Tuesday, April 30, 2013

Did you ever wonder why more mature folks talk about their meds?

When I was young, I always wondered why when older folks got together, the topic ALWAYS turned to their ailments, medicines, and Doctor's visits.  Now I know!   It is because their pain, they disease, their schedule of medicines, is always with them, in the forefront of their lives.

In my case, my LBD rules my life.  I am now in constant pain from the Parkinson's portion of my disease.  My short term memory is "Shot" according to my Neurologist and that is a direct quote.  Seems funny to me that someone with 8 years or more of college and 20 plus years of medical practice could not come up with a better term than "Shot"!  But the point is, I am always dealing with the effects of LBD.

When I was younger, the Navy, women, cars, beer, NASCAR, the next liberty port, were the first thoughts in my mind.  Then, I did not take 23 prescription drug pills a day.   Then I could take over the counter cold remedies, now I can't.  I used to remember when I took that over the counter cold remedy, now I can't remember when I took my medicines.  I used to remember my wife's name, now, sometimes I forget it.   Then my legs only hurt when I worked out too much, now, they hurt all the time.  Get the idea, LBD has taken over my life!

Another interesting revelation, those of us with a long term or degenerative disease want to connect with others who suffer from the same issues.  Why, good question.  It is my theory that we want to learn more about our condition from someone suffering the same issues.  Additionally, we want to learn what is next from those who are further into the journey than us.  And finally, we want to feel normal.  And since our new normal is the disease, we want to connect with fellow sufferers.   If I tell my Grandsons what I am feeling, they are concerned but not empathetic.  They have no point of reference.  Even my wife cannot fully appreciate how I feel.  Just like I have no idea ow difficult or painful child birth is.  Now you are starting to get it!

So, don't get angry wit us if we are excited to find someone taking the same meds.  And don't roll your eyes when we break out our pill charts to compare.   Lastly, remember that we are always on the lookout for someone, just like us, to commiserate with.  That connection make us feel normal.

Sunday, April 28, 2013

The ups and downs of LBD

Lewy Body Dementia is known for it's on again, off again, characteristics.  One day or one hour you feel fine.  Your mind is working well,  you are conversing with people, doing something physical, what ever is normal, and then, the next thing you know, you forget who you are talking too, forget how to read, different words come out of your mouth, and you can't control your muscles!   This is, Lewy Body Dementia.

I once was a tough guy, afraid of nothing, self assured, confident.  Now, I am different.

My wife and I lead a Bible Study at a local Retirement Community.  We have about ten seniors that love GOD's word and are eager to study His Word.  I truly enjoy this Ministry opportunity but it is taxing for me.  Last Thursday, I was reading the Bible verse we were to study when, out of the blue, I could not read!  This is not a new symptom, but it is getting more frequent.  The problem passed and I recovered.  My Wife noticed my problem and was concerned.  After the study, we discussed this latest issue and came to an agreement as to how we will deal with it in the future.  It will happen again.  The folks in the Bible study do not know of my disease and I do not want to burden them with my issues.  I am there to uplift them, not give them something to worry about.  

Even in my weakness, I am a tough guy!



A topic we avoid!

Last Friday was a very busy day.  We were out and around taking photographs of graves for "Find a Grave" an online data base for genealogists.  My wife is a volunteer photographer for "Find a Grave" as are many other people.  She enjoys this hobby and  I enjoy the time out.   It was a beautiful day out and we spent quite a bit of time out.  Before I knew it, I was over tired and way past my energy reserves.  When this happens, I get very upset and grumpy.  Anything and everything upsets me.

We returned home and I took a nap for about two hours but that did not fully recharge my energy reserve.  We ate dinner and I was sitting on the couch watching television.  About 9 PM, I announced that I was going to bed and Marcel the Wonder Dog and I headed to bed.   As I relaxed in the bed, I became very exhausted feeling and a cold rush ran through my torso.  I felt weak and somewhat out of control.  I was not frightened but I was concerned.  Yet, my heart rate was normal as was my breathing, so I did not sound the alarm. Just the same, I felt like I never felt before.

A though ran through my mind; Am I about to go home?   And that is the topic of this post.  Jesus told us we would not know the day our lives would end.  And Psalm 139 tells us; "All the days of our life are written in GOD's book before we were formed in our Mother's womb"  SO I don't spend much time worrying about the time or manner that GOD will call me home.   Just the same, I was curious, was this it?

