Saturday, March 30, 2013

What a great day!

We got up at 6AM!  We went to our Church to help set up for a community Easter Egg hunt.  This is a wonderful outreach to our community.  Then, to keep me from being overwhelmed by large crowds, we went home before the children arrived.

Yesterday, we finally found the perfect tool chest for the garage.  I wanted a wide tool chest that provided enough drawers for all my tools, large and small, and a chest that provided a work bench top.  We found it at Home Depot!  It fit in the back of our Forrester and my Son helped me unload it from the car.  Today after setting up for the Easter Egg Hunt, I moved into my new tool chest/  Now, ALL my tools are organized!

Then, I decided to hang my Navy plaques in the garage.  I have a few in my den, but I had quite a few still in boxes in the garage.  Since I have decided we will be living here for a long time, I wanted to get this last bit of unpacking done.  I must admit, this went smoother than I thought, but I did experience some difficulty because I was experiencing arm weakness.  Standing on a ladder, driving dry wall screws into plywood and 2 by 4's gave me some strength issues.  But, it is done also.

Why do I write this diary to you?  Well, for one reason, a good, productive, day is rare for me and I was surprised that I did so much.  Yes, I sweated profusely.  Yes, I only worked about three hours in the garage.  Yes, I took a 4 hour nap after.  Am I now stiff and sore, yes.  Did I agrivate my back, yes.  But it was a good day.

Second, I know that good days are almost always followed by bad days, and even downturns in my mental and physical condition.  So, while I enjoyed this day, I am weary of what tomorrow will bring.  We will see.

Tuesday, March 26, 2013

Internal conflict!

There are two conflicting thoughts that constantly go on in my mind.  This conflict has been gaining strength for a while.  How long, I don't actually know.  The first train of thought is an old one.  For many years, I have wanted to be independent, a survivalist, or as they are now called, a prepper.  I wanted to live on 40 or so acres, in a concrete house, with a under ground bunker.  Self sustained including making my own electricity.  Alone, just my wife and I.  No television, telephone, cell phone, computer, no connection to the world.  Independent, self sufficient, secure!  I have written about this dream before.

Then there is the thought of living in a Continuing Care Facility that is able to deal with all of my needs.  Meals, apartment cleaning, medications, exercise, entertainment, transportation, medical needs, everything.

Now you can see the conflict!  These two thoughts are diametrically opposed to each other!  We have looked at facilities like the one I describe.  Again, I have written about these trips before.  But every night, I experience this conflict of indecision in my mind.  It is exhausting to say the least and my Wife is tired of the discussion and I understand that.

Of course, there is also the possibility of staying exactly where we are,  It is a beautiful home, easy to care for, and very economical to live in.  My Wife has a very good plan to provide for my needs as this disease progresses.  We have wonderful health insurance, long term care insurance, and a home that would easily accommodate any medical needs.

When I was in the Navy, I used a mental exercise to deal with the time I was deployed away from my family.   I used to look ahead, project myself mental, to the end of the deployment.  I would think about what we would do, together, when I returned.  I would NOT think about the events of the cruise when I relaxed.  Doing this, relieved the stress of being away and made the separation bearable.  It worked for me, so don't knock it.

However, now, I am trying to do the same thing with my disease.  But the many thoughts that reside in my keep colliding into each other!   So, I will continue to sort this thing out and stop the Internal Conflict.  The problem is, my disease has robbed me of the ability to make decisions.  So, the fight continues.

Saturday, March 23, 2013

Swimming with the Manatees!

We just returned from a marvelous trip to Crystal River, Florida.  We went there specifically to swim with the Manatees!  It was a marvelous experience and I applaud the team that took us from "Crystal River Water Sports".   We actually got to see them up close while we snorkeled!  We took our youngest Grandson and he even got to touch a couple of Manatees.  Yes, one handed touches are legal and believe me the tour guide enforced the rules to protect these endangered giants.  I strongly recommend this experience and the company.

My Wife also got to touch the Manatees and she did very well snorkeling and swimming in open water.  She even got bumped into by a playful Manatee!

I had a great time, but I got so exhausted during our first time in the water that I never got back into the water.  Swimming with swim fins, snorkel gear and trying to swim against a mild current completely wore me out!  I got out of the water winded, weak, and out of breath.  Since the air was cool and the water 72 degrees, I would have been warmer getting back into the water,  We were wearing wets suits that were provided by "Crystal River Water Sports".  But I was so exhausted that I thought it was dangerous for me to try to swim again.

I know this is part of my disease and that is why I am reporting this to you.  Any exertion wears me out very quickly!  I have to be careful and look out for this happens.   The last time I over did it was the day I took the Hurricane Curtains off the windows!  I actually had to sit down before I fell down.  This time I stopped the physical exertion before I was totally spent.  I'm learning.

