Wednesday, January 30, 2013

Controlling my emotions is difficult, but necessary

I used to have a fairly explosive temper.  It's true and you will say Amen if you know me.  But more and more, I find myself holding in my emotions, trying not to say negative things, and not permitting myself to be overwhelmed by my perspective on life.  Why, because loosing one's temper is a big problem for those of us with LBD.  As I read about my disease, loosing my temper is considered is a big, negative milestone and I don't want to go past that point until I have too!

So, I find myself not expressing my emotions and swallowing my tongue instead of blowing up as I used too.  But, this causes me to overload my emotional limit stops from time to time!  I causes the feeling of pressure in my head and the associated headaches and pounding in my ears.

But, I guard myself from loosing my temper and being labeled as a person out of control.  But, on the other hand, while controlling my emotions has became harder, I realize someday I will not be able to control my emotions at all.   So, as I watch this disease marches on, I guard against the future issues as long as I can.  Of course, we all realize I will soon not know that I am emotionally exploding.  But for now, I am calm, cool, and collected, at least on the outside.  I guess that is called a facade.

On another issue.  As the neurologist told us, the Parkinson's issues are increasing.  My legs hurt most of the time.  The push and pull muscles are constantly fighting with each other and that hurts.  In the evening, my legs hurt enough that it is very difficult for me to get off the couch.  We are considering purchasing a life chair for me.  Most of the time, I really need help getting up from the couch.  We have not started the Sinemet because he wanted me to spend a week on the Exelon patch to make sure I did not get nausea or any other side effects from that new drug.  So Monday, we start the Sinemet.   We will see.  I will keep you posted.

Wednesday, January 23, 2013

Testing results!

Today, I had an appointment with my neurologist to discuss the recent tests he had done.  First the Cognitive Skills Test.  I went down is a couple of new areas.  As he said, my memory is shot.  I knew that.  The tests of the nerves and muscles in my legs was all normal.  So, he agrees the pain in my legs is from the Parkinson's portion of the Lewy Body Dementia.  I knew that too.  He told us the Parkinson's was now coming on quickly.  I really don't know how he knows that, but it is what he said.  One interesting test in the Cognitive Skills test is one where you tap the space bar on a computer as fast as you can for one minute.  You accomplish this test with both hands.  My scores have dropped 50% from last year.  He said this proves my mind is slowing down.  OK, I knew that too.

However, I was not prepared to deal with the Parkinson's portion of this LBD challenge right now.  As a matter of fact, I really did not want to deal with that part.  But, it seems will have too.  I have difficulty getting off the couch and my legs hurt almost constantly from the muscle pain.  I am getting more unsteady on my feet and I have difficulty starting to walk after I sit for a while, like in the car.  So, he may be right.   He wants to put me on Sinemet and I agreed as long as I tolerate it.   Again, we will see.  He also prescribed an Excelon patch to use in addition to my Razadyne and Namenda pills.  He hopes this may help my memory.  We will see.

So, this was a good visit and I felt he was actually engaged with us in the conversation.  I will see how the new meds do and I will keep trying to be positive.  At least the tests bear out what I am feeling.  That makes me feel vindicated.  For a change, during this appointment, I did not feel like I was being called a liar or a malingerer.  He really treated me like I was dealing with health issues.

More later, I need a nap.

Thursday, January 17, 2013

Bouncing back from illness

I had the flu of something that quickly turned into bronchitis.  It took me over three weeks to shake it and I am still coughing.  I was coughing so badly during the height of the illness that I would actually pass out!!   I have had that problem before but not to the level it effected me this time.  But the real issue is that I just did not have the strength to bounce back this time.  I am still weak and I get tired quickly doing just about anything.

I know this is directly related to the effects of the LBD, but t has impacted my mental health.  I now question my resilience.  Just a few years ago, I considered myself indestructible.   I could work through being sick and did, many times.  In my mind, I had a store of energy, strength, and fortitude, that enabled me to "Gut" my way through anything.  I was talking to an old shipmate, who just passed away 21 December.  We reminisced about the time, in Bremerton Washington, that I had too much to drink and a Second Class Cook and I got into an auto crash, he was driving.  We hit a telephone pole and I went through the windshield.  Chief Mowery made me work the next day!!  No sympathy.  But, I did not want any, I was tough.

Now, not so much.  I just want to sleep or sit and watch TV.  I have little or no desire to do anything. Thanks to my wife, I get out, but not of my own choosing.

So, I see the effects of LBD on my mind, body, and psyche.   All negative.  Am I upset about it.  No, not really.  But I am past thinking this is "interesting" as I used too.  Now, I just find it annoying.

Friday, January 11, 2013

Junior Seau

I read an article about the autopsy of Junior Seau's brain following his recent suicide.   The autopsy showed that he had the same tangles as a person with Alzheimer's Disease.   He was a young man who had physically abused his body ever since he was a youngster.  Football is a violent sport.  Full size me, crashing into each other at high speed, time and time again.  GOD did not design and build our bodies for that sort of damage.  Just the same, he was a young man with old persons issues.

