Thursday, August 29, 2013

Choosing medications that you agree to take

My wife is very up to date on all the drugs I take.  She never gives me a new drug until she does her research as to side effects, interactions, and long term effects.  Then, she monitors each drug for side effects and communicates any issues with my doctors.  She even monitors the over the counter drugs like cold remedies and pain relief potions for interaction with my prescribed drugs.  I am in great hands!

Recently, my neurologist told me to reduce my Sinemet because it was, and always has, causing me nausea.  The neurologist tole me that Sinemet was a Parkinson's drug and would not help my parkisonian symptoms because I have LBD!  He is the FIRST neurologist to tell me that!   He also said his goal would be to take me off Sinemet.  Well, I cut down my dose for a week and then cut OUT my dose all together!  My leg and arm muscles feel the same and I do not have nausea!  I'm happy.

Prescription medications cause numerous issues and if they become more problems than the symptoms, it is time to get rid of them.   Razadyne and Namenda have helped me and we saw that from the beginning.  Yes, I know they will loose their effectiveness over time.  But right now, they help.  But it has been my experience that none of the Parkinson's drugs help me in any way.  I have taken a number of them with little or not positive impact and plenty of negative issues.

So, my point is, doctors are legal drug pushers.  Drug reps court them, give them free samples, give them studies on the drugs they sell, done by the companies they represent.   But I can't blame the doctors.  How can they be expected to research every new drug and new use drug out there.  So, they give us drugs and it is up to the patient and the care giver to tell the doctor the positive and negative issues of the effect on the patient.  What I am saying is, the patient and the caregiver have the power and responsibility of managing the drugs taken.  We should NEVER follow drug or treatment recommendations blindly!

So, I am Sinemet free, nausea free, and still stiff and sore.  That's progress!

Medication management

I have felt a little more foggy and confused the last few days.  When I look at things, I feel like I am looking through a tunnel.   As far as I am concerned, this is the natural progression of my disease.  However, there are some things impacted by this recent downturn that cause issues.

Yesterday, I noticed when I was at our "Command Center" that I had not taken my morning pills.  It was 9 PM when I noticed this!  I was upset with myself because this has happened a couple of times over the last week to ten days.   Again, this is because my LBD is getting worse.  How can I say that?  Up until couple of years ago, I managed my meds.  I made sure they were being refilled.   Arranged my pills in daily pill box, and took them on time.  Then, after we moved to the Seniors Apartment in Virginia Beach I became overwhelmed by the number of prescriptions.  I had missed some refills, got them in the wrong order in my pill box, and in general, messed them up causing me to miss doses or even the entire drug.  My wife figured out that I was having a problem and took over the management of my medications.   I was still in charge of taking them on time.  Now, it appears I can no longer be responsible for that activity.   Again, this is one more thing that I no longer can do.

I never really ran the day to day budget since I was career Navy and gone much of the time.  And since my Wife is the best budget manager in the world, why argue with success!   She is also beginning to direct the long term savings too.  Again it is the details of managing anything that causes me issues.  That frustration, confusion, overwhelmed, feeling causes me to mentally shutdown.  I mentally "Run" from these types of tasks.  I never did that before.

Monday, August 26, 2013

Communications can be difficult

When things bother me, many times I get tired and introspective.  When my wife and caregiver asks me what is wrong, I say; "nothing, I'm fine, no problem."  As I have discussed before, my wife does not accept that and peels back the layers of cover up until she finds the root cause.  It is painful sometimes, but it works and we are much better for it.

Many times, I hide my hurt or disappointment on an issue and my disease causes me to forget the issue.  But the "Bruise" it caused remains.  Sometimes I look at that psychological bruise and wonder where and how I got it.  Sometimes, a number of those bruises accumulate until I have a sore spot that I cannot hide from her.  She then begins to probe until we find the source of all the bruising.

I realize I am much more emotionally sensitive now than before the progression of my LBD.  But I cannot expect my wife or anyone else to know what I am sensitive about or how what they say has effected me.  The burden to make my emotions clear in on me.  Unfortunately, I am defensive about telling those who I love that I am hurt over something they said.  It is truly a round robin.

