Thursday, February 28, 2013

OK, I need your experience

I have noticed that every time I eat a meal, I break into the sweats.  My head beads up, sweat runs down my neck, and my entire body is hot.  It lasts for about 30 minutes and then my body temperature returns to normal.  It is annoying, not debilitating.

Have any of you or your spouses experienced this issue or a variation of it?  I have not been able to find this symptom on the Web or even on the Lewy Body Dementia Association's web site.

I wonder if this is related to my LBD or just a product of aging.  Thanks for your help.

Tuesday, February 26, 2013

Shocking revelation!

We took a nap this afternoon.  That's not new.  But, as I was going to sleep, a thought came into my mind that upset me greatly!  For the first time I realized that I no longer can live independently.  I cannot manage my prescriptions and there is one drug I cannot even administer!   That fact escaped me until now.  I have always took pride in my independence.   And I knew someday, I would loose my driving privileges and that would be difficult.  But this is a much worse blow to my psych.

I have written before about a statement my neurologist made back in Virginia Beach.  She said I had not yet dealt with the impact of my disease.  She was right then, but I thought I had finally dealt with my LBD until now.  But another lead boot has hit the floor!

We spent yesterday looking at a Continuing Care Facility that had independent living, assisted Living and Memory support capabilities.  The facility knew of my diagnosis and still wanted to have me as a resident.  That alone is rare.  Numerous facilities in the Continuing Care discipline reject people diagnosed with dementia.   But, we decided not to move to that facility and to instead, continue to live in our home.

I have often told folks that show sympathy to me about my disease that LBD is a better disease to get than some others.  Why, because I forget what bothers me.  Now, I am not so sure that is correct.

Trying to plan for the future

While I have memory issues, hallucinations, difficulties reading, finding the right word to call things, and muscle rigidity, my emotional stability is probably the problem I struggle with the most. I try to hide my emotions, especially my anger.  I see things happening in the country economically and politically that I know are wrong, and I also know that I cannot do anything about them.  That is frustrating to me.  I suppose all of your suffer from the same issues.  So, maybe I should just shut up and forget about it.

On to the topic.  We looked at a retirement community in Mobile Alabama yesterday.  It is an exceptionally nice community with every amenity you could want.  The food was wonderful and we were impressed with the apartments.   The facility has an attached Assisted Living component and a Memory Support unit.  So it was truly a age in place community.   Additionally, they did not want any up front investment.  However, the monthly cost was higher than we want to pay right now.   Just the same, I felt at ease, comfortable, and safe in the facility.  To have a staff that looks out for any eventuality of my LBD is very reassuring to me.

Now, as much as I would like that environment, it would not be good for my wife.  She is still very independent, active, and  adventurous.  The thought of everything being taken care of by someone else is frightening to her.  I understand that.  So, for the time being, we will maintain the status quo.  But, we do feel we need to look at facilities for future planning.  And, while I am on the waiting list for the Armed Forces Retirement Home, that facility only takes care of me and makes no accommodations for her.  I need to find a facility where we can continue to live together and still meet my needs as they progress.

Like I said in the beginning, my symptoms are getting worse, but I am still able to reason things through most of the time, and while I am still able, I will try to plan for the future.  But, much like my political anger trying to plan for the future for both of us causes me to have emotional confusions and angst.   I guess that is just part of the process.


Friday, February 22, 2013

Time passes too fast

I just noticed that I have not posted for a week!  I really cannot tell you where this week has gone or what I did.  I do remember that a friend of mine passed away.  He was a Brother in Christ and a Navy Shipmate.  His wife passed away a few years ago and now he has joined her.  Those events always make me think and reflect on the past.

We also continue to try to find the path to our future.  Where we will live and what that will look like.  Linda and I have an appointment to look at a retirement facility in nearby Mobile, Alabama on Monday.  It is an expedition into the unknown but we are looking forward too it.  The facility we are looking at is a continuing care facility with facilities for assisted living and memory care.

Yes, I am on the list for admission into the Armed Forces Retirement Home, and that may well be where I end up, but I must explore every possibility.  I owe that to Linda and myself.

My progress seems to be the same.  The neurologist was right, I am experiencing more of the Parkinson issues of Lewy Body Dementia.  Up until now, I have had some issues but they have been mostly manageable.  Since I have a relatively high threshold of pain.  So the muscle pains up to now had been tolerable.  But now the pain, especially in the evening, is becoming more difficult to deal with.  Because of the prescription meds I take for my memory, I cannot take aspirin, ibuprofen, or any other NSAID.  So, right now, if the Sinemet does not work or works slow, I hurt.  Also, balance issues are beginning to get more pronounced.  I really need to use my cane all the time.  But, I either forget it or my pride gets in the way of my better judgement.  I guess I will wait until I fall and hurt myself before I use my cane all the time.

Other Blogs on Lewy Body Dementia record the struggles of my fellow sufferers.  Many of them have had Parkinson issues since the beginning.  I was fortunately spared that suffering until now so I won't complain.  Honest.

