Wednesday, October 16, 2013

Being with people like me!

Today, I went to play table tennis with a friend that has Parkinson's.  We manage to play once or twice a week.  In spite of his affliction he is a great table tennis player.  We play at a recreation center operated by the local Methodist Church.  Many folks from the neighborhood come there to workout, do aerobics, and just talk during the week.  On Sunday, it is a Church, meeting on the full court basketball facility that seats over a thousand for two services every Sunday!

While we were playing, an acquaintance I know who has Lewy Body Dementia like me, walked by.  I would much rather talk with him and his wife than get beat like a nail by a fellow with advanced stage Parkinson's playing table tennis.  Andy, his wife, Sam, my table tennis partner, and myself sat a talked for 30 minutes.  I cannot tell you how refreshing it is to compare symptoms and problems related to LBD with another person with LBD.  He and I are on the same sheet of music, even though he is a step or two further down the path than I am.  We can and did compared testing experiences, hallucinations, medicines, muscle pains, and other issues he and I share in common and some he has that I don't or that I have an he does not, yet.

For that 30 minutes, I forget that people call me a liar and say I am not sick.  I forget that I hurt every night, can't remember my last thought, don't know what meds I take, and sometimes forget how to read.  Instead, we are the same.  We are a community of two, dealing with life the best we can.  We do not have a disability we have a challenge.  If you do not have LBD you cannot understand the comfort I feel being with another LBD patient.  I believe sufferers of cancer, MS, or even Diabetes may have the same issue.  Being with someone, talking with someone, commiserating with someone, walking the same path as you is comforting.

For instance, I have written about REM sleep disorder and how I live out "Fight" dreams in my sleep.  And how I punched, no poleaxed, my wife one night.  And how I now take meds to help that issue.  Andy has not had that issue.  I am glad and I hope he never does!  But he was understanding and interested in my issue.  That is comforting and helpful.

My wife and I plan on having them over soon to make our bond stronger.  This was a good day.  

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