Tuesday, May 27, 2014

Loss of long term memory

Many of you know I write a blog about my Navy career.  You may also know that I spend most of my time thinking and dreaming about my Nay career.  It seems I am still in the Navy.  But, recently I have noticed that my more detailed memories of the Navy are missing!

One point you need to know is that I used to have near total recall.  It I read something, or was told something, I remembered it, verbatim, forever!  The electronic and hydraulic diagrams for the Gun Mounts I worked on were mostly in my mind.  Yes, I consulted the diagrams when I was troubleshooting an issue, but it as more to make sure than to search for the issue.

Yesterday evening, we were driving back from a shopping trip and a young friend asked me why the Navy stopped using armor on it's ships?  I told him I did not know.   My wife then said it was because of the shift from Battleships to Aircraft Carriers during World War Two!   Of course, she was right, she had heard me explain this fact many times and she remembered.  She helped me out, but I was completely dumbfounded and without a reason.  That fact was no longer in my mind.    

This has happened on different issues recently and I now realize my long term memory is being impacted by the Lewy Bodies.  It is just one more sign that my LBD has progressed to a new level.  As it used to be said; "No brag, just fact!"

But, it is frightening to recognize that I am loosing what I cling too.

Saturday, May 24, 2014

The most frustrating part of Lewy Body Dementia!

I wrote a few days ago about how good I felt after my surgery.  I also said, I wondered how long it would last.  I found out the answer to that question.  Today, I felt the vitality, memory capability, and energy drain out of my body.

We have been busy, for us, the last few days.  Today, we went to some friends home for dinner.  It was a wonderful evening.   All of us had things in common and we exchanged stories of our childhood, careers, and Church experiences.  Oh, he and I were both career Navy Enlisted men, so we each had some sea stories to tell also.  It was a great time.  The meal was exquisite!  I had a wonderful time.

But, my wife noticed me slipping and told me it was time to go.  I did not want to leave because I was having such a great time.  But, she knew what was best.  By the time we got in the car, I was slapping my leg and tapping my fingers in that annoying way.  I was spent, and I am now.

I knew earlier today that I was slipping and took a short nap to try to recapture what I had the last few days.  It did not work.  I am back where I was before the surgery.  That is the frustrating part of LBD.  The UP and down of the disease.  For a minute, or really a couple of days, I felt like I was "Normal".  I had my thoughts of building my Concrete Survival Home again!  I even looked up land in South Dakota.  But, reality sat in and I am back to understanding I will never get better and I will only get worse.

I have said before, I wish I never had these times of feeling better.  Status Quo would be much better for my mental well being.  Lewy Body is cruel that way.  But, you already know that.  It is only those of us with the disease that suffer from the ups and downs.

Oh, well, it was the BEST evening we have had since we moved to Florida!!  That was worth it!

Thursday, May 22, 2014

Interesting surgery update

It is now a week since my hernia repair.  I feel great!  I am still a little tender in the surgery area but nothing big.  You may remember they used a local to do the surgery to preclude the mental decline from General Anesthesia that elderly dementia patients often experience.  But the interesting thing is, I am actually better off mentally after the surgery than I was before.  I am mentally sharper and I seem to be "Up" a notch from my pre-surgery mental position!!

My question is, what did they put in that IV to place me in a "Dream Like" state during the surgery?  I certainly woke up clear headed and alert!  If it works on other dementia patients like it did on me, all of us should get a dose of this drug.

On a related note, my left shoulder needs a rotator cuff repair and I have had that on hold because of the requirement for General Anesthesia.  The surgeon that did my hernia repair gave me the name of a Orthopedic Surgeon that does shoulder surgery with local anesthesia! I believe, as soon as I am 100% for the hernia repair, I am going to call him!  One more dose of that Nap Time Drug and I will be good as new!  The question is, how long doe it work.  No matter, it is working now and I love it!

Friday, May 16, 2014

Surgery oddities

This is my second day of recovery and I am doing quite well.  Well enough that I can review the surgery with a keen eye.

First;  It is a little unnerving to look at this 6 inch long incision closed by super glue!   No stitches, no staples, no butterflies!  Not even a bandade!  Just a ⅛ inch wide strip of glue very close to part of my body few people have seen!  I hope it holds.

Second;  I had to WALK into the operating room!  That was a first.  A rotator cuff surgery, two other hernias, and colon surgery, and I never had to walk to the surgery room!   I guess that is a budget saving move.

Third;  The pharmacy delivered the take home drugs to us before we left the hospital!  Now that is customer service.

Fourth; I am still numb in the area close to the incision!  Inside is a little painful, but the outside, where the glue is, is numb!

