We all have an interior monologue. Mine admittedly is no shy retiring violet. It’s always been there. Offering opinion. Asking the tricky questions. Hurmphing in the background. Saying what you want to be said but not so anybody could hear it. That’s the point.. its interior after all.

As the PD progresses the symptoms become more invasive. I used to be able to push them to one side. Live life normally. Well, an approximation. When I was first diagnosed I remember spending quite a lot of time reassuring others. I told them how good the drugs were, how I had years and years, how you don’t die of PD. you die with it. I have never read anything, and I mean ANYTHING, about the later stages of this condition. I don’t want to know. I really don’t.

So many people I know in the world of Parkinson’s seem to be so sorted. They eat right, they exercise, they raise money, they stay positive, they stay off social media when they are ‘off’. Or they show us what ‘off’ is like but they always end posts with an up beat ping. They seem to refuse to acknowledge or at least give credence to the yawning chasm of inability, of loss of identity, the erasure of self that I see this disease will eventually wreak on us all. Or am I the only one who can see into that particular day care centre.

I am clear that one day, too soon, I will be given cheap biscuits while I sit in an orthopedic chair and somebody brushes my hair. They won’t let me bleach it because it’s too much trouble and anyway I look so much better au natural. They’ll put landscapes on my walls rather than echo and the bunnymen posters and one day they’ll remind me of when I was an artist. Perhaps they’ll give me an art set to while away the time with. The brushes will shed but that won’t matter.

Does that sound bleak? Perhaps you think I’m being ungrateful or pessimistic or just plain mean. Maybe I am but it’s a fear I live with. And it’s a version of the future that is advancing. How do I fend it off? Can I?

I know people who joke about catching the train to Switzerland. I recoil at that scenario. Surely our society and families can do better than that? But then, reflect. When was the last time you really spoke with a resident of a care home. I don’t mean the forced cheerfulness, I mean a discussion between adults, each of which have a valid perspective, a history, an identity. Most of us, if we were being honest, would have to say never.

Have you ever attended a day hospice or similar respite centre as a patient? You should. It’s a salutary experience. The carers are mostly lovely, well intentioned, kind and patient. But they rarely see you. They see a patient, a case, an opportunity to help. I am not being awful here. How could they know everyone? But I am being honest. And I am terrified of being lost like that. Of one day being incapable of making them see me. ME. NOT the person they think they can second guess or make decisions for. I’ll say it now, I never want to have my decision making power taken away from me. Ever. I refuse to cede my autonomy. Completely.

I am fully aware that this could sound churlish and mistrusting. but it’s not that I don’t trust my family to fight for the best for me. They love me. But they are not me. I am the only me. And that’s the problem.