As I learn to deal with the reality of my disease,  my Home Coming continues to come to mind.   I spent a long time that night Praying for my Wife.  She is always first on my mind.  I also prayed for my Son and his family, close friends, my Home Church Pastors and for other family members.  I spent a long time in Prayer reviewing my life.  My failures, my sins, my shortcomings.  As I have written before, cleaning your attic is a good thing and cleaning your spiritual attic is imperative!

Saturday was another busy day, but I took it slow and easy.  Today has been slow and my only outing was Church this morning.  Our Son and Family came for dinner and that was a joyous time.  Now, I am relaxing and soon I will be in bed, early again.

My plans are to enjoy each day that GOD gives me as much as I can.  But, I am not afraid of the next step for me in GOD's plan.   Lewy Body Dementia can be a frightening disease or it can be just another step in a journey already planned.   I have noticed new weaknesses in my mental and physical capabilities.  I am having more mental lapses in my ability to read.  Mental and physical exertion take their toll faster than ever.  Yet, life is still sweet and serving GOD is still good.

Monday, April 22, 2013

We are science experiments!

The late comedian, George Carlin, used to have a routine about women being used as a "Science Experiment" with the use of birth control pills.  He said; "One day you will wake up with one leg shorter than the other, and then they will say there is a problem."

I was recently prescribed Excelon patches and we used them as directed for about 8 weeks.  We stopped the use because I developed a lasting rash on the site of the applications.   We notified my Neurologist but he never returned the call.

Since then, I developed something in my scalp that my GP wanted a Dermatologist to look at.  He seemed concerned, and the Dermatologist was even more concerned.  He questioned me repeatedly about having radiation treatment!   I never have, so he was really perplexed and he took a biopsy.  He said it looked like some sort of melanoma.  I do not remember the type.

Melanoma of the scalp is the hardest to treat and the fastest growing and fastest to metastasize.   Now, I believe it will come back as nothing but a funny mole.  But if it does not, can it be caused by the Excelon patches or another powerful drug that I am taking?   The fact is, all of us who have Dementia are being used as a science experiment without our permission.

I checked for any information on line and surprise, there are a number of large studies that ended with the conclusion that the Excelon patch does not cause melanoma.  Then the question arises, why did they do such big studies?  Did the suspect something?  And, who funded the studies?   The people who made the drug perhaps?

The bottom line is, there must be some concern over the effects of Excelon patches.  And, no, we did not place the patch on my head.  But neither did the 6300 plus subjects of the study I found!   So the researcher must have had a reason to study melanoma in those who use the Excelon patch.  But then again, who cares if a few Dementia sufferers develop melanoma.  They are going to die soon anyway!   And we are very expensive to take care of in the later stages of the disease.  So, it would be more economical to have Dementia patients to die earlier that later.

I know I may sound paranoid or even conspiratorial,  but I do feel that there is a desire to dispatch those of us who are now a burden to the society.  For instance, we have a friend at Church that is 72.  Medicare has denied a skin biopsy of an area his Dermatologist is very concerned about.  This individual has has numerous skin cancer outbreaks.  But, Medicare said he was too old to receive the procedure!  So you can see where my concern comes from.

So, while I wait for the results of my recent biopsy, I wonder what other medical issues will be caused by the medicines I take.  Maybe I will wake up one morning with one leg shorter than the other!  Then I'll know!

Sunday, April 21, 2013

Keeping connected. Part Two.

Our trip to the Alabama Gulf Coast Zoo was rained out last Saturday so we doubled up this weekend.  Saturday, we attended the Average Joe's Car Show in Crestview Florida.  It was a glorious event if you are an aficionado of pre-1980 cars as I am.  Every type of car was there.  Original cars, untouched by the customizer and just as presented in the showroom many years ago. Some, very customized vehicles.  And some cars that do not look like they ever did before!

We took our middle Grandson since he is "Car Crazy" like I am.   He took plenty of photos and was asked to stop drooling on a number of cars!  So was I.  He and I especially enjoyed the "Burn Out" contest!  If you have never witnessed this massive display of horsepower and testosterone,  you need to!  The smoke from the burn outs was so intense they had a swamp boat on a trailer to blow the smoke away!  It was awesome and I enjoyed it.  I was also glad I had my trusty walker.  I was able to sit down when I wanted to or needed to.

