Thursday, June 30, 2011

New Drugs, old problems

I wrote earlier about my second visit to the Psychiatrist.  He is a good doctor and he listens to me.  I guess that's what shrinks do.  But, he conveys a sense of caring and I trust him. I previously had a bad reaction to a group of medications that lead my Neurologist to the Lewy Body Dementia diagnosis.  Well, that bad reaction and every other symptom listed for Lewy Body Dementia.  A blind man on a galloping horse could have diagnosed that one!!  But, just the same, the Psychiatrist wanted me to try a drug in that family to try to deal with my hallucinations.  Because I like him, I tried the drug.  But let me be clear, my hallucinations don't bother me.  I am not frightened by them, and sometimes they amuse me.  I will admit, the first person I saw startled me.  But the dog did not bark, so I figured he was not there. As long as I have the dog, I figure I am OK.  Right?!

I took the pills for 3 weeks, and the same problems happened, plus a few.  What symptoms?  Mean, argumentative, grouchy, can't sleep at night, constipation, did I mention grouchy and mean!  My wife finally took me off the pills and after a few days, I was back to normal.  Well, as normal as I get these days.  Let's just say I am manageable.

So, what did we learn from this little pharmaceutical experiment.  I have Lewy Body Dementia.  Don't give me drugs from that family unless you want a grouchy old man on your ass with a memory disorder and a bad attitude!

Monday, June 27, 2011

No more travel!!

Let me tell you a true story.  Last month, my wife and I decided to take a big car trip.  We used the computer and mapped out a route through several states, to see recently found relatives in two states and an old Navy shipmate.  I made a hotel reservation at the Holiday Inn Express, Grand Island, Nebraska using Expedia.  Then, the next day, after sleeping on the idea, we decided 3 weeks on the road would be too taxing for me, for obvious reasons.  So, we tried to cancel the reservations through Expedia.  They said NO, because it was an nonrefundable reservation!!  I called the Holiday Inn Express and they said the same thing, only in a much more disrespectful tone.  I have called Expedia three times, talked to some reasonably nice people at their call center in Manila, PI with nothing more than an "I'm sorry".  This is a $134.00 lesson in don't use Expedia.  Even my credit card company told me to suck eggs!  But wait it gets better.

We decided that we still wanted to see this one, newly discovered, 96 year old cousin, on my wife's side, in a deep southern state that floods every time someone spills  glass of water.  So, we made air reservations, but this time, I decided to go straight to through airline, Delta.  I used their site and it did tell me it was an nonrefundable ticket, so I bought the trip insurance, another $66.00 per ticket.  Then the Cousin got sick, supposedly with walking pneumonia.  She wanted us to delay our trip to August.  No problem, I have trip insurance.  Ney, Ney!  It does not cover sick cousins!!!  So, I had to pay $150 per ticket to change the reservations!!  I am betting the trip gets canceled in August so I can write off the other $1500 in airplane tickets and make it a trifecta!!

I really don't want to travel anymore.  It is just too taxing on me.  Yes, I like to go see my Son and his family, and I like to go to Cleveland and see my family there, but those are known destinations with known beds to sleep in.  But travel to strange places on airplanes, sleeping in hotels, is no longer a good idea for me.  Not to mention that there are companies out there ready to rip you off every time you give them a chance.

Do I want you to boycott Expedia and Delta, that's up to you. But I will never do business with either company again.  I explained my medical issues to both companies, was completely honest, and they took my money.  OK, they win.  But I learned a lesson.  I just wish it did not cost me $2000!!

Saturday, June 25, 2011

New issues

After my second visit to the psychiatrist, I had a new pill to take.  It is of the same family as the one I took a while ago that caused me to be so mean that I actually got is an argument with my Pastor.  That reaction was the deciding factor in my diagnosis of Lewy Body Dementia (LBD).  The Doctor said he was confident this medicine would not cause that negative effect.  Wrong!!  I am as grumpy as a rattlesnake on a hot day!!

Second issue, I cannot sleep, day or night!  My legs hurt, my back and shoulders hurt, and there is no place on the bed that I am comfortable.  When I do get to sleep, my dreams wake me up.  Last night, I woke myself up after less than an hours sleep, violently tossing and turning.  I actually flop over so hard it shakes the bed.  I truly don't know why.

