Tuesday, July 26, 2011

Me and the dog have locator chips!!

Today, I was enrolled in Project Lifesaver.  It is a wonderful service that the Virginia Beach Police Department offers.  I might add that many police and sheriff departments across the country offer this program.  You can Google "Project Lifesaver" and get the information for your area.  The bottom line is, it will save an individuals life if they wander away.  Why do people wander, Dementia, Alzheimer's, Down Syndrome, Autism, any number of medical condition.  How does it work?  I wear a small transmitter on my wrist that looks like a wrist watch.  It has a transmitter with it's own frequency, specific to me.  Then, if I wander, the police can use receivers in their card and in the helicopters to locate me.  How fast can they find me.  They did a demonstration a few months ago.  They hid a transmitter and then had the police look for a missing person.  It took 38 minutes to find the transmitter in the largest city in Virginia.  Not bad!!

I was visited by a police officer that, it turns out, was a retired Navy Senior Chief.  We shared some mutual acquaintances, so we had fine time reminiscing.  He fitted the device and told my wife about all the features and services available.  He was very informative and very concerned for my welfare.  The city will have someone come by our home once a month to change the battery and make sure everything is going well.  What is the cost of this peace of mind?  $108 per year and that includes batteries, wrist straps, and a testing set.  I find that very reasonable.

If you have a spouse or family member that is suffering with Dementia, I strongly recommend this service.  Hopefully you won't need it, but it will permit you to sleep more soundly at night, knowing your loved one is protected.

I felt much more secure knowing my dog was protected from loss by a "Chip" and now my wife can feel that same sense of peace.  I am glad she took the initiative to protect us.

Sunday, July 24, 2011

Not a complaint, just a report.

I don't want you to think that I am complaining, I am not.  But, as many of you know, one of the purposes of this blog is to record what I am going through.  Why, to inform my family and others, to learn from others affected by LBD, and to solicit feedback from care givers and LBD patients. 

Recently, I had my son and his family visit for two weeks.  Now, it was not the entire family for two weeks straight, but more of a depot of family travel.  Both grandsons spent a week in a Christian summer camp.  My daughter in law went to another state to search for their new home, and my son traveled for work for a few days.  So, the company I had was as high as four and as little as one.   Just the same, it was company. Why do I say it that way, because company disrupts my routine.  Now, that is not totally a bad thing.  Sometimes, changing my routine is good for me.  It takes me out of mu comfort zone and makes me adjust.  But, company also brings with it the feeling, for me, of being invaded!  You know, like Sherman's march to the sea!  If you don't know about that disaster, blame Yankee, liberal, public education.  In any case, as much as I like to see family and friends, 2 weeks may be too much.  Another issue with this visit is the going and coming of the visitors.  Again, I am routine driven, and the changing of the numbers of people staying in my home was difficult for me.  Trying to keep track of who is where upset me and my son noticed that.  My wife did make a calender of the people shifts and that helped.  She is the master of organization.

Just the same, I learned or confirmed some things.  One is, I withdraw into myself when I feel invaded.  This is interesting because I used to be a type "A" extrovert who drew energy from crowds.   Second, I see my bedroom as my safe zone.  Sort of a safe room from the invasion.  I would retreat into my room for naps, quiet time, or early bed when I was overwhelmed.  Third, most people still don't know how to deal with me.  My son said that he noticed a degradation in my condition, and he made adjustments in the demands he placed on me.  He realizes that I am not the man I once was.  Yet, he still lives in denial and expects me to be able to be as active as I once was.  One editorial note here;  I still feel that people don't think I am sick and they won't until I am drooling on my shirt and going to the bathroom in my pants!  I still look too normal to the outsider.  Trust me, try looking at life from inside my head!  Things are distorted from my point of view.   Another thing I noticed is that outsiders expect life in my home to equal what they have in their home.  For instance, noise, especially at night, causes me to react negatively.  My wife and I had made accommodations so that the television volume can be kept low while allowing her to hear it.  However, others in the room cannot.  Company has the unreasonable expectation that they should be able to hear the television at the same volume they can at home.  At least, that is unreasonable to me.  Noise of any kind is a problem for me!  Finally, because of my LBD, I am more routine driven than ever.  Everything MUST be in it's place, neat, clean, tidy.  Anything less agitates me.  I must be able to find things immediately or I feel out of control.  Of course, when you have company, things get moved, shifted, and rearranged.  This is a problem for this LBD patient.  One other issue that has become a problem, and it was amplified during this period.  I MUST know where my wife is at all times!  When I come back from taking the garbage out or walking the dog, if my wife is not where I can see her, I call out and locate her.  Then I go see if she is really where she said she was.  Why, she is my security.  If I know where she is, my world is right.  This may become a problem for her down the line.

