Tuesday, December 31, 2013

The stress of the Holidays is over

I am very happy that this is the end of the year and tomorrow marks the end of the Holidays.  Don't get me wrong, I enjoyed Christmas.  Family, friends, good food, and decorations.  Yet, from my youth, Christmas has never been a happy time for me.  I get depressed, feel disconnected,  feel unwanted, and anxious.  I have bad memories about Christmas past from my youth.   Yet, Christmas is when I officially proposed to my wife.  I met her on a blind date on Thanksgiving Day and we got engaged on Christmas.   She is my other half.  She completed me, helped me to grow, and taught me to really love and enjoy life.  So, Christmas has some good memories.

Just the same, the Christmas holidays stress me.  There is so much to do and it is all so temporary.   And New Year celebrations are just a reason to get drunk!   Which is something I quit many years ago, thank God!  So, I am very happy that this time of the year is done.

Since I have been diagnosed with LBD, I have tried to find positive things in everyday.   This is how I deal with the effects of LBD.  I can laugh at my memory failures.  Snicker at my imbalances and falls.  And even be amazed at my loss of muscle mass.  I say that my legs are "unhappy" when they hurt every evening.  And I even understand my body temperature swings and constipation issues.

But my emotions still confuse me.  While I can laugh at my issues, I still get severely depressed over things that should not effect me.  For instance, Christmas cards.  We send cards to friends and family and we do not get return cards.  I realize people are busy, mail gets lost, and things happen.  Yet, we make an effort to contact people that are important to us and they act like they don't care.  Silly, I know, but it is how my mind works.

One of the most cherished things in my life are friends.  I have everything I need.  If I find something I want, I buy it.   But friends, true, loyal, friends cannot be bought.  They are a gift from God!  

LBD is a disease with a blessing.  Dementia makes your short term memory fail.  Later in the disease, long term memory fails.  In the middle of the disease, your autonomic functions begin to fail.  The loss of short term memory is a blessing in that the things the depress me, upset me, and disappoint me, I forget, quickly.  While I am depressed today, I will forget why, tomorrow.

There I go again, finding positives among the problems.

Wednesday, December 18, 2013

This Blog is s lifeline for me!

Being able to write about my journey is a lifeline for me.  There are stresses, fears, and frustrations, that I can express in writing but not openly in discussion.  It is like I am writing to a very close friend!  That may be weird to some of you, but it is therapy for me.   It is also a connection to a support group.  Many times, you reply wit encouragement, suggestions, or even criticism.  Each reply is welcomed and cherished.  It is like family or close friends trying to help!

I have been blessed with the ability to express what is going on as I go down the LBD road.  Many LBD patients cannot do that, and I am sorry for them.  Maybe they need encouraged or enabled to blog.  That is what my wife did for me.  I would have never ventured on this journey without her enabling me.  Now, I write all the time.

I have also made some friends and compatriots in the LBD community through blogging.  That is a big benefit of being open about this disease.

So, I thank each one of you and I pray that you are all doing as well as you can.  You will always be in my thoughts and prayers.


Tuesday, December 17, 2013

A diagnosis of Lewy Body Dementia

Lewy Body Dementia is the second most prevalent form of Dementia following Alzheimer's.  Yet few Doctors know much about it and the public is all but ignorant of the disease.  I have an acquaintance at the local recreation center that had been diagnosed with Parkinson's.  He does have some of the Parkinson's symptoms, but not the shaking.  But his short term memory os nonexistent.  I just heard that he finally has a confirmed diagnosis of LBD.  I am happy the neurologist finally came to a decision.

In this gentleman's case, the neurologist has not prescribed the most effective Alzheimer's drugs and therefore, he has not experienced the benefits that I have.  Maybe now, he will start taking Arecept and Namenda and I hope they at least slow his mental decline.

Getting an accurate diagnosis is required to receive the correct medicines.  But it is even more important than that.  With an accurate diagnosis, you are first in line for new medicines that are compounded to help your specific condition.  Treating someone with LBD with the standard Parkinson's drugs is useless.  For instance, Sinemet does not work for the rigidity and instability caused by LBD.  Yet, neurologists constantly give those drugs to us!  I am lucky that my neurologist here in Florida realized that.  Now, my stomach is not upset all the time!  But I spent a long time with the dry heaves from Sinemet!

