I had my first meeting with The Professor yesterday evening
at the private consultation rooms of his hospital in London. Private medical care is very pleasant:
comfortable quiet waiting room, very helpful reception staff, minimal waiting
time and so on. But like flying business
class, the destination is the same whether you travel in the front or the back
of the plane, and you pay an awful lot for a better seat. Fortunately, my work insurance was covering
the £300 for 45 minutes, but they will not be covering any more consultations,
so next time it will be on the NHS.
The Professor is a well built, semi-balding, bespectacled
man, probably about the same age as me.
I felt somewhat over-dressed in my suit and tie compared to his more
casual jumper, but he was friendly and welcoming and I felt quickly at
ease. His generic South Eastern accent
gave little away about his origins.
We went through my symptoms, my medication, my family
history and my state of mind and he repeated some tests on my body like Dr T
had done, plus a few more. Things like
testing my reflexes with a hammer (a test that probably hasn’t changed since
Victorian days), watching me walk, testing the strength of limbs and digits,
and so on.
In some ways I was disappointed not to hear much that was
new to me as he went through the motions of explaining my condition and the
near-term treatment options, essentially telling me that I should continue on
my existing course of medication. He was
very professional about it: sympathetic and considerate without being
condescending, knowledgeable but skilled at explaining things in layman’s
language. I didn’t get much of a sense
of the real person beneath the medical professional but perhaps that will come
with time.
Nevertheless I had come to the right person. Amongst other things he specialises in
genetic causes of young onset Parkinson’s and had recently set up a
study looking at families with the disease. I had brought a family tree with me and he
seemed fairly interested in it. I would
be genetically analysed in due course and perhaps contribute to his study.
On the question of when to tell Rosa, he suggested waiting
until she is 16 or 17 though as I find it hard to keep a secret I may tell her,
in gentle and positive terms, sooner than that.
For genetic screening he said the policy was only to screen adults and
only at their discretion – whilst there are clearly advantages to finding out
that you don’t carry a faulty gene, apparently most people prefer not to know…
Later that evening I officially broke the news to a group of
male friends over dinner, friends that I have been catching up with every first
Thursday of the month for about 25 years.
They were of course surprised but sympathetic and this quickly led to
confessions over sushi and beer about beta blockers and other middle-aged man
medication.
However, I was able to put my diagnosis in a positive
light. The Professor had painted a very
optimistic picture about his and other research, boldly declaring that a
significant breakthrough was likely within ten years. The investment in research from the likes of
the Michael J Fox foundation is substantial and, apparently, there are many promising
leads. I remain slightly less sanguine
that I will be cured (based on the fact that medical science still doesn’t
actually understand what causes the disease) and will continue prepare for a
more pessimistic scenario, but of course I hope that I am wrong.