Another thing I noticed, is that I can only drive for an hour or two before I am very tired and need to stop driving.  I used to be able to drive all day and still be alert and safe.  But, now my wife has to fill in as the primary driver.  I should not complain, I can still drive and I know that privilege is soon to be revoked.

This was a great trip and I recommend YOU take advantage of this experience, soon!  I recommend "Crystal River Water Sports" because they are dedicated to your experience while fully protecting the Manatees!  I also recommend it because it is very seldom you get to interact with 12 foot long, one ton, gentile giants.  GOD's creation n is spectacular and we should take every opportunity to experience it.

Wednesday, March 20, 2013

I saw something!! Didn't I?

OK, I am reticent to post this because it may be used against me, but here goes.  A couple of days ago, I went from the living room into our bedroom and then the master bath.  I think I was in the closet looking for something, but as I came out of the bathroom, I saw our miniature poodle, Marcel, run past me and under our bed.  That is totally normal, he likes to run under the bed.  He uses that position to make me feel sorry for him if we are going out and he thinks he is not going.  Then I walked back into the living room and I saw Marcel curled up next to my wife on the couch!   I asked her how long he had been there and she said, since before you went into the bedroom.

This is the FIRST time I have had a hallucination where I did not know, that what I was seeing, was not real!   The first time I actually thought, 100%, that what I was looking at was the real thing.  In this case, Marcel!   Now that is frightening to me.  Of course, it means this disease is taking over more of my brain.  It means, I am in control of even less of my cognitive skills.  It means, a lot more than that.

I have written before about my realization that I can no longer live independently.  I used to have this dream of living on some acreage, independent of society, eating what I grow or barter for.  A survivalist or a Rugged Individualist!  I can't even dream that now!   Now, everything is in question.

One other thing.  Last night, we went to be at the same time.  My wife fell asleep before me and I was just drifting off when I heard this snoring.  I came to full awake and asked myself;  Who is snoring that loud?!  It took me a minute to come up with the obvious answer.  Well, at least I did not have to wake her up and ask her name.  That HAS happened before too.

When I was first diagnosed with Dementia, my wife told me;  You are about to live every man's dream.  You will sleep with a different woman every night!  I know that was her way of easing my shock, but it turns out, she probably was right!  And this one snores!

Saturday, March 16, 2013

Night issues and broken social filters

I have written before about my issues during the evening.  For instance, right now my wife has the TV on, LOUD.  I cannot reach the remote and my legs hurt so I don't want to get up to get the remote.  On top of that, my back hurts.  But the LOUD TV is the big issue.  It is making me more and more aggravated and angry.  I would be much more happy if the TV was OFF and it was quiet. She knows that the noise bothers me, but, I guess she forgets.  Her hearing is failing, but she does not think so.  Also, she is in her active, bounce around and do everything, make noise, and ask questions mode.  It happens most nights, but tonight, it bothers me more.   I will go to bed soon.

To keep peace and to be respectful, I don't say anything.  So, my social filters are working tonight.  But I am steaming inside!  But the good part is, my social filters ARE working!  But, recently, they have not.  I replied to a Facebook post in an inappropriate way.  When I made the reply, I thought what I said was OK, maybe even funny.  Now, I know it was not.  Oh well.

Another issue is driving.  I brushed another car in a parking lot today.  No damage to our car, and some scrapped paint on the other persons bumper cover.  We both called our insurance companies and my company said it was "No Fault".  No big issue but it illuminates the fact that soon, I won't be driving.  This is the second parking lot issue I have had, both backing out of a parking space.  I actually fell things are coming apart at the seams.  I know what the reality of my disease is.  But, in my mind, I am still the same as I was before I was diagnosed.  But, deep down, I know that is a lie.  Those two emotions continuously fight in my mind.

Another issue is, I still have this need to be in a facility that provides for me.  Again, I know I don't need that yet.  But, I still feel the need to be cared for.

One other emotion.  Florida!  We moved here to be close to our Son and his family.  That part has been exceptional.  I am closer to my Son that ever before and I know my wife enjoys the connection with family.  The problem is, I miss my friends from Tidewater.  We have a very nice guest room, that has been used twice.  Our best friends, Jerry and Marcia and my Sister.  I know other people have their own lives, work, have responsibilities. and their own friends besides me.  But, I live in Florida, not Alaska!

So, as you can see, I am having a bad night and I am going to bed now.  This blog's purpose is to keep everyone informed as to how this disease is effecting me.  Well tonight, it is kicking my but.  Good night.

PS.  As I was going to sleep last night, I thought about my day and why my day as so bad.  Here is a review.  As I woke up, the day's entire plan was changed.  I had a small auto accident,  during a nap, I had a bowel accident, and while I was cleaning up, I found something new and unfamiliar growing in a place I don't want to mention.  I hope today will be better.

