Thursday, October 19, 2017

Myoclonic jerking!!

I have been experiencing some leg movement as I go to sleep at night.  Naturally, based on television ads, I thought it was Restless Leg Syndrome.  My Neurologist even agreed.  But, after doing some research I discovered it is Myoclonic Jerking!!  This is a involuntary contraction of the muscles and sometimes an involuntary release of muscles.  In m case, it is involuntary contractions of my leg muscles and it is a common symptom for LBD patients!  Do RLS medications work for Myoclonic Jerking?  I don't know.  But, I sent my Neurologist an email on their Portal and asked Her!  I believe I am providing Her a great LBD education.  I always knew I was a Lab Rat, now I have proof!!

There there is a wealth of information on the Internet from reliable sources about Lewy Body Dementia.  I do not expect my doctors to know everything about every condition and drug.  I believe it is my responsibility to learn as much as I can about my disease and share that information with my doctors and anyone else who is interested.  My health and treatment are at least partially my responsibility.

Sunday, October 15, 2017

Unvarnished Truth!

I have written this blog from my heart.  I have NOT held back in any way.  I know there are folks that read this blog who are not involved in LBD in any manner.   They read it for various reasons and I appreciate their desire curiosity about LBD and me.  But, if you read this blog, you must understand why I write it.  The purpose of the blog is;  1.  To leave a journal of my LBD journey for my family and friends.  2.  To let other LBD patients and caregivers they are not alone.  3.  To educate the medical professionals about the effects of LBD.   While this blog has been recognized a number of times, that is not why I continue to write.  It's nice to be recognized and have great readership.  But it is not the reason I write.  But, thanks!  

Why am I saying this?  Just to make sure everyone know where I am coming from.  LBD is no cake walk.  it is frustrating, angering, gut wrenching, confusing, and self-centered.  


On another but related note;  My recent issues have made me realize I need more care and I intend to seek a move to Assisted Living after the first of the year.  There are financial reasons for that date, but by then, I will be ready in every way.  This move will also help my Wife by relieving her of some of the responsibilities of keeping track of me 24/7/365.  Also, one of my friends here at Azalea Trace said something to me that made extreme sense!!  He said; "People don't move to Assisted Living in time to enjoy it and benefit from the care it provides."  He is correct!  I have seen people delay they moves to Assisted Living until they are so infirm they are quickly moved to Skilled Care.  They never benefited from Assisted Living because they were so infirm they were past the benefits of Assisted Living!  I see a move to Assisted Living as a life extender, both cognitively and physically!

So, there is the unvarnished truth and why I write what I do.  I hope everyone understands.

Dealing with ANGER!

Many things anger me that would not have caused me any issues before LBD.  Some things are just normal life issues.  Some things that anger me are the way people react or relate to me.   I will admit that I expect things to go the way I want them too!!  (Now, that is honesty!)  And knowing things won't go the way I want them to does not help me deal with people that do not meet my expectations.  Instead, I get angry!  I believe this is all normal for someone where I am in the LBD journey.  It is HOW I deal with this anger that is the issue.

I do not want to be a burden to my Wife or others.   So, I hold my anger in!  I do not address it at all, verbally!!  Instead, I internalize my anger until I forget why I am angry!!   Of course, this time of internalization is accompanied by quietness on my part!  I think my Wife knows I am upset although I do not think she knows why.  She never says anything!  She just goes on being annoying in her own way until I forget why I was angry!!

This problem is exacerbated by the fact the my Wife expects everything to go her wall, all the time.  Before LBD, we discussed these issues.  Negotiated, exercised give and take.  Now, because of LBD, that does not happen.  She has never gotten over being angry at LBD.  Her plan for our lives has been derailed.  That has to be frustrating.  But what about me and my expectations?  And that is where my ANGER starts!

Tuesday, October 10, 2017

I was shocked today!

I preached today for the staff Chaplain here at Azalea Trace.  I am filling n for him for the next few weeks because he is on a Mission Trip to Central America.  I am very proud of him and his Wife and honored to be able to help him this way.

