The following is a Facebook post written by Steve, a new friend if mine from Queensland who has younger onset Lewy Body Dementia with Parkinson’s. I have only had the pleasure of meeting him recently, and found him to be positive and incredibly proactive about living with his diagnosis, and with his permission I am publishing it here today. Steve is a proud member of the new Alzheimer’s Australia Dementia Advisory Committee, which met in Canberra last month, and his story will also be featured on A Current Affair soon.
Read this insight into Steve’s often unseen and slowly disappearing world.
For those that know me or may have seen some of my posts.
Most would say that I have a positive attitude when it comes to me having YOD now aged 44.
I always try and find a positive.
And I can always find one.
But I wanted to share today the other side.
The side that scares me.
That makes me vulnerable.
That side that makes this diseases real and makes me feel like prey being hunted by a predator that circles me and bites at me taking pieces of me away.
I have noticed in myself that some parts of me are not the same as they use to be.
It scares me so much.
At times I just want to cry so hard that there will be no tears left and that terrible feeling I get in my stomach will be gone.
I went with my wife to a large shopping center yesterday.
We didn’t park where we usually park because it was near the shop we needed to be at and also in the underground parking we were out of the heat.
I had woken with the usual pain in my body from the Parkinson symptoms I get with my YOD.
We entered the shopping center and straight away the noise hit me. We came up the escalators and I didn’t recognise where we were.
My wife was holding my hand all the time so I knew everything was ok. We entered the shop to return and swap an item. The line was long. I said to my wife you stay in the line and I’ll go look for the item and meet you there.
I went to the part of the shop I needed and spent a long time walking straight past the item numerous times. I just felt lost.
My wife came and found me and we had to go to a totally different part of the large shopping complex. I was limping all the time cause I was sore. My wife asked me where my pain was. The answer I said was in my back. That sounded right to me.
I rubbed my hip and my wife said is your hip sore. And that was the word I needed. I said yes. Thinking how stupid I felt not getting the word right. There were things we had to do for our upcoming holiday. We went in and out of shops. I didn’t leave my wife.
Every time we came out of a shop it felt like I should turn right to get us back to the car. But it was left we needed to go. I asked my wife what happened to the foodcourt. I knew this was the centre of the shopping complex. She pointed to a totally different part of the complex. I was so confused being in a shopping complex that I had been in hundreds of times.
I felt so lost.
This isn’t me.
I know I should know this place.
It upset me a lot.
Only a few years ago with a previous job it was my task to drive all over the city find a much bigger shopping mall I had never been to, park in a car park I had never seen. Find a specific shop in a muti story complex work for an hour and navigate back through the complex back through the maze of car parks to find my car.
And I did it with ease.
I could drive in any city from Victoria to Queensland.
You could put me in the middle of Melbourne and say find this place and I could.
Now I can’t even navigate my local shopping center. Or use the right word to describe something.
Where have I gone???
Why is this cruel animal circling me, taking bits of me away?
Why doesn’t it strike to kill?
It’s game is torture.”
Published with permission. Copyright: Steve Coleman 2013