About Me

I was diagnosed with young onset PD / LBD and that doesn’t mean under 65 ! Young onset is 50 and younger & and it’s not just a males disease. 

I was in denial for quite sometime. I went onto being angry and not so much about the diagnosis. I was angrier about having medications shoved down my throat , all the harsh side effects and the lack of proper medical care. How many neurologist knew very little about LDB and just treated PD with a generic drug. How the good medicine is made only for the rich!

Angry that media persons make PD look like a cake walk! How I couldn’t afford Lewy / PD ! How it took over my mind, body , speech, executive function, swallowing, sleeping, hand writing and my will to live .

The absolutely stupid things people would say to me! How I can’t even figure out how to put my clothes on or remember anything. 

I sat dormant for a few years, I couldn’t take overstimulation. I couldn’t walk much and fell down. I could no longer function.

Maybe it was the disease lack of impulse control, maybe I just couldn’t go on any longer , maybe just maybe the best thing I ever did was buy an RV I call the Highway Hearse and fulfill my dreams! I turned my dreams into a rolling advertisement to raise awareness for PD & LBD.

I found my peace and freedom in nature’s dopamine. I struggle less now knowing I’m living out the time I have left on my own terms, in my world full of nature, peaceful, calming winds, wildlife and wonders. I turned the four walls of my living room into jaw- dropping scenery and full of sunshine. It’s truly amazing ! 

im not being treated like a brainless entity or being resented by a care person or society making me invisible. Instead of Lewy taking me for a ride , I’m taking Lewy on ride !