Wednesday, July 29, 2015

Hiding Dementia

Why do people hide the fact that they have Dementia?  Yes, in the early stages, only the patient may know of the diagnosis.  But, soon, the issues start to identify themselves.  Forgetfulness, not knowing where you are or where to turn when driving a familiar route, forgetting the names of people or pets that have been with you for years, agitation with yourself, and depression.

Maybe because I am well into my journey with LBD, but I can pick out someone with Dementia pretty quickly.  I see the telltale signs easily and quickly.  And, as I look back at my early stages before diagnosis, I can clearly see signs on my Dementia in things I did that were out of character and odd.  Like making a hat out of the agenda page at a Church Business Meeting and putting that hat on my head!

In any case, identifying yourself as a Dementia patient may case some employment issues but being honest allows your employer to make adjustments to your work environment, under the Americans With Disability Act, to keep you employed longer.  I know the GS 14 and GS 15 I worked for did everything to help me work as long as was practical.

I understand there may be some embarrassment or feelings of inadequacy, but, any Dementia is a disease, not a choice.  I believe dealing with LBD up front and in the open has helped me and my Wife.  Yes, it has caused some friends to withdraw.  Trust me, it is not contagious!  But, I also understand I can be hard to be around sometimes.  But I still believe honesty is the best option.

I bring this up because I play billiards with a gentleman that has some form of Dementia.  It is apparent!  Yet, he does not openly discuss his condition, so I cannot offer him the benefit of my journey.  I plan on asking him, in print, in the near future.  I believe we can both benefit from open communication.

In any case, if you see someone displaying Dementia symptoms, I recommend you treat them with respect and wait until they open up.

Tuesday, July 28, 2015

It is Orthostatic Hypotension and other issues!

We saw our GP yesterday and she agreed that it was Orthostatic Hypotension.  She cut my dosage of Cardura in half.  I have taken that for Prostate issues for a very long time.  That will cause my BP to go up, and that may be an issue when my BP goes up.  This may be an ongoing issue.

She also wants me to cut my salt intake and cut down on deserts!  Oh, and she wants me to drink more water and less coffee.  Since the only water I drink is when I take pills, that will be a challenge.  I do not like the taste of water.  Beer, Coffee, ice tea, are all OK, but water is just bland.  But, I will try.

Another issue, my short term memory is getting even worse, if that was possible.  I went to pick up dinner at the Take Out of our community today, I forgot my wife gave me a list of what she wanted! Then, when I brought the meals back, I put my salad dressing on her salad.  Everything seemed to blend together for me.  I also forgot my morning pills today!  I truly am having difficulties in conducting daily activities.  More progression.

More later;

Sunday, July 26, 2015

Blood Pressure Fluctuations

I have written before about the autonomic functions being disrupted by Lewy Body Dementia.  I am experiencing BP fluctuations that are beginning to impact my way of life.

Last week, I had a low BP reading in the 90/60 variety.  Today, at Church, I was sweating so profusely I had to continually wiper my forehead of sweat for about 30 minutes.  During this time, I was dizzy and weak.  For a few minutes, I was actually contemplating calling 911.  But, being the hard head I am, I did not.

When we came home, we stopped in the Assisted Living portion of our community and had my BP taken.  The CNA that took it was concerned and did not tell me the reading.  Then she took it again in the other arm and told me it was 148/98.  That is a wild fluctuation in less than 7 days.

It is now 1300 and I am still weak and somewhat dizzy.  I have had high BP in the past, but not for a few years.  I know what I feel and experience when I have high BP, and today's events are not close to what I experienced in Church today.

So, we will call my GP tomorrow and go see her and see what she thinks.  It is my opinion, based on my research, that this is caused by my autonomic functions being disrupted by the Lewy Bodies.

We will see what we will see.  More later.

Sunday, July 19, 2015

An open, bold, post!

I have decided to address a problem that many men with LBD experience, including me.  If you are squeamish about sexual issues, QUIT READING NOW!!

I have written about autonomic functions and how LBD impacts them.  It is known that our blood pressure is controlled by our autonomic brain functions.  I wrote a few days ago about the low blood pressure I have recently experienced.  It appears to be OH.  I may have been having this issues for a while and did not know it.

But, low blood pressure, loss of muscle strength, and low stamina also negatively impact a man's ability to perform sexually.  In my case, and in cases I have referenced on the Internet, we have difficulty maintaining an erection and difficulty in achieving orgasm.  Sometime, orgasm is impossible, even if an erection is maintained.  Believe me, this is painful!

Some of you might say;  Why would you worry about sex?  You're too old for that!  No I am not.  And my wife is certainly not too old for sexual satisfaction.  But, I am unable to meet her needs.  This now becomes an emotional issue as well as a physical issue.

Some may say, take one of their miracle pills for men!  That may not be a good idea for someone with the medical issues and drugs most LBD patients deal with.

