Tuesday, November 26, 2013

The benefits of having a disease that leads to death!

Yes, there ARE benefits to having a degenerative neurological disease that is fatal, you do things you probably would not have done!  Today, at the Gulf Coast Alabama Zoo, we had the wonderful opportunity to spend 30 minutes with two beautiful tiger cubs.  They were Bengal Tiger cubs, three months old, and full of energy, wonder, and mischief!  The Zoo uses "animal encounters" to raise support since the Zoo is self supporting.   My Wife, Son, Daughter in Law and two of my three Grandsons were in a private area with a professional from the Zoo and a male and female cub.  The were BIG!  They had BIG paws, teeth,  weighed 30 pounds, and plenty of strength.  They loved playing with their prospective food, humans!  The loved to chew and lick.  If you got on the flow and layer down, they loved to walk on your back, lick you hair, chew on you, and play as only Tigers can.  They bite necks, legs, butts, and in my case, ears!  Not hard bites, but playful bites to see your reaction.   It was just plain fun.  And for someone who grew up next to "Jungle Larry's" first exhibit at Puritas Springs Park on Puritas Avenue on the west side of Cleveland, it was a dream come true!

I have always loved animals and encounters like this excite me and give me great pleasure.  In the past, I may not have agreed to spend the money to experience this, but now, I have learned to take advantage of opportunities when the present themselves.

I have known individuals in similar circumstances as mine who still don't take advantage of fun and exciting opportunities.  They are saving their money for something that may happen in the future.  And I agree with holding some back for that unknown event.  But, life is short, so if I can, I will.

Now, I am extremely exhausted from the drive to and from, and the event.   My legs hurt and I am having trouble moving around.  But it was well worth the pain.  So, I will sleep in tomorrow morning,  and then, I will begin looking for another life experience to try!  

Thursday, November 21, 2013

Unfulfilled Dreams

Before we left Virginia, I had an appointment with a neurologist that was new to my doctor's practice.  She was young, just out of her residency, and full of new knowledge, looking for someone to use it on.  After a short time of talking, she told me that I had not YET come to terms with my disease.  I disagreed with her, loudly.  Now, a couple of years later, I can say that she was right!

I can now say that I am fully engaged with my Lewy Body Dementia.  It is forefront in my thoughts and it fills my days with reminders that LBD is here to stay.  In the beginning of this journey, I looked at my disease as though I was looking at someone else dealing with it.  Now, I see it in the first person.  I also used to say;  "If you have to have a disease, this is a good one to have, because you forget the bad parts."  That is no longer true and I don't say that anymore.  I believe this is the middle innings of this journey and the stakes have increased!

I think continuously about the past.  Friends, events, places, things I did wrong, and unfullfilled dreams.  There comes a point in this journey when you realize, it is over!  You have done all that you will accomplish.  No more new mountains to climb or challenges to win.  Your legacy is already written and the ink is dry.

That's not a bad thing.  It is true that I have now accepted the totality of Lewy Body Dementia.  But there are some things I wanted to do that I just never did.  For instance, I always wanted to be a survivalist.  Live on a large piece of property, off the grid, growing the majority of what I ate, making my own electricity, totally independent from society.  My thoughts in the evening still go to my concrete house, on 25 acres, with solar and wind mill electricity, no phone, television, computer, or neighbors.  But you and I know that will never happen.

Another exceptional blogger who is a caregiver for her husband who has LBD, wrote an early blog about her husband purchasing a new pick up truck with all the bells and whistles!  It was shiny, chrome covered, and beautiful.  He dented it the first day he had it!  That truck was most likely his dream and he was going to fulfill it, at least for a day.  I also knew of a retired Naval Officer who was diagnosed with terminal cancer.  He always wanted a Corvette.  So, he went and bought a brand new Corvette.  Drove it home, parked it in the garage and never drove it again.  He died less than a month later.  But, he had his Corvette.

