Sunday, January 22, 2012

You are my support group!

I love the comments, support, and love, that I receive from my blog support group.  I read every comment you send several times, and get reassurance, information, and emotional help, from each comment you write.  Like many of us, I don't take enough time to thank you for your efforts and care.  But I do appreciate your efforts to keep me informed and encouraged.  Unlike other blogs, this one is pretty intimate.  I have brought to you some sensitive issues in order to document my journey.  Each time I have bared my heart, you, my readers who mostly don't know me personally,  have offered your experiences, your encouragement, and your caring love.  So, I want to take this moment to thank you for your concerns and friendship.  You make my journey easier on me and my family.  Please keep your comments, experiences, and concerns coming.  And I will keep writing as long as I can.  Again, thank you!  

Wednesday, January 18, 2012

Cognitive Skills Tests, AGAIN!

Since we moved to Florida, I had to get a new Neurologist.   And, since I have a NEW Neurologist, I have to undergo a new series of Cognitive Skills tests.  The New Doctor's staff is a little COLD in their approach.  Professional, but cold, like ICE cold!  The new tests I took were completely computer based.  Past tests were done by humans and were interactive with the administrator of the tests watching my reactions, effort, and reactions.  This test administrator sat on a chair, behind me on the other side of the room.  She could not see my face or my reactions.  When I was being watched in the past, I think I tried harder.  Don't get me wrong, I tried this time too, but I still like the human interaction.

In any case, the test had the same components.  For instance, the computer gave me 15 words, and then at the end of the hour of testing, it asked me to remember the fifteen words.  I remembered three!  Then there were the 15 different shapes.  the same drill, and I think I remembered seven.  But that makes sense, I am mechanical in nature, so shapes mean more to me than words.  In any case, I will be interested to see how I did.  I will keep you posted, if I remember!

Monday, January 16, 2012

New Neurologist

Today, we had our first visit with our new Neurologist.  I say, our NEW Neurologist, because I am going to keep him!  He is attentive, engaged, and took ownership of me!  He dd not question my diagnosis like so many others do.  But, he wants to do more testing and said there is a new "Memory" drug on the market that may help more than the Namenda and Razadyne.  He also could explain the "Dark Spot" that shows up in my brain scans.  No other Doctor could do this!  I'm impressed.   I have another set of cognitive skills tests set for this week, he did blood tests today to see if my muscle pain is related to any drugs I take, and he is working on getting me a better nights sleep.  Not bad for a first visit.  By the way, he spent an hour with me!!

Maybe, the move to Florida is good for my health in the long run!

Sunday, January 15, 2012

Things we do, without knowing.

I am not a Neurologist, a Psychiatrist, of a Psychologist, so I don't have the answer for the questions that I am going to ask.  And, if you are squeamish about bodily functions, stop reading.  Of course, if you have LBD or care for someone that does, these issues are not new to you.  Additionally, I am venturing into some new territory for my blog, and for most LBD blogs that I read.  But, that's what I do, I address what I am going through.  So, here we go!

When my father in law had Alzheimer's and lived wit us, he had a habit of picking his nose.  Not the usual, discreet, necessary, nose picking that we all do, especially at stop lights!   But the incessant nose picking, for no apparent  reason that lead to him wearing a hole in the inside of his nose. This lead to extensive bleeding because he was prone to bleeding.  I thought maybe he was bored, or maybe not in control of his actions due to the Alzheimer's.  The doctors did not have an answer then.  But they knew little about the disease at that time.  But, I now pick at my face, hair, fingers, nose, incessantly!  I cannot stop.  My wife calls it to my attention and I stop for a minute, but then I am back at it.  My hands are an easy target due to the damage from the hydraulic fluid that I worked with in the Navy.  I also find sores other places on my body and assault them too.  I will pick until I bleed!  Then find another place.  I never seem to run out of places to pick and never find the ability to stop.  I partake in this practice every waking moment, no matter what I am doing!  You may say I am OCD, and maybe I am. But no one has told me that.  And I don't exhibit any other "Monk" like issues.  But one thing I know for sure, I am driving my poor wife crazy!  She will look at me and I am bleeding from two or more spots that I have picked.  She tells me to stop, but I can't.

