Transparency

Sunday 9 April 2017

Three significant things happened this week in relation to my Parkinson's.

Firstly, and perhaps most importantly, I told Rosa.

I had made the decision a few weeks back to tell her in the Easter school holidays.  It wasn't a difficult decision: I was brought up in a very open environment where nothing was ever kept a secret for long and grown-up topics were openly discussed.  I'm a firm believer that children respect their relatives for telling the truth, and telling even white lies only breeds resentment further down the line.  Certainly, as a child I could easily tell when my grandmother was twisting the truth and, despite her many positive qualities, I disliked her for it.  At 12 years old, I was confident Rosa would appreciate me telling her, if not now, then in later years.

It was Sunday morning.

"Rosa, there's something you need to know," I started as she was lazing on the sofa playing Minecraft on her iPad.  "I have a disease in my brain."

She looked at me and smiled, thinking it was a joke.  But she quickly clocked my serious expression, stopped her game and paid attention.

"It's called Parkinson's and you'll find out more about it when you're older.  I have a disease in a tiny part of my brain which in the future will cause problems in moving my arms and legs.  Your Dad will have shaky hands.  I'm taking medicine for it but in a few years' time the medicine will start to wear off."

"Is it causing the problems with your eyes?" she responded.

That's my girl, I thought, and immediately felt vindicated of my decision to tell her.

"Possibly," I said and then explained a little more about the causes of my double vision.

It wasn't a long conversation and we pretty much left it at that.  I told her not to worry and that the symptoms would come on only gradually.   I was nervous before telling her but felt so much better afterwards.   And now I have an excuse for being rubbish at badminton and tennis.

The second big thing to happen this week was that I had my first hallucination.  This falls into the "PFS" category (see previous post on PFS).

I was making lunch in the kitchen when suddenly about a third of my visual field, most of the right-hand side, went completely weird.  I could see normally on the left but on the right was a blank image surrounded by a zig-zag black and white border, a sort of distorted chessboard pattern.

I had no clue what was going on and it was quite scary. What was happening to me?  Would it get worse?  Was I about to go blind?  Would I get faint and collapse like before? Should I call an ambulance?

I sat down as the weirdness continued - it had come on suddenly but appeared not to be getting worse.  Then, after about 20 minutes, it subsided as quickly as it had started.

I quickly flicked on the iPad and within a couple of minutes identified it as a hallucination.  I read that hallucinations can take many forms: voices, visual disturbances and so on, but mine seemed to be a text book case.  I concluded that it was probably caused by the dose of my dopamine agonist being too large, and this was corroborated by other, milder, symptoms I had been experiencing over the past two weeks. These come under the general term of mania: decreased need for sleep, a mind that is racing the whole time, confidence and drive, and a short attention span.  I read further about related mental conditions like bipolar disorder and schizophrenia and the delicate balance of different neurotransmitters in the brain.  And I remain fascinated by the brain's ability to distort reality so readily.

I will speak to The Professor about all of this soon enough, but in the meantime, I only have 1.05mg tablets of pramipexole and don't want to risk the even worse side effects of coming off my medication abruptly, so I live hoping I do not have further episodes like this....

Thirdly this week I participated in my first Parkinson's study. The study was aimed at genetic analysis of people like myself with young onset or familial Parkinson's in the hope of identifying genetic factors that either cause or mitigate the disease.  This in turn could help identify new treatments, not just for the 5-10% of people with genetic Parkinson's, but for all sufferers.

I was extremely impressed with the professionalism of the study coordinator and the accompanying doctor, who carefully explained everything to me, stressed the lengths they go to around information security, and were friendly and positive.  The whole process only took about two hours: blood samples, various questionnaires, and some clinical tests (which I am now becoming quite familiar with).  They even recorded some of the examination on video for quality control.  "Don't show that to my daughter. I'll never hear the end of it," I joked.

The only downside was that I won't get to see any personal results of the analysis as all the data are anonymised.

But I was glad to have done my bit, however small.  They thanked me heartily and I thanked them more in return.  After all, there is a slim chance that their study could help save my life, or the lives of future generations....