This last few days have revealed three pieces of wonderful news.

The first, you are aware of: ‘that the tumour remains too small to measure.’ My brilliant Oncology team still cannot find it.

The second? I do not have Parkinson’s. Over the last few months, as my twitching, wobbling, bobbling and twobbles became a part of everyday life and started to grow in severity, there was a thought developing that these twobbles, when linked with my worsening ability to find words, to formulate words in speech, weakening muscle function and coordination of motor function, might indeed be highlighting the early stages of the development of Parkinson’s. So this last Wednesday I had a series of very simple tests done by my most excellent neurologist who was able to confirm immediately that I do not have Parkinson’s. Allie and I breathed a huge sigh of relief.

But then came the question: so what is it that is making my Parkinson’s-like symptoms worsen? Almost all the symptoms correlate perfectly with my diagnosed Neurological Dysfunction yet if the treatment has now finished fizzing in the brain, why is it that my neurological symptoms are progressively getting worse?

Allie had done a brilliant piece of detective work and managed to align the start of the worsening of these symptoms with the start of the introduction of my current anti-seizure medication in order to wean me off the old anti-seizure medication that had turned me into a zombie. This correlation was agreed with completely by my neurologist and he immediately started to review what drugs I had been prescribed to alleviate my seizures with the amusing play on words, ‘Well you have tried, Lamotrigine, Lacosomide and Levetiracetam, so you have tried all the Ls. Gosh you have been through ‘L’ so to speak!’ He then aligned another couple of drugs that he respected and would like to try, but before we went any further I interjected.

I addressed my neurologist, ‘As you will remember I have, for some months now, been becoming increasingly convinced that I no longer have epilepsy. I know that you had continued to see a whiff of epilepsy in my seizures but I cannot taste or smell that whiff of epilepsy. I am convinced that I have now beaten the epilepsy, that the anti-seizure medication is actually triggering the seizures, the twobbles. It is looking increasingly likely that I have beaten the tumour, so is it not increasingly likely that I have beaten the epilepsy? Can I not now test this theory and start, not on another anti-seizure medication, but to reduce my anti-seizure medication to zero to prove or disprove my theory.?’ My oncologist has made it very clear that I cannot fill the big hole left by the tumour, nor repair the scarring left by the treatment, I cannot short circuit the short circuit. I cannot beat epilepsy. But surely it has happened before. It must be possible, no matter how remote, it must be possible?’ My neurologist conceded that he was aware of a couple of cases in which epilepsy had been beaten but that in my case such an event was highly unlikely. I thought that he was going to continue that the risk of a major seizure causing further damage to the brain was too high, just as my oncologist did, but he stopped, placed his elbow on the desk, his fist over his mouth and dipped his head in thought. He looked up at me quizzically over the rim of his spectacles, while I looked at him expectantly with hope in my eyes. He took a deep breath and then looked up, ‘okay but we cannot just stop, we will try to reduce your dose to zero but only very slowly and I need to know as soon as you experience the slightest whiff of an epilepsy.’ I was ecstatic and as I started to babble my thanks and promises, he put his hand up to stop me talking as he scribbled. Then he showed Allie and I the plan and talked us through it. Allie had been very unsure of my desire to prove my epilepsy had been beaten so asked a very sensible question, ‘Should he have a seizure, what would it be like? Would it be weak or strong?’ We both took comfort from the answer that it would be a weak one suppressed by the remaining anti-seizure medication in my system. Full of hope, we took the scribbled instructions, thanked him profusely and left for home via a celebratory decaf almond milk mocha.

The day after I started the first level of reduction, from 100mg twice a day to 50mg in the morning and 100mg in the evening. So far, so good, and as each day passes I grow in confidence that I might well no longer have epilepsy. After all: If God did heal me from my brain tumour, isn’t it entirely reasonable to expect that he would have done the job properly in the first place? Or, if my Balanced Daily Lifestyle which I designed to reinforce the treatment I was being given had indeed helped to cure the brain tumour that could not be shrunk, killed or cured, could it not have also helped me to cure the Epilepsy by reinforcing my attempts to retrain and strengthen my brain by forcing my healthy left side of the brain to take on function from the damaged and dysfunctional right side through Golf, Drama, Music and Writing? That I have not actually had epilepsy since the day that we realised that the brain tumour had disappeared! That the anti-seizure medication had been triggering the neurological seizures!

I know not, of course, the answer to that quandary. But what I do hope and pray is that I have indeed beaten this second beast. This one being epilepsy. Please pray for me if you can and Deo Juvante we might actually manage to make another wonder happen.

Thank you.
Yours aye