So, we continue to work on openness and communications.  WE try to make these probing communication events non-hostile and without blame.  Furthermore, she understands that I sometimes forget where or how I got those bruises and she also understands that I am emotionally sensitive.  Just the same, I know I frustrate her and cause confusion.  But we love each other and are committed to making this journey as easy as possible.  WE have been and always be a team dedicated to each other.

Conveying my thoughts

I have found that it is easier for me to discuss my thoughts about my disease through this blog than in person, verbally.  Why, because I am alone and I am in charge of the flow of the conversation!  When I am discussing things in person, the person I am talking with is always in a hurry!  I see their frustration when I can't find a word, or my thoughts are slow.  That frustration makes it more difficult for me to formulate replies and interact socially.  So, I don't!   If I am in charge of the conversation, for instance, if I am telling a "Sea Story", I do pretty well because there are few questions to trip me up!

Some of you have commented on my ability to write about my experiences, when you question my voracity and tell my that I don't have LBD!  I exposes myself and my inner thoughts, to help other understand how this disease impacts the sufferer.  It is a bit unnerving to open one's self up explaining inner thoughts, fears, and disappointments.  I have addressed nearly ever part of the LBD experience in order to help my family and friends understand an to help the LBD community as a whole.  There is little information out there from the view of the patient.  And virtually no support groups.  So, those of us who have LBD and their caregivers, are on their own!  A lonely place to be.  This seems curious since LBD is the second most diagnosed type of dementia.  Oh well.

I find I am much quieter and much more reclusive because of this mental disconnect.  Like I have written in the past, people do not want to interact with me once they realize I have LBD.  I am annoying to them!   And they show it.  It seems they think I will infect them.  Just the same, through trial and error, I can get my thoughts out, fairly straight, through the use of this blog.

Another comfort in writing my thoughts is, while I control the flow, I can also edit them.  The lettering is all but warn off the "delete" key on my computer!  But, through trial and error permitted when writing, I can better get my thoughts across.  In a conversation, I loose the other participant after my second correction.  I understand that I can be annoying.  But I am not trying to be!  Honest!!  But because of LBD, my mind is just slower at processing things like replies!

Next time you are with me, observe my conversation skills and how I react when there are a few "normal" people having a conversation.  You will most likely find me uncharacteristically quiet.  That's because what I wanted to reply to went by me 5 minutes ago, and I know telling you now will only make me look stupid!  It's like having a new car with old car technical knowledge.  I know what is wrong, I just can't tell you!  I guess it is frustration for both of us.

What is that thing?

Last night, I had great difficulties identifying things!   A couple of times, I handed my wife the telephone when she asked for the remote control.  I also accused her of having the remote control for the television when it was sitting on my table.  I have done that before, when asked for the remote control I replied; "I don't have it." and it is sitting on my lap!!

Now, while these events are very frustrating to my wife, they are truly small in importance, or are they?  It is 5 AM and I am up, pondering these recent issues.  I try so hard to be "normal" yet my mind seems to fail me, especially in the evening.  My mental failure becomes a frustration for my wife and for me.

I have written before that I have met another gentleman locally that has LBD.  A few weeks ago, he and I were discussing getting ready for short, daily trips.  I told him that I tried very hard NOT to be the reason of the delay in leaving the house.  He agreed that he also tried to be ready before his wife.  Just then, his wife joined our conversation and told everyone there that her husband was always the reason they were late!

Having LBD is like living in a time warp.  I try to be ready, know where the remote is, take out the garbage, put my things away, but I still can't seem to get myself organized to have the right answer or do things right.  My mind will not let me accomplish simple things that I used to do and that frustrates my wife and me, which intern, makes things more difficult because I am trying more.  It is a round robin.

Another issue I am dealing with is deductive reasoning.  It is very difficult for me to understand some one's point in a long conversation.  I cannot keep the facts and issues straight in my mind.  This in turn, makes my reply either very late or non-sensical.  So, I don't participate in conversations for the most part.  Yes, I will try to get in any Navy discussion.  But I know "Navy" forward and backward.  But other topics like politics befuddle me quickly, so I just agree with the person or don't say anything.  It is a defensive measure to continue to look normal.