Today, we got up bright and early and too our youngest Grandson to the Alabama Gulf Coast Zoo.  It is a privately owned zoo and has a very good collection of big cats.  They also have a very interesting offering.  For a small fee, you can sit in an enclosure with two young Lemur's!  They were very friendly and, after a period of getting accustomed to us, they crawled into our laps, on our heads, and took small treats, provided by their keeper, from our hands.  It was a very exciting and enjoyable experience.

Having grown up next to Puritas Springs Park and idolizing "Jungle Larry Tetzloff", animal encounters have always been a passion of mine.  This Zoo offers opportunities to touch and experience animals most people will never see.  It is wonderfully done and I recommend it!

These two events have left me feeling spent.  Linda and I knew those would be physically and mentally challenging for me, and it has been.  But, it is important that I stay connected and enjoy as much good tie as I can with my family.  That's why we moved to Florida and I intend to do as much as I can.  But, we both know we will have to deal with the exhaustion that these outings cause.  But boy was this a good weekend.

  

Friday, April 19, 2013

Today, I met someone with Lewy Body Dementia!

OK, to you, that may not be a big deal.  To me, it is monumental!!  I have never talked to someone, in person, who had LBD.   I met him at the Sound Side  Gulf Breeze United Methodist Church which has a wonderful community center.  I go there to play Ping Pong with a friend who as Parkinson's.  Ping Pong is fun and good exercise for us.  Most of the exercise is from chasing the ball when we miss, bending over to pick it up, and kneeling down to retrieve the ball from a corner or from under furniture!  We get a great workout!  I really work up a big sweat!

In any case, this gentleman was watching us play and we asked him if he wanted to join in.  He was reticent but we encouraged him to join in the fun and he finally did.  He moved stiffly so I knew he had some issues.  Then, his wife came up and we all began talking.  The topic of my friends and my diseases came up because of the exercise issues.  The wife was amazed that they had met another person with LBD and so was I!

We spent about 15 minutes comparing symptoms ans problems.  We even had fun discussing our hallucinations!    It was fun!  It was exciting, and it was liberating!!   For quite a while, I have felt alone, maybe even freakish, to be the only one with this disease.  Even my GP Doctor did not know about LBD!!  Now, I know another human with this disease.

OK, I can see your eyes rolling back in your head!!  But this is truly a monumental moment for me. Now, If I could just get a blood relative to talk to me!  Oh, well, I can't have everything.

Thursday, April 18, 2013

Fear!

Fear is a common emotion of an individual.    The Navy taught me to manage fear and use it as a positive motivator.  I was a Gunner's Mate, working with ordnance from rifles and pistols to "Oh my goodness" weapons!   Every time we exercised our weapons, we placed our lives in mortal danger.  Just teaching someone to shoot a rifle or a pistol places the instructor in mortal danger.   I had a Midshipman place a loaded 1911A1 pistol in my stomach.  How, his weapon malfunction ed and he raised his hand.  I approached him from behind and asked him what was wrong.  He turned around before I could grab him and with the gun in my stomach and his finger on the trigger, he said;  "This pistol won't fire."  I grabbed the slide of the pistol, took it from him, pointed it over the stern and fired the gun!!  From that day on, I grab anyone on the firing line by the shoulders when I approach them from behind before I ask any questions.

But now, I face fears that are different that ever before.  I am developing a fear of being alone.  Not in the case of loosing my wife because I just don't address that in my fears.  But alone, anywhere, but mostly at home.  I constantly have to know where my wife is in the house.  If she leaves a room, I need to know where she is going.  This must drive her crazy!  But, i feel very insecure if I am alone or think that I am alone.

I realize that I can't live alone anymore.  We figured that out a few weeks ago and my Neurologist confirmed that in our last appointment.  But alone, makes me feel very vulnerable.

This is totally contrary to my personality before being diagnosed with LBD and the recent progression of my disease.  My Military training and experience as a Gunner's Mate made me a decisive, independent, self-sufficient, individual.  Now, not so much.

