This morning I met up
with a group of complete strangers who all have two things in common: they
suffer from Parkinson’s and they are under 60.
There are many
Parkinson’s networks and numerous events across the country but these are
mostly aimed at elderly people and tend to meet mid-week. The group I went to see at a café in central
London was for younger sufferers, many of whom still work and therefore can
only hook up at weekends.
The first people were
about 20 minutes late whereas I was on time so I had some embarrassing moments
wandering round asking people if their name was Anne, the organiser of the
group. At one point I even befriended a
group of 50-something women who seemed to be old friends, and sipped my coffee
with them whilst keeping an eye out.
When the group did
start to congregate, somehow it was obvious who they were and I went over and
introduced myself. Aside from more overt
signs of unusual movement that I saw in some of the later arrivals, there is a look
that Parkinson’s people seem to have. I
think it’s a facial expression that somehow lacks emotion.
In all I stayed for
nearly three hours and chatted to perhaps a dozen people. It was both an uplifting and depressing
experience.
There were standard
questions that were both posed and answered.
When were you diagnosed? What were your symptoms? How long did you have
symptoms before you were diagnosed? What medication are you on?
I asked lots more questions
too. How does your husband/wife deal
with it? Do you have any advice for
someone recently diagnosed? How has your
disease progressed? Which hospital do you
go to?
I learnt a lot and
many people made the point that they get more advice from sharing experiences
than from visiting their neurologists every six months who do little more than
fiddle with their prescriptions.
It was a diverse group:
male and female, thirties to fifties, black and white, employed and unemployed,
parents and childless, gregarious and reserved, posh and working class. Parkinson’s doesn’t discriminate.
There were some very
positive aspects. There were two women
who were five or six years in who looked very well and were leading
pretty full lives. I’ll be happy if I’m
like that in five years’ time, I thought. There were a couple of friendly men
on my wavelength living not far away from me so we swapped contact details and
made a tentative agreement to meet up for a drink in May.
But overall it was
depressing. For the moment I feel pretty
good on my drugs, but there were people only a few years ahead of me who seemed
to have much more severe symptoms, who were no longer working and who appeared
to be struggling to cope. And there were
a couple of older men who, if I am honest, looked pallid and dishevelled. The other thing I gathered was that even
those who were doing well suffered from fatigue most days and often needed
afternoon naps.
For me personally
perhaps the biggest challenge about Parkinson’s is the varied progression and
not knowing how it will develop. As
someone who likes to plan and be in control I find this difficult. I heard stories about changes of medication and
cocktails of drugs to keep up with the inevitable advancement of the disease, but each one different.
Will I be as sharp as a razor and still looking great in ten years’ time or unable to work in a year's time? There is simply no way of knowing.