This has been a good experience but I plan on making it my last planned surgery!  I will evaluate emergencies as they happen but I am done doing this if there is a choice!

I still have a sense or humor.

Thursday, May 15, 2014

The surgery went well. Very well!

The surgery was yesterday at 9 AM.  I can say this was the easiest hernia repair of the three.  I left the hospital almost spin free because to the new procedure of numbing the surgery site from the inside.  I did not take any pain meds until last evening.  I got some uninterrupted sleep and I continue to take the pain media at a 25% reduction from the max permitted.  Did I tell you I don't like pain meds?!  But, they are necessary sometimes.

The surgeon was good.  The anesthesiologist put me into a nap state, and all went well.   I woke up alert.  Early this morning, about 4AM, I did have a short episode of nausea, that diarrhea feeling up my back, and a cold, clammy, sweat over my body.  I drank some Ginger Ale slowly, and in about a half hour I felt better.  That's it!

Now, I am still sore, but the pain is manageable.  I will continue to take it slow for the rest of the week and I WILL NOT lift anything heavier than my coffee cup for the next 6 weeks!  But I feel pretty good.

I appreciate everyone prayers and telephone calls.  Your friendship and caring keep me going strong.  I will keep you posted.  But right now, it is time to rest.

Tuesday, May 13, 2014

Surgery is tomorrow morning

OK, this came fast!  Tomorrow morning is my hernia repair surgery.   I am ready.  As ready as I ever am for surgery.  It is supposed to be outpatient surgery and the only this that will change that is a complication, dementia issues, or extreme pain.  My other two hernia repairs were anything but painless.  As a matter of fact, I have said many times that I would rather have the remainder of my colon removed than have another hernia repair.  But, hernia repay it is.

This is going to be a little different in that using General Anesthesia on dementia patients is not advised.  It seems we wake up in a different time zone.  So, this hernia will be repaired with local anesthesia.  Now, I had all four of my wisdom teeth removed with local anesthesia and it did not hurt.  So, I am encouraged.  Everything is relative.  This surgery is less than the removal of one-half of my colon and they are using the same anesthesia as the oral surgeon see to remove my wisdom teeth.  No sweat!

And, being a dementia patient, I have a secret weapon.  I will forget the pain in a few hours!  There are benefits to having Lewy Body Dementia.

There were two things I had to do in preparation for this surgery.  First, I had to re-write my "Just in Case" letter.  Everyone should have a letter explaining where the money is, the insurance policies, your burial wishes, and how to close out your affairs.  It is a military thing because we tend to die early and often.  But, I had not changed the letter since we moved to Florida.   In fact, I had not re-wrote the letter since 2006!

Second, I had to shave my beard off!  Why?  I did not want the anesthesiologist to have to deal with hair if they had to incubate me.  When I had my wisdom teeth removed, the oral surgeon lost the sutcher material in my gray beard!

So, bald face, I approach surgery again.  I am not worried and I don't think Linda will need to open that letter just yet.  I expect to be home tomorrow afternoon with a new scar to show off.  Nothing more than that.

Thursday, May 8, 2014

Thanks for your support!

Since the flood, we have received so much support from our family and friends.  It is interesting how much support and relief a telephone call or email provide.  For instance, my friend from work, Steve, called Tuesday.  He could tell I was upset and having mental issues.  He asked to speak with my wife, using "Library reference question" as a cover.  He then set up a Skype call for Wednesday morning, my Birthday, with the guys I worked with!!   It was priceless to me and It helped me get on a even keel.

I have received cards and emails from Navy friends, Church friends and family.  I had a Facebook post from a friend I used to work with.  Keith told me, anything we needed or if we needed help, he would be here.  Just ask!!

Then, there is my best friend Jerry.  He sent help to our son!   Jerry did this because we are family!  I called Jerry ad thanked him but that is not sufficient for such an act of love and caring.  I still tear up when I think of his charity.   He is truly a friend indeed.

Tragedy and disaster bring out true friends and their charity and love.  We have been blessed with the best friends any family could have.  Thank you from the bottom of my heart.

Monday, May 5, 2014

The effect of the flood on me

This disaster has shown me how much of me LBD has taken.  All my life, I was tyne man people came to when things got bad.  When I was in the Navy, and a Gunner's Mate, I dealt with extremely dangerous situations.  I was always calm, in charge, and precise in what I did and what I directed others to do.  Now, I am unable to do anything!

I find myself angry, frightened, and wanting to run away.  I sleep almost all of the time and even then I do not escape my disease.  I dream of being lost, most in my mind, and unable to find my way home.  No one around me understands what I am going through.  They all see my anger but do not understand my emotions.

