Tuesday, January 27, 2015

Different Hallucinations! And other developments

Lewy Body Dementia is an ever changing disease.  But, you already know that!  My hallucinations have taken an interesting turn recently.  I see one thing, and then it changes in state the next time I look at it.

For instance, this morning I looked that the dogs breakfast dishes and told my wife, both of them had eaten breakfast.  Then, just a moment later, the plates were full and untouched!

Not, I would have sworn their plates were cleaned!  But, at second glance, they were not.  I have also had this happen recently on different occasions.  I will admit it is a bit upsetting!  And, I don't have Marcel the Wonder Dog to act as my check point since his plate is not something he would bark at if it were empty or full.

This is a new issue and one I will keep an eye on.  No pun intended.  And yes, I did tell my wife.  I tell her everything!

Second, my autonomic functions no longer give me that early warning for a need to go to the bathroom!  Either one!!  So, I go from having no urge or inkling that I have to go, to an all out emergency rune to the bathroom!!  It is quite disconcerting as you can imagine.

I suppose, adult incontinence underwear are soon to become a necessity!  But, that Depends on how this develops.  (Pun intended)

More later, I have to go.

Sunday, January 25, 2015

Lately, sometimes I want to scream!!

I notice in the evening, I get this overwhelming, almost uncontrollable, need to scream.  It is not a desire, it is a NEED  !!  I do not know where it comes from or what the NEED comes from.  I just know it is new and frustrating.

I was posting on the LBDA.org social group and I lost my train of thought.  I began to meander.  I did not delete what I wrote, but left it alone.  Again, this is a new issue.  Up to now, I have been able to write my thoughts fairly accurately.  This event also caused me frustration.

I realize I am moving into uncharted territory for me.  And, since the availability of first hand information about the LBD journey is all but nonexistent, I am going through this alone.  However, at least I am providing what I can for others who will follow.

Again, the emotional journey is much worse than the physical one.

We become as we were

It seems, as this disease progresses, I become as I once was.  Now, if I want to go somewhere, I either need to take a bus or have my wife or a friend drive me there.  And, if she does not want to do what I want to do, well, I loose.  It is just like before I got my driver's license!  

And the Hank Williams' song that has the lyrics; "And the hangovers hurt more than they used too.  And corn bread and ice tea have taken the place of pills and 90 proof."  have become my reality.  All my rowdy friends HAVE settled down!

It is not the worst possibility.  Not having a hangover is a good thing.  But, loosing my independence is something I never figured on.  And a good liberty is going to a funeral and seeing a good spread of food!!

We went to a funeral today and they had an open bar!  I passed right by it because there was no coffee and I saw the chow line with fresh crescent rolls!!

I used to drink beer until my kidneys hurt!  I thought I was the only one with that problem.  But I talked to a friend of mine and he had the same issue.  I guess it is a Navy issue!

The things I used to be able to do, like drive, go places alone, control when I go to the bathroom, are now only memories.   But, in turn, I don't seem to miss those things anymore.  I do miss my friends, our outings and road trips, and my Church family.  But, as I said in the opening; I have become like I once was.  Directed, cared for, and dependent on those who care for me.   Life has gone full circle, almost.

Thursday, January 15, 2015

How to deal with a progressive disease

As I wrote my last post, I got to thinking how I could do so well with a diagnosis of Lewy Body Dementia.  Many people, including our dinner partner this evening, comment that I do not show signs of LBD.  Of course, they have no basis of my past capabilities to make that judgement.  But, it came to me tonight, that how a person does with a disease, is totally dependent on how they handle the diagnosis!

My neighbor across the hall is not doing well.  He had a degenerative muscle disease that has required him to be surgically catheterized.  He is not happy with the procedure and how it effects his quality of life.  So, his unhappiness translates into how he lives.  He is miserable because he is not capable of the things he once was.  And that mental battle keeps him upset, unable to sleep, and miserable!

I know people that have very destructive diseases, that look bright, happy, and for all perceptions, unaffected by the disease that is ravaging their bodies.  They look at life as a challenge and choose to find the positives i their life, regardless of their medical condition.

I choose to look at my life in the same way.  I used to have a near photographic memory.  I could remember the electronic, hydraulic, and mechanical, schematics of the MK 42 gun mount.  I could use that memory to trouble shoot this extremely complicated weapons system. Now, I cannot remember most things.   In case you did not read a previous post, I have actually woke my wife up in the middle of the night to ask her name!  True!!

So, I choose to enjoy life on the level I am at today.  Yes, I no longer drive.  Yes, I have lost much of my muscle mass.  Yes, my cognitive skills are waining, but, I still can serve God through a ministry He gave me.  Yes, I can still enjoy some of my old hobbies.  But, I also have great conversations with new friends.  Do I remember who they were 10 minutes after I met them?  No!  Who cares, they wear name tags here!!   I can still read.

