Thursday, August 27, 2015

People who care

Two things happened yesterday that I would like to report.  First, I had a planned appointment with my GP.  She is a very caring individual that makes me feel like I am her only patient and that she is genuinely concerned about my health.  When we left that appointment my wife commented;  "You always smile and seem uplifted when we leave Dr. Laenger's.  My reply was; Because she cares about me and listens to me and my concerns.

Second, amy wife was making telephone calls to the ladies she will be the Discussion Leader for in this year's Bible Study Fellowship group in Pensacola.   One of those ladies  called has a husband that has Lewy Body Dementia.  They began to compare notes on their husbands.  It seems that ladies husband suffers the same internal turmoil and frustration that I do.  She also said, according to my wife, that he gets frustrated when people don't believe he is ill.  Imagine that.  Now, maybe, she will understand my frustration and anger.  Until NOW my wife has never had contact with a LBD patient with the exception of me.  So, she had no understanding of the issues I endure.  But, if another person, out of her circle, has the same or similar issues, then she has someone to compare notes with.

LBD sufferers and caregivers live in a personally imposed vaccum.   Since there are few support groups, my wife, and I suspect other caregivers, have no one to compare notes with and therefore they have little understanding of what their loved one is dealing with.

Sometimes, loved ones don't want to believe the complaints of their patients.  Why?  Because they don't want us sick!  But, if they know and interact with others caring for a LBD patient, the understanding will increase and maybe, we sufferers will be believed.  I can only hope.

Friday, August 21, 2015

Finding information about Lewy Body Dementia

You all probably know, finding information about LBD is difficult at best and maddening most of the time.  Most doctors are completely ignorant about this disease.  Add to that the fact that we are all a big experiment to the medical community and I find myself angry and ready to punch someone.

My wife wants me to look into physical therapy that would help my leg stiffness and pain.  Online, that info is not available.  I will ask my GP and Neurologist, but I expect to get the same answer.

I find myself getting more and more frustrated with this journey.  

Monday, August 17, 2015

Exhaustion, weakness, and fatigue

Today, we had the poodles groomed.  We use a groomer that is in the city we lived in before Azalea Trace.  The groomer is excellent and we have not found anyone her that does as well, regardless of price.  The groomer is at L-9 Splash and Dash in Gulf Breeze, Florida, if you live in the area.  They are great.

Since it takes 45-60 minutes to get there, we stay in Gulf Breeze for the two hours it takes to get both dogs groomed.    So, we shop at the local stores.   Today, we walked around the local Walmart and Lowes. After 90 minutes of casual walking, stopping, and standing, I was exhausted.  My legs burned, and I was having some difficulty propelling myself.  I was surprised since this is the first time I remember being this fatigued simply shopping.

When we returned home, I ate lunch and then took a 4 hour nap!  And I am still tired!

These are all issued caused by the disease and I understand that.  But, it also illuminates the progression of the disease.  I often wondered why seemingly fit individuals used the power baskets at the stores or used power scooters.  Now I understand.  And no, I am not going to use a power chair!!   At least not yet.

Tuesday, August 11, 2015

MY BP is slamming into the limit stops!

I had my BP taken today, as planned.  It was 110/60.  A week or so ago it was 138/98.   As I thought, the evidence is point towards those pesky Lewy Bodies messing with the autonomic functions of my body.

As I wrote yesterday, I have issues maintaining my body temperature. Last night we went to a local Class "AA" Baseball Game.  It was a great time, and it was warm and I perspired profusely all night.  I was wiping sweat off my brow and head all evening.  My hair, what little I have, was soaking wet all night.  I believe this is another issue related to the disruption of my autonomic functions.

It is interesting that the secondary issues of LBD are kicking in so violently now.   I used to work with another Gunners Mate wen I was the GMG Detailer.  He used to say; "I don't know what's happening, but it is happening fast!"

I believe that clearly applies to me now.   More later.

Monday, August 10, 2015

Dreams, out of control

I have written before how realistic my dreams are.  I have also written about how my realistic dreams melt into my waking hours.  Recently my dreams have been about loosing my car!   Not loosing my driving privileges, but loosing my car and cannot find it!

It is unnerving for me to wake up wondering where my car is!  In my dream, I am walking around the city, looking for my car.  Checking parking lots, parking garages, lots behind buildings and always in the dark!  It is very upsetting.

