Saturday, July 20, 2019

I threw three pots today!

Yes, that is correct.  I threw three pot today!  A few months ago we went on an organized trip to a museum with the promise of making some "Pinch Pots".  The pot making was fin and I saw some wheels in the facility for "Throwing" pots and I told Linda I would like to do that.  She found a wonderful organization here in Pensacola called "First City Art Center" that offers instruction in many forms of art.  Glass Blowing, Pot Throwing, other pottery forms, to name a few.  She signed me up for a two hour introductory course court that met today.  There could have been three students.  But, I was the only one, so I had one on one instruction from a wonderful instructor named Pearl.  She was a delight!  She not only was an accomplished artist but she was a very patient teacher!  She went step by step, corrected my numerous mistakes and even bailed me out of some serious issues with "Centering"!

I had a wonderful time and I managed to make three different pots.  Two bowls and a flower pot.  Pearl will glaze them, and fire them and then call us when they are complete!  What a great experience!!

How did I do.  Pretty well!  I am very tired right now and I know bed is not far off.  But for almost three hours, I was able to pay attention, perform her instructions to a fairly good level and make a product I am proud of.  But, I am mentally and physically beat!  I did not eat dinner because I did not want to be with anyone.  I need to be alone, in the quiet of the "Cabin".   It was good to do something I have never done before.

Monday, July 15, 2019

Outings are getting more difficult

I have written about this topic before and recently, but it is getting more and more difficult for me to leave the confines of Azalea Trace.   Just getting in the car and going on the roads causes me agitation.  People just can't drive!!  They text, talk, eat, do anything but pay attention to the road around them.  And, if there is a stop light, forget it!  They zone out.  Then there is the destination.  A doctor's office, any type, is painful at best.  People talking, all around me.  Mostly stupid people.  You would not believe the conversations I hear!  Ignorant people trying to make sense of simple things!  I am surprised they are potty trained!!  Maybe they aren't!!!

I am not trying to be humorous here.  These are my REAL thoughts!  And those thoughts cause me to get angry, frustrated, and very anxious.    I once was an extrovert.  I was energized by crowds of people. Now, I want to be alone, with just a few people I know, like and trust, if anyone.  Again, the NUEDEXTA helps me control the anger.  But it does not reduce it.  So, I am left frustrated and agitated. That makes me tired, and running for the "Cabin".

The bottom line is, my experience with LBD is moving into a more difficult phase.  Even Zeus, our 4 year old Chihuahua knows it.  He clings to me when we are together and now demands to spend nights with me in the "Cabin".  He knows something other deny.

Thank goodness my Wife understands this.  But, she is the only one.

Today, Linda had an eye exam.  I waited in the very busy waiting room.  There had to be 25 people in there.  Most of them dumber than rocks!   All talking loud about things they had no knowledge of.  They could not even pronounce words right.  A woman was trying to tell a fellow her granddaughter was in Suffolk, Virginia.  At least that is what I got out of her statements.  He did not understand her and she said Suffolk like it was a soap brand.  So, I moved seats, to deal with a woman with a young girl doing splits on the carpet and making a vied of it with her description of what she was doing, on a smart phone.  Trust me, the phone was way smarter that her, or the adult!  In anywise, I sat there for an hour!  When my Wife was done, all I could say was; Take me home!

I am all for intelligence tests for voting!!

Tuesday, July 2, 2019

The Weighted Blanket WORKS! And other issues

Yes, it appears to work.  I have had two very good naps and one night's very deep, restful, sleep.   I do not toss and turn as much as I did before the weighted blanket, so I sleep deeper.  As a matter of fact, I did not get up once last night, that I remember.  Now, this is only the second night of sleeping with my new weighted blanket so we will see if the success continues.  but so far, so good.

Tonight, when we went out for our nightly walk, around 7PM, we ran into large groups of people coming back from the dinning room.  They were loudly talking and having a good time.  The group had visitors and they were touring the facilities.  They walked slowly, blocking the hallways and not paying attention to anything or anyone around them.