Sometimes I think that my LBD is moving along fairly slowly and smoothly.  Then, other times, like this morning, I realize I am impacted far more that I realized.  I want to be like I was.  I try to be like I was.  My wife wants me to be like I was.  People who know me pretend I am like I was.  But if we all look at things as they are, we will come to the conclusion that I am not as I was.  It seems I am looking at the world around me through a long tunnel that delays everything I see, hear, say, or think.  I want, so much, to be who I was with the capabilities of then.  We would all be better off if we accepted me as I am.  

Saturday, August 24, 2013

Age as it relates to Lewy Body Dementia

Many people have said I was too young to have LBD.   I was in my late 50's when I was diagnosed and I will admit, because of the tenacious professionalism of my Neurologist in Virginia, I was diagnosed when my symptoms were still in their infancy.  This permitted early treatment which the Lewy Body Dementia Association now says is the BEST thing to do for Lewy Body Dementia!

But, think about it.  No one says I am too young to have totally grey hair!  No one says I am too young to have arthritis.  No one says someone is too young to take Viagra.  I say that based on the observed age of the people on the commercial.  The fact is, Lewy Body Dementia impacts people from 50 on.  Yes, it is found more often people late in life.  I wonder if that is because the patient has "Hid" the symptoms!  I will bet that is the case if we look at the facts of the past.

Many times, we hide problems until they are too "Big" to conceal.  Especially men!  Also, sometimes memory loss is incorrectly written off to normal aging.  Yes, older folks forget where they leave their keys.  But do they forget where they are?  Or how to read?  Probably not.  But if they do, a neurologist visit is in order.

But, just because we have LBD, we still want to live our lives to the fullest.  It is just a bit more challenging, in the beginning.  That challenge does increase.  However, with proper medication, it increases slowly, at least in the beginning.

Tuesday, August 20, 2013

Marcel the wonder dog.

Today, Marcel the wonder dog, my constant companion, scared us.  We were at our Son and Daughter in Law's home.  I was holding Marcel, sitting on the couch, and suddenly he puled his left paw up to his chest and held it there.  My wife noticed it and had me set him on the floor to see if he could walk.  He could not even support himself.  Instead he fell over.  My wife and I immediately deduced that he was having a stroke and we quickly drove to our vet.  My Daughter in Law had called the vet and let his staff know we were en route.  The were waiting for us and very responsive.  Another symptom Marcel was showing was shivering.  Again, possibly a stroke.

Of course, Marcel was feeling somewhat better when the Vet saw him.  But, he was still not himself.  The Vet discovered a slight heart murmur that has never been discovered before.  Marcel was also somewhat tender in his abdomen and the Vet thought he might be in some back pain.  Marcel has had arthritis pain in the back before.  But, the Vet also said id may he a stroke, seizures, or even a brain tumor starting.  None of which we wanted to hear.

The reality is, Marcel is ten years old, a pure bread miniature poodle, and not all that active.  So, he may have some serious medical issues.  I accept the fact that all of us have a God planned expiration date.  Of course, Humans, who accept Jesus Christ as their Lord and Savior, have heaven to look forward too.  But, since animals do not have a soul, they just expire.  Sad, I know.  My goal for Marcel is that he does not suffer.  That is how we will approach these next few days.

As for me, I am doing as good as I can.  He is my constant companion and friend.  He cheers me up when I am down and cuddles close to me when I am feeling bad.  He knows when I feel bad, aso I will stay close to him because he feels bad.  We will go through this together.

I often have thought whether he or I would pass on first.  I believe I now know.  How ever this ends, it is God's plan and I fully accept it.  I will keep you posted.

Monday, August 19, 2013

People's attitudes, comments, and perspectives

If you read very many of my posts, you know that I have been dealing with my own emotions as LBD impacts me and my family.  I have had to suffer the prejudice of people when they learn of my diagnosis and then tell me I am not ill, I don't look, act, sound, appear, ill, or that they don't think I have LBD because I am not progressing fast enough.

I replied recently on this blog to a reader who flame sprayed me for that very reason.  I was kind in my reply but the more I read that comment, the angrier I get!  Now, some of that can be attributed to my condition and sun downing.  But, I am also aggravated over the audacity of a person saying that I am a fake!  