Thursday, March 14, 2013

Muscle pain, involuntary movements, and instability, and other issues

A few weeks or so ago, my neurologist told me that he thought the Parkinson's part of my LBD would become an issue by the end of the year.  It appears he was right.  Now this rare prediction by a neurologist is a first in my journey.  Just the same, he was right, so I will give him his due.

The pain portion of this disease seems to have settled in my legs for the most part.  The leg pain seems more intense in the evening than any other time.  Since I was placed on the Exelon Patch, the only over the counter pain reliever I can take is Tylenol and it's derivatives, and they do not work for me.  So, I just endure the pain for now.  The involuntary     movements effect my large muscle areas.  Legs and arms seem to be the most effected.  Today, I almost kicked a hole in the back door as my leg jerked out of control.   The movement is annoying right now.  I can see where it may become a real problem.  It bears monitoring.

My instability has increased to the point that I used my cane whenever I am out of the house.  I am getting used to having my cane with me, so that is a good thing.  I have a good walker with a seat and a storage compartment under the seat.  It is red and sporty.   I do use my walker for longer outings like the historic walking tours of Pensacola.  I get many jealous looks during the tour when I sit down while everyone else stands!

My memory is noticeably decreasing.   But my psyche in dealing with this change is interesting.   I no longer try to hide my memory issues.  I have decided not to fight this disease but to learn to live with it.  Fighting it is tiring and fruitless.  So, I have given myself permission to let this journey progress without resistance.

Don't fret about my decision not to fight.  Fighting actually detracts from my ability to enjoy life.  I want to enjoy my life and journey.  If I spill my meal on my shirt, so what!  If I don't remember your name, tell me again who you are.  If I need to sleep all afternoon, I will.  The bottom line is, this disease will progress at it's own rate, and I cannot effect that.  So, I might as well accept that and enjoy what I can.  So, that's where we stand.

I read a lot about Lewy Body Dementia.  I see the issues my fellow LBD sufferers live with.  Those folks are my support group as well as you.  It helps me to know that I am not the only person with some of these issues.  Like I have said before, I am normal!   It is a good feeling.

Friday, March 8, 2013

Meetings and schedules cause me stress.

I had a great relationship with my Dad.  I loved him and really enjoyed spending time with him.  As I became an adult and joined the Navy, my Dad enjoyed visiting me and experiencing the Navy through my career.  He was in great physical shape and bowled, shot pool, and drove until he passed away at almost 90.  He bowled in three leagues up to the end and was angry if he did not have a 600 series!  I also remember that the young men in the pool hall would NOT play my Dad for money.  Why, because he beat them more often that not and took their money!!

But there was one thing I did not understand, he did not like to schedule a trip.  He used to say that scheduling the trip made the actual trip anti-climatic!  He would rather get up in the morning and get in the car and GO!   I really did not understand that until now.   Now, I do not like anything scheduled.  I don't like the alarm to be set, an appointed place to be, or to be expected to be anywhere.  Scheduled events cause me to stress and they overload me.  I get tired and overwhelmed when events begin to run together.  Sometimes, I am tired and  I need to sleep.  If I have a scheduled event, I cannot take that nap or sleep in.  And dealing with LBD, I need the freedom to sleep or just relax when I need or want to.

Of course, I still get aggravated over people judging my medical condition when they are not qualified.  And since being involved in organizations puts me in contact with people who feel the need to pass judgement on me, I have decided not to associate with people in anything but a casual environment that I control.  No one is going to put a requirement on me anymore.

So, a almost 62, I have learned again, just how smart my Dad really was!  It's never too late to learn.

Thursday, March 7, 2013

Fluctuations in autonomic processes

I have found the answer to my sweating, body temperature rises, and other bodily function issues.  It is a primary symptom of the progress of LBD.  My neurologist has not mentioned it.  I guess he is waiting for me to tell hime so he can say; "I was expecting that."

It took me some research to find this info, but I have found it on three respected web sites.  These problems worried me.  For instance, I get exhausted and perspire profusely when I exert the least amount of effort.  I also get very winded.  I was playing Ping Pong yesterday with a new friend who has Parkinson's.  I was real sweating and breathing hard.  He asked me if I had a heart condition?  I told him no, but this further supports my theory.

I also found out that Lewy Body Dementia was only discovered in 1996!  Now, it existed before 1996, but it was diagnosed as Parkinson's with Dementia (PDD).  In 1996, the Lewy Bodies in the brain that cause this disease were discovered.  So, it was called Lewy Body Dementia.   The medical profession is struggling to learn about this disease.  When I moved to Florida, I went to a GP physician who was recommended to me.  He told me that he had not heard of LBD and would have to do some research on it.  He has, and I am happy with him.

