Thursday, August 30, 2012


I notice more and more that I get agitated, and angry at the drop of a hat.  Tonight my wife was listening to silly ring tone samples on her IPAD.  That should not have invoked anger or frustration in me, they were funny, but I got agitated and angry over the noise.  This seems to be happening more and more.  A few days ago I was putting up the storm covers for the windows for the first time.  I got screaming angry over the problems installing them.  Again, I would not have had this problem a few years ago.

So, I went to WEB MD to check the LBD symptoms and there they were.  Agitation and anger.  Now that does not make controlling my temper any easier, but at least my wife and I can understand why this is happening.

Today, I took down the storm covers.  Naturally this was much easier, so I attempted it myself.  Bad Idea!  I got so sweaty, tired, and unstable on my feet that I had to sit sown between windows to rest.  Now I was not rushing but just going at a slow pace.  Just the same, my body cannot deal with exertion and by the time I was done, I was panting like I had run a marathon!  Linda told me, that was the last time I did that alone.  I'd like to argue, but I know she is right.

So, that issue caused me to get upset over living in a house vice an apartment or community for people over 55 or more.   You see, we sold our home in Virginia Beach and moved into an over 55 complex to get me away from home maintenance.  When we moved to Florida to be next to the grandsons and my son and daughter in law, we bought a home because it made financial sense.  But not physical sense for me.  Again, I can rationalize the decision but I get emotionally agitated over the end product!!

So, while some people, who watch me from the outside, say that I am not getting worse, I know that I am.  And frankly, their attitude pisses me off too!  MY best friend's Mom had Lumpus.  She was a trooper and tougher than most men.  She dealt with her infirmities in a stoic manner and made the best effort not to have he disease rule her life.  At her Grand Daughter's wedding, people kept asking her how she was doing which was beginning to get to her.  I was the one who asked that question and put her over the top.  She said to me;  FINE, how are you doing!!!  I learned my lesson and never asked her again.

The moral of that story is, be honest with me.  If I seem worse, tell me, don't tell me what you think I want to hear.  Because I really don't want your platitudes or sympathy.  AS President Reagan said, there I go again!  Maybe I will take a chill pill and relax in a dark room.  

Tuesday, August 28, 2012

My wife and my friend

I received a comment from a reader today.  That reader commented on my Navy blog but also commented on a post my wife placed on this blog a while ago.  He told me I had a great wife!  I have known that for almost 40 years!  But, it was good to get someone else's opinion too.  She has always stood by me, encouraged me, kept me in line, told me when I was wrong, which in itself is a tough job, and now, has become my caregiver.  Some of you may not think I need a caregiver yet, but I do.  For instance, I can no longer make sense of all the medications I take.  And keeping medical appointments is not in my ability either.

But, her biggest task right now is to be my sounding board.  I need someone to talk to, be with, and tell my inner fears to.  I suffer from serious insecurity issues.  I am constantly asking her if I did this or that correctly.  Now, I never had that issue before, but now, I need to know I can still do something well enough to pass inspection.  Of course, what I can do is limited.  I'm not even permitted to drive the riding lawn mower, but sometime I sneak a few laps in before I get caught.   Truth is, I get over heated and suffer from excess sweating at the drop of a hat.  So, her care and attention IS necessary because I am hard headed, still!

I know her role in my disease is very difficult.  And she has the most difficult times to come!  I appreciate her love and care and I appreciate the difficult times to come.  I try to make her load lighter, but there will come a time when I will be unable to help her.  Yet, my wife is always there, by my side, keeping me on track.  I could not ask for anything better.

Sunday, August 19, 2012

Alone with myself

I have a place in my mind that I go, very often.  It is a place that fits my needs and that I am familiar with.  Everything is as I want it and I am comfortable and safe.  In control.  Every night, before I go to sleep, my mind goes to this place of serenity.  It relaxes me and helps me go to sleep.  No matter how the day went or how I feel, this trip to my comfortable place is a guarantee of sleep.