My Mom taught me, if I did not have anything good to say, don't say anything!  I have violated that admonition many times.  But tonight, I am going to follow it.  Just the same, anger is an issue those of us with LBD suffer from.  I try desperately to control it, especially with my wife and family.  Burning bridges where it concerns your primary care giver may come back to bite you when you are in a condition that you cannot defend yourself.   So, I try very hard with everyone to be nice, regardless of the situation.  So, while my tongue has teeth marks, I will follow Mom's admonition.

And I do appreciate your comments.  Some more than others.  And if you are angry with me because you think I am a fake.  Ask my wife, my neurologist, my psychiatrist, the CVS pharmacist, my son, my best friend, if I am faking it!  Additionally, I feel sorry for anyone who is angry that a fellow human being isn't suffering as much as they think he should!  Maybe you need some help.

Sunday, August 18, 2013

Conversations, replies, and aggravations

Last night, my wife and I had a long, much needed, conversation about how and where I am in my journey.  It was a long time coming because I am less than forthcoming concerning how I feel.   She asked me why I did not talk about what is going on and I replied; "Because you are not interested."  She then asked me how I came to that opinion.  I replied that when she replies to my descriptions of what is going on with; " I have those issues too", it says "I don't care about your problems."  In my mind, it diminishes my problems and says they are not important.  So, I don't say anything.

Now, I know my wife cares, but discussing my problems causes issues because of of the replies I described.  I also get frustrated when people say; "You don't look sick".  Would you rather I was drooling on my shirt and wetting my pants?  I can do that is it would convince you that I am truly effected by this disease.  I also wonder where they got their medical degree!   Then there is the crowd that avoids me after they learn of my disease.  Trust me, it's not contagious!  It won't rub off on you.

So, my choice is to not tell folks that I have LBD.  Then, when I tire out after a short time they can think I am lazy or not a "Hacker".  I really don't care!  I am beginning to get aggravated with how people treat me and look at me.  So, I stay at home more.

Back to our discussion last night.  My wife and pull the facts about why I am aggravated out of me.  I'm sure it is like pulling teeth!  But not because I don't want her to know, but rather that I really don't know.  Things build up, but I forget what they were.  I remember I am aggravated, but I really don't know why.  SO she starts playing 50 Questions until she builds a picture of the time back to when I was not aggravated!  She is a good detective!

I am sure this is normal for dementia patients, but it frustrates her to no end!  But she has no choice if she wants to understand where I am.   Good old LBD continues to frustrate us.

Saturday, August 17, 2013

I hate college football!

You may think this has little to do with LBD until you realize how angry I get at night!!  I am sitting in my new lift chair, with a cup of coffee, my faithful Poodle friend by my side, trying to watch Pre-Season Football.  But the local station keeps interrupting the game to tell me about some groupie gathering of South East Conference college football morons!

First of all, college is was originally designed for the upper class, rich people. to send their children to finish their education.  It was meant to broaden their spectrum.   In World War Two, the politicians wanted to pay back those who served so they came up with the GI Bill.  That made a way for any young person to go to college and turned the universities into trade schools!  Don't agree, watch those TV commercials.

College sports were little more that inter mural sports that cost nothing.  Today, they are billion dollar industries paying caches million dollar salaries.  College football is little more than the NFL minor league.  In any case, I am against ALL college sports!  You go to college to learn.  College football players do not go to classes, and when they do, they take fluff courses, that some smart nerd writes the papers for!  Most NFL players cannot read or write!   The idea that they are in college is a fantasy!  Maybe that is why Fantasy Football is such a big thing!

Then there are the so called fans of a college team that NEVER went to that college or any other college.  In the SEC, those fans are missing every other tooth, weight 300 pounds, and are very much like NFL players in that they can neither read or write!  Why would THEY be college football fans.  They haven't graduated from High School, or probably the sixth grade, which was the hardest 5 years of their education!!

If the NFL wants a minor league, they should start one like Major League Baseball did!  The NFL should pay the bill for this and not the tax payers of a state!   And by the way, very few college baseball players make it into the Majors in baseball.  They are too old by the time they graduate and they do graduate, unlike football players.

So, colleges and universities should be required to STOP all sports!  Stop ALL Scholarships for sports, and make college an academic endeavor!  It would reduce the cost of higher education and stop watering down the esteem of a college education.  Dumb jocks that can neither read or write can compete in the minor leagues of sports!

