We call ourselves Parkies or PWPs (People with Parkinson's).
And we pop up everywhere.
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.