One other point.  I have a Pastor friend who was recently diagnosed with Alzheimer's Disease.  He showed some of the symptoms earlier but we chalked it up to ageing.   You know the symptoms, confusion, short term memory issues, trouble reading.  He is now having difficulties and I emphasize for him and his wife.  And dementia is a difficult disease to deal with for the sufferer and the spouse.   But this friend, a life long Pastor, still fulfills all the duties that he can in His Church and family.  It hurts me to see him suffer.  And maybe, since I walk dow a similar path as him, I feel just as connected to his suffering as his family does.

So, I ask all of you to visit someone that you know who is suffering with a memory issue and just be there for them.  It really helps.  I know.



Friday, February 15, 2013

I love GOD'S creation

My last two posts were pretty angry.  That's because I was pretty angry!  But, yesterday we had our middle Grandson with us and it was wonderful.  We had dinner together, we made home made hamburgers on the grill!  My Grandson and I cooked the burgers and as I got the grill ready I noticed that a family of small Florida frogs had set up housekeeping in the covered compartment under my grill where the gas bottle sets.  As I opened the door, two small frogs jumped out and then quickly jumped back in!  It was wonderful to see.  GOD makes a way for His creation to survive and excel.  Here it is February and I am watching frogs.  Now, I will be honest, in June, the frogs are so loud at night you can't sleep, even with the AC on!  But still, seeing the frogs, the dogwoods blooming, the sun, the frequent rain storms, all tell me that GOD is in charge!

That one thought will keep me going.

Wednesday, February 13, 2013

At what point in time do I get to hit back?!

This is a continuation of my last posting because I am steaming right now.   Many people have questioned my illness.  I guess if I was drooling on my shirt and peeing in my pants, they might begin to believe in my diagnosis.  By the way, I do both of these sometimes!  But I take these unfounded criticisms quietly. but no more!

I have decided that being nice to doctors, strangers, and people in general, is not worth the frustration I experience.  So, either keep your mouth shut about my disease or be prepared for a class "A" ass chewing from this old retired Master Chief Gunner's Mate!   I am fed up with uninformed peoples attitudes and comments about how I look or what they think isn't wrong with me.

These people should be happy I don't comment on what I think is wrong with them.  For instance, old women, who look old, sagging, and fat, with their died hair and fancy make up and nails.  Oh, and their pedicures on those fat, smelly, feet.  How self centered.  It is like putting lipstick on a pig!  You are old, lady!  You look like a clown!  Or men, old men, with long lair!  Grow up and get a haircut old man!  Or young people who all look alike and talk alike in a attempt to show their individuality.  Really?!  Do something original, like clean your too, help your parents, and get good grades!

I am sick of people, sick of their attitudes and judgements without facts, and sick of putting up with your bullshit.  Leave me alone and I will do the same.  Step on my toes and I will break your nose!

Enough said.

You're not sick, you look normal!

We moved to Florida 16 months ago and getting accustomed to this area has been a problem for me.  We have a Church we attend and I really don't feel comfortable there.  I have problems relating to strangers and I feel overwhelmed every week in Church.  But my wife is enjoying meeting some of the ladies so it is good.

I used to be an extravert!  An extreme extravert!!  Now, I am much more reclusive and introverted.  I joined the Gideon's and tried to break into that group, but I don't fit.  I tried to volunteer at the USS Alabama Memorial, but it is too far away for me to go alone and they won't let me work on weekends.  Also, I was physically exhausted after a few hours of accessing the turrets.  So that is out too.

One of my big issues is that people tell my wife, I am not sick!  How the hell do they know?!  They did not know me before 16 months ago.  They did not know me when I was in my prime, when I had almost total recall of everything I read or heard!  Now, I have difficulty reading, because the words don't make sense, I don't remember what I read.  Yet, some judgmental idiot tells my wife, who knows better than I how much I have changed and gone down hill, that I am not sick with LBD!  Frankly, I am fed up with people and with people who don't know me or what Lewy Body Dementia is.

The woman that told my wife I was a fake, has a husband who has Parkinson's.  He recently had the brain implant to control his tremors and t worked well.  But she has no idea what we are going through and I am through trying to educate closed minded idiots.

So, I remain lonely, without anyone to talk Navy with or a ministry to work in.  It is my opinion that Florida, at least Northwest Florida, is filled with self centered, ignorant,  know it alls, and I don't like them.   I will just stay home and watch the Western Channel.

Saturday, February 9, 2013

Exercise

My neurologist, GP, and my wife all agree that exercise is good for me.  I also agree but I normally don't want to exercise anymore.  There was a time that exercise was an important part of my daily routine.   Back when I thought there was a chance I would be recalled to active duty.  Now, I know there is no hope of that.   Just the same, exercise has been reinserted into my routine.

My wife loves to walk and walking is her preferred exercise.  She has enlisted me into her fitness brigade and I must admit I love it.  We have established a 3.5 mile course, through neighborhoods that are close to us.  Our goal is to complete this course in one hour!

