So what is it you actually want.............?

"So what is it you actually want?"

I had just spent 15 minutes summarising my symptoms and their impact on my day-to-day life and here I was being asked a simple question by the Parkinsons nurse, what was it I wanted?

To be cured, to not have this bloody awful condition, to wake up tomorrow Parkinson's free. To feel normal again, to be able to have the life I had planned for myself.

"I want to be cured."

But unfortunately, that's not in her power to provide. She can't cure me, no one can. So what would be the point of asking for what I know is impossible? It isn't her fault I have Parkinson's. 

Besides I like her. She is good at her job. Kind, Understanding. And cares deeply for those fighting this condition. And anyway I'm still at the "not too bad" end of the spectrum and she also has to deal with those at the other end, those who are suffering from some quite severe symptoms. I'd feel like I was whining.

"I want to be cured" 

I had to say it, even though I knew the answer, because like with every with every other Parkinson's sufferer, we want to be "normal" again. We all want the miracle to happen in our lifetime before it's too late to be of real benefit. To again feel in control of our bodies and minds.

To be cured.

"What do you think? I want to be cured, but I know you can't offer me that. So can I be what I was like 2 months ago, with a reasonable amount of control and capability in my right arm, to not be so obviously "Parkinsy"?"

"I want to be the best I can be".

"Parkinsy", my wife's word describing how I am at the moment, cognitively slow, slightly shuffling, disengaged, shaky down my right side. Anxious. Suddenly I feel I have aged 20 years. My body certainly acts as if I have.

I hoped she could at least say yes to that.

"Well let us look at your medication shall we", so no "yes" then. No promises. 

So we went through my options. Changing to leva dopa. Increasing the level of my current medication (again), mixing and matching different types of medication.

But none of the options came with promises. We'll just have to wait and see how my body responds. So we agreed on a plan and I would discuss its effectiveness with her after two weeks to see if I needed to increase the medication further.

She had a concern about the increase.

"Are you exhibiting any compulsive behaviours? How's your spending? Have you and your wife taken any preventative measures?"

So I outlined the actions we had taken with regard to catching any changes in my spending or if I started gambling. 

“Anything else,” she asked, I knew what she was after but, I was not going to talk about my sex life. There are certain things I’m not willing to discuss, even with my nurse. 

It's just too embarrassing.

And even though it’s not an issue, and even if it was, I’d not admit to it, she can forget any possibility of porn addiction. We have a preventative measure in place. Murder. Which is what the wife would do to me.

And I'm not in the mood to commit suicide.

“You wouldn't tell me even if there was, would you.” She laughed. I protested, how was I to prove my innocence? But she is right in her concern, those with compulsive behaviour, aren't very good at owning up. That's why people have been known to gamble away their pensions, their houses, and their savings and have left themselves in poverty. 

Driven by shame and embarrassment they stay quiet.

All I can say is that at the moment I am not exhibiting any compulsive behaviour. But, I'll need to be on my guard for the future with the increase in medication levels. Or more probably the wife will need to be.

The stronger the meds, the greater the risk.

So at the end, we had a chat about the future. When we finished I said to her. "I hope you understand what I mean by this, but as much as I like you, I wish we had never met!"

She laughed, "I wish I had never met any of my patients. I wish there was no such thing as Parkinson's". Then I got up to leave. As I shuffled out of the room she shouted after me. "Heal, toe, heel, toe".

Reminding me how to walk properly.