Saturday, March 31, 2012

One of THOSE nights!

Last night was one of the nights that upset me.  We went to sleep fairly early after watching a movie with our youngest Grandson.  It was a wonderful evening and I did not experience any stress or upset before bed.  I went to sleep quickly, but sometime during the night I had one of those
"Combat" dreams.  I don't remember the dream but I obviously had one because I hit my wife twice in a row during the night!  I hate this part of LBD.  I feel guilty about the incident even though I did not do it on purpose.  She was not hurt, thank GOD, but I am still ashamed of my actions.  My wife understands and says she is fine and all seems fine this morning.

I just spent a long time on the telephone with an old shipmate.  He asked me how I was doing, and I said, As good as I can be!  I also said, if I have to have a disease, this is not a bad one to have.  After all, I can do most of the things I want to if I pay attention to my limitations.  So, all in all, thins are good.

This post reminds me of a comedy song Alan Sherman had out in the 1960's.  It was called; "Camp Grenada" and it was about a boy at camp writing home.  He tells how bad camp is, the food, the bugs, and then, he changes his tune when the sun comes out!  That is how my days go.  I feel terrible some times until I realize just how good I have it.  Maybe I will stay at Camp Grenada for a while longer!

Thursday, March 29, 2012

The Days GOD has planned for me.

My wife writes an exceptional blog on her own, titled; "The Days GOD has Planned for me".   It is a well written, thoughtful, insightful blog about life, our life.  Today she wrote an article about our struggles with my LBD.   It is mandatory reading as far as I am concerned.  Please try her blog also.  You won't be disappointed.

Anger, frustration, sadness

The unknown of LBD has finally worked on my mind.  Or maybe it has been working on my mind for a while and I am just now being honest with myself, but I feel overwhelmed and frustrated about what the future holds.  As you know, we moved to Florida to be close to our Son and his family.  It was a good move, and being close to family and able to interact in person, is wonderful.

However, always in the back of my mind is the thought of; What is next?   What will my mental and physical condition be in one year or two years?  No one can tell me, because no one knows.  Again, that uncertainty is very disconcerting for me and my wife.  We have always made plans, saved for the future, sacrificed now for a better future.  Now we can't even plan for next year!

Yesterday, we went to the Armed Forces Retirement Home in Gulfport Mississippi.  It is a wonderful facility that is staffed by caring professionals who really care!  Naturally, I immediately had friends because the residents are career military personnel.  The fly in the ointment is that my wife and I cannot stay there together since she was not career military.  I understand that rule and agree with it.  But it still puts us in a uncomfortable position.  We spent many years apart due to deployments, training exercises, and trips for  military business as a uniformed member of the Navy and as a GS Civilian.  We made those sacrifices knowing we would have our retirement years together.  Now LBD is threatening to rob us of those dreams.

So, today has been a time of debate, depression, and decision.  We have decided to apply for admission to the Armed Forces Retirement home for me.   It is clearly the best place for me.  Of course, we know there is at least a two year waiting period, and that is good for now.  And, there is no reason we have to accept the offer to become a resident if things change.

You probably see the indecision and frustration we feel in my writing.  We always made plans for as many things as we could.  Life insurance, long term care insurance, liability umbrella coverage, flood insurance.  But, there is no real way we can effectively plan for what we now have to deal with.  Yes, there are continuing care retirement facilities that offer a residence for both of us.  But they want hundreds of thousands of dollars in advance to secure a place.  Then a very high monthly rent that increases!  And, if I were to pass away, my wife would have to stay there or walk away form the $250,000 or more deposit.  Not an attractive prospective.

So, for the moment, we are going to stay here in Florida, and apply for residence for me in the Armed Forces Retirement Home in Gulfport Mississippi.  If they accept me, that will meet our future health care needs.  If they don't, we will need to find another arrangement.  I continue to twist in the wind.

Monday, March 26, 2012

Hypothyroidism meds, Part II

Well, after a couple of telephone calls to my neurologist and a reduction in the dose to one-half a tablet, I think we are on the right path.  I took the reduced dose for 6 days and I had no headaches.  So, today I upped the dosage to one pill.  This is where I was supposed to start.  I have also changed my dosage time to first thing in the morning instead of at night, just before bed.  I also think this is part of the beneficial effect.  My plan is, to take one tablet for a week, then increase to one and a half.  Finally getting to the two pills dosage in a couple of weeks.  This is slower than the neurologist wanted but I think I will tolerate it better.  Since I take so many meds, my body is just about at it's limit, in my opinion.  Yes, I know I  did not go to medical school, but I do know how my body reacts.

The one thing I am a bit aggravated about is the slow speed that my new neurologists office replied.  Again, I know they are busy, but when I call with one of the "Serious" contra-indications of the medicine as outlined on the sheet the Pharmacy gave us, I would expect the doctor to reply to me in an expeditious manner!!  Just my opinion.  

Monday, March 19, 2012

Hypothyroidism meds are TOUGH!

My last post discussed the fact that my new neurologist did a blood test that lead him to believe I have a thyroid gland tat is not putting out as much, what ever it puts out, as it should.  His answer was a medicine, a pill, that would solve my problem!  Sounds reasonable.  I even checked on WEBMD and they agreed.  He started me on one half the dose and I was supposed to take that for two weeks to get used to the medicine.

