The recent downward turn has been difficult!

As we all know, Lewy Body Dementia is a journey of ups and downs.   Recently, I had a significant downward swing that has brought unexpected issues that I was just not ready for.  Thankfully, my Wife has been very observant and has been intone with these changes even though I have not been.

I even have difficulties describing the changes I have recently experienced but I can tell you they are very unnerving.  I am much more emotional and I really cannot tell you why.   My memory has decreased even more and I am now having issues remembering long term memories.   My coordination is worse and I my depth perception and overall vision has gotten much worse.  You know I no longer drive and that is a good thing!

The most frustrating issues of this downturn is that I am in uncharted and unexpected territory.  I just never thought it would be this way!  Yes, I realize my judgment is impaired but I am surprised, shocked and somewhat depressed!  I believe we are now in the more difficult areas of my journey!

Again, my inability to describe what is happening to me is as frustrations as the issues themselves!

Being in groups of people overwhelms me!

When I am in moderate size groups of people and anything is expected of me, that experience, no matter how long it is, makes me extremely agitated, angry, and overwhelmed.  I get very quiet and have a need to escape the group and get to my safe place!  I have had this problems in increasing levels and it is now becoming overwhelming for me.

When I get back to the apartment, I am angry and often respond to simple comments in a very nasty manner!  This normally leads to me going to bed, regardless of the time of day.  My wife see’s this and understands it on a surface level.  But, she often tries to continue as if nothing is wrong but I’ll I explode over something that is trivial!

It IS a large LBD indicator and a reason many of us move to Assiste Living or a Memory Support Community.  It will lead me to that decision sooner rather than later.

Some things just don't work!

Last weekend my Son and I went to see my Grandson at Fort Benning.  He is waiting Advanced Training.  My Wife thought it would be a good trip for me and that time alone with our Son would be good.   It was to be with our Son and great to see our Grandson, but being away from my Wife was not a good idea.  I was disoriented and upset much of the time.  My Son is not attuned to the signals I send out.  He is young and on the go all the time.  I am good for one; or maybe on a good day, two; events in one day!

Without recounting the two days away from my Wife, travel or even life away from my Wife and away from home is something I will never do again.  Enough said!

I need YOUR help!

I need to get a copy of a DVD that I saw at the Alzheimer's Association facility in Norfolk, Virginia.   The story line was that of a Professional woman who was diagnosed with Alzheimer's while still in her High Profile job.  The video was her personal documentation about her journey from her first symptoms until she no longer could communicate.  I found this video very helpful at explaining the progression of dementia's in general.  I would love to purchase a copy of this video for the Memory Support Group her at Azalea Trace and in fact for all of the ACTS Communities.

So, if you can help, please let me know!!

Why do I ask of this help?  I am getting tired of people questing my veracity!  Enough said!!

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.

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!