So, how do we deal with this issue.  First, talk to your medical team.  Your GP, Neurologist, Psychologist.  Second, realize you are not the only one having this difficulty.  You are not alone!   Third, there are other alternatives that will help you meet your partners sexual needs.  They may require you opening your mind a little, but how important is your Wife's sexual satisfaction to you?

Not every LBD male patient has this issue.   Some have the exact opposite problem!  They maintain an erection all the time and want sex frequently because they forget they just had sex!  This could also cause issues!!

My point is, LBD is a journey.  There will be a few issues that will cause you to try new and uncharted methods to live with the issue.  You and your wife can choose to be miserable or choose to try to solve the problem.  So, open your mind, talk to your doctors, and live!  Your life is shorter than it was yesterday.

Friday, July 17, 2015

Orthostatic Hypotension!

OK, I could not have spelled Orthostatic Hypotension before today.  And I completely forgot the LBD issues that impact the Autonomic functions of the body.  But, a visit to a doctor's office sent an alarm to the doctor and us.

I had moderately high blood pressure a few years ago.  Recently, I have had a normal blood pressure reading that has been descending.  We thought, good!  Eating healthy is helping me.  But, yesterday's BP reading was 93/60.  The CNA started asking me questions!  Tonight, I talked to my son's Brother in Law, who is an MD.  He saturated asking me questions.  Yes, I am a little light headed, experience some dizziness getting up or laying down.  He than said;  Not good.  It looks like my autonomic dysfunctions have started to effect my BP.

So, I started doing some research and discovered a paper on the topic of Orthostatic Hypotension on the LBDA web site, dated October 2012.  That article did not paint a good image.  It seems OH is a major cause of death for LBD patients.

Now, I take Cardura for a swollen Prostate.   Cardura IS a high blood pressure medicine that was later found to reduce the effects of an enlarged prostate.  This will be part of my discussion on Monday with my GP.

For the moment, we will watch and wait.  But, Monday, my GP and I are going to have a serious discussion.  The treatment of LBD is a relatively new process.  In the beginning of my journey, I pressed to get an accurate diagnosis so I could take advantage of whatever research was being done.  I never thought I would get to this position, since I believe all of my treatment is an experiment in itself.  My Neurologist in Virginia was on the cutting edge of LBD research and she is the reason, and of course, God's provisions, I have had as long a period of slow progression of my LBD as I have.  But, as I have said before, the speed has increased and new symptoms and issues seem to be popping up weekly!

But this one, seems to be major!  OH coupled with my irregular heartbeat may be an even bigger challenge.  We will see.

As always, I will report all symptoms, effects, treatments and emotions related to this new major byproduct to LBD.  This is just another challenge we need to find a way to deal with.

I will keep you informed.

Sunday, July 12, 2015

Nights are NOT my friend!

You can see from last night's post that I was NOT having a good night.  And you must realize I have met some very nice, courteous, intelligent, people, in the Pensacola area.  I am blessed to live in Azalea Trace and I have made some new friends here.  So, it is not as bleak as I felt it was last night.

Just the same, almost every night, I am overcome by this "Sun Downing" gloom that almost debilitates me.  I have not been able to find a way to positively deal with this problem.  Yes, I pray about these issues.  God has been very gracious to me in my journey with LBD.  I guess I need to be even more dependent on His Grace as this progresses.  However, it is difficult when you are overwhelmed with negative feelings and depression.

Also, I would bet I am not the only Dementia patient with these issues and struggles.  That does not justify my issues but it does explain them.

So, the struggle continues.

Saturday, July 11, 2015

I just do not know what to do!

Anywhere you live, their will be frustrations.  No place will be 100% to any person's likings.  Living where we do, is a wonderful situation, for the most part.   I am getting involved with volunteer activities in our community and in turn getting to know many of the residents.  I play billiards two night a week, fill in for the Staff Chaplin when he needs a replacement, and I am having fun.

There are a couple of issues I wish I could solve.  But I can't!  I hear about these issues almost daily!  Why, I don't know.  But I do.

This frustration makes me feel unsatisfied and frustrated.   They also make me question my decision to live here.  I sometimes think I would have been better waiting for a spot at he Armed Forces Retirement Home in Gulfport, Mississippi.  And, I am still on that waiting list.

This frustration and constant bereavement over issues I cannot control make my life even more difficult.  And believe me, anger is not my friend!!  I try very, very hard NOT to loose my temper.  It would not lead to a good outcome.

I have told you before I really do not enjoy living in East Lower Alabama.  The people her are ignorant, rude, and very self centered, for the most part.  I truly can tell you I have not met a nice, open, friendly, native of this lost world of morons since we moved her, almost four years ago!   It might be me and the effects of LBD, but I don't think so.

So, being mental beaten for things I cannot change and living in a town with unfriendly, stupid, people, tales it's toll on my mental health.  Maybe I need more pills.  Or, Maybe, I should go back to drinking beer.  Lots of beer.