Now that I have set the scene, picture me and my Wife, trying to walk for exercise!   We diverted to another direction but ran into more revelers.  We made more u-turns and still ran into congestion.  We finally moved to eh second floor and the crowds thinned out.  But by then, I was agitated.

It is not that those people were doing anything wrong.  They were having a good time with their family and friends.  The issues is how LBD impacted me when there is noise, groups of people, and disturbances to my routine.  It is ME that has to make adjustments not the others.  I realize that now, that I am calmed down, sitting in "The Cabin".

I told Linda I needed to spend more time in "The Cabin" and less time exposed to people.  She is beginning to understand that.  I realize she wants me to be as "Normal" as possible.  Do things we always did, go places, see things.  But more and more, that is becoming a bridge too far.

I was not agitated enough to get violent tonight.  Just agitated enough to be bad company.

More and more, I realize LBD is winning.   And I feel so alone in this battle.  My wife does her best.  But there is no support group for LBD caregivers near us, nor is there a support group for LBD patients.   There is no support groups for Dementia patients or caregivers in our area either.  We have the support group we started here at Azalea Trace, but I am the facilitator of the group, so I get very little help from the group.  As a matter of fact, I am exhausted when the group is done.  We have no staff involvement, even though it was promised a long time ago.  Covenant Care stop supporting us over a year ago.  So, we are on our own.   Maybe that is why I feel so alone in my journey.

Monday, July 1, 2019

Weighted Blankets?!

I was watching TV with my Wife and a commercial for "Thunder Shirts" for dogs came on.  I blurted out; "Someone needs to invent a product like that for Dementia patients!"  My beautiful, intelligent wife said;  "Look it up on the Internet!"  I did and it lead me to a night of research.

I had heard of weighted blankets before but I dismissed it as junk science.  A gimmick!!  Boy am I wrong.  I discovered that it has been extensively researched and weighted blankets help many of us with anxiety, blood pressure, agitation, and calming down to go to sleep.   People with Dementia, Parkinson's, Restless Leg Syndrome, Autism, and Turrets Syndrome to name a few, have benefited from the weighted blanket.  Even the National Institutes for Health recommend this therapy.

Let me make one IMPORTANT note here!!!   NIH and others recommend you check with your doctor BEFORE using a Weighted Blanket!!

Much of what I read said weighted blankets and throws were good for sleep and lounging in recliners or on the couch.  There is even a formula based on the person's body weight for the amount of weight in the blanket.

I purchased one, received it very quickly,  and I took a nap under it today.  It is calming, relaxing, and after I adjusted to the weight of the blanket, very comfortable.  Tonight will be my first night of sleep with the weighted blanket, so we will see if I really sleep longer, deeper, and better.

As I have written before, there is much information about what we are experiencing on the Internet.  Some of it is JUNK.  But much of it is vetted and good for us to investigate.  Look for recognized sources and numerous endorsements from accredited medical organizations before your try anything.  And, check with your Doctor!!

Will this help me?  We will see.

Wednesday, June 19, 2019

Old Shipmates are the BEST therapy

As I have written before, my best friend Jerry has been my lifeline as long as I can remember.  We talk every week for at least an hour.  Mostly we talk Navy things.  Our Navy!  Sometimes football or other things of interest, but mostly Navy Gunner'a Mate talk.  Then there is my very good friend, Doc Wolf.  He and I were on the USS Stein together and he calls me to cheer me up and get me on track often.  He put me in contact with a now, not so young, fellow Stein shipmate, who called me today.  We were on the phone for an hour!  Steve was a young, misunderstood, Gunner's Mate when I came aboard the Stein as a GMG1  It was my second tour on Stein and things were pretty bad when I returned.  The GMG1 I was relieving was incompetent and self centered!  And the young Gunner's Mates that worked for him suffered because of it!