So, I  credit my slow progression, even though it has progressed lately, to my positive attitude towards my disease.  And that applies to my wife also.  She does not let me divorce myself from the things of life.  I believe this will keep me mentally active longer than someone who gives in.  Yes, I have relaxed my fight.  I do not pretend to be normal anymore.  But, I am still engaged and as active as I can be.

So, if you had LBD, perk up!!  Look at the things that happen to you as a new challenge and something interesting to live through.  Not the end of you life as you knew it!  Because if you do look at you disease as the "End of your life as you knew it",  it will be!!

The impact of the move, part two

We are acclimating to Azalea Trace very well.  We have met many Christian people and have enjoyed those conversations at many dinners.  Tonight we spent two hours at dinner tonight discussion Christian topics and finding out that the people we were eating with had many mutual friends with us!

Then there are some very interesting Navy folks here with some exceptional sea stories. Almost every meal brings another person or couple that we connect with on a number of levels.  Almost all of them are older than us, but that does not seem to matter.   We are neighbors and all in the same boat together.

Today, my slippers came!  I ordered elk hide slippers from LL Bean.  They are like walking on pillows!  They have non slip soles and I love them.  They are at the direction of my Doctor.  It seems some pain I was experiencing, that I have mot forgot, would be helped with good, supportive, slippers.  I have them but I forgot what the pain was.  Oh well.

My cognitive issues are probably going to stay where they are.  I do not see any rebound.  Again, no big deal.  I am smart enough to accept the fact that I cannot stay where I was or even where I am, forever.  This disease has to progress.  That is what a progressive, neurological, disease does!  Progress!

One of the issues both my wife and I see is speech difficulties.  Either I cannot remember the word I am looking for, or even an alternative word.  Or, I cannot form the word and I studded and stumble over my tongue that is waving around my mouth uncontrollably.  It is frustrating for me.  Today, at our weekly Bible Study at the Gulf Breeze Assisted Living Facility, I lost words and control of my speech a couple of times.  It does not phase those wonderful people, only me.

Hallucinations are getting more prevalent again.  I had a reprieve for a while, but I am seeing realistic things that are obviously not there, more often.  Tonight, before dinner, I had to go to the bathroom.  So, I went in the men's room, near the dinning room of the community.  As I washed my hands, I turned around and saw our 13 year old poodle, Cherie.  In the public men's room!  When I looked again, I saw it was the "Wet Floor" sign!  Now, Cherie has made the floor wet, but she has never been in a public men's room.  Again, it looked real, but it obviously not.

This move, even with the bump in my cognitive decline, is a good move for us.  More later.

Wednesday, January 7, 2015

Impacts on me from the move

Linda and I have both noticed a drop off in my mental function since the move.  We both knew the was a possibility.  She hopes it will mitigate itself as I acclimate to the community.  I am not as hopeful based on past experience.  I have never rebounded from these drop offs.

The last few days, I have actually felt "drunk"!  Things look farther away, when we drive, things seem to fly at me, and I am unsteady on my feet.  When I got up from my nap today, I was dizzy.  This, coupled with my recent breathing issues leads me to believe I may be on a new, lower, level.

No big deal.  I know LBD progresses and I have no fantasy that mine will stop progressing.   So, I can either accept the progression of get stressed out and more depressed.

One of the issues of the move is there are so many nice, friendly, people living here and I cannot remember their names!  It is frustrating.  Many of the residents wear name tags, and that helps.  I try to wear mine most of the time so the residents know who I am.  Most of the residents do not know I have LBD.  I guess I a reticent to introduce myself with; "Hi, I'm Don and I have LBD!"  It sounds like I am in AA.

So, we will continue to deal, or struggle, with the "new normal".  One thing that would help me is;  If friends and family would be honest and stop trying to put a sugar coat on how they see me.  They MUST see the change in me.  So, why not just say, I see you have had a mental change.  How are you dealing with that?

I realize I deal with my disease different than others.  But, I prefer open, honest discussion, verses stilted deception and misrepresentation.   But, I know some folks feel awkward with discussions about my disease.

Again, as I have said before, the purpose of this blog is to openly discuss how I deal with LBD.  So, now you know where I am on this change.

More later.

Tuesday, January 6, 2015

Sometimes it is NOT dementia!

I was sitting here, in my power recliner, thinking of the past.  An event came to mind that caused me to laugh and also think.    It was a long time before i was diagnosed with LBD.   We lived in the Tidewater of Virginia and we were looking at property in North Carolina.  I was on the telephone wit the realtor setting up our appointment and she was giving us directions to the property.  She asked my how we were coming?  My reply was;  In a white Bronco!

I still laugh at that one.  Obviously she was asking which route we we re driving south on.  But, that did not enter my mind when she asked the question.  And we were driving down in  our full size, white, 1984 Bronco.   Made sense to me.

Now, I answer questions wrong often.  Sometime I misunderstand the question, do not hear it clearly, or I am just confused.  But that reply still take the cake!

Sometimes it is not dementia.  Or, was it?