Friday, November 15, 2013

Good days and bad days, a way of life.

I received a comment today from a reader that asked me if I had good and bad days.  The short answer is yes.   This is a cardinal symptom of Lewy Body Dementia.  But I actually experience changes from good to bad or bad to good during the day.  This morning, when I woke up, I felt like there was nothing wrong with me.  We had Marcel the Wonder Dog groomed this morning and then headed to the Commissary to do our grocery shopping.  Halfway through the Commissary, I was confused, tired, and disoriented.    That passed later in the afternoon, however, I am now experiencing my sundowning issues.

I have written before that I almost hate the good times because I know a bad time is just around the corner.  The roller coaster ride of LBD is most aggravating.

Another question related to stability.  I use a cane often as a stabilizer.  I also have a rotolator that I use for longer walks and outings.  In the house, I stubbornly refuse to use my cane.  I have fallen but normally I just stumble or wobble.  I guess I am like a Weeble!  My mobility issues are rigidity, mostly in my legs at the moment.  As I understand it, my "Push and Pull" muscles are fighting with each other.   My muscles normally feel like I have just completed a marathon!  They are sore, tender, and stiff.  The rigidity is moving to my arms and my lower back.  This rigidity effects my balance especially in a slippery or uneven surface.  

LBD impacts many functions.  Memory, hallucinations, balance, even your feeling of safety and well being.  I often say this is a good disease to have because I forget the bad parts.  But, it is also a difficult disease to have considering all the parts of your life it effects.

The last part of the comment related to professional care.  My wife and I know there will come a time when I am too difficult to care for.  She cannot life me out of bed now, so if I am unable to get up, we would be in trouble.  The reality is, most of us with LBD will require professional care.  Most of that care is provided in a Nursing Home or Memory Support Unit.   We are presently on the waiting list to move into a Continuing Care Retirement Community that provides independent living and all levels of assisted living including professional care.  Planning ahead is the best way.  Of course, sometimes LBD moves faster than you can plan.  We are blessed that my journey is somewhat slow at this time.

I have said it before, those of you who read and comment on this blog are my support group.  I love to read your comments and hopefully, provide you some insight into my journey.  As Red Skelton used to say;  Keep this cards and letters coming!  Thanks.

1 comment:

  1. Thank you for your reply to my message. It is good for me to learn as much as I can about LBD from all sources possible but to hear it from a LBD patient, makes it much more relatable. I, as a daughter, worry continually about him. I am really proud of him tonight though, he did 32 minutes on his exercise bike!!! It was a good day/night for him and me <3