I quickly discovered that everyone was very wrong about Steve.  Yes, he had his own way of doing things.  But, it worked!  He did great work, on time!  He was dependable, eager to learn, and had great value to the Navy!  I realized he was someone the Navy needed to keep!  As it turned out, Steve found out he and the Navy were a good fit.  He reenlisted, went to Mk 13 Mod 4 Guided Missile Launcher school. made Chief, then later, Warrant Officer and retired from the Navy as a CWO4 after 26 years of very successful Naval service!

I had very little to do with his wonderful, successful career, except realizing how great a Sailor and Gunner's Mate he really was.  Of course, a blind man on a galloping horse should have seen that!!

I am very proud of Steve and honored he called me today.  He made me feel better than all of the drugs and therapy I endure.  It was a great day!

Saturday, June 8, 2019

I HATE nights!!

On the outside, it appears I have had a fairly successful life.  Had a good Navy Career.  Accomplished some good, even interesting things.  I do have a wonderful, beautiful, very intelligent wife.  Our son is a success in the computer industry and he has brought me much happiness and pride.  So, you would think, my mind would be filled with the good things of my life.

But nights, are evil for me.  My mind continuously runs replays of all my failures, all my mistakes, the very difficult times of my childhood, the times I made mistakes, did not do what I should have, and every other bad event in my life.   Every night, I am tortured by my short comings and failures!!  Those thoughts tell me I failed GOD and my family as well as the Navy.  Those thoughts tell me I was an unwanted mistake of my unwed Mother.  They tell me I am worthless, unwanted, and abandoned. They play over and over in my mind until I finally fall asleep after hours of tossing and turning.

Each night, real events of my past from as far back as 3 years old are played out in my mind as if they had just occurred!  They are real to me in that moment and the pain, embarrassment, guilt, and rejection, flood over me in explosive waves.

Seldom do I just go to sleep.  There are almost always mental arguments, insults, regrets, mental recriminations, and all the anxiety and depression these thoughts bring me.  I know it is the LBD torturing me.  But that does not help.  Sometimes, after a couple of hours of tossing and turning, I get up and play games on the computer to try to get my mind off of my past failures.  But as soon as I get back in bed, BANG!!, the bad thoughts attack me again, and again, and again.

This has increased in recent months and is now very difficult to combat.  I do not know what the answer is.  Maybe there is not an answer.   LBD is more than memory loss, difficulty moving, and orthostatic hypotension.  It is mental torture that comes when I am most defenseless.

This is the first time I have openly disclosed this issue, in any manner.  I hope being open helps others deal with their inner tortures, if they have them.

Friday, June 7, 2019

The impact of Lewy Body Dementia

I read an article yesterday, about a long term Miami Newscaster that committed suicide because he thought he had LBD!  He was in his mid-fifties.  His mother died of LBD and he had another relative with LBD.

Of course, you remember Robin Williams committing suicide because he also had LBD.

I know as well as anyone the personal impact of LBD.  From the time the first symptoms show up, your life is permanently, irreversibly, changed!  Everyday, something changes in your ability to remember, do things, communicate, walk, interact with people, and even be intimate with your spouse.  Soon, you have to stop working because you simply cannot do what you once did.  Driving is a thing of the past, as is the freedom to do what you want when you want.  I can't even get a haircut when I want to!

But, the most maddening thought is that things will only get worse!  And I believe it is that thought that drives people with LBD to suicide.  But, there is hope.

I still believe being in a support group, surrounded by other Dementia patients, is encouraging, and empowering.  Discussing how we overcome our issues, laughing at the things that we encounter helps me, and others, cope with this disease.

The story about the Miami Newscaster hit me hard.  I believe suicide is not an option.  I know mutual support from other Dementia survivors is.

Look, I have spent many quiet hours alone, thinking about this issue.  I believe I am tougher than LBD, as long as I depend on GOD to get me through it.  I cannot face this disease alone and GOD helps me everyday.  But HE also places people in my path that help me.  I encourage you to seek GOD first.  And then you will see all the support HE has provided.  LBD is tough, but we are tougher.