Parkies

Wednesday 21 November 2018

We call ourselves Parkies or PWPs (People with Parkinson's).

And we pop up everywhere.

Since I first went to a coffee morning for local Parkies not long after my diagnosis, I have been gradually getting to know other people with Parkinson’s. I now know several within walking distance of my home in South East London, some of whom I would call friends.

I’ve so far organised three lunches for the locals and there is starting to be a regular crowd.

We are a mixture of ages, from forties to sixties, with some of us still working and others retired. I am the most recently diagnosed and, at the other end of the scale, some have been living with their condition for a decade or more.

There is also an assortment of wives and husbands, evidently very understanding and supportive: despite our disease most of us are very lucky to have other halves who appreciate what we are going through and are there for us when we need support.

I could describe everyone’s background. For example, one person designs film sets and another is a retired accountant. But professions aren’t important; what binds us is our shared experience of living with Parkinson’s. And that is an ineluctable leveller.

To illustrate what I mean, take Gerald, the newest member of our lunch club. I had met him briefly at another Parkinson’s event a few months ago and had discovered he lives close by, so I invited him and his wife along to a lunch last weekend.

If I’m honest, Gerald was hard work. Softly spoken and somewhat distant (because of the you-know-what) I struggled to make conversation with him. I persevered for a while, learning that, now in his early seventies, he had been diagnosed about six years ago. I also found out that he goes to a local choir and various exercise classes; none of which I do because they are all mid-week when I’m at work. But eventually I gave up straining to hear him and turned to others at the table. I caught up with the usual crowd on Deep Brain Stimulation, stories about children, the merits of local restaurants and so on.

Towards the end of the lunch I overheard Gerald mentioning his alma mater. It turned out we went to the same small college (a hundred students in each year – what were the chances?) and from there he suddenly opened up and we had an extraordinary discussion.

Gerald was something of scientist and held court giving his views on everything from Stephen Hawking to the discovery of the Higgs Boson, and Artificial Intelligence, in which he had a PhD. He was formerly an MP in a Commonwealth country. And he was about to publish a book on corruption in politics.

Despite our age difference it seemed like we had a lot in common and I gave him a warm handshake as we left the restaurant. I figured he would be an interesting person to get to know a little better.

Then, the most remarkable fact of all I discovered when I looked him up on the Internet after returning home. He had a long entry on Wikipedia.

Only 4 years ago, whilst already suffering from Parkinson’s, not only was he an MP, he had been Prime Minister of a country of nearly 20 million people, and his wife the “first lady”.

But here’s the thing: none of that matters.

Regardless of who we once were, now we live our lives in the shadow of a disease that is causing our brains to slowly degenerate. We are all on our individual journeys, and we all have to come to terms with the condition in our own ways.

What matters is not what we did or didn’t do in the past but how we deal with the present and the future. What matters is how we conduct our daily lives and interact with those closest to us. What matters is, despite our shared misfortune, are we still decent, civilised people?

So the erstwhile Prime Minister is most welcome to our little lunch club, but no more or less so than the doctor, the IT professional and the stay at home mum.

We are all Parkies now.

Sex and Parkinson's

Friday 2 November 2018

I thought that title would get your attention. It will be interesting to see how many hits this particular blog post gets over the coming months.

But I am being a bit disingenuous. What I really want to talk about is the role of gender in Parkinson’s.

It turns out that Parkinson’s is slightly different between men and women. There are three main differences:

1. More men than women have Parkinson’s, by a ratio of about 2:1
2. Women on average have later onset: the average age at diagnosis is about 62 for women and 60 for men
3. The initial symptoms are different. Women are more likely to have tremor as one of their first symptoms whereas men are more likely to get rigidity of movement.

My own family experience echoes these general features. My mother was considerably older than me at diagnosis: 69 compared to my 47. She had early tremor in comparison to my stiffness and bradykinesia (slow movement). And fortunately, my sister, who is two years younger than me, is not yet showing any signs of disease; long may that continue.

Why are there these differences between men and women?

The short answer is nobody knows, but it is thought that the female hormone oestrogen plays a role.

A few studies have indicated neuroprotective effects of oestrogen on nigrostriatal dopaminergic cells (the ones that are dying in my brain).  The oestrogen hypothesis is further backed up by the fact that the number of children, age at menopause, and duration of fertile life are all correlated with later age at onset in women. My mother had six children, so perhaps this goes some way to explaining why her onset was so much later than mine.

Other studies have proved inconclusive however, and if oestrogen is neuroprotective, the exact mechanism for this is unknown.

Could oestrogen, or something similar be used to treat Parkinson’s?

Well, probably not. It seems that although onset of Parkinson’s is a little different between the sexes, once a person has confirmed Parkinson’s, the progression is much the same. In other words, by the time you’re diagnosed it’s too late. Perhaps 90% of the dopaminergic cells are already gone so a treatment that slightly slows down depletion of the remaining cells would only have a small effect.

This is borne out by my own observations. For example, I went to a coffee morning with my local Parkinson’s group last weekend: there were five men and three women (so roughly 2:1) but there was just as much variation in the range and severity of symptoms across the two genders.

There is clearly something significant in the difference between men and women. If you were known to be at risk of Parkinson’s due to a genetic factor then a treatment that could significantly delay onset might be well worth taking. Though it’s not a simple case of men swallowing oestrogen tablets to protect themselves. For one thing, that has side effects of shrinking testes and growing breasts…

Nevertheless, it seems to me that the gender question could be a fruitful line of research, but there have been relatively few studies on the topic.

As for the impact of Parkinson’s on one’s sex life (which, go on, admit it, is the real reason you clicked on this post), well… some things are best left private. But I’m sure if you go back to Google or Bing, you will find plenty of other references to that particular topic…