So, I ask those of you who are my electronic support group;  Do you see this in your patient?  Let me know.  I m sure we will bring it up with the new Neurologist tomorrow.  Oh joy, another Neurologist to prove my sickness too!!!  

Saturday, January 14, 2012

Old memories that you live again.

I have said before how much I loved and respected my parents.  They took me in, and raised me, loved me, taught me how to succeed.  They raised me after their own children were grown, married, and had their own families.  Being raised by older parents, I had the benefit of learning from their experience.   My Mom had cancer, before all the wonderful treatment options that we have today.  The medical experts of the day did buy her five good years, but the radiation treatments that helped her, eventually killed her.  My Dad dearly loved his wife, my Mom, and was devastated by her illness.  Yet, he did not understand what she was experiencing at the end.  He used to say;  If she would just get up, eat a good meal, and walk around the block, she would feel better."   Of course, nothing could have been further from the truth, but that was what he wanted, Her BETTER!

This memory has helped me understand the people in my life.  They want me back the way I was.  They want me to be active, strong, involved, in my life and theirs.  But I can't be what I was.  I can only be what I am now.  Today, we took a walk.  A long, brisk walk.  In the past we would walk 5 miles, at a pace that most people would consider a jog.  We would take those types of walks everyday!  But now, my energy levels, my strength, my muscles, just can't do what I used to do.  So, sometime, my wife gets frustrated with me because I don't want to walk.  But it is not that I don't want to, it is that I can't.   But, now I understand, from what I observed in my parents, that, she wants me to be better, be what I was, and so, doing what we DID will make me the way I was!  Now I understand.  She loves me!  But I always knew that.

Thursday, January 12, 2012

Writing has become difficult.

My wife and I have discovered a local pottery shop in Gulf Breeze on Florida 98.  This shop is fantastic.  They carry some very whimsical and unique Mexican pottery that we really like decorating with.  Brightly colored lizards, frogs, suns, turtles, just about anything you can imagine.  We have used these as wall art and accent pieces.  They are different, and happy!  While we were in the shop this week, the shop owner asked me to sign her log book, including my email address so she could let me know what she was finding on her upcoming trip to Mexico.  My wife was busy perusing the shop, so I obliged her.  I did the best I could printing the required information.  The shop owner commented on how good my penmanship was and my wife looked surprised.  I had done my very best and it looked like very good third grader printing.  I know that, but it is the best I can do.

As my LBD has progressed, my hand writing has gone down hill.  My wife, who has beautiful hand writing, says my writing always looked like chicken scratch.  But now, I don't even try to write cursive.  Instead I print, slowly, deliberately, and poorly.  After just a few words, my hand begins to cramp and my printing gets really bad.  So, thank technology for computers.  Although, my typing and spelling are not much better than my printing.  Thank technology for spell check!

Alone, with others

As many of you know, we recently moved to Florida from Virginia.  We lived in Virginia for 31 years, most of them in the Tidewater area.  I was stationed there in the Navy and after I retired I worked for the Navy as a Civil Servant until I retired again.  I have a wide network of friends in the Tidewater area from the Navy, Church, and the shooting community.  I constantly ran into old acquaintances and friends when shopping or out for an evening.

Now, we are in a new area and, with the exception of my Son and his family, I know no one and I am lonely.  Yes, I love being with my Son and family.  I love interacting with the  Grandsons.  But they all have a life too, and the grandsons are teenagers.  So they have their own lives also, and that is good.  In addition, my wife has taken up crafting as a hobby.  This is something she has not done since she went to work long ago.  So, there are positives to the move.  However, I am reporting a negative effect that also exists.  Do I want to move back to Tidewater?  No.  However, I wish some of my friends would move here.  I know that is selfish, and to tell the truth, my best friends are coming to visit in March.  So, I am really looking forward to that.  I expect I will wear them out talking, touring, and eating!  So, I have a respite scheduled.  But again, I am just reporting an issue.

How do I make things better?  Well, I tried to volunteer at the USS Alabama Memorial Park, but they never replied.  And we tried to volunteer at a local hospital holding high risk, new born infants, but they have not replied either.   I have not found a Church that needs a stand in Preacher, so I will continue to look for opportunities to volunteer and get involved.  But for now, I am alone, with people.