Those of us with this disease suffer from the ignorance of others.  We get told we are not sick, we are fakers, malingerers, or gold bricks.  I am a man of honor and I don't lie.  I am sick, and I am suffering, and I am tired of having to prove it to everyone.  I am sure my fellow LBD sufferers are too.  I read a post on the Lewy Body Dementia Association Web Site where a nursing home nurse told a LBD sufferer that she DID NOT have LBD and was faking because she had lived too long!  If the statistics only started to be accumulated in 1996, just how good are the statistics?!  But, we with this "New" disease are always called into question as liars.

As far as my disease is concerned, I am moving down that highway that I have to travel.  I am farther along that I was a week ago, but I have miles to go before I sleep.  As measured by my neurologist, my memory is much worse.  My brain has slowed by 50%, his calculation not mine.  The pain I experience in my major muscles like legs, arms, and shoulders, is increasing.  I choke when I eat, sweat uncontrollably, have difficult getting out of a chair, have problems reading and speaking, get disoriented, angry, constipated, and tired.  The most frustrating part of this "New" disease is that no one can tell me what is happening to me.

So, I have discovered what autonomic processes are and mine are broke!  Good discovery!  Hope it helps someone else know and understand what is happening to them.

Tuesday, March 5, 2013

Another visit to my Psychiatrist today

I had a scheduled visit with my Psychiatrist today.  He specializes in folks with dementia and is particularly specialized in Lewy Body Dementia.  He helps me manage the effects of my many drugs.  Today, we talked about my recent revelation that I could not live alone anymore.  I told him that this had upset me.  His reply was, you guessed it; " That's normal and I was expecting it!"  What's with these neurologists and psychiatrists, the never tell you what is going to happen, just what they expected after YOU have the issue!!

Just the same, it was reassuring that I was normal.  He said my being upset over this new found, for me, fact showed that I am still cognizant of my humanity.  OK, I guess I can see that.  He then told me that I could never live alone again!

His closing question was, how old are you?  I said after some thought, 61.  He said, you are still OK.  I guess as long as I know how old I am, my mind is not that far gone.  But, it did take a minute for me to figure it out.   We also discussed my hallucinations and my confusion in the dark when we go to bed.  Again, he said as long as I know where the bathroom is, I am OK..  I guess that is a major issue.  It would be bad if I got up and urinated on the Big Screen TV!

You have to find humor in this.  I see things that are not there, I am disoriented in my own bedroom, and I cannot manage the basics of life so I can't live alone.  But, I know my age so I am OK.   This is a great disease!  But if I extrapolate that premise, when I am peeing on the Big Screen, frightened by my hallucinations, and drooling on my shirt, I probably won't know what my age is.  Good!  I got it. Maybe I should open an office to help LBD sufferers navigate this disease.  Probably not, I would forget where the office is.  Smile!

Monday, March 4, 2013

New Memory drug findings

My neurologist has placed me on the Exelon patch in conjunction with Razadyne and Namenda.  I have read on the Internet that the addition of Exelon actually attacks the effects of dementia in another part of the brain.  I have been on this regimen for about six weeks and I have seen no difference in my memory.  I will continue it because I see no adverse effects.  Now, if I end up with one leg shorter than the other ten years from now, I will know there was an issue.

I now take so many drugs that I get thank you notes from my pharmacist and I was invited to the CVS regional Christmas party last year as the Guest of Honor.   I am sure I am doing more damage to my liver than all the excess alcohol drinking I did earlier in m life.  But, if it extends my ability to operate independently, it will be worth it.

The real point of this post is how I am dealing with the eventual effects of LBD.  My wife told me tonight, for the first time, hat she know I have slipped a cog recently.  That is how we describe my incremental decline.  One cog or one step at a time.  We watched that step by step decline in her Father as he suffered through Alzheimer's.  When he was dealing with his journey, there were no drugs to slow the decline and there was little knowledge about the disease.  He died in 1991.   Now, I am facing the same end of life issues.  Or, better said, my Wife and family are facing the same end of life issues.   Yes, we benefit from medical science and new drugs, but the end product is the same.

I have been having difficulty dealing with this.  First, I realize that I cannot live independently because I cannot manage my meds.  Yes, my wife has done my drugs for a while, but the Exelon patch was the last straw.   But that is just one issue.   My memory has declined and now I don't even remember big issues that bother me unless I am reminded.  I actually have to read my own blog to recall problems or emotions!  We were getting ready for a doctor's appointment tomorrow.  My Wife asked me to give her some of the issues I am dealing with and I did not recall any of them.

These issues coupled with my recent urgent desire to cocoon into a small, all caring, environment with my wife, further illustrate the concern and mental anguish I am facing.  But, the good part is I know I am not facing this alone.  Just the same, I am having problems dealing with this.  I don't think there are any new drugs to deal with this issue.