For someone on a journey like mine, that unfulfilled dream haunts us.  Work, family, responsibilities, saving for the unknown future retirement, saving for security, all take precedence over paying for dreams.  We work crazy hours, to pay for things we don't want, to satisfy the needs and wants of the ones we love.  Most men sacrifice their dreams for family and security.  But in the end, I never knew someone who said; "I wish I would have worked longer or harder."  In the end, we realize that money does not purchase happiness or security.  It does not satisfy our inner needs.  It is dreams that fill our thoughts with happiness and pleasure.  And even though I will never have my concrete survival home, every night I go there and lock the door before I go to sleep.

Wednesday, November 20, 2013

Telephone calls are a lifeline for me

Since we moved to Florida, I don't get to see my Navy buddies from the Tidewater Area of Virginia and other places around the country.  Many of them still work and travel is not an option.  I fully understand that.  But telephone calls keep me going!

Every week I spend at least and hour on the phone with my best friend Jerry!  We discuss anything and everything.  His calls rebuild my moral ands my spirits.  I have another friend from the USS Stein days that calls me at least once a month.  CJ and I talk about our exploits and old friends.  I look forward to his calls.

I get monthly calls from one of eh Supervisors that I worked with for 20 years in civil service.  Steve and I enjoy a special connection from our work days as well as with my disease since his Father had Alzheimer's.

Other friends call less frequent, but their calls are just as precious to me.

I remember when I was on active duty and deploying on a regular basis.  Telephone calls home, to hear my wife's voice, to talk about home, was the best, sweetest, thing I had.  Back in those days, long distance, overseas calls were VERY expensive.  But we did not care.  It was our lifeline!   Well, today, calls from friends and relatives in still my lifeline.

With LBD, it is easy to get overwhelmed with the emotion of; "No one cares about me anymore".   Depression, is a real issue, even if I deny it.  But a call from a friend is just the medicine to cure the depression blues.  To hear how everyone at work is doing, or how the last Gun Show was, is a salve to my damages psyche.  I still check out the local news on Hamptonroads.com first thing, every morning.  I check the weather report, and the obituaries too.  I need to stay connected to home.

I know it is easy to forget an friend or relative that is some distance away and impacted by a disease.  They are out of sight and out of mind.  Yes, you send them a Christmas card.  Yes, you think about them is they come up in a conversation.  And you probably tell one of their jokes or sea stories every once in a while.  But they never know that because you never call.

Email is nice, but your voice is the medicine we need.  The only thing better would be a visit.  But as with me, work always comes first.  I understand that.

The few times a month that I am home alone, I never have the television or radio on.  I enjoy the quiet, and I want to be able to hear the telephone ring so I don't miss a call from a friend.

Some time alone, to think

My wife and I are together 99% of the time.  She gets a respite from me on Wednesday mornings when she goes to a Bible study.  Linda has been involved with Bible Study Fellowship  (BSF) for many years.   It is an international Bible study that actually requires the attendees to do the assignments!  She truly enjoys this time away and it depends he walk with the Lord.

I get the only time alone at home that I get each week.  I do not go out of the house during this time.   do find projects inside the house to do, or I surf the Web, or talk to old friends.  I am pretty good at filling this time with things that I enjoy.

But it illuminates to me, our need to have some alone time, to think, relate to others, or foo something that is totally our interest.  My wife is my only caregiver.  I know that I am on her mind 24/7/365.  Managing my meds, checking how I am doing,. reacting to the many mental changes that happen throughout the day, worrying about the future, managing our finances, driving me where ever I need to go, and making sure I take my meds!  She needs a pay raise!

If it were not for Linda, I would most likely be in a professional care facility that could keep me on track.  By, Marcel the Wonder Dog and I are under her expert, loving care.  But still, she needs time to pursue things that enrich her.  I do not know how to make that happen, but we need to.

Today, my mind is more confused and detached than normal.  While I am fine to be alone, I notice that I cannot concentrate on any one subject.  It is like, surfing through an article and having advertisements pop up every paragraph.  Those BIG ads that fill the entire screen and are loud!  After the shock of that mental interruption, I have difficulty getting back to was I was doing.  As I have written before, that is caused by the failure of the "Executive Function" in my brain.  This LBD issues is more frustrating than others.  I just can't stay on point.

