A Dream. That's all it is. For now.

Parkinson's is an ostracizing illness which destroys life slowly. In contrast with other terminal illnesses, sufferers cannot hide the symptoms and are often the butt of humiliating jokes. When the inevitable comes and they loose control totally, they are often neglected and forgotten in a backroom of an unhappy family member. 

We forget how thin the line is between health and illness, happiness and despair until it happens to us. Support our businesses and return dignity and hope. Help us make our dream come true! Life is not intended to end in embarrassment.

There is no support for Parkinson's sufferers in South Africa. When I was diagnosed, the doctor asked me to walk across the room and come back. When I was back at his desk, he said "You've got Parkinson's. Sorry. We have no cure yet, but we try to control the shakes. Take these tablets and come for an upgrade when the dosage becomes too weak."

That's it. But what did I expect? I don't know. But it would be nice if he could have added "There is this support group. Contact them."

There was nothing like that.  And so began my nightmare. And my dream. 

When the first visible, physical signs of Parkinson's appear, it is already in your system for at least ten years. A slower gait, a little clumsiness, some bad decisions, procrastination, tardiness, emotional distance, a loss of smell, memory loss, and many other signs we don't associate with a monster that will eat your life away little by little.

So back at home, the search begins. Any little scrap of information will help. You tell your friends, and the first thing they do is tell the JOKE. You tell your family, and they are sorry, but also scared. Will they get it too? It runs in families, doesn't it? You look on the internet, and all you can find is a Foundation somewhere in the USA. All in honor of a once-famous actor, bearing his name. He must be so brave. They take donations to do research, they say. Crap. You search on, and find another group in New Zealand or somewhere. They promote movement. If only I could walk, never mind run. Remind me to tell the JOKE sometime. 

Then you gravitate towards Facebook. Aah yes! Gold! There are lots of Parkinson's groups. But the more you read, the more you find that the members are primarily caregivers (mostly family) who complain about their hardships. You realize it is Hell on Earth to care for a Parkinson's patient. The patients are obviously too self-absorbed to contribute anything, so at least we know how the family feels. You can feel the frustration in their words, see the accusing looks, and sense their despair. If they could only get rid of that shaking, incoherent burden. What did they do to deserve this? You get the message and leave the groups. Screw Facebook.

I somehow feel relieved that I have nobody who looks after me. I have to prepare my own food, clean myself, my own home, my clothes, my dishes, everything. I need to do my own admin, finances, and edit my own videos. And I wasn't trained for any of it. I make mistakes, but there is no second chance. My brains feel like mush. I forget everything, and I can't sleep, despite the strongest sedatives. The Taxman threatens to sell my property to settle a long-forgotten debt. They give no quarter. I say I don't have an income. Make arrangements, they say. A dark monster called Depression rides squarely on my shoulders. And I have two innocent dogs who think I am "the great provider". At least some living things other than myself. Poor dogs.

Should I do that thing? Not yet. I still have purpose, whatever that is. I must be walking down this path for a reason. Maybe my reason for this is to shine some light on Parkinson's. To provide support for those who have none. I don't know. Create this website. That's easy. But why?

I realized I need some form of control. A schedule. I use timers and scales to control everything in the kitchen. Turn on the stove, press start. Stir the pot, reset the timer. The timer became the most important device in the kitchen. That orange-colored thing and the dogs. They come to call when it is feeding time, snuggle against my back in bed, and breathe.

I take one day at a time. I watch the dogs grow old, and I get a new respect for life. For the Creator. Of everything.

And every day I'm reminded of my dream.

We are not asking for pity.

We ask for dignity.