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August 2019

3 posts from September 2019

We didn't use the word Parkinson's all day last Saturday

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Around our house, it's hard to go a whole day without using the word Parkinson's.  It has a way to taking over your life.  Everything you do from hour to hour is a reminder that you have the disease.  I sometimes feel like a blob is growing over me, the PD blob.  Last April when I was diagnosed, I wrote about how I didn't want to become the disease.

When we got home on Saturday from Frankenmuth where we ate at the Bavarian Inn, I commented to my wife Gladys that I don't remember using the word Parkinson's all day.  It felt great to not be reminded for several hours of the disease that's affecting my whole body.

I still couldn't escape my walker that limited my mobility.  It was sandwiched in between smiles from four of our six grandkids who were taken in awe by a horse drawn carriage or the making of fudge.

My voice was weak, but the Holy Sprit was telling me to enjoy the moment and I did.


My six month Parkinson's report: Getting ready for the next part of my health journey

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I've been in somewhat of a denial about having Parkinson's Disease since being first diagnosed almost six months ago.  I kept telling myself that I couldn't have it, that the symptoms I'm feeling are just part of a crazy mix-up.

And then it hit me yesterday at a big Parkinson's event that I really have it and what I'm feeling is totally consistent with having the disease. 

I'm not saying this so people can rub two fingers together and say "this is the world's smallest violin and it's playing just for you, Wes."

My life has been turned around though.  Whereas, before I counted on my mobility and voice to be part of the world.  Crowds never bothered me.  Now too many people at the door of a restaurant can set my mind on fire.

My voice has turned into a big quiver of nothingness.  My bucket list used to be topped by a series of trips for me and my wife.  Now I'd be happy to have one normal conversation with her.  For her, I suspect it's like talking one of our grandchildren when they were two or three years old.  You pick up a word here and there, but often not much more.

I've picked up some new words along the way, including cognition.  It takes me longer than it used to for me to process the pros and cons of an issue and for me to respond to it.  It's all part of the dopamine shortage with the neural transmitters in my brain.  

I have the Parkinson's shuffle big time.  I walk with a cane using itty bitty steps.  And this brings up the subject of falling and I've had a couple, one with a walker which got away from me.  My knees show the evidence and the reminders of how easy falls can happen.  

This happened outside on the sidewalk.  Could I get up by myself?  It took me more than 20 minutes, but I did it with Gladys by my side.  I showed myself that I could do it.

What about sleep?  Constipation?  The meds?  What about the hallucinations?  

In Dearborn, we go to a church where the right stuff is being practiced and taught.  The people seem to be very warm and caring.  How do I react in social situations?  I avoid them.  My phone conversations have become terse.  I avoid them too.

Is there a good side to all this?  I pray a lot more and for a wider group of people.  In the middle of the night when I wake up I recite Psalm 23 over and over.  He is still my shepherd.  He leads me beside the still waters.  And when I walk through the valleys, He is still there.

Don't feel sorry for me.  Maybe feel sorry for Gladys for having been picked for my care provider.  She's an encourager and a servant.  And so are my kids and grandkids.  My three-old grandson notices when I have a difficult time getting off a couch and he'll stick out his arm and in his squeaky voice say to me, "I love you man."