Friday, July 10, 2015

Visiting Angels

I see the commercial for the various companies that provide people to sit with those of us with elderly issues.  I guess this is a good service, but where are the person's family?

The more my dementia progresses, the less I see family!  When I  could fix things, do things, be productive for people, I had list of company.  Now, none!

Dementia is a disease the patient faces alone!  No one really knows or can understand how you are being impacted.  No one really wants to understand what I am going through or be with me when I am dealing with this disease.  Since I am of no use to them, I am not worth being with.  Yes, I receive telephone calls and emails.  I appreciate those contacts and they help me immensely!  But an in person visit would be much more helpful.

I do understand people have their own lives.  They have to work, pay attention to their own families, do home chores, shop, and relax themselves.  So, I am at least number six on the list.  So, maybe I am just being sensitive.

Another issue is when I describe an issue to someone, and I get:  I have the same issue! An mine is really bad.  Go get your own diagnosis!   Here I am, trying to educate you to my plight, and you want to compete with me!!   That is one of the two insults that impact me.  The other is: "You don't look sick!  I don't see any symptoms!  Are you sure?"  That one is going to land me in jail someday!

So, I guess paying someone to be your parent's friend, driver, cook, game partner, at least soothes your guilty conscience.  My view is, don't come to my funeral and grieve if you could not spend quality time with me when I could enjoy your company.  As a matter of fact, I am thinking of NOT having a funeral.  Since my wife will not let me be buried at sea, I can at least control the attendance at an event about me.   Do I sound bitter?  Good, I am.

Tuesday, July 7, 2015


Last night, I was grumpy, agitated, and there was another emotion that I was experiencing that was new to me.  Let me proceed and try to explain.  I had the realization, which for me is more than a feeling, that I was loosing my grasp on reality.  Yes, all of the normal evening issues were there, but they were amplified.  Noise bothered me more, I was angry at the world, I felt week, diminished, and mentally foggy.  But I also felt unable to live in the world as a whole.

As I tried to go to sleep, I fought mental battles with people that I see as hindrances to my happiness.  I anguished over comments made by my wife, about numerous things I can do nothing about.  And I longed to be in that memory support facility in Daphne, Alabama, that I once told you about.

The smallest thing upset me and I had to fight an internal battle to keep control of my anger.  I only had one minor outburst over the ongoing parking issues that my wife seems to want to continually bring up.  The remainder of the time, I just kept my emotions inside and stewed.

It is my opinion that my journey with LBD took a giant turn last night and accelerated down hill.  I slept fitfully last night and when I did sleep, I had violent dreams.  It is now 5AM and I have had a shower, shaved, and I am ready to face the day.  That seems like a very brave statement to me.  We will see.

Sunday, July 5, 2015

Sunday night billiards

Every Sunday and Wednesday night, I play billiards right here in a First Class billiards room right here at Azalea Trace.   I wish my Dad could see this facility.  He would live in the Pool room!  He was a great pool player and I never caught on to the game.  Now, I am learning, from some elderly masters of the game.  They are more than happy to teach me and I appreciate their help.

My Dementia does impact my ability to play ad learn this game.  For instance, we play "8 Ball".  You either have the "Stripes or the Solids".  From one shot to the next, I do not remember what balls I am shooting at.  When we play partners, it becomes even more difficult.

Then, there is all the advice I get from the "Pros".  I forget how to apply they "English" on the ball from shot to shot since my short term memory is SHOT!

But, many of the men playing with me have the same issues.   We help each other stay on the right type of ball or help them to find their best shot, regardless if they are our opponent or teammate.  It is almost like we are playing against the effects of aging instead of each other.  We also cheer when one of us makes a great shot.

While most of the men I shoot pool with are in the 80- 90 age group, we all seem to have the same deficiencies of age.  Mine just came sooner than theirs.  And, no one seems to get angry when we miss a shot or try to shoot the wrong ball.  It is a group of friends, having a good time, playing a game of pool.  No pressure, not tension, just relaxing fellowship.  I truly enjoy these outings and I only have to walk to the next building and ride the elevator up to the third floor!

Living here at Azalea Trace has given me a social outlet that I lost when I quit driving.    This is a great place for me to be.

Wednesday, July 1, 2015

Who are YOU?

We have been exceptionally busy the last two weeks.  Busy equates to stress for me.  If I have more than one thing to do in any day, I am overwhelmed.  That stress usually manifests itself as increased Dementia issues.  And that is exactly what has happened.

I have had a continuing dream that I own a Cabin Cruiser boat and it is having numerous issues that I then try to figure out in my waking hours.  Then, a day or so ago, I was in the bathroom brushing my teeth and my wife came in behind me and touched me.  I jumped out of my skin, turned around, and did not recognize my wife!  I truly do not know why I did not punch her.  I am glad I did not!

Other issues have surfaced including irritability and mistrust of everyone around me.

Again, I have been experiencing degradation of my mental and physical condition.  This is just another example of the direction my condition is going.  While all this concerns me, I still remain hopeful.

More later.