I have been blessed in my LBD journey because I had neurologists in Virginia and here in Florida that actually understood LBD.  But I have also had a couple of neurologists that found not even spell Lewy Body Dementia!!  It is terribly frustrating to have something wrong that your Doctor can not understand, well enough diagnose.  Again, I am glad this gentleman has finally received a definitive diagnosis.  But LBD is a difficult diseases because of it's ups and downs.  One day you feel pretty good and the next day, you are worse than you ever have been.  At least, with an accurate diagnosis, we can get the best treatment for our disease.


Sunday, December 15, 2013

Indecision, confusion, and doubt, about the future

I have a lot of confusion and indecision about our future living plans.   I have written before about us being on the waiting list to move into a Continuing Care Retirement Community (CCRC) here in Pensacola.  It is a great facility with a wonderful reputation and track record.  Their financial balance sheet is healthy.  Just the same, there is a significant initial outlay and there is a stout monthly fee.  That is the price of future security.  There are facilities that do not require an up front fee, but they do not offer any future care guarantees.  You are at the mercy of the fees at the time you need the care.  In a CCRC, your monthly outlay does not go up when one or both of you require assisted living or professional care.  That is what you are purchasing with your initial outlay and your high monthly payments.   Sort of like the old FRAM oil filter commercial; "You can pay me now, or you can pay me later!"

However, I am becoming reticent to move at all.  I am becoming very secure in my surroundings and the idea of moving frightens me!   When we discuss the move and the size of our Apartment, I become quiet and frightened.  And this was always my idea!  But now, any change unnerves me.

We worked very hard all of our married life.  We saved very diligently, both worked most of the time, and did not live too far above our means.  We could have saved more I suppose, but we wanted to have some fun along the way too, and we did.   The initial outlay will take about one-third of our savings.  That idea frightens me too.  However, staying in our home has known and unknown expenses that can deplete savings quickly.  So, I realize there is no perfect living situation.

I like the idea of renting, because I do not have the responsibility of any maintenance.   And in the Panhandle of Florida, both is permanent thanks to Hurricanes!   So the home you love may not be there next year!  And the CCRC we are on the waiting list for is on high ground and made of cement. It has withstood a Cat 4 Hurricane and survived with little damage.  So, it is a good candidate for storm survival.

What really bothers me is moving, change, costs, initial outlay, and did I say change?!   I also question the need to make this move.  I am doing pretty good right now, I think.  Maybe I am too close to make a correct estimation of where I am.   But the neurologist is useless.  My psychiatrist want me is Assisted Living right now!   And I know I don't need that level of care.  Do I?!

I have had problems making decisions for quite a while.  I just can't settle on any decision!   My wife is very good at looking at the pros and cons of any decision.  Through our marriage, I have made good decisions and some bad ones.  My weaknesses have been cars and houses.  We have owned seven houses and a mobile home.  Most of them I made money on.  All of them were good for the time we were in them.  But now, moving out of the, most probably, the last home we will own is a decision I cannot make.

So, the best thing I can to is trust my wife's decision making and try to not come apart mentally as we get closer to our next, and final, move.  While I feel somewhat better as I described in my last post, I also know that mentally I am not able to deal wit changes is my routine or living conditions.  I hope that once we are settled the new place will be my place of security.  Right now, I am up in the air.  

Thursday, December 12, 2013

I am feeling better! What next?

The fact is that LBD is s roller coaster ride or feeling good and bad.  Symptoms get better and even seem to disappear and then, BAM!  You are much worse than you have ever been.  So I am very reticent to say that I feel much better.   I have been down this road before and I know what's coming.  Just the same, it feels great to be on the upswing.

I was discussing this with my Wife as we drove home from our weekly Bible study at the local Assisted Living Facility.  There have been a couple of changes in my life.  First, at the direction of my GP, I have lost over 50 pounds!  I now wear 36 inch waist trousers.  I was tight in 40's!  I actually tried on 35 in Wranglers and they fit great.  But I bought 36's because Jeans shrink!