Fear is becoming more and more a theme in my dreams and in my life.  If you knew me before, you would know I was not afraid of many things.  Yes, poisonous snakes freaked me out then and now.  And I am not too comfortable with spiders and ticks.  But, dangerous ordnance, heavy seas, high pressure hydraulics, electricity, fast moving equipment, people, drunks, and most dangerous situations including guns and combat, did not frighten me in the least.

Now, being out in the dark, riding in a car, unfamiliar surroundings, strangers, and many other things that once were not a threat are now a major source of fear!!  Then, add my frightening dreams and you can see my issue.

Then add a new emotion of my future and I am not doing too well.  You see, I realize things are progressing and my health is deteriorating.  BP issues, irregular heartbeat, inability to control my body temperature, and muscle issues that cause mobility problems.  After five years with LBD, we are on a definite downhill slide.

I have a lot on my plate and my dreams and emotions seem to become even more of an issue.  But, I guess it is just where I am at this time.

More later.

Saturday, August 8, 2015

Unfulfilled dreams and other failures

I have been looking back over my life in the last few days.  As a matter of fact, I have been quite retrospective over the last week.  Since my brain focuses on the past so well, it is easy to see the things I never got to do and the things I failed at miserably.  Yes, I do have my successes.  But lately, those things I did not do or could not do seem to fill my mind.

But a few days ago, I was at a "Sportsman's Night Out" at a large Church in Pensacola.  There had to be 3000 people there!  There were door prizes of epic proportion, good food, and past two time Bass Masters Champ Hank Parker as the guest speaker.  He told some of his favorite hunting and fishing stories, and then he offered HIS testimony.  Hank came to Christ in much the same way we all do, or at least how I did.  He denied Christ until the Holy Spirit opened his heart.  But Hank quoted a Scripture that pierced my heart.  It is in the Book of Romans Paul wrote, and I paraphrase;  What good is having all the toys of life, all the money you could ever spend, and all the fun in life there could be, if it meant you would go to Hell, forever!!?

Hank went on to tell us, who will remember what you did 50 years from now? A hundred years from now?  A thousand years from now?!!  Trust me, a month after you are buried, most of the folks that knew you will not be able to remember where you were buried or when you died.

So, all we do should be for God.  Yes, I know you have to work.  But, you can do your job in a way that gives credit to God.  You can raise your children in the Church!  You can "Love one another" as Jesus Commanded us to do.  Those things will live forever!!

Trust me, the bumper sticker: 'Whoever dies with the most toys, WINS!"  is a lie!!!  I have actually learned that the things you have cause you problems.  Why, because you have to secure them, maintain them, insure them, and worry about them!!  Think about that!!

So, the next time I get retrospective, I am going to concentrate on what I have done for the Lord.

Note; This does not remotely look like what I was going to write!  But, it IS what God wanted me to write!   Funny how that happens.

Monday, August 3, 2015

More on agitation

I have written before about situations that case me to become extremely agitated.  One of them, and maybe the most intense anger and agitation causing item is someone constantly complaining about something I cannot do anything about!!

For instance, a few days ago we were taking our walk around the complex here in the retirement community we live in.  It is a scant mile around the roadway that circles our community.  The speed limit is 15 MPH.   That is a safe speed for a roadway that has hairpin turns and switchbacks.  Not to mention senior citizens walking on the side of the road.

Many of the folks that drive this road do more than 15 MPH.  Some are reckless and dangerous.  My wife spent the entire 45 minutes of walking, 3 laps around the compound, complaining about the speed of the cars  like I could do something about it!  Then, I lost my temper and walked in the middle of the street with my cane raised towards a car that was obviously speeding.  When the driver stopped, I verbally berated him for speeding!!  I probably scared the moron to death.  Not my problem, he was speeding and I was out of control with anger!!

Look folks, I cannot change anything in the world today.  There is no one in the world that does what I tell them too!  Not my wife, my son, my grandsons, or even the two poodles!!   So why wire brush me for the speed people drive, how they park, or anything else in this community!!!  Just leave me alone, I cannot fix anything!!  If you have a complaint, bug the Executive Director just half as much as I get heckled and something might get done.

I worry I may loose total control of my temper.  That would not be good for me, or anyone else.  So, please help me.  Please.

PS;  The next time I write about this, I will do my writing when my anger is out of control!!   Then you will see just how angry I am.  Expletives will NOT be deleted!