There, I don't sound too upset, do I.  It is night time!  ANd, if I offended you because you are a college football fan...GOOD!, I'm glad.  There, I feel better.  I'm going to bed.

Wednesday, August 14, 2013

Post replies

I received a reply today from one of my readers.  I truly appreciate everyone who reads my blog and I hope I provide some valuable information.  I also cherish the comments that each of you send in.  I publish all of them with the exception of anything personal, profane, or obviously commercial.

The post I am responding to is from a person that has a parent recently diagnosed with LBD.  This is always a difficult time.  The individual asked me some questions that I want to answer here.

First, I am in my mid sixties.  I was diagnosed in 2009 after an exhaustive series of cognitive skills testing at my Norfolk Virginia neurologists office and then at the University of Virginia Medical Center.  After both groups of doctors agreed on the diagnosis of LBD, my neurologist immediately started me on Razadyne (Arecept family) and Namenda.  On the Lewy Body Dementia Association's website, I have learned that the earlier a LBD patient is placed on these two drugs the better the results are.  These two drugs seem to delay the degeneration better in LBD patients than in Alzheimer's patients.  Why, I don't know.  But it has worked well.  Also, I retired from a very high stress career early and that has helped me also.  Stress is a big negative to all dementia's.

I do hallucinate.  It started with small things.  A mouse running across the floor, birds in teh house, etc.  Now I see airplanes crashing, and horses in my backyard!   Really!  I have also seen cars where there were none, and boats that were not there.   Up until recently, I always knew these were hallucinations.  But lately, I have to check because they look so real.  Also, dreams are very real to me and I wake up trying to complete a task I dreamed about.

Another symptom I have is violently acting out my dreams!  One night, a while ago, I was having a dream and in that dream, I was in a fight, and I needed to punch someone, so I did!  It ended up I punched my wife, hard!  I now take meds to mitigate this.  My neurologist said the part of my brain that keep me from moving and acting out my dreams, is broke.  This is a normal issue in LBD.

Additionally, there is an entire family of drugs that people with LBD react badly too.  That family included Donepezel, Seroquel, Abilify, and these drugs caused me extreme anger issues.  That is a big indicator for LBD.  I don't take any of these now.

Another fact in my journey with LBD is that I was exposed, heavily, to a chemical that is proven to be neuro-toxic and a cancer causer.  That chemical was used in the hydraulic fluid used in the gun mounts I worked on for well over 20 years in the Navy.  We were never told of the danger until 1989.  We were covered in this oil, many times for weeks at a time because there was no fresh water for bathing.  It got in cuts, we swallowed it and breathed it when it was atomized by the 1500 psi hydraulic system. I was hyper exposed to this toxic chemical through no fault of my own.

So, while I may be young for a LBD diagnosis, It is not out of the question.  I have met another retired Navy member who is my age and diagnosed with LBD.  He is a little further down the line than me.  WEBMD has a good site on LBD.  It says the normal run is 4-20 years for LBD so I am just in the first quarter if I believe their information.  I do know that because my neurologist in Virginia was so tenacious in my treatment, and diagnosed my condition so early, which lead to my use of Razadyne and Namenda early, I will probably have a longer period of cognitive capability that someone diagnosed late in the diseases progress.  Which is why I am doing as well as I can.  I do suffer from sundowners and I do take a nap almost everyday.  I have no stress in my life thanks to my wife.  She also administers all my medicines and runs our household finances.  I walk with a cane and sometimes a walker.  I have a lift chair and grab bars in the bathroom.  So we have made accommodations to this disease, but I refuse to give in to it.

It is a long journey, one I did not plan for, but one I will complete with bravery and class.  I am a tough old bird.  I will not go quietly into that night!

Hope this answers your questions.

Tuesday, August 13, 2013

Confused, unable to make a decision

My neurologist in Virginia said my "Executive Function" was broke in my brain.  More and more, I realize how correct she was.  I prided myself on my decision making ability.  I could take all the facts, the variables, even the emotions, and come up with a reasonable, even good, decision.  Many of the decisions I made in the Navy and working as a Civil Servant in the Navy were life and death decisions.  Hot Gun Foul Bore emergencies, shipboard fires and damage control, personnel issues relating from too much alcohol, drugs, or emotions, underway replenishment, and many other issues.  