So, what do we do?  I don't know right now.  My thought is that we will have to play this by ear.  My wife will have the end decision.  For now, I want to keep my independence and be able to stay home, alone, for a few hours when my wife goes out.   I will keep you posted.

Saturday, April 13, 2013

Cleaning you attic is important!

Have you cleaned your attic out lately?  Have you shredded the tax returns from 30 years ago or all the checks you ever wrote?  How about those Christmas decorations that went with your silver rotating Christmas Tree?  Or the toys from your Son and Daughter's youth that they don't want now that the are 40 years old?  Or, are you going to leave that mess to your kids and strangers to sort through.

I have written about having your legal affairs in order, but there are house cleaning issues each of us must take care of before we go home.  Leaving this to others is simply wrong.  Our survivors will be upset enough having to deal with our loss and the funeral arraignments.

So, we have started culling old files, tax returns, memorabilia, clothes, and anything else we have not used recently.  Now, we have moved a fair number of times, so we have done this exercise recently, yet my Wife keeps bring out old Day Planners from 1999 and later that She now thinks it would be safe to discard!   Honest, if you need encouragement to get this started, watch a couple issues of "Hoarding"!!  If that does not get you started, you are in need of counseling.

For instance, we have a stash of Christmas, Anniversary, and Birthday cards that we have given each other that dates back to 1973!!!  We have not looked at these cards since they were first given! But, getting rid of them is difficult.   But, we are going to try, soon.

You may be surprised just how big your house is.  And, you just might be able to get your car into the garage!  When is the last time that happened?

Cleaning, culling, and discarding can be good for you and for your living environment.  You may find something you wanted but misplaced long ago.  Maybe even money stuffed in an old Birthday Card!!




Friday, April 12, 2013

Remaining connected to life!

One of the things that my wife I have learned about LBD is that I must remain connected to life.  My natural tendency since the disease has progressed is to stay in my home, which is my cocoon, sleep, watch television, and have as little contact with people as I can.  My wife knows this is not good for me.  It can lead to faster deterioration of my mental capabilities and physical abilities.  So, she keep me going!

Not everyday, as we did when we first retired, but a couple of times a week, we go somewhere, see something, talk to new people, and experience something new.  We like Zoos so we are going to the Alabama Zoo this weekend.  There is a local car club's car show next week.  We will go to a cemetery to take photos of more graves for Find A Grave, my wife's hobby next Tuesday.  See the pattern here?

Another exercise she has involved me in is leading a weekly Bible study at a local Assisted Living Facility.  I truly love being with those folks.  We are pretty much on the same mental level and the group truly enjoys the time together.  This is the most enriching time for me.

The other endeavor she has involved me in is Blogging.  This Blog, my Navy Blog, and a Christian Blog keep me connected to my memories.  I also belong to some Navy groups on Facebook.  This is a way I can keep in touch with old shipmates and relate past experiences to members of those groups.

Staying mentally active is the best way to combat the mental decline that Dementia causes.  Yes, I have issues with memory failures, short term memory, hallucinations, even reading and speech, but we choose to concentrate on what I can do instead of what I can't.  The same with physical activity.  I am weaker than I have ever been, can't stand long, sweat profusely at the slightest exertion, and get exhausted quickly.  So, I take my rotolator when we go for long walks and use my cane for the shorter trips.  I don't drive every time we go or I drive there and she drives home.  Yes, I still drive, but I know a time will come when I can't.  But again, concentrating on what we can do is the answer.

If you have LBD or are a caregiver of someone who does, get them moving, involved, and using the mental and physical capabilities they DO have.  Use it or loose it!

Wednesday, April 10, 2013

My keeper

My loving wife is My Keeper and she is as dedicated to my well being as she is to our marriage.  I am truly a blessed man!

We had a discussion today on what I am feeling and how I believe I am progressing.  I initiated this discussion and it was very productive for both of us.  If you are a caregiver or someone diagnosed with a Dementia, it will serve both of you well to have these frank discussions.

The point of this discussion from my point was to discuss how I am dealing with the fact that I have LBD.  Seems easy, but you may remember that my Neurologist back in Virginia Beach told me that I had NOT yet dealt with my disease.  At that time I disagreed with her, but now, after dealing more with this issue, I know she was very correct.

