I have been struggling. It has felt as though I can barely keep my head above the water to breathe, yet I know I must persevere. I have too many things I wish to do, places to visit and experiences I want to enjoy. Yet I have been consumed by fear. Fear of the unknown. Fear of missing out. Fear of Parkinson’s.

I know that it is useless to sit and feel sorry for myself because it’s not going to change anything. It would be terribly easy to do, people would not even feel that I was unjustified. Yet the fact would remain that I have an incurable neurological degenerative disease. Ah. The word degenerative. Come to think of it, even the word ‘neurological’ strikes fear into the hearts of many people.

Over the Christmas period I met a really lovely person who told me that they knew someone who could help me. They had done wonders for their friend, their skin had vastly improved. I didn’t quite know how to respond. I mean, the polite thing was to nod and smile, yet I wanted to say something else entirely. I hesitated- then took the plunge.
“Actually, I have a brain disease. My brain doesn’t work properly.”
They nodded and smiled at me, like I was an idiot. “But it’s like M.S., isn’t it?”
“Er, well they’re both neurological diseases, but no, not the same.”
They simply nodded sagely and patted my hand. “I’ll pass you their details, they will help.”
They began to leave, my moment was slipping away (I was pretty stunned to be honest), but I quickly tacked on, “to be honest, my medication and exercise works really, really well. In fact, unless this person can repair my brain, there’s not much else anyone can do. ”
They smiled at me as one does an indulgent child. They moved on.

All I could think of was Tim Minchin’s ‘Storm.’ (warning it’s ten minutes long but well worth the watch.) I didn’t think they would find it very amusing.

How many times have we endured this… this crap?

What do we do when people accost us in this way? I try to be amused, but why is it just because someone knows a person that once did some amazing alternative therapy I’m supposed to be impressed? They expect us to say “Yes! It sound like a miracle! Sign me up!” I’m older, wiser, more cynical. I say – “how much money do they want?”

They always want money. Well, you can’t expect miracles for free, can you? Even Miracle Max took payment before restoring life to a ‘mostly dead’ Westley. Sorry. I’m a big Princess Bride fan. I get distracted. It happens.

I’m quite sure that if there were a breakthrough in Parkinson’s medication we’d hear about it. I mean, everyone’s now talking Covid and other, more attractive diseases. I mean, Parkinson’s only affect the old, remember? Young people don’t get this. So it’s not like it’s really that high on the agenda. I still think we’d know if there were sudden and real traction. I’m not religious, but even I offer a silent prayer for a cure.

But back to the charlatans. They’re everywhere. Literally. There’s someone I found recently offering a thirty minute webinar to help people with Parkinson’s. They offer advice such as ‘drinking water is good for you’ and ‘chanting for dopamine.’

I can’t even … my disdain and disgust is strong.

There are many people out there that may claim these kind of snake oil peddlars offer a light of hope and what’s wrong with a little feel-good placebo? I say that science, drugs and good old fashioned exercise are the only things we should rely on.

The person at the party forgot to pass on the details of Miracle Max. I certainly wasn’t going to ask. I continue to exercise, walk and try to hold back my awful disease as much as I can. Some days are harder than others, stress is not good for me, and I’ve got four teenagers and a full time job! Yet on we go. We have no other choice. Paste on that smile and forge forward.

Until next time.

Kitty.