For instance, at this point, I really do not know what the main point of this post was supposed to be!  I sat down with a need to write a post on some important topic, but, for the life of me, I don't remember what.  Just the dame, it illustrates the condition and that is good for the readers.  Thanks.

Saturday, November 16, 2013

Feeling down

Today, I had an outing planned.  The person that I wanted to go on that outing with could not make it.  So, because I can no longer drive alone, I did not go either.  I suppose that's the way it goes.  My Dad used to say that he hated to make plans because when they happened the event was anticlimactic and if it did not happen, he was disappointed.  I am beginning to understand what Dad meant.

Older adults are treated as burdens in our society.  Our infirmities are looked on as an inconvenience to the young.  Even the Affordable Care Act penalizes the young to help the elderly.  How long will it be before the premise of the movie "Soilent Green" becomes real?  If you do not know about this movie, find it and watch it.  It is much like Orwell's "1984".

But folks with experience, and you don't get experience until you are old, have much to offer if the young would only listen.  But alas, they don't.

I wish so much, that I had listened more to my Dad and learned more from him.  I had more time with him than many other young people do.  But it was not enough!  Now, I long for his sage advice and teaching stories.  No computer, blog, book, or recording can ever replace one on one discussions with a person of experience.

Instead, Marcel the Wonder Dog and I sit in my power recliner and lament our situation.  I once knew an older person who told their children; "If you don't come see me now, don't bother coming to my funeral!"  That was a difficult pill to swallow then, but I understand the sentiment behind the statement.

When we are young, we are in a hurry and we tolerate nothing or no one that will slow us down.  Career, interests, friends, love, excitement, all come first.  Then, we get old, and all of the things that kept our attention seem to fade away.  And, because we did not take time to build relationships, we are alone, wondering what went wrong.  A friend sent me an email the other day that had this saying on the bottom;  "We grow too soon old, and too late wise."   How true it is.

Friday, November 15, 2013

Good days and bad days, a way of life.

I received a comment today from a reader that asked me if I had good and bad days.  The short answer is yes.   This is a cardinal symptom of Lewy Body Dementia.  But I actually experience changes from good to bad or bad to good during the day.  This morning, when I woke up, I felt like there was nothing wrong with me.  We had Marcel the Wonder Dog groomed this morning and then headed to the Commissary to do our grocery shopping.  Halfway through the Commissary, I was confused, tired, and disoriented.    That passed later in the afternoon, however, I am now experiencing my sundowning issues.

I have written before that I almost hate the good times because I know a bad time is just around the corner.  The roller coaster ride of LBD is most aggravating.

Another question related to stability.  I use a cane often as a stabilizer.  I also have a rotolator that I use for longer walks and outings.  In the house, I stubbornly refuse to use my cane.  I have fallen but normally I just stumble or wobble.  I guess I am like a Weeble!  My mobility issues are rigidity, mostly in my legs at the moment.  As I understand it, my "Push and Pull" muscles are fighting with each other.   My muscles normally feel like I have just completed a marathon!  They are sore, tender, and stiff.  The rigidity is moving to my arms and my lower back.  This rigidity effects my balance especially in a slippery or uneven surface.  

LBD impacts many functions.  Memory, hallucinations, balance, even your feeling of safety and well being.  I often say this is a good disease to have because I forget the bad parts.  But, it is also a difficult disease to have considering all the parts of your life it effects.

The last part of the comment related to professional care.  My wife and I know there will come a time when I am too difficult to care for.  She cannot life me out of bed now, so if I am unable to get up, we would be in trouble.  The reality is, most of us with LBD will require professional care.  Most of that care is provided in a Nursing Home or Memory Support Unit.   We are presently on the waiting list to move into a Continuing Care Retirement Community that provides independent living and all levels of assisted living including professional care.  Planning ahead is the best way.  Of course, sometimes LBD moves faster than you can plan.  We are blessed that my journey is somewhat slow at this time.