But the question that may be on some peoples minds is;  Why did Junior Seau commit suicide?  I think I have some insight into that issue.  Here is this young, strong, independent, man.  A sports hero to young and old alike.  His Mother's favorite child, her provider.  Here is this man who accomplished so much in such a short period of time, realizing that his mind is not functioning as it once did.  He quickly lost the ability to recall simple daily issues and data.  It may have started with his computer passwords or football statistics of Plays he once knew by heart.  Maybe he forgot where he lived for a brief moment!  In any case, he was for the first time in his life, frightened.  He was faced with an opponent that he knew he could not overcome!   And that fear and frustration won out and he took the only way out he thought would permit him to escape his future fate quickly and before he made a fool of himself.

Dementia, by any name, reduces us to much less than we once were.  Mentally, physically, socially. Those of us who have to face this degradation first hand, deal with that reality in our own ways.  What we go through is different than what our loved ones and care givers go through.  We don't fully understand their pain and I now they don't understand ours.

Now don't worry, I have no intentions of committing suicide.  It is not my style.  And I still find the progression of this disease somewhat interesting, as strange as that may seem to some of you.  But, I do understand Mr. Seau's decision.  He was in mental anguish, pain, with no way to deal with it.  So, he quit before he was fired!

Another thought.  Those of us who have Dementia dread the thought of our loved ones having to deal with the effects of our disease.  I am still OK with my LBD, but I hate the fact that my wife has to go through this.  She does not have that issue.  She is ready, willing, and able, to care for me, regardless of what happens.  I just hate the fact that she base to.  But, that's what "I sickness and Health" meant!  I am blessed!

Thursday, January 10, 2013

I am UP, again!

No, not in my house suspended from balloons, but UP as in not asleep.  I was sitting here reminiscing about my mentor and old friend Bill Mowery.  I found out yesterday that he passed away, alone, on December 20th.  That hit me hard for many reasons.  Since we moved to Florida, I always meant to go see him, he was only 4 or 5 hours drive away, but I never did.  He died alone, and I was not there for him.

But what really has me concerned is that I am having problems remembering the names of shipmates!  I remember the ship's names, but few shipmate's names come to mind anymore and that bothers me!  There are a few who keep in touch with me, and my closest friend, Jerry Hart, but names and faces have faded from memory.  Some times, a name pops into my memory and then fades away as quick.  I don't know where they are or even if they are alive.  bUt for that fleeting moment, they come into memory and then disappear.

This disease is cruel sometimes.

The Veteran's Administration

I filed a claim with the Veteran's Administration over my LBD a long time ago.  AS I have written before, I believe my exposure to the fire retardant chemical in the hydraulic fluid used in the gun mounts I worked in for over 20 years was a contributing factor to my LBD.  In 1989, the year I retired from active duty, the Navy publicly stated in 1989 that that chemical was carcinogenic and neurotoxic.

In any case, I had an appointment at the Veteran's Administration health facility in Pensacola Florida today.  First of all, I must commend the VA for an exceptional medical appointment.   I was treated with respect, and a very caring attitude.  I was impressed!

But, my issue is still the fact that the VA has moved at a snails pace on my appeal.  It has been over 5 years since I filed this claim.  I have done everything the VA has asked.  I was seen by a VA contract neurologist in Virginia Beach years ago.  The VA has had access to all of my medical records and testing since the beginning.  I know they have everything, I saw my record today.  It is three inches thick!!

The VA doctor who saw me today, and treated me so well, said this would be all the information they would need to make their decision.  Did I tell you she spent over an hour with me doing various tests and observations!   Again, I am impressed.

So, now I wait for their decision.  I will accept the VA decision regardless of what it is.  All I want is a decision.  Five years is long ago to wait.

Tuesday, January 8, 2013

More tests!

You know how much I love neurologists!  And I am sure you know how much I appreciate them questioning my Dx, which was from another Neurologist and confirmed by a research hospital neurologist!  Well, my neurologist in Florida had order more off the wall tests than anyone before him.  Today, I had a nerve test done in my legs to see if they work good.  The Technician asked me if I knew why my neurologist wanted these tests.  My reply was; "He needs one more test to get a set of steak knives!"  That must be the reason.   I am not diabetic, by instability comes from the muscles fighting each other in my legs.  It is a classic LBD symptom.  You know, LBD equals Parkinson's and Alzheimer's combined.  Hey Doc, read the pamphlet!!

We have decided we will no longer use a neurologist.  Just my GP.  He can prescribe what I am taking and since there is nothing new to be done, I can save Blue Cross a ton of money by cutting out the middle man!  I am sick of medical tests.  I know I said that before, because I looked back in the posts.  I ave to remember, no more tests!  I think he takes advantage of my poor memory and orders more tests.  At least, that's how I remember it.