Time to speak out on the illness Robin Williams kept secret

I have learnt over the past few years that Parkinson’s disease knows no
boundaries. It is a condition that can affect anybody, at any time. But even
still, I was as shocked as everybody else to hear that Robin Williams was
suffering from its early onset before he took his own life. It was the same
when Billy Connolly disclosed he had been diagnosed with the condition
earlier this year.

It may sound absurd, but you grow up watching and being entertained by these
extremely talented people and think they operate on a different level to us
all. Of course, it doesn’t work like that at. Whoever you are, this
condition can creep up on you, just like that.

My own diagnosis, on a lovely sunny September evening in 2007, came similarly
out of the blue. I was working as a banker for HSBC, living with my wife of
more than 30 years, Caroline. Our two wonderful daughters were at university
ready to embark on their careers. There was no stress in my work life or
home life, yet I had started to feel strange symptoms.

I had trouble getting my suit jacket on over my left shoulder, and was
starting to develop a tremor in my left hand. At night, I suffered from
muscle cramps, disturbed sleep and vivid dreams.

I knew something was wrong but remained in denial. Eventually, I decided to go
to a GP who suggested I visit a consultant neurologist. Within minutes, he
had identified it as Parkinson’s. I remember the maelstrom of emotional
worries and pictures that flooded through me almost like a film in fast
forward. Parkinson’s? None of my friends had it, nobody I knew bar the odd
elderly relative and that was put down to old age. I was in my early fifties.

I understand why Robin Williams’s family say he wasn’t yet ready to share his
diagnosis with the outside world. To be honest, it is devastating. There I
was, fit, sporty, very healthy, and suddenly being told I have a condition
that, while treatable, remains incurable – and only going to get worse.

The support of my family had a huge impact on how I dealt with the diagnosis.
I remember a note my older daughter Natasha wrote to me from university
shortly afterwards when we were all struggling in our own ways to come to
terms with the news.

She wrote: “I know you know that we are always there for you, and will love
you unconditionally, but in reality we cannot fully understand what you are
going through. I will love you for ever.”

I resolved to approach it positively. Parkinson’s is a progressive
neurological condition and even if there is no life expectancy set for
people who suffer from it, the symptoms get worse and harder to treat.

But the way I saw it I had two choices: to either hide away, feel utterly
sorry for myself and expect the world to do the same, or think of every
single way possible to confuse the condition, confound it, and even beat it
at times.

After my diagnosis, I have made it my stated intention to do all I can for
Parkinson’s UK and raise funds to help beat the condition. Since I started
volunteering for the charity, I have trekked 95 miles in the Sahara desert,
climbed 4,000 feet in Nepal, and, in 2012, trekked 85 miles in the desert
through Jordan.

But obviously, at the same time, things have become harder. I’ve noticed that
I am a lot less confident, more hesitant and, I’m afraid to say, more
inclined to be a bit moody at times. I realise in conversation I don’t have
quite the repartee I once did. My voice tends to fade away, as well. I’m
beginning to lose my sense of smell and gently – and I know that it is a
dreadful thing to say – the days have started to feel a little bit longer.

Parkinson’s is a very personal condition. Some people are happy coming to
terms with it. Some are slower coming to the realisation and acceptance that
they have a condition that is not going to go away.

The one positive from the tragedy of Williams’s death is that this may
encourage others to open up about the condition. I believe that if people
who have Parkinson’s share what works for them, it might encourage them to
push themselves, do things, and realise that life hasn’t finished.

Of course, my fight so far has not been easy. There are times when we have
laughed at it, times when we have all been lost in silent reflection about
the future. There have been compromises, lots of them, and I accept I may
not win the war. But, I’m going to make damn sure I win a few battles along
the way.

For information or support, call Parkinson’s UK’s helpline on 0808 800 0303
or visit parkinsons.org.uk