I have said it before, those of you who read and comment on this blog are my support group.  I love to read your comments and hopefully, provide you some insight into my journey.  As Red Skelton used to say;  Keep this cards and letters coming!  Thanks.

Wednesday, November 13, 2013

What helps you feel better?

Those of us who are in the first half of our journey with Lewy Body Dementia, still seek out the pleasures of life.  Food, travel, companionship, hobbies, intimate relations, all still bring us pleasure.

I love to eat.  However, my Doctor has put me on a reduced carb diet.  It has worked wonderfully.  I have lost 45 pounds so far and my Triglycerides and blood sugar are now well with in normal specifications!  Does this mean I don't eat what I like?  No, I just eat less of it.  For instance, tonight, we decided we wanted Cheese sandwiches and tomato soup for dinner.  How did we do it?  We each had one toasted cheese sandwich on lower carb bread than our old favorite, Milton's Bead.  We made the tomato soup with water instead of milk.  It was great.

We have learned that I do much better if we connect with friends, nature, and ourselves.  We walk for exercise, enjoy Church, shopping, and family outings.  While I want to sit in my recliner, alone, I am much better if we do something interactive, interesting, different.  Interaction challenges the brain.  While I ride in the car more than drive, I still enjoy being out and around.

I am interested in what helps you feel better.  I am always open to learning from other with more experience than me.  So let me know!

Tuesday, November 12, 2013

The feeling of not being here!

Many times, especially in the evening, I tell my wife that I feel like I am not here!  I have a feeling of being far off, distant, disconnected, and not engaged.  I will stare off into space and see nothing.  The television will be on, but I do not hear the program.  I am mentally not in the room.  It has also happened when I am riding in the car, mostly in the back seat.  My wife and son are in the front seat having a discussion, and I am in the back seat, in my own world.  

This is a common issue for those of us with LBD, but it is very unnerving for us who actually suffer from this issue.   If it were not for the clock with a calendar that sits on the television stand, I would never know the day or date.  In my defense, being retired, I have six Saturdays and a Sunday.  So the days mean very little.  But there are days that we need to be somewhere, like a doctor's appointment!  So knowing what day it is, IS important.

Being able to express how these symptoms impact and effect me is a blessing, for my family and I hope for those of you who read my blog.  When my wife and my neurologist in Norfolk, Virginia encouraged me to start this blog, they both wanted me to express how I was dealing with this disease. The idea was to get me to look at my disease honestly.  It has worked.

In the beginning, I had a "Third party" view of my disease.  I used to look at myself as if I was out of my body and looking at someone else.  Now, I know it is me and I view my issues as my issues, not someone else's.  I know this sounds strange, but it is exactly how I have progressed through this journey.   In the stages of Grief, I am now in the acceptance stage.  I have LBD, it will not get better, and it will get worse!  I never would say that in the beginning.  I always thought, deep, down, inside that I could beat this disease.  Much like the surgery took my colon tumor away.  Well, I now know that is a fantasy and I am in this for life.

So, while I feel disconnected much of the time, I really do know what I am facing.  But it is the disease that causes me to be detached from my surroundings.  Another issue to deal with.

Monday, November 11, 2013

The Lewy Body Dementia Association WebSite

There is little information available about our disease.  WEBMD does a fairly good job giving the basics, but there is no other place to find first hand information that the LBD association site.  Not only do they give good, up to date , information.  But the offer a place to communicate between care givers and also those of us effected by LBD.  I encourage everyone impacted by this disease to check out this site.

They also provide information on the most recent developments in research on this disease.  It has always amazed me that LBD is the second most diagnosed form of Dementia yet no one ever heard of it.  I have dealt with doctors that do not know what LBD is!  So I believe those of us who are impacted by LBD should get the word out also.  

I would like to see more networking within the LBD community.  More workshops, more local support groups, and more one on one support between LBD patients and caregivers.  Something like the Alcoholics Anonymous program.  Why, because someone newly diagnosed with LBD needs to talk to someone who has had the disease for a while.  We need first had answers and support from someone who knows what is going to happen.   That type of first hand knowledge will go a long way to mitigate fear and stress.

