Brexit

Friday 22 February 2019

Customs Union. Backstop. Norway model. Switzerland model. Canada model. Norway-plus. Ukraine Style. Turkey option. ERG. No deal.

What does it all mean?

I don’t really know and, like many people, I don’t really care.

The triggering of “Article 50” two years ago, setting in motion the UK’s divorce from the European Union, roughly coincided with my diagnosis of Parkinson’s. My mind was, understandably, preoccupied with things other than politics at that time.

But curiously I’ve lived in something of a news vacuum ever since.

Clara often says to me, “did you hear about blah blah blah today?” and I respond with a blank look. Sometimes I listen to the radio in the mornings but I zone out of most of it, don’t read the papers and don’t check much news online, other than business-related stuff that I need to know for work. The time I would have spent taking in the daily news is now diverted to reading research papers, posting on forums and writing this blog.

Having my condition means that current affairs, yesterday’s football results and who got voted off Strictly don’t actually matter any longer.

Except that they do matter.

Having an awareness of what’s going on in the Six Nations rugby, or the Champion’s League, or Love Island is something to talk about at work the next day. These are shared experiences that, however transient, bind us together.

To chat about stuff, to gossip, to have an opinion on the trivia du jour is to be human. And, in this, I have lost my way over the past two years.

I suspect Brexit will rumble on for a while yet. Which gives me plenty of opportunity to re-engage in the daily chat. Along with Formula 1, the latest Netflix originals, and the big cat stories that Clara sometimes emails to me. And perhaps these things will give me an edge in the long psychological battle with Parkinson’s Disease…

A family affair, part 5: the plot thickens

Monday 4 February 2019

It had been over a year since I had spoken to The Professor, and once again I today met with one of his team at my six monthly appointment, rather than the man himself.

Rachel was a new face to me but, as far as I could work out, another long-sanding member of his seemingly large research group. Though initially slightly hesitant at the pleasantries of introducing herself and shaking hands, she was earnest in her questioning and note taking.

We talked about my progress over the last six months: largely stable but with a deterioration over recent weeks. Her clinical tests reinforced my view that, after 18 months on the same medication, it was time for an upgrade to my regimen. (Indeed, I am having quite some difficulty typing this text…).

But before writing me a new prescription there were the all-important genetic test results to discuss.

For over a year since I gave a blood sample to have my genome sequenced, I had been looking forward to some answers. An explanation as to why four generations of my family have been afflicted by this incurable disease. A definitive genetic marker that my daughter and my siblings can be tested for to enable them, if they so wish, to make life and lifestyle choices if it turns out they are at risk.

Rachel cut quickly to the chase.

“Your 100,000 genomes results are all negative.”

I no doubt had a surprised expression which prompted her to explain in more detail.

“We tested your DNA against all known alleles that are associated with an increased risk of Parkinson’s and you don’t match any of them. But given your family history – with someone affected in every generation – it’s very likely there is a genetic factor. We’re now going to move onto a research phase to try and identify whether you are carrying a mutation not yet described. It could take some time.”

I was her last appointment of the day and we chatted for a long time, nearly an hour: about my family history, the contribution of my mother and uncle had made by also giving blood samples to the research programme, and my own experience with Parkinson’s. Evidently I am doing well. Over four years since symptoms first became clear, I’m still functioning pretty successfully and still on a low dosage of a single drug. There is a lot of headroom in the future to boost my medication.

Towards the end of our time, The Professor popped his head around the door for a few minutes to discuss my medication. It was good to chat to him after so long.

We agreed to keep my dopamine agonist the same (given all the cardiac issues I experienced in 2017) and introduce a small amount of levodopa.

He sounded enthused at the possibility of discovering a hitherto unidentified genetic variant linked to Parkinson’s. Perhaps some kudos for him and his team.

And I must admit, despite the initial disappointment of not having an answer to the genetic mystery, I too had a brief frisson of excitement at the thought of being at the forefront of medical science.

Unfortunately, I may now be waiting another couple of years for answers – if indeed the research team is able to find any answers.

In the meantime, the levodopa will give me a boost. But it is a boost that will be temporary as the slow death of my precious dopaminergic neurons inexorably continues.