss that camaraderie.  That loss negative effects me. Do I think it will pass, probably.  But for now, I have no one to talk too and no one to relate too.

So, we will see.  Maybe I will take an add out in the local paper for a Navy "Black Shoe" to talk to.  It can't hurt!