The first couple of days went OK, but a couple of days ago, I developed a headache.  Not the run of the mill headache, but the kind you get after drinking too much, for a week!  It is a migraine, vascular, whopper of a headache and Excedrin does not phase it.  We called the neurologist and left a message but have not received a reply.  He is probably golfing!

So, I intend to cut the dosage to half a pill and see if that helps me get rid of this air hammer in my head!  Until then, I will sit here in the quiet.

Tuesday, March 13, 2012

Hypothyroidism and LBD

I have spent the last 36 hours thinking about the results of the blood tests the new neurologist ordered.  My wife and I, along with WEBMD, can trace the hypothyroidism symptoms back 9 months.  That's important, because I can now say that while I have hypothyroidism, I still have Lewy Body Dementia!  That statement is important to me because, like so many LBD sufferers, I have been questioned and doubted too many times.  Too many doctors, acquaintances, and health professionals, have said; "You are not sick, I have those symptoms sometimes, you don't look sick, that's not a disease."  So, I am sensitive about being called a malingerer and a gold brick.

It is not out of the question for an individual in declining health to suffer from numerous issues.  If someone has congestive heart failure and Asthma, no one would blink an eye.  So why is it, that some folks would question me on my LBD diagnosis along with the hypothyroidism diagnosis?  But, because of how I have been treated, it has taken me these 36 or so hours to come to this conclusion.

Tonight is the first time I will take the prescribed medicine for my hypothyroidism.  We will see how I do on this medicine.  Hopefully, I will tolerate it well because I really would like to get this issue under control.  For the last few months, I have really felt terribly tired, weak, lethargic, and just lousy .  I would like to get back to feeling just bad!

Monday, March 12, 2012

Latest neurologists visit. Interesting!

Well, we had our second visit to the new neurologist.  After waiting for longer than I wanted to, we saw the doctor.  He went right to his briefing on all the tests he did on me.  He said I have mild sleep apnea,  I have a severe memory loss, my muscle enzymes are up, I have a vitamin D deficiency and I have hypo-thyroidism.  That came as a surprise.  But, after the appointment, we did some time line construction and we determined that I started to gain weight about 9 months ago.  I am up 30 pounds!  I also can trace my tiredness, my increased memory issues, my leg muscle pain, and the fact that I am either too cold or sweating severely, to that period.  So, this may have came on recently.

In any case, this means more pills!  But it may be a positive turn of events because I may see an improvement in my memory and the leg pains may decrease.  Also, my energy levels may increase and that would be good.  I could also loose some weight and I need that to help the mild sleep apnea.  It's all tied together it seems.

My wife is frustrated with the constant change of diagnosis and prognosis.  Each doctor has their own idea and since dementia issues cannot be definitively diagnosed, it will always be this issue of the day every time we go to the neurologist.  At least he is not telling me I don't have LBD or that I am not sick.

One other test they ran was the cognitive skills test.  He said I had no memory!  But I knew that.  I really tried on that test, but, it gave me the results that I expected.

So, tomorrow I will start a new set of pills and we shall see if he has this one right!

Sunday, March 11, 2012

A great visit!

One of the hardest parts of moving to Florida has been leaving my best friends behind.  That coupled with the complete absence of surface ship sailors to converse with leaves me without anyone to talk too.  Yes, I have folks I talk to, but they know little or nothing about the surface Navy and therefore, we have little in common.  But last Tuesday, my best friends came to visit and it was grand!  We pushed ourselves to the limit, staying up late, not taking naps, and going more places in three days than I would normally go in a week.  But it was wonderful.  They were the first visitors we have had in the new Florida home.  I enjoy visitors, they invigorate me and make me push my limits.  We talked Navy, politics, old times, and old friends.  I felt good.  It all ended too quickly but work and distance always win.  Now I am starting to plan our trip back to Virginia.

Saturday, March 3, 2012

Changes are here.

I have been on this road for a few years now.  And, much like the kids in the back seat of the car during a family car trip, I have asked way to many times; are we there yet?  Well, it appears to me that I am there, now.  I feel disconnected and distant in my mind.  I get tired easily, I am moody, grumpy, and I don't want to do anything.  But the one thing that is driving everything is the feeling of being mentally lost.  I know where I am, but I am lost within my mind,  My memories are lost or scrambled much of the time.  I have great difficulty putting sentences together.  Thank Microsoft and my wife for spell check or you could not read my thoughts.  Anything mental is becoming more of a challenge.  I loose track of what I am doing easily, can't recall facts that used to spill out of my mouth, and it is frustrating to me.

Another issue with LBD is the automatic functions of your brain get confused.  Like my blood pressure.  One time it is 110/60 the next time it is 140/100.  My new GP got really worried the last time he took my BP.  Wanted to jump into BP meds.  I told him to calm down.  Also, I am experiencing involuntary muscle movements that I cannot control in my legs and now my arms.    Right now it is just an annoyance, but it is a further degradation of my brain functions.

I guess I am just frustrated with my mental state.  I see the loss of mental function and I now know I am there, now.