But now, decisions are difficult to come by if at all.  I have related to my readers how I have a mental safe place that I go too.  My "Cement" house on 40 acres.  My survivalist fantasy.  But I also have a cocoon fantasy also.  A continuing care facility that has the capability to meet all of my wife's and my needs.  Of course, there is also the issue of living in Florida, without close friends, and living in Virginia Beach, close to all my friends.  Then there is the issue of owning a home, with all the problems and issues that brings, or living in a senior's apartment, which also has it's own issues.  The bottom line is, I can't make a decision and that frustrates me.

There was a time, I could weight all of the pros and cons and come up with a decision.  Today, I can't decide when to go to bed.   This disease causes numerous issues.  Stiff legs and arms, pain, memory issues, emotional issues, insecurities, depression, but my inability to make a simple decision is the most debilitating to me right now.  And I do not know what to do about it!

I do know that I am not happy because I am unable to settle my mind about the future and it seems to me that things are changing faster than I can keep up with it.  As a matter of fact, I really don't know where I am in my thought process.  I guess it's good that I am not an executive anymore!

Monday, August 5, 2013

Vacation Bible Study

Our Church is hosting Vacation Bible Study this week.  I am a small group leader of 10 boys and girls ages 3 to 12!  You might think that would be very difficult but it is not.  The Children watch after each other and the younger children seem to emulate the older Children.  The two three year olds and I get along famously.  Why, I think because at heart, and somewhat mentally, I am a three year old at heart!  I love it.

Now, how am I doing with this extreme 4 hour drain on my energy?  So far so good.  I came home, ate a sandwich, and took a 3 hour nap!  As long as I can do that, I think I will be OK.  One thing that is difficult for me is getting up from the floor!  We sit on rugs as a small group during big assembly times.  The VBS Leader conducts this community time and she has us get up and sing and then sit down, and then get up and sing!  The Children have no issues with tis, but I do.  However, the 2 thre year olds like me to sit with them and I refuse to disappoint them.  Boy do my legs hurt tonight!  And is is only Monday!

Another issues is memory verses!  Trust me, the three year olds do better than I do!  But, I have the book!!  And, for the most part, I can read!  At least for now.  So, while I am bust for another week, I am enjoying myself serving God.  This is good.

One thing I have learned dealing with Children's Ministries over the past years is,  Children want to be treated with love, acceptance, and respect!  If you treat them this way, they return those qualities to you with interest.  Of course, Adults want to be treated with love, acceptance, and respect.  I think there is a lesson in here, somewhere!

I believe, with naps, rest, and persistence, I will make it through the week.  I know I will not give up and I will never surrender to my disease.  I will not admit defeat.  I may weaken, but I will not break.  That is how I have attacked this disease.  That along with my detached view of the disease, thinking of my symptoms as "interesting".  I intend to continue this way.  Thanks for your support.  I learned that from Bartles and James.

Thursday, August 1, 2013

I learn something new every day about my wife

We have been married for over 40 years and I learn something new every day about my wife.   She is a strong, determined woman.  Intelligent and resourceful.  But she is suffering from depression and anxiety because of my disease.  She sees my disease progressing but she says nothing.  She treats me like I am healthy and without this disease, yet she protects me like the mother of a three year old!

I see her hurting.  I see her anger at the situation.  I understand why she is depressed and why she suffers from anxiety.  I know she hides her hurt and outs on a strong front.  But that front is beginning to crack.  I did not realize that until this week!

Last week was stressful because of our Grandson's surgery.  We weathered that week fairly well.  She better than I, but we survived.  This week, the toll has shown on her and me.  I wonder how I can help her.  I try to be independent, helpful, upbeat, and normal.  But I get myself in trouble for doing things that wear me out.  Again, that protective mother bear comes out.

I love my wife and I know she loves me.  We both cling to the promises of God.  I wish, more than anything that I could take away her grief, her hurt, her worry, and her pain.  But I can't.  I can only do the best I can in the shape that I am in.  Yet she is still suffering.  Again, I just realized just how much.