As I have written before, I truly believe I am entering the middle innings of this disease.  And I know, from research and experience already, that these innings will not be near as easy as the first few.  I know that I am facing the heavy hitters on the LBD team!

Again, I am reporting and recording, NOT complaining.  So, don't be offended, just learn from the experience.  I really enjoyed the visit and I did tell my son that shorter visits may be necessary in the future.  But for now, bring on the visitors, as long as they understand my issues and quirks.    All in all, we all survived the invasion, and maybe, we learned from it. 

Tuesday, July 19, 2011

New issues, and I need your inputs.

OK, I need the experience of those of you who are care givers or patients with Lewy Body Dementia.  In the last two days, I have developed a severe cramping in the back my left leg, behind the knee.  It is scary, sharp, immediate, pain that subsided after a few minutes.  It happens standing or sitting.  There appears to be no rhyme or reason to it.  The one thing I can add is that Sunday, three days ago, I missed all of my meds.  I just got mixed up.  I was fully back on schedule on Monday.  Anyone who has this issue, please let me know.  I am interested if it is associated with the Parkinson's side of LBD or another issue.  Pains don't usually scare me but this one, coupled with the LBD progression has me worried.

On a separate note, I have told you that my symptoms seem to be increasing in severity.  This pain has me thinking that the next chapter of LBD may not be as easy as the first.  In any case, you inputs would be appreciated.

Friday, July 15, 2011

A roller coaster ride.

I was sitting here in my computer room, looking over past posts.  Why, because I don't remember what I wrote for the most part.  Sad but true.  In any case, as I looked over my postings I realized that the last 6 months have been a roller coaster ride of symptoms, problems, and doctors.  There have been good days and some not so good.  My symptoms have been better some days and worse others.  Just like the symptoms of Lewy Body Dementia.  I say that, not to stick my finger in my neurologist's eye or any of my doubters, but as an affirmation of good research.  I can doubt my own illness and the diagnosis of numerous doctors on the days I feel good.  So it is good to know that I am not going crazy, it is LBD that is changing it's mind as ofter as a two year old.  Understanding that is the key to dealing with this disease.  I am convinced that this roller coaster ride will continue for the foreseeable future and that the big hills are yet to come.  But, understanding what I have and how it acts is the best defense for me.  If I know what I face, I can understand my issues, and not be frightened.  That is why I pushed for an exact diagnosis and that is why I can deal with this in such a positive manner. 

Thanks to all of you who support me in the many ways that you do. 

Thursday, July 14, 2011

Social filters no longer work!

Over the last few days I have learned and demonstrated that my social filters no longer work like they used too.  I looked at the Lewy Body Dementia Association web sight and it is a documented symptom.  I know my Neurologist will say; I was expecting this!  She said the same thing when I acted out a dream in my sleep and punched my wife in the head!  The fact is, parts of my brain are malfunctioning due to the effects of this disease.  Just like my problems with memory, my brain is showing more and more effects of Lewy Body Dementia.  While I am concerned about this, I am not upset because I know it is a normal part of LBD.  However, people that I interact with don't understand this fact.  I have thought that maybe, I should buy a T-shirt that says; The person wearing this shirt has Dementia!  Or, the person wearing this shirt is subject to loud, emotional outbursts for no apparent reason!   I can't wait to see the look on someones face when they see that T-shirt on me.

I am not making excuses for my actions, but I am asking for understanding.  Loosing my temper is wrong, but there are mitigating circumstances.  So, I continually work on my emotional actions and pray that I will be civil, courteous, and polite to everyone I come in contact with.

Tuesday, July 12, 2011

I remember what I remember.

My Lewy Body Dementia has "Progressed" to a new lower level.  I am having more stiffness, difficulty walking, jerking in my legs, and increased memory issues.  My walking has shifted more to a shuffle unless I really get going.  I also had the recent anger issues that I discussed before.  Those issues seem to be staying with me, much to my wife's dismay.