When I was setting up for services in the beautiful Chapel in Willow Brook Court, a man came in to the Chapel.  I recognized him from Independent living but he was not the same man!  In a very short time, Dementia, of what type I do not know, has completely changed this man.  He did not recognize me and I could tell from his actions he felt threatened and unsafe in his surroundings.  He was being cared for by one of the wonderful Home Health Professionals here at Azalea and was in very good hands.  Just the same, his appearance and demeanor shocked me!

How could this seemingly vibrant man go sown hill so quickly.  My Dementia journey has been gradual and fairly gentle up to know.  But he obviously has been run over by a truck named Dementia!

His condition has caught seed me to reevaluate my position and my life choices for the future.  I know my Dementia is speeding up and getting more virulent.  Maybe I will be the man who shocks someone ion the near future.

Wednesday, October 4, 2017

Calling my Wife "Mom"!

We had our weekly Memory Support Group today and Kathryn from Covenant Care was our facilitator.  She leads our group the first Wednesday of each month.  She is well versed in Dementia care and has a heart for us.  She was able to engage a number of our attendees in open discussions about their symptoms and that was very constructive.   She was discussing the fact that Dementia patients sometimes see their spouses as nurses, outsiders, or even their parent!  This answered a question I had!!  I have begun to address my Wife as "MOM"!  For instance, we are in the car, she is driving and I will say;  "look at that Mom!"

I would hear myself say that a wonder, where did that come from?  Now I know.  But, it angered me that I did no see this coming!  I pride myself in understanding my disease and helping other Dementia patients.  Instead, I needed help and Kathryn had it!!   am very thankful for her!!

My symptoms are getting more complicated and difficult and I no longer can self-diagnose them.


Tuesday, October 3, 2017

"I have to get out of here!!"

Many emotions rush through my mind at night because of "Sundowning".  Last night, as I was drifting off to sleep, I was SNAPPED awake by an overwhelming need to run away fro where I was!!  I was in a panic and I knew I needed to get away from the location I was in.  For what reason, I do not know.  But it was a real fear, flight or fight, reaction!!  It passed soon enough and I was able to settle down and go to sleep.  But each time I woke up to go to the bathroom, that emotion was in my thoughts and it continued after I got up this morning.

Today is Tuesday and my Wife has her Leaders Group for Bible Study Fellowship, so I am alone.  I had a number of errands to run and a meeting to attend, so my morning has been directed and I have had little time to just sit and think, until now.  But, now, as I write this, I am trying to understand that "Flee" emotion that I experienced last night.  There is nothing here that frightens me, so they would not seem to be the issue.  Just the same, I have no plausible reason for last nights thoughts except maybe, LBD is just finding another way to mess with me.

Saturday, September 30, 2017

The HIGHS and lows of LBD

Today, I have experienced the HIGHS and lows of Lewy Body Dementia.  Azalea Trace has celebrated Active Aging Week and there has been some wonderful activities all week.  Today, we had Hot Air Balloon rides early in the morning, right here on our campus!   I have never ridden in a Hot Air Balloon but today,  thanks to Azalea Trace we got to experience Hot Air Ballooning.  Yes, it was a tethered ride, but we still floated with only the power of heated air!  We were high enough to look over the stately tree tops and see the Escambia Bay!!  It was exciting and exhilarating!   But the remainder of the day has been depressing and difficult to walk through.

The experience of this morning brought back many memories of the exciting and dangerous things I did during my Navy career.  It all was brought to the forefront of my mind, and those thoughts have illustrated to me that I will never do anything like that again and that my life is drawing to a close.  That does not bother me but it is something that is difficult to deal with and I am not really sure I am dealing with it very well.  I miss my Navy buddies and the camaraderie of those friendships.  I miss not being able to go places, drive, take care of my own issues, like haircuts or clothes shopping.   I miss being independent, capable, and in charge.

I have come to understand Pensacola is my final destination.  It is the last place I thought I would end up, but not the worst place to be.  Right now, the emotions of the day have overwhelmed me and It is time to retreat to the safety of my bed.   Maybe I will address this more tomorrow,