Thursday, March 14, 2013

Muscle pain, involuntary movements, and instability, and other issues

A few weeks or so ago, my neurologist told me that he thought the Parkinson's part of my LBD would become an issue by the end of the year.  It appears he was right.  Now this rare prediction by a neurologist is a first in my journey.  Just the same, he was right, so I will give him his due.

The pain portion of this disease seems to have settled in my legs for the most part.  The leg pain seems more intense in the evening than any other time.  Since I was placed on the Exelon Patch, the only over the counter pain reliever I can take is Tylenol and it's derivatives, and they do not work for me.  So, I just endure the pain for now.  The involuntary     movements effect my large muscle areas.  Legs and arms seem to be the most effected.  Today, I almost kicked a hole in the back door as my leg jerked out of control.   The movement is annoying right now.  I can see where it may become a real problem.  It bears monitoring.

My instability has increased to the point that I used my cane whenever I am out of the house.  I am getting used to having my cane with me, so that is a good thing.  I have a good walker with a seat and a storage compartment under the seat.  It is red and sporty.   I do use my walker for longer outings like the historic walking tours of Pensacola.  I get many jealous looks during the tour when I sit down while everyone else stands!

My memory is noticeably decreasing.   But my psyche in dealing with this change is interesting.   I no longer try to hide my memory issues.  I have decided not to fight this disease but to learn to live with it.  Fighting it is tiring and fruitless.  So, I have given myself permission to let this journey progress without resistance.

Don't fret about my decision not to fight.  Fighting actually detracts from my ability to enjoy life.  I want to enjoy my life and journey.  If I spill my meal on my shirt, so what!  If I don't remember your name, tell me again who you are.  If I need to sleep all afternoon, I will.  The bottom line is, this disease will progress at it's own rate, and I cannot effect that.  So, I might as well accept that and enjoy what I can.  So, that's where we stand.

I read a lot about Lewy Body Dementia.  I see the issues my fellow LBD sufferers live with.  Those folks are my support group as well as you.  It helps me to know that I am not the only person with some of these issues.  Like I have said before, I am normal!   It is a good feeling.