All of the issues are beginning to weigh me down.  My LBD has ran along at a stable level for some time, but now it seems to be accelerating.  While some people are negatively impacted by these events, I am not.  I have actually felt like I was waiting for the other shoe to fall for quite some time and it has been unnerving!   I get upset, as I have written before, with people who tell me; "You are not sick!  You look normal!  I forget things too!"  They are all trying to marginalize what is wrong with me because they are uncomfortable with my disease.  I saw an article about Glen Campbell's recent statements about his Alzheimer's Disease.  His wife said keeping him singing his music helped him retain his memory.  My statement to my wife centered around his wife's selfishness.  Her desire to keep Glenn "normal".  To keep that "shoe" in the air.  Well, I will not try to talk for Mr. Campbell, but for me, I want my LBD to progress and finish!

Can you imagine living with a tooth ache that the dentist could not fix, drugs would not subdue, and you could not get away from?  Well, that's how I feel.  My legs, arms, shoulders are stiff and hurt.  I can't sleep at night.  I see, hear and feel things that are not there.  I am suspicious of people  and I am angry at things that I probably should not be.  I am even having problems writing this blog.  My attention span is so short that I have problems concentrating.  And don't let me forget that my "Social Filters" are now so broke that I say anything to anyone.   I am not the man I once was, in so many ways.

All of these changes effect ME more than anyone else because I know better than anyone else that I am different.  My mind does not work like it used too and that effects everything else.  Ten years ago, I had the ascending half of my colon removed because of a tumor.  No big deal.  The surgery was relatively uneventful and I recovered and went back to work.  Maybe not as strong as before but good.  The only real side effect was that I went to the bathroom way more than before.  But, that made sense, I had half of the storage capacity.  Now, thanks to my LBD I suffer from constipation!  Try that with a 50% smaller tank!!

So, as I said, I really want the other shoe to drop.  Let's get this show on the road.  I am ready.

Saturday, July 9, 2011

Old Navy sayings

In the Navy, it was always said; "One aw shit wipes out 100 compliments!"  Actually, the last term was at-a-boys, but I thought I would loose you with that one.  Yesterdays anger out burst is certainly the "aw shit" in my week.  I was doing fairly well.  Cruising along as it was.  I even went out alone to get a haircut at the Exchange and do a couple of errands.  That was Thursday and even though I was emotionally drained when I returned home after 3 hours away, I felt like I was going to have a few good days.  Then, the anger out burst happened and I am again questioning my position in the progression of my disease.  So is my wife.   Yes, we did one too many things yestrday, but I get tired of not accomplishing things and we had to go to the Commissary in prepare for our family's visit.  But this event has shaken me to the core.  I woke up at approximately 1AM having a fight dream and violently punching my wife's pillow.  She woke me up, probably after she retrieved her catcher's mask.

This has been a difficult pill to swallow and frankly I am choking on it.  I am going to try to go back to sleep.  However, I am not done beating myself up over my lack of self-control.

Friday, July 8, 2011

Lewy Body Dementia diagnosis issues

OK, I am calmed down now and I do have some information from today's doctor's appointment that I wanted to discuss.  As you may remember, my Neurologist sent me to a Psychiatrist to address my hallucination issues and to further solidify the LBD diagnosis.  Why she wants to keep looking at the diagnosis, time and time again, is beyond me.  If you look at any of the information on LBD, I fit the mold exactly.  But, she wanted one more input, so I went.  The Psychiatrist tried me on a drug that was of the family that caused me anger issues before.  That problem is consistent with LBD, and this time, I actually had more issues with the drug than before.
So, it  is a lead pipe cinch that I have LBD and no one can deny that.  Today's uncontrolled fit if rage is also a sign that this disease is progressing.

So, what's next?  I know why my Neurologist, who I really do like and respect, has been so reticent to diagnose.  Why, because it has a definite life expectancy.  The average is 2-7 years with the outside edge of 20 years.  I probably have had this disease for 2-3 years so we are passed the 2 year limit.  And the health of the patient is s big determination on the life expectancy.  But, this definite diagnosis is exactly what I wanted.  To know what I actually have and to know what the prognosis is gives me closure.  Some folks may not like this definite diagnosis, but I do.  Tell me what I have, how we deal with it, and how long I have.

So, now we have it.  I hope my Neurologist is happy because I am done with looking under rocks for the phantom diagnosis.  We have Lewy Body Dementia, there is a time limit, and we will deal with that.  I am in relatively good shape still, and I have a good attitude, so those factors are in my favor.  I will deal with the challenges as they happen and not borrow worries from the future.  This will take as long as it takes, and I am OK with that.  I feel at rest and confident in this diagnosis.