In any case, last nights period of "Up Late" was a period of reflection for me and I wanted to let my Wife know the outcome.   You may also remember that I wrote recently that I had had my first hallucination that I thought was real.  I saw my constant companion, my Poodle, scampering out of the master bath i and under our bed.  Then I walked into the living room and saw him sitting next to my wife.  I asked how long he had been there and she said, since I left the couch!  This event came up in our discussion and she said that it was NOT the first time I saw something I thought was real.  It seems I watched a suspicious person in an optometrist office awhile back.  I even told my wife when we got in the car that I was keeping an eye on him.  She told me today, he was not there!  I was watching an empty chair.  I am really glad I did not try to pick a fight with that fellow!  She never told me about that event until today.

My wife also told me she noticed the progression of my dementia and that her goal was to keep me active and engaged in life as much as possible.  She plans outings that interest me and challenge me. For instance, we are going to a local car show next weekend.  Now this is a great sacrifice for my wife.  She is NOT a car nut.  I on the other hand, get very excited around classic cars.  She knows this and uses this event and other things that interest me, to keep me engaged and connected to life.

The point of this post is two fold.  First, as in any relationship, constant, open, truthful, unguarded, two way, communications is paramount to the success of the relationship.  We practice this now and really have over our 40+ years of marriage.  Second, I truly have an amazing wife who is dedicated to my well being.  She monitors everything about my mental and physical health and is proactive in protecting me and my dignity.  And, she knows the score, as my Dad used to say, about my disease and how it will impact my remaining days.  She has her hands full, but she never complains.  Instead, she makes sure the road we face together is as smooth as possible.

Thanks, My Love.

Tuesday, April 9, 2013

Up Late!

Here I am, the Television is off, only one light on in the living room, it is quiet, the dog is asleep next to me, and my wife is off to bed and fast asleep.  I cannot sleep right now.  My body just feels out of sorts.  My legs hurt, I feel bloated, and I am uncomfortable.  I have checked every sight I watch and looked at the Facebook posts from the groups I follow.

My mind turns to old ships and old shipmates.  I remember the places we have been, the things we have done, and the accomplishments that made us special.  Gun shoots that went well and those that did not.  Ports of call, and nights at sea.  Rough weather and calm seas.  I can see their faces, hear their voices, smell the odors of the ship in my nostrils.  I feel the rocking of the ship under my feet and I am at home.  USS Mullinnix, USS Stein, USS Leftwich, USS Caron, USS Coral Sea, all a part of my past and a part of my todays.  I am much more comfortable in this place than I am in the world that I live in today.

I see something on the television that reminds me of a memory of my past and I chuckle.  Or a name pops into my mind and I can see that shipmate and remember where we were when...   Most of what I think of means nothing to those around me, but it brings great comfort to me.  You see, there was a time when I did great things, lead men into danger, and challenged my mental and physical abilities to their limits!   There was a time when my energy was limitless, my strength, epic, and my endurance unending.  There were days that went on for 48 and 72 hours.  Meals eaten on the run, and dangers faced that now seem superhuman to those who never saw what we actually did.  I could do almost anything and did.  Now nothing works as it did.  My mind or my body.

There was a time, before my memory failed and my body weakened, that I was a part of something bigger than me.  An organization that stood for Duty, Honor, Commitment.  I served a purpose.

Now, changing the gas bottle on my grill tires me out and I cannot remember the password for my accounts.  Then, I remembered the electronic and hydraulic prints for the most advanced Naval Gun of it's time.  Now, I only remember what I was and lament at what I have become.

If you would have told me, 20 years ago,  that I would be in this physical and mental state, I would have told you I would rather be dead.  Now, I cling to life, to my memories,  to what I was, knowing that time is precious and short.

Doctors, pills, tests, diagnosis, all lead to one place.  I am a science experiment now.  Something for the medical community to try their theories on.  I can see their minds work as they think, what pill can we try now?  They know none of them really work, but they enjoy the challenge of testing their theories on me.

The Doctors remind me of myself when I was trying to diagnose why the Gun quit firing.  The only difference is, I was in danger of blowing up the entire ship and killing countless men.  The Doctors are only in danger of killing me and they know I will no longer blow up.  It seems that I am inert!

Oh well, I still have my memories to cherish.