My Church had it's annual yard sale today.  I usually stand by the road and flag customers in, by acting silly!  Hey, it works so you can't argue with success.  This year, I was so unstable on my feet that my wife made me quit my efforts.  She was afraid I would fall into the street!  She was probably correct.

I have also noticed my memory and my alertness have taken a turn for the worse.  So, with the increased instability, the increased muscle pain, and the decrease in alertness and memory function, it is apparent that I have taken the next step in the progression of my LBD.  I see the change and so does my wife and others around me.  I know it bothers my bride and my friends, but I am still ambivalent about it.  I just don't worry about this disease.  It will be what ever it is and I can't change that.

I will keep you informed.

Monday, June 20, 2011

Some old friends don't want me around.

One of my pleasures in life is finding old friends and shipmates.  But I have found out that Some folks don't want to be found and others don't want to be associated with someone with a terminal disease.  Trust me, it's not contagious!  I have tried to figure out the motivation behind those people who were once my friends, not wanting to rekindle our friendship.  One reason I can come up with is that I was a drunk in the old days.  I drank for pleasure and I drank until I was drunk.  Some folks may have found that a problem, but most of us did it.  I, however, have stopped being a drunk for over 12 years!  I have completely changed and I am much happier.  Another reason I can come up with is that I represent something in their past that they don't want to relive.  I would not want to cause anyone problems.  The third reason I came up with is some folks may have something to hide.  But that one is pure speculation.

I am looking for the pleasure of getting reacquainted with old friends.  Catching up on their lives, Seeing how their children grew up.  I have connected with a number of old friends and have had a good time reminiscing.  I hope others will allow me the same opportunities with them.

I will admit that I gain much more pleasures from the past than I do in the present.  My dreams, my day dreams, my ego, the things that make me smile are based in my past.  That connection will only grow deeper as my Lewy Body Dementia progresses.  I know this, and others should too.

Thursday, June 16, 2011

When to quit

My wife and I just had a short but interesting discussion that did not end with an answer, but just more thought;  When do I quit taking all of the meds that I take?  I have already stopped Sinemet, as I discussed in an earlier post.  We know, from doing research, that Namenda and Razadyne (Arecept) have a limited time that they are effective.  So, when do we quit taking medications and just let the disease take it's course?  A cancer patient certainly does not continue chemo therapy after the Oncologist has decided that the treatment will no longer help.  SO why would I take medicines, designed to help my memory when they have stopped working.  We will certainly know when they stop working because my memory will begin a precipitous drop.  I also need to tell you that I am not at that point now.  However, I also am smart enough to know that someday I will be.  Also, my Neurologist has me on some herbal remedies that she has learned help with the effectiveness of Namenda and Razadyne.  If I quit taking all of these meds, my pill box would shrink by 90%.  Not to mention my payments to the pharmacy!

And of course, there is the practical matter of, how long do I want to prolong the inevitable?  Don't everyone get all upset.  I am just looking at this in a practical manner.  To say that I am tired of taking pills would be an understatement.  They are beginning to replace food!  I take 12 pills at night!!  That has replaced my nightly snack!  After the pills I don't have enough room for my ice cream!!  How bad is that?

So, as usual, Lewy Body Dementia has left us with more questions than answers.  I guess we will just have to keep looking for guidance from GOD.

Tuesday, June 14, 2011

The past is important to me.

I write a blog about my Navy days that is very important to me and a source of therapy for me.  But tonight at a meeting at Church, I realized just how much I wanted my past to live on.  I had a wonderful career with the U.S.Navy.  The Navy took me from a juvenile delinquent to a leader of men and that transformation and the experiences I had are the sum total of me.  I was discussing some of my Navy experiences and I commented on my son's desire to know more about my past and the opposite desires of my grand sons.  But someday, when I cannot relate my experiences, they will want to know and I want those experiences there for them.  Also, I still have knowledge about leadership and Navy tradition to give back to today's sailors.  But, most of all, it makes me feel alive, valuable!