Some times I build a house in my mind, other times I modify a truck for a specific purpose.  Sometimes I work in my garden, or just ride my ATV around my property to make sure all is secure.  If you are interested, my house is made of steel reinforced concrete and is easy to heat and cool.  It is a small house, 1000 square feet, with one bedroom, one bath, a living room and a kitchen.  The doors are braced from the inside for security against intruders.  I also have an outside kitchen for summer cooking and canning.  I use solar and wind turbines to make electricity.  No connections to civilization.  No cable TV, no city water or sewer.  Just me and my home, secure against intruders, self sufficient, standing against the onslaught of evil.

It seems, more and more, I seek refuse in my comfortable, safe place.  I wonder if others with Dementia have this escape too.  I have never told anyone about this until now.  Why, I don't know.

Thursday, August 16, 2012

Stress tests results and other issues that are resolved.

Well, I finally received a telephone call from my GP about the nuclear stress test I took 13 days ago!  I had determined that I was OK when they permitted me to leave the hospital after the test!  No ambulance, no chest scars, no IV, just me walking out.  So, I figured I was OK.  However, 13 days is a long time to wait for test results that could have foretold of big issues.  But, I should be happy that I am fine and I am.

Second, My left thumb developed a click every time I move the end of my thumb.  The pain began to increase so I went to my GP and he sent me to a "Hand" specialist.  This specialist was wonderful.  His office x-rayed my hand, the Doctor looked at my hand and told me it was a tendon issue that may be cured with a cortisone injection.  AS he said, he gave me three chances to run away from the "shot", but I stayed and received the treatment.  I am glad to say my thumb is feeling better.  I hope it stays that was, surgery is not in my health care plan.  I told you all before, no more tests.  Well, the nuclear stress test was out of my control, but no surgery except life threatening situations.

On the disease front, my wife believes my hallucinations have increased.  I agree.  Nothing frightening, just strange things like birds flying through the living room, the feel of someone moving across the bed, and my usual small mammals running around on the floor.  I continue to get tired easily and sweat profusely at the least little exertion.  Maybe a little more exasperation with the world around me, but that may be related to the political season.  Or maybe not.  I guess I will know in November.

Tuesday, August 7, 2012

Seeing things that aren't there.

I have had hallucinations for quite a while.  Some of them are fairly benign.  For instance, a small rodent running across the floor, movement out of the corner of my eye, or a dog going into a room when my dog is laying next to me.  I have seen people, but not as ofter.  Once, in my bedroom, I saw two girls sitting on a bench against the bedroom wall at the foot of the bed.  They were dressed in white old style dresses.  None of these hallucinations frighten me because I know, for now, that they are not real.  Last night, I was sitting on the couch with my feet up and for some reason, I saw my foot and that startled me!  I guess I did not expect my foot to be there.

One point of interest, the vast majority of my hallucinations are in the evening or night.  I credit this to the effects of  my "Sun Downing".

I also have touch and auditory hallucinations.  Many times I have the feeling of someone moving on the bed when I am the only person on the bed.  That happened today when I took my afternoon nap.  I have also experienced a human touch on my shoulder when no one was in the room except me.  I hear my wife's voice when she is not talking or not even in the room.  Many times, I have gone and found her in another room and ask if she called.

Again, all of these issues are normal for someone with LBD. My wife has grown to accept them and my reaction to them.  While I don't tell her about everyone, I tell her about new ones or nights when the visions are particularly plentiful.  I also know, someday, I will not deal with these issues as logical as I do now.  But, for now, they are just entertainment.

Monday, August 6, 2012

An unexpected award and a new look.