Monday, January 9, 2012

Working out!

Yes, it's not a trick title.  My wife, for my health, has encouraged me to start walking on our treadmill.  We purchased it after we moved to Florida for her to keep in shape with.  As you know, I have had increased issues with major muscle group pain, especially in my legs.  So, since my Neurologist in Virginia wanted me to stretch and do some physical workouts,  she decided the treadmill would be good for m.

The treadmill offers me a secure place to walk.  I am actually surrounded by a grab bar and I am home, so if there is an issue, I am in a safe location.  Also, I won't use the treadmill unless she is here.  My poodle, Marcel, watched me play "Hamster on the wheel" as if to say;  You're not going anywhere!  And, where do we pee?"  Just the same, he stayed by the machine for the 22 minutes I walked.  Before I was attacked by Mr. Lewy, I was a disciplined workout nut.  I used the gym at work, before I went home, at least three times a week.  And my wife and I walked our neighborhood for hours.  I used to accuse her of taking me on the "Bataan death march" every time she wanted to walk to trim down!  Walking is also relaxing for her and I enjoy it also.  But, I am increasingly unstable and I get tired easily, so I don't go on big walks anymore.  So, the treadmill may be the answer.

I did well for my first tie, I walked 22 minutes, a little over a mile, and my legs hurt.  But, they hurt before I got on the treadmill, so, no change there.  I am sure it is good for my waistline, my heart, and probably my other issues.  In any case, it won't hurt!  Now, let's see if I can get disciplined enough to keep it up.  I am sure my wife will help!  I' glad!

Saturday, January 7, 2012

Things you don't want to tell people

Since we were small children, there were things we did not want to tell someone.  For instance, when Mom asked; "Who broke this vase?!" or, "What did you do now?!".  Of course, there is always the awkward time when your date had broccoli in her teeth.  And we want to have to tell our loved ones bad news.  There are all sorts of stories about men who lost their job, but kept going through the motions because they could not bear to tell their wife the bad news.   I have reached that point in the progress of my disease.  There are just more negative issues than good ones.

For instance, my major muscles ache most of the time from the "push and pull" muscles fighting each other.  The pain is not excruciating, but it is constant and building.   Because of this near constant pain, I don't feel like taking big walks, doing exercise, or anything else that makes the muscles work too much.  Not to mention that I have very little energy an even less desire to do much of anything.

I have a cold that my family is sharing.  That happens, but every time I get a cold I get bronchitis!   Coughing the phlem out of my chest is very difficult.  So, early in this and every cold, I use Mucenix D.  It works, sort of.  But, I really can't keep track of the doses of medicine and today, my wife determined that I may have taken a different med that is a 24 hour type.  Since we really don't know what I took, I cannot take anything!  It is going to be a tough night, without breathing!  So, now I cannot manage even my cold meds.   More loss of control for me.

Again, things are ganging up on me and it is becoming an issue.  My wife was talking in the car today about the effect of Medicare and Tricare for Life on our health care costs.  She was talking about an issue that is five years from now for me and I told her; "I really can't see five years from now."  I used to have fairly good forward thought and planning but now, tomorrow is long range planning.

Of course, I don't want to tell my family about these issues, they already have their emotional plates full.  And I know their defense point is that I will be as good as I was yesterday, forever, but you, I, and they know that is not the reality of the future. Again, I know that is hard to face.  So, I just don't say much.  Of course, when I don't want to do what they think I should, they think I am being obstinent or uncooperative.  The truth is, I just can't walk four miles, paddle a canoe against the current, or most other things that I used to do.  I am even deferring to my wife for the driving duties.  That is difficult for me since I like to drive and have always believed it is the man's job to do the majority of the family driving.   But, it is time to let her do more driving.  So, I guess I have now told everyone where I am and that is one of the purposes of this blog.  But, it is still difficult and painful for me, a macho Alpha Male, to admit I am not what I used to be, and that no amount of exercise, therapy, or medicines will restore me to my previous status.  And that is the hardest thing for me to tell them, especially my wife.  She has always treated me as her hero and now her Superman is wearing a kryptonite suit.