I seem to spend much of my time trying to figure out why something is happening to me.  Yes, I know it is caused by the disease.  But what stage am I in?  And yes, I understand I am getting worse, but, is the latest change expected?  Do most LBD sufferers have tis issue?  My neurologist is of little help.  My psychiatrist is better equipped to deal with questions, but I still do not get the answers I need.  There is the LBD patient I see at the local rec center.   He and I trade issues and understanding and I find my infrequent conversations with him my best help.

So, check out the LBD association web site and then, get the word out.  And thanks for your comments.  The information I get from each of you is precious medicine to me.  I get information that lets me know I am "Normal" for having LBD!  

Thursday, November 7, 2013

Sometimes I get tired of the fight!

When you have Lewy Body Dementia, every day is a fight!  You fight to maintain some resemblance of being normal.   You struggle to do things.  You struggle to hold your temper when the night brings the angry and agitation.  Now I have to struggle with my doctors and CVS Pharmacy on who writes which prescription.  Since we moved to Florida, my prescriptions have been in constant turmoil which causes major stress for my wife and me.  Frankly, I am tired of the fight!

I have complained before that there is no on to help those of us impacted by LBD or any other dementia.  Each one of us is on our own to fight the many conflicts that arise.  We have no organization, business,  or individual to turn too for help and advocacy.  Again, I hear you saying;  "Why don't you start one?"  I am busy enough trying not to pee in my pants well enough start an organization or fight with a pharmacy or doctor's office.

This is the place where I begin to think I would be better off in a Memory Support unit or in an Assisted Living Facility where they deal with my fights.  Of course, I am not ready for that, yet.  But it is a tempting proposition.

If you are a care taker, you have my everlasting respect.  I know my wife is burdened with a tremendous amount of responsibility and the stress that goes with that.  I really cannot help that much.  The best thing I can do is stay out of the way.

So, the fight goes on.  Right now, LBD is winning.  I suspect it will stay in the lead until the end.

Wednesday, November 6, 2013

Early to bed...

Monday night, I went to bed at 6:30PM!!  Why, because I felt myself getting angry and mean and I knew bed was the best place for me.  I could escape to my mental safe place there.  Quiet, dark, alone, and able to think about things that soothe me.

I have written before about sundowning.  This has been a continuing issue for me.  There are certain things that now upset me more than ever and when that happens, combined with the sundowning, the best place is bed.  Yes, I could stay up and express my anger and frustration.  But for what purpose?  I will only anger my wife/care giver.  And that is never good.  I may have LBD but I am not stupid, at least not yet!

Where and when did I learn that bed was a safe place?  When I was 12.  It was Christmas eve, a particularly tense time in my life.  All Christmas eves were tense and there was much sniping going on in the house, so, I went to bed at about 7 PM.  I did not tell my Mom or Dad, I just went to bed!  They missed me eventually, and even came up and checked on me.  But, I was asleep, safe, in my own thoughts.

My wife still does not understand that I react more to things that bother me.  For instance, money issues, or political issues.  I would be much better off if I never watch a political news show again.  As far as finances go,  it would be better for me if that topic never came up.  I have no control over finances, so why even tell me about where the money is going.  My opinion does not matter now.  So I sit in my recliner and boil slowly.  My blood pressure rises as my anger increases.  But I try very hard to hold my tongue and to keep quiet.  Expressing my anger is counterproductive.

As you can see, just writing about these topics makes my blood boil.  And I know that being angry only makes everyone around me tense, angry, and upset.  I really don't want that for anyone.  So, why won't others treat me that way?  Maybe I am just too sensitive now.  But, there is always the bedroom, my haven of darkness, quiet, and solitude.  I go there often.

I have read on the LBDA website that others  with LBD have this issue also.  I am not alone.  I only wish the people around me would do the research also.  Then they would understand my issues and all of our lives would be smoother.  Maybe I am just making water in the wind.

