Diagnosed with Parkinson's Disease

Published on 29 May 2015  |  Posted by Cheryl  |  Filed under Parkinson's Disease

My personal irony of being diagnosed with Parkinson's disease is that my passion in life is to create miniature art and handmade porcelain dolls. I have worked in many industries through the years of my life. I spent 12 years working as a computer programmer and 8 years as a video editor, but my passion has always been working with my hands and creating art. I studied for and achieved my international Masters of Porcelain doll making from the Doll Artisan Guild in New York. I won many awards locally and internationally and also achieved my teacher’s certificate and artisanship.

At the height of my doll making career, I was struck down with the onset of Parkinson’s Disease, and 10 years later with arthritis in my hands. My reputation as a doll maker and miniaturist had just begun to grow. internationally and my creations were sought after by collectors from around the world.

The symptoms began in the year 2000 with a strange “stiff” feeling in my left pinkie and ring finger when I was typing. I mentioned this to my family but it was dismissed as nothing to worry about. About a year later my left hand began to twitch. I was encouraged to see my doctor “just in case”.

In December 2001 I was diagnosed with Parkinson's Disease. You wouldn't believe how that sentence rocked my world! "Hmmm it looks like early onset of Parkinson's, hold on! I need to call someone to see this - don't move! Sit just like that!" The doctor raced out of the room leaving me bewildered, and in shock. I thought he was going to call another doctor for a second opinion, instead he called an intern who happened to be there to learn a thing or two. They sat either side of me and the doctor began asking the intern questions over my head, as though I was not even there. In my shocked state, I sat there like a lump, not saying anything, trying to filter through my brain what I had just heard. I hope the intern learned how NOT to tell a patient she had PD! I lost all respect for him and never went back. His wife was a porcelain doll maker like myself, and my supplier, and I chose not to support either of them again.

It felt as though I had entered the twighlight zone where everything turned from colour to black and white, and the lights seemed to dim, voices echoed in my head, and I felt as though I was about to pass out. I realized that with those words ringing in my ears, I stopped breathing out of shock. When I finally took a gulp of air, the dizzyness went and I slowly returned to a horrible reality which was to change my life forever. Depression hit an all time low and I wondered if it was worth living anymore.

For any medical practitioners reading this, unless you have been diagnosed with this disease, don’t even try to understand how shocking it is to your patient, or how it will affect their lives from this moment on. Have compassion and be gentle. Doctors should treat their patients, not their diseases.

Over the next few years, my quality of life worsened. My left hand, then my right hand shook constantly, my movements slowed down and eventually I needed my husband’s help to get in and out of the bath. Having been a very independent person all my life, I hated the fact that I had to start relying on people to help me, even to cut my food for me.

Luckily, I found a very caring doctor, Dr Malan de Wet, who helped me get through the depression and introduced me to my neurologist. I was put on a hormone tablet which contained dopamine, a hormone produced by the Thalamus gland deep inside the brain. My Thalamus gland was apparently not producing enough Dopamine to help the muscles maintain good communication with my brain, and didn’t know whether to contract or relax, so they did both! It was physically exhausting. The meds helped at first, however over the years my condition worsened.

Videos of my experiences with Parkinson's:

Handling a camera with Parkinson's:

Return to the Main Blog:

Blog Home

My Life A photo collection of the most important things in my life.

pix pix pix   

My Work A photo collection of my work from the past, present and future.

pix pix pix   

My Future A photo collection of my dreams and projects for the future.

pix pix pix