I have been writing this blog for a while.  It came to being because of my wife and my neurologist, Doctor Mary Bowles.    They both believed it would be therapeutic for me and also a record of my long journey into eternity and they were right. But I never knew that what I wrote would be useful to others.  But your comments have caused me to understand that all of us in the Lewy Body community, sufferers and caregivers, benefit from sharing our experiences.  The best support group is you, who read all of the Blogs written through the challenges and pain of this mysterious disease.  I call it mysterious because even Medical Doctors don't know what Lewy Body Dementia is.  We, all of us, are pioneers and together we will inform anyone who wants to know and educate those who will listen.  I wish to convey my heartfelt respect for those of you on this journey.

I was informed today that this Blog was awarded a Best Blog award from  It was one of 25 other Blogs recognized in the Dementia community.  I was surprised and honored by this award.  It is recognition of the efforts of my wife and you, the readers.  Thank you for being part of my journey.

We have a new look for our Blog and I hope you like it.  Again, it is the artistic efforts of my wife that make this Blog possible.  She is the my love, caregiver, and mentor.  Of course, we will gladly take inputs and ideas.  Your comments are always welcome.  Again, thanks for being there!  

Friday, August 3, 2012

The Stress test, without results.

I hate to keep you waiting, but I do not know how well or bad I did on the nuclear stress test.  Back in the Navy, when we had our nuclear stress tests, call Nuclear Technical Proficiency Inspection, (NTPI) we knew immediately how well we did.  For instance if the Weapons Officer and the ASW Officer were immediately fired, we knew we did bad!  And if the Captain was smiling, we knew we did well.  But, those who administer this test have the ability to tell you nothing!  No matter how much you plead.

How do I think I did?  OK.  It took three levels of incline and speed to get my heart to the target heart rate.  My blood pressure at that point was 140/80.  My target pulse was 136.  I had no chest pain and I could still breath.  Additionally, the nurses and technicians did not stop the test abruptly and throw me on the gurney and I was permitted to go home.  So, nothing can be too wrong.  Or can it?

When the doctor tells me, I will tell all of you.  Until then, we are in the dark.  The symptoms that started this testing are still there, and they may always be.  If this is from my LBD, I guess I will have to live with it.  Again, I await my doctor's call.  Maybe Monday.

Wednesday, August 1, 2012

Nuclear Stress Test!

OK, That sounds like they are going to blow something up and see if something else can stand the blast!!  And I guess that is exactly what they are going to do to me tomorrow morning.

I got the call today and was scheduled for my stress test tomorrow morning.  There was an opening for tomorrow and I decided to take it.  Why wait, jump in and test the water.  But, I will be truthful with you and tell you I am apprehensive about this test.  I am still pretty tough and I can take a fair amount of pain.   When I had half of my colon removed, I did not take the any meds prescribed for me and I got off the pain pump in the hospital quick.  I don't like narcotic pain meds and will do just about anything to stay away from them.  But Dentists and heart tests still terrify me!

Since I have had these sweating, shortness of breath, and low energy issues I have been concerned about my heart but I was also told that my symptoms were probably related to my LBD.  Also, based on what I have read about LBD on WebMD and the Lewy Body Dementia Association site, I was pretty confident it was the LBD.  But, when my GP did the EKG and he and his Cardiologist friend decided I needed a stress test, I began to worry.  He told me there was a minor change from my last EKG that caused them to be cautious.

So, tomorrow morning at 8AM, they will pump me full of isotopes and make me walk for a while.  Hopefully, I will get to leave after that.  But there is the outside chance they will keep me for further treatment.  Eleven years ago, I had this test and I failed!  That lead to a heart catherization which came out fine.  But, signing the permission forms for that catherization was frightening!!  I had to sign a form for the catherization, a form for a stint procedure and a form for open heart surgery!  I asked the Doctor when the open heart surgery would happen and he said; "Right then!"  That scared me to the point of passing out!  They might be cracking me open like a crab!!  Not a comfortable mental picture for me.  Now, I am facing tha again, with even more symptoms, and I am not comfortable or at ease about tomorrow.

But,  I will be there bright and early, ready to be poked, prodded, and exercised.  Hopefully, all will be good again.