I watched my Father-in-law suffer the terrible effects of Alzheimer's.  I watched as he retreated into his Army days, a time he was very comfortable with.  I believe I am also experiencing that regression.  I am happier, more comfortable, and more engaged when I am talking about my Navy days.  My dreams are mostly about my Navy days and my thoughts through the day regress to my Navy days.

I am not complaining, just reporting something I am noticing.        I have approached my LBD with a "Trouble Shooters" perspective.  I look at changes in my progress as "Interesting".  So, this slow but noticeable change is indeed interesting to me.

Monday, June 13, 2011

Parkinson's symptoms.

I am more coherent tonight and I wanted to write about my Parkinson's symptoms.  Last night I was not mentally connected.  Maybe my computer needs a "Mentally connected" lock much like a breath test lock on a car ignition switch to prevent drunk driving. 

Some time ago, I stopped, with my wife's and my Neurologist's approval, taking Sinemet.  That drug caused me terrible nausea and the longer I took it, my ability to manage that side effect diminished until I was not taking doses just to not have the dry heaves.  The Neurologist told me the symptoms would come back and she was right.  In the evenings, my legs are painfully stiff and cramped.  I have difficulty walking and I have balance issues.  My other major muscles, arms, neck, upper back, also experience pain in the evening.  When I wake in the morning, I seem to be better.  I attribute that to relaxing in a prone position and taking the stress off of these supportive muscles.  That's my theory.

I also have noticed more shaking when I try to put tooth paste on my tooth brush, or when I attempt other fine motor skills.  Even typing and moving the mouse for the computer becomes a challenge in the evening.  Again, I attribute this to my Lewy Body Dementia.  This change in my Parkinsonian Symptoms aggravates me and I find that, for the first time, I am angry that I have this disease.   For many years, I had a wonderful ability to mentally combat medical and mental issues.  During deployments, I could think ahead to my home coming and calm my anxieties.  Now, I have lost that ability and I only see the progression of the disease.  While that is the truth and my reality, it still angers me.  Since this is a new emotion, concerning my present condition, I thought it was a good idea to record it and ask for feed back from my online support group.

Sunday, June 12, 2011

Second visit to the Psychiatrist is coming soon.

I have a follow up visit with the Psychiatrist this week.  My first visit went OK as I said before.  He was not judgemental and listened.  I guess he was trained to do that!  He thought that I was depressed and increased the dosage of my depression medicine.  I told him and all of you that I am not depressed.  The evidence of that is, the increase in meds did nothing for my mood, sleeping, desire to do things, or inner peace. Like I said, I am not depressed.  The way I feel is a product of Lewy Body Dementia.  All you have to do is go to WEBMD and look at the symptoms of LBD.  As I have said for years;  A blind man on a galloping horse could see that!  But, that's why they call in "Practicing" medicine.

On another note, I read another LBD blog, I believe the title is "Living with a thief called Lewy.  It is a great Blog from the care giver's prospective and has provided me much valuable first hand knowledge of my condition.  Unlike having a broken arm or a pending root canal, people with LBD or other dementia disorders have few sources of first hand experience to draw on.  We are blessed to have "Living with a thief called Lewy" to learn from.  Now, if I got the title wrong, GOOGLE Lewy Body Dementia blogs and "Living with a thief.  I may have the title slightly wrong, after all, my memory is not perfect.

In any case, I read in this blog that the husband, the one with LBD, stays up at night and raids the refrigerator.  Me too!  As I have said before, nights are not my friend, as you may be able to tell from the time of this writing.  I spend many lonely hours playing Freecell or Solitare on the computer, jumping at every sound, seeing things that are not there, unable to sleep.  It is good to know this is "normal" in our world.

Fear is something relatively new to me.  In my Navy career, my career field did not lend itself to fear.  Working around things that naturally blow up and kill people requires a good deal of self-confidence and self-assurance.  Now, I am frightened by shadows, dark, financial issues, and the immediate future.  I am not afraid to die.  I am afraid what will happen between now and when I die.  The unknown is frightening to me and that is another reason I stay in my safety zone.

Enough ramblings for now.  Back to Freecell.  See, there's nothing wrong with me, I know rambling when I see it.