Monday, November 4, 2013

Traveling, or not

One of my mentors in the Navy passed away last December and their are just planning his funeral for next weekend.  There were some legal issues and the parties involved have finally decided to bury the Master Chief.  I have been in contact with his Niece and have been invited to the funeral.  But, as much as I would like to be there, I just can't make myself leave my friendly confines and travel.

There was a Ship's Reunion for the USS Caron.  A ship and crew that holds a very special place in my heart.  I did not go, even though we planned to go.  Why, because I just could not bring myself to travel 1200 miles and stay in a place I have no connection to.

Yes, we went back to Virginia Beach in September.  But that was home and I was glad to be there.  I knew my way around, had friends to be with, and visit.   I was in my home Church and always surrounded with familiar locations and people.  So, I was pretty good with that trip.

But truthfully, I wonder if I will ever go anywhere overnight again!  I really cannot describe the feelings that stop me from traveling.  In the planning stages of the USS Caron reunion, I was somewhat excited.  But as we fleshed out the plans of the travel, I became completely overwhelmed!!  Planning the trip became a total block to me going.  I feel safe in my home and the ares around it.  Hotels are OK, for a night, if I can have Marcel the wonder dog with me.  But I don not feel safe or comfortable in crowds of people I do not know.  I do not like mass travel venues like airports.   And I want to be in familiar surroundings all the time.

Then there is the cost.  I do not participate in the day to day finances of the household.  But, from what I hear, I need to be careful as to how we spend money.  That being said, she we are planning a trip, I become frightened of spending money.

I guess, all in all, I am afraid to travel much past the bridge that leads to Pensacola!   Will I travel again, I don't know.  There is little I want to do or see.  I loved being back in Virginia Beach since I miss my friends, the Church, and the area so much.  And my wife has a family reunion in Iowa next July that is very important to her.  So, those may be the only two trips we make.

Maybe it is the planning that bothers me.  If we just got up and went,  I might be better.  I am not sure and it confuses me to ponder this topic too much.  But, as this blog is about the journey, I thought I had better address this topic while I remembered.  More later.  

Friday, November 1, 2013

How others see my symptoms

I had a telephone call with my sister today.  She lives in the Cleveland area still and we do not get together as much as we would like.  She asked me about how I was doing and I am very open to tell her.  I told he about my hallucinations and she got very quiet.  I joked about the and than she relaxed. She said I had a good attitude about what was going on.  My reply was;  "I can be grumpy and a pain for everyone to be around or I can find something funny about what's happening!"

It's true, the Psychiatrist said the same thing to me the last time I saw him.  I choose not to be negatively impacted by LBD.  Seeing things that are not there IS a shock.  But as long as they are not attacking me, I can laugh at them.  But I was shocked at how she handled my symptoms.

Loved ones seem to internalize my issues and not really face them head on.  Since my Sister is a far distance away, she probably has built these symptoms up in her mind.  I probably would do the same thing if it were her that was effected.

But no one can really understand what I am experiencing.  For instance, today, I saw a piece of paper sticking out of my cell phone  which was on the table next to my chair.  I pushed at the paper and it disappeared into my cell phone.  So, I picked up my cell phone and opened to up to remove the paper.  There was no paper there!  It never was there.  So, how does someone deal with that as the observer?  I am sure it is frightening to them.  But I choose to enjoy this journeys much as I can.

Another thing I have recently discover that I lost was my "Third Party" view of LBD.  In the beginning, I could look at what was happening to me as if I was disconnected from the symptoms.  I had the feeling like I was watching this happen to someone, but not me.  Not, I know it is me!

Another new issue is that my short term memory is even worse.  Writing this post is difficult because I cannot remember what I wanted to write next!  So, I have to sit and rerun my thoughts back, read what I typed, and try to remember the next though I was going to express.  These posts do not come as smoothly as they used to.  At least I can still express myself, even if it is more difficult.

Like most diseases, LBD does not just effect the person that has the disease, it impacts everyone in the sufferers life.  I am aware of that and try to be as tough as I can and I try to defer as much worry on the part of those who love ma as I can.  I fear that soon, I will loose that ability also.