Another change is the addition of a new miniature poodle in our home.  She is almost 13 years old and her parents died recently.  Their children did not want her and the caregiver is a friend of our Daughter in Law.  We met her and immediately adopted her.  She has fit into our family.  Marcel the Wonder Dog loves having a sister.  They seem to be buddies already.  She has been to the Vet and received a remarkable report.  While she needs some dental work, she is very healthy!  We have both fallen in love with her and all four of us are settling in well.

These two changes may be the reason for my recent upswing, or not.  It is hard to tell.  My energy levels are up a bit.  My strength is still not there, and my short term memory is poor, but I feel better.  I feel like the gloom has lifted!  It is amazing!

It may also be the happiness of the Christmas season!  Our home is decorated and family plans are all made.  My Wife is planning to make her specialty pies and all the presents are wrapped.   The joy of the season permeates my being.  Christmas is the celebration of the beginning of God's Perfect Plan to bridge the gap between sinful mankind and Himself.  Jesus Christ stepped into the stream of humanity as a child to be Crucified, Dead, Buried, and Resurrected 33 years later , to pay the price, once and for all, to purchase us,you and me, out of the chains of the slavery of sin!  Now that is a reason to celebrate and feel great!

SO, while this may not last long, I will cherish it as long as I can.  After all, it's Christmas!!

Monday, December 9, 2013

A topic no one wants to talk about

I once quoted the Poem by Robert Frost; "Stopping by a Woods on a Snowy Evening" in an early post on this blog.  A friend that I worked with at the time, who was having his own battle with a terminal disease came to me and said; "After I read your post, I thought you were going to commit suicide!"
I told him, no.  I was fine.  Barry died last year after a long battle with cancer.  He fought for normalcy up to the end.  He worked far longer than he should have, yet work was his normalcy.  So, in retrospect, he did things right.

Suicide is something no one wants to discuss.  The neurologist I owe my long time existence too used to ask me, every visit, if I was suicidal.  I always told he no.  Once she asked me if I was suicidal and I replied, no.  She then asked me if I was homicidal, I told her; "No, I liked women!"  She laughed! And that was good because she seldom smiled, well enough laughed.  But suicide is not a laughing matter.

I cannot tell you that I have not considered suicide because I have.  If you will be honest with yourself, most of you have too.  In that difficult time,  probably as a teenager or young adult, when all seemed too bleak, you thought about it for a moment.  Then, you decided suicide made no sense, and you were correct!

If you are a true Christian.  A faithful follower of Jesus Christ, suicide is probably repulsive to you.  Why, because God gave us life!  Then, because we were sinners, he enacted His perfect plan for our salvation, the birth, life, death, torture, Crucifixion, death, burial, resurrection, and accent ion, of Jesus Christ!  Our Savior defeated death once and for all!  Since we do not have the power or the right to start life, we do not have the power or right to end our own life.  One of the Ten Commandments says;  "Thou shalt not murder."  It does not say thou shalt not kill!  There is a difference.   Murder is taking an innocent life.  Killing is what soldiers do and that is covered in the Old and New Testament were we are told to follow our leaders and they will be held accountable for the actions they order us t do.  Suicide is murder.  Self murder!

Just the same, I can understand fully, how someone, in an impossible situation, facing pain and suffering much greater that he or she can endure alone, may decide to end their life.  It is an action that I cannot judge.  "Judge not, lest you be judged."

For those of us with LBD, decisions come hard.  In my personal life, I was once very decisive.  Now, I have difficulties deciding when to go to the bathroom!  And sometimes, I get than decision wrong!  For instance, a few months ago, we decided to place our names on the waiting list for a local Continuing Care Retirement Community.  Both of us agreed, but now, I am having second thoughts.  Why,  costs, the act of moving somewhere again, what to do with all our possessions that won't fit in our new place, the thought of giving up what little independence I have, and most of all, the idea that moving there cements the fact that I will never get better.  It is the final move, the beginning of the end.  The point of no return.

So, Robert Frost's poem again has meaning to me.  While I fantasize that I have "miles to go before I sleep." reality tells me different and that depresses me.  Depression leads me to deep, dark, thoughts.  And those thoughts inevitably lead to speeding up the process.  If the endgame is death, and if I am only going to get worse, why no bypass the next downturn and just end this now?!