My routine is completely disrupted.  My wife is trying to restore my routine but she is more dedicated to helping the family and I totally understand that.  She is doing what I used to do.  Good for her.  I am proud of her and angry at myself.

My wife gets angry at my outbursts and my sleeping.   I am a frustration to her and a liability to everyone around me.  Truthfully, I do not know what to do or where to turn.  I am sorry that I am causing my family problems in their time of need.

I truly do not know hat to do or where to turn.  LBD has stripped me of who I was.  This is the new norm and I don't like it.

Saturday, May 3, 2014

The stress of the flood

We live in the Pensacola area and we have had a very wet winter and spring.  It was topped off by 24+ inches of rain in less that 48 hours.  Our home remained dry but our son's home flooded 4 feet deep at 4 AM!  They literally had to swim out and carry their pets with them.  Cats and Bulldogs don't swim well!  They have lost everything and while their insurance company has totaled both of their cars, their household goods is another thing.  The insurance company is waffling on the coverage decision.  Again, they lost everything.

We have been doing all we can to help, but with a hernia and the effects of LBD, I am pretty much useless.  But the ravages of LBD are the hardest for me and my wife to deal with.  I am either very grumpy and griping very loudly about anything I don't agree with or I am brooding in the corner.  The disruption to my routine is the culprit.

My wife is working hard to preserve memories for my son's family.  WE presently have hundreds of photos hanging in out garage, drying! Scrap books, report cards, mementos, anything that was squirreled away to remember that special time.  Now all wet, soaked, and in danger of disintegrating.

I am not doing well right now and that is a problem for my wife.  But there is little or nothing I can do about it.  I have a short range view of life.  So my view of photos and mementos squirreled away and left to rot are not as important to me as their are to her.  Or, it could just be a female thing!!

I remember a joke I heard once.  A man walking on the beach, finds a metal lantern.  He rubs it and a Genie appears.  The Genie tells the man he has one wish!!  SO, the man says;  I want to go to Hawaii and I am afraid to fly or take a cruise.  So, I want you to build a bridge to Hawaii!  The Genie screams;  Do you know how far it its to Hawaii from San Diego?  Do you know how deep the Pacific Ocean is there?  Do you have any idea how much concrete it would take?  No, make another wish.  So, the man says;  Well, I always wanted to know how women think,  You know, how their minds work!  The Genie replies;  So, how many lanes do you want that bridge to be?!!

That is my point.  I don't think like females.  And that is where I get in trouble.  That and my social filters and tact are shot!!  SO, I guess I will try to just do what I am told and keep my opinions to myself!

Friday, May 2, 2014

Scheduled surgery

OK, here we go.  My hernia surgery is scheduled for 14 May.  Yes, that is quick, but they had an opening and I thought I better get it done before I change my mind!  Why?  Because the idea of hernia surgery and being awake is not on my list of things I want to do.  Yes, it is better for my LBD.  And it greatly reduces the known impact on my cognitive outlook.  But, think of it, your groin being cut open, while you are on the same pain meds the Dentist uses!!

Now, the surgeon did say he would have the gas passes give me some meds to relax me!  Relax!?  He had better get me blown out of my mind!   I better be so relaxed they I don't care he is cutting on my groin with a very sharp knife!

It is also curious why scope surgery cannot be done with  local and full blown, open body, surgery can be!!

Oh well.  The hernia needs to be repaired and the surgeon assured me this would work.  So, I trust him.  He had a kind face.

Thursday, May 1, 2014


OK, I went to the surgeon today.  I was immediately comfortable with him.   He was up to date on the impact of General Anesthesia on Lewy Body Dementia patients and offered me two alternatives.  One;  No surgery and I will never lift anything heavy again.  My wife immediately said; "That won't work!!"  The second alternative was to do the surgery with a traditional incision and use local anesthetic.  The third was to do laproscopic surgery with General Anesthesia.  But that was ruled out because of the negative effects of putting me to sleep.

He assured me the Anesthesiologist would choose drugs to relax me that would have the least impact on my disease.  So, it looks like I am going to have my third hernia repaired.  The Surgeon also told me he could assure me I would not blow this one out!  I advise him not to bet on that one!!

I came away feeling sure of his abilities and his dedication to my well being.  The thing that made me feel the best was he was a student of Naval Gunnery!  I don't know why, but he was very interested in my career.  I told him we used to make beer can bazookas that shot tennis balls!  He asked me why propellant we used?  Lighter Fluid, I said!!  Now, I am committed to making him one!!  Sounds like fun!!

One more point.  When is the surgery.  It has not been scheduled yet.  But, I believe it will be soon.  I will keep you posted.