I'm a Professional Public Speaker. I want to write about being a professional public speaker. I’d like to avoid discussing living with young-onset Parkinson’s. This was never supposed to be a blog about Parkinson’s Disease. It was supposed to be about my comedy, my MC (Mistress of Ceremonies) skills and of course, my ability to hold an audience in the palm of my hand whilst I encourage, motivate and inspire people.

However. Here it is again. The things people say to you when they discover you have this. What will it take for people to realise we’re not written off and ready for the scrap heap? Once again this week I had a conversation with someone about life in general. It came up of course. It always does. You might have noticed that I’m not shy about it. Anyhow. There it was. “Oh yes, you have Parkinson’s, don’t you?” someone commented. “Yes I do” I replied. They proceeded to tell me about their friend whose husband has Parkinson’s. How you couldn’t tell at all whilst he was in his forties, yet gosh, it really took hold in his fifties you know. He’s had to go into a home now. But it’s such a shame. He’s still there, but you know, he can’t do things for himself any more.

Thanks. They paused, then laughed awkwardly. I suppose my smile was giving it all away.

It’s not the first time I’ve heard stories like this. I’m sure it won’t be the last. I simply smile wryly and say “it affects us all differently you know.”

How many more times do I need to tell people I’m not ready to roll over and conveniently die quietly in a corner for them? It’s true I feel this thing on a daily basis. It’s true that it is scary. My motivational public speaking has been borne out of the horror that is a degenerative incurable disease. What the heck, you may as well put this crap to work, right?!

I firmly believe that now more that ever we need to help others with this thing. Help doesn’t seem relatively forthcoming from the official channels. Somewhere that will promote positivity. Inspiration and factual advice. Somewhere that will help support people with Parkinson’s and help connect them to the best sources of new thinking, research and most importantly each other.

Finding another person in my locality with Parkinson’s Disease helped me realise I wasn’t alone.  It allowed them to talk to someone freely without the worry I’d sit with a sympathetic face, feeling sorry for them. We helped each other. It wasn’t a pity party, far from it; we have become stronger, happier and more determined as a result of finding each other.

Together we plan to create an online space that will help people with Parkinson’s. People like us. Normal people, living our best lives.

Watch this space, because we’re coming to a screen near you soon!