But then, my mind shifts focus to things I still want to do.  My wife, son, grandsons, family and friends that I love to be with.   I am not afraid of death because Jesus has already defeated death.  "In the twinkling of an eye" after I take my last breath, I will be in the presents of the Lord in Heaven.  I have no fear!  But, I don't want to have the sin of murdering myself as the first topic the Lord brings up!  So, I will stay here until God calls me home.  He has work for me to do and I will do my best to accomplish that work.

If you are suicidal, or homicidal, don't hide it.  Talk to someone, your Pastor, your doctor, you spouse, a friend, or even the suicide Hot Line!  Talk it out!  Put your emotions and feelings out there for all to see.  Don't hide your pain like I do.  Why, because your friends and family can help you bear that pain, if you permit them too.

Friday, December 6, 2013

Ups, down, and holidays

We have discussed this before, yet as I sit here ready to explode, I thought it would be therapeutic for me to discuss this again.  I have felt frail since I woke up this morning.  Unable to focus, diminished vision, weak muscles, and instability.  My memory is foggy and I feel generally diminished.  This accounts for the down portion of this posting.

We took a long walk today because it was 75 degrees out and very pleasant.  We walked at a brisk pace and completed 3.2 miles in 59 minutes.  A good pace for two folks over 62!  We enjoyed the view of our surrounding neighborhood and the nature that lives in this area of Florida.  When we returned home, I was exhausted, in a good way.  But, as we relaxed, I became frail feeling again.  Finally, I decided to take a nap.  Not a new thing.  But the urgency to take a nap was new.  So, I went to bed and slept for 3 hours.  I awoke, suddenly and in somewhat of a confused state.  I had a violent dream and actually woke myself up punching my pillow.  Not a good way to wake up.

The staccato stress of the Holidays, is difficult to deal with.  Actually, anything out of my normal routine upsets me most of the time.  OK, all of the time.  It is confusion because I enjoy the outings and Linda does a great job limiting our social schedule.  But, as I have wrote before, it is the planning of any event that stresses me more than the event itself.  The running around planning, making things, packing things, setting up schedules, drives me up the wall.  I would be much better if I was just told, an hour before the event, to shower and get dressed to go out.  When I do my studies for the Bible Study we lead at our local assisted living facility, I do that study and preparation the night before the study!  This takes away the pre-stress and also has the study fresh in my mind for the next day.  I truly enjoy the Bible study because I enjoy the people in the study.  Both the preparation and event are controlled on my timing.

It is much like meals, getting ready for meal and cleaning up after a meal is torture for me.  Now, I am better here if I do the clean up.  Why, because it is done at my pace.  I am in control and alone in the kitchen, lost in my thoughts.

So, as we rush towards Christmas, I need to find a way to decompress and relax.   I need to concentrate on the fun and fellowship of the event and not the stress of the preparation.   So, as we learn to manage this disease,  I need to be more open with my frustrations and fears.

Monday, December 2, 2013

Holiday stress

Thanksgiving is over and Christmas is 24 days away, I can feel the stress growing already!  We do our best to reduce holiday stress.  We decorated the house already, all the Christmas shopping is done, and our party planner is kept purposely empty.  We also do our best not to be out after dark, because I do not do well in the dark!

But there is still stress that comes naturally with the season.  I really do not know how to deal with that.  We try to keep our routine intact.   That helps me.  But there are stressors that lurk in the decorations!

We change many things inout home with the decorations of Christmas.   Familiar items are put away  to make room for treasured momentous.   We have some precious ornaments that are now displayed on a small wire tree.  I knocked the tree over and onto the floor the other day trying to operate a wall switch!  I broke a Lennox Cross that has been with us forever!  I felt horrible!  I apologized many times and my wife is being very understanding over this.  The accident is the result of my rigidity and loss of vision from LBD.  We both know that, but it still frustrates me and causes extreme stress for me!

I am sure there will be other issues caused by LBD.  This is the first of the year!  And the incident set a negative tone for me.   Hopefully, I will forget it soon.  That is also a benefit of LBD!  But we will be ever vigilant to reduce stress this Christmas season.