Since I have been having pain issues with my legs related to my LBD I wondered what effect walking for 3.5 miles would have.  Well, I can report there is no impact on my leg muscles, positive or negative.   I do notice that I feel better in general.  I have more energy and I seem to be sleeping better.  So, walking is good.

There is an even better impact of walking with your wife.  Together time!  We talk about everything with nothing to interrupt us.  No phone, no telephone, no one knocking at the door, no email, nothing but us.  So walking has many positive results that I am glad to experience.

Wednesday, February 6, 2013

The Veteran's Administration has abandoned me!

I have received the final decision from the Veteran's Administration telling me they are denying my claim that my Lewy Body Dementia, (formally called Parkinson's with dementia) was not caused by my contact with the chemicals in the hydraulic fluid used in gun mounts and missile launchers through out my 20+ year Navy career.  Not to mention that the VA agrees that the chemical in Mil-F-17111 is carcinogenic and neurotoxic and that I was exposed to this chemical.  Seems wrong doesn't it.

So, you might say, contact your Congressman.  Good idea and I did.  When we lived in Virginia, I contacted and provided Congressman Ridgell's staff all the information they required to help with my claim.  To their credit, they tried and failed.  When I moved to Florida, I contacted Congressman Miller's staff.  I provided them the information they asked for and they treated me with disdain and did nothing for me.  So, I can pretty much say that my Congressman is not interested in helping me.

If I were an illegal alien, a welfare mother with a passel of illegitimate kids, a union member, or some other miscreant that did nothing to serve this country, I would have a free smart phone, free food, paid for housing, free medical, and a free pass when  mess up.  But, I am one of the many who worked for what I have, donated to those who needed help, served in the Military when we were making less than $120 per month, and lived within my means!   I am injured, terminally, by my service to the country, and I a thrown aside because some bureaucrat in the VA does not think my disease was caused by a chemical they have agreed causes my disease!

So, you can see where I might be just a little upset.  And I am!

And yes, I could get an attorney and take them to court.  But I cannot afford that!  I have financial responsibilities to my family and my wife after I succumb to my disease.

So, I have decided to never mention this topic again.  I have put the VA behind me just as they have cast me aside.  I have other things to do at this moment.

Another memory development

We were out early this morning running errands and keeping an appointment with our CPA.  When we returned my wife was in the backyard cleaning up after our poodle.  I was piddling around and I settled on the back steps watching her do her pick up.  A question popped into my mind; "Who's house is this?"  Now I had the answer quickly, but for that brief moment, I really did not know where we were or who owned the house I was standing in, or in this case, on the back steps of.

Now, it was a brief moment of confusion, but it was there and it is happening, in different venues, more and more.  Like at night when we go to bed and in our extremely dark bedroom, I cannot remember where the bathroom is or the exit door.  That issues seems to last longer and one night I almost woke my wife up to get the answer.  But again, it passed and I was able to figure it out.

I know my neurologist told us he believed the Parkinson's part of my LBD would really start to effect me in the near future.  And he is right.  My stiffness and balance are both getting worse.  But I see my mental function going down hill at a rate faster than I thought.  But, that is the interesting part of this disease, it is unpredictable!  I have been on a fairly even keel for the last year or so but now I see evidence of a period of marked decline.

Since this blog is meant to be a journal of my disease and how I am dealing with it and a means of keeping anyone interested in LBD informed, I continue to write about what is happening and how I handle it.  I must admit, the recent changes have been a hit to my normally positive approach to life. But, I will hang in there.  More later.

Friday, February 1, 2013

Things I will not tell

There are things that happen in my mind and in my life, that are different, shocking, even frightening, that I work through, deal with, and dismiss.  That means I don't tell my wife or anyone else.  Why, because I am afraid to reveal the progress of my disease and maybe because I hope the event is just a one time event.   It's true.  The first time something happens, it is interesting and it may be an anomaly.  If it happens a second time and a third time, it is probably, most likely, a new indicator my LBD is progressing.

For instance, when we turn off the lights to go to bed, our room is dark.  Pitch black dark!  And that darkness disorients me in various ways.  I run through a checklist at this time every night.  Where is the door to the bathroom, where is the exit door, where am I?  Lately, I have had some difficulty answering these questions!  It is a new problem and I have discussed it with my wife.

Management of our email is another issue.  I normally read the email and let my wife know if she has any action items.  A few days ago, I lost control of this process.  Seems hard to understand but I was afraid to tell he about some emails she had action due on.  It came to a head and I confessed my fright.   It was difficult to do and I was somewhat embarrassed, but, it was good to get out in the open.  But it was good.

Why is there reticence to bring these things out in the open?  I believe it is difficult for me to admit that I am having difficulties dealing with my disease.  A new neurologist in the practice back in Virginia Beach told me I had not yet dealt with my disease.  I now admit that she is right!   But I am trying.