About Me
When I was diagnosed with Parkinson’s/LBD I was 64 years old. For the previous two years I had been struggling with symptoms that just didn’t fit any condition I knew of …
- I had a GREAT DEAL OF DIFFICULTY learning new music or retaining learned tunes (I play piano and ukulele),
- I stopped reading fiction books and instead ended my day reading encyclopedia type reference books. That was because I could not remember plot or characters. But if I read an article (history, biology, travel) I could handle those facts for that reading session.
- My voice would get very thin and stretched. My wife called it ‘talking out of the top of my head’.
- My eyes would do an involuntary ‘roll back’ into my head while reading.
- I could not for the life of me remember anything about ‘yesterday’ (or any of the days before). I began making colourful (I still like art) and detailed journals to record what I did, who came to visit, what special events happened. If I looked at my journal the prompts would help me remember.
- I was caring for donkeys, goats, ducks, geese and chickens on our hobby farm … and was finding it difficult to complete the jobs I set for the day. One, I could not remember what jobs I was setting out to do, and two … I was getting so tired … stiff legs that felt like they were wrapped in cement … shoulder and hip joints that were in full protest mode …
- I was becoming apathetic. That is soooooo contrary to my usual ‘let’s get up and go’ approach to life. It was harder and harder to get myself out into the paddock – and yet I LOVED it out there. It was harder and harder to stay awake all day. And yet I have a real aversion to sleeping daytime hours away.
I had come to the conclusion that I must be developing some kind of dementia … and was not all that keen to pursue a medical solution. It was only when I started to fall. – fall off the tractor, fall in the barn, fall in the coop … and then fall in the living room… that I thought I should get checked out. Finally, my legs simply froze. I stood up. I could feel them. I could see them. I could think STEP … but nothing happened. Eventually I could shuffle my way forward. Time was up – something was going on.