Overflowing ANGER!!!!!

Today was a busy day. I had a doctor's appointment, we had to go to the Drug store to print some photos to mail out, go to the post office and finally, go to the Commissary in preparation for my Son and his family's arrival.  Oh, we had to go to the Credit union also.  In any case, buy the time we got home, I was at my mental end.  That happens to me and it is part of my disease. But it still surprises me and today, it manifested itself in ways I have not seen since I was diagnosed.  Let me continue to explain.

We pulled into our peaceful apartment complex and I parked the car.  Went to the garage and retrieved the cart I use to bring the groceries up to our third floor apartment.  It is easy because there is an elevator that always works.  Well, almost.  Linda pushed the button and no elevator.  She walked to the second floor and the new people moving into a second floor apartment had the elevator blocked with furniture and boxes, and were using the elevator as a staging area for their move.  They were in no hurry to unload the elevator.  They told me it was THEIRS!  That's when the overflow of ANGER occurred.  Now normally, for many years, I have been able to control my rage and use it to my advantage.  But today, when they treated me as they did, my anger overcame my ability to control it and the old Master Chief came out in spades!!!  I spared no profanity, volume, or vibrato to tell people that the elevator was not theirs.  Then I stormed over to the complex manager's office and gave her and her staff a wire brushing the likes of which they have never seen before and likely will never see again!  If I was in uniform, people would have applauded.  But, I am retired and those sorts of outbursts are frowned upon.  Looking at this paragraph, maybe I am still a little emotional about this event.  You think!

I should have not exploded like I did and I owe a large group of people an apology.  Yes, I have already started, thank you very much!  But what startled my wife and myself is the speed at which I spun up and the level of anger I exhibited.  I was ready to fight!!  And fight to the death!  I was mad with anger and I have not been that way for 25 years or so.  I actually saw red before my vision narrowed down to the grey of combat.  That myopic, single minded, tunnel vision one gets in combat when you only have one thing on you mind.  Never had it?  Good for you, but I have and I don't like it anymore.   This was the first time I was out of control when awake.  Not a good sign.

So, what do we do about it?  Well, I have to realize I have limits in the things I can do in one day.  I have to realize that I do not have the coping mechanism to control my emotions fully anymore.  And I need to pray for the Holy Spirit's help in dealing with my disease.  I also need to listen to my wife's quiet, calm voice and calm down.

I am ashamed of myself!  This is not an acceptable way to act.  I should have discussed the situation with my new neighbor.  If that did not work, I should have discussed the situation with the complex manager.  Both conversations should have been civil and calm.  Not violent and at 1000 decibels!  Of course, I think the neighbor could have mitigated the situation by offering to help me carry my groceries up instead of telling me I was a cry baby.  And the apartment management could let the other residents know when they are authorizing moving in tenants to take control of the only public elevator in the building.    But that is my opinion.  Needless to say, I have a number of bridges to repair and I have started by asking GOD for his forgiveness.

This disease is beginning to take more and more control of me and I don't like it!

Post Script;  I have apologized to everyone concerned.  They were all very gracious and kind to me.  I did not tell them about my disease because I do not want to make excuses for my terrible, unacceptable, behavior.  I was wrong and I am still ashamed of myself.

Saturday, July 2, 2011

Memory loss progresses

I write a blog about my Navy days that I truly enjoy.  I have written many stories from my active duty and civil service days from memory.  And that has been good for me.  It has enhanced my memories and has given me pleasure.  My wife and my Neurologist both encouraged me to continue the blog as long as I could.  Well, we are reaching the end of the road. You see, I am having more and more difficulty remembering my past!  Up t now, I had very good recall of the past.  It was the short term memory that I had issues with.  No more!  Now I can't remember the past.  I remember parts of stories, but the majority of the story just is not there.  I feel like I am looking into an empty container!  I know something is supposed to be there, but I can't find it.  
Is this temporary?  I doubt it.   I think this is the next step.

I have felt diminished in my mental and physical capabilities for the last week or so and that coincides with my inability to recall the past.  So, what do I do?  Live with it.  There is no alternative.  So, if you read my Navy blog;  "The Master Chief's Lair", I may be slow in my posts.  But I will keep trying.  That's me.