parents' experience
Fatherhood and Parkinson's
The only ones that were important were my daughter and my son
Paul Martin, a father of two from Bedford, UK, was diagnosed with Parkinson's disease when his first child, Lucas Max, was 18 months old. Paul describes his emotional journey facing the diagnosis as a father and shares a poem that he wrote after the birth of his second child, Hattie May.
The date 24 April 2004 will be etched on my mind forever. I was 33 years old at the time and life was good. I had just started a new job, I was living with my partner Melissa, I had been blessed with a beautiful little boy, and I was relishing my role as a relatively new and slightly naïve father. My son Lucas Max was 18 months old and I can say without doubt I had never been happier.
My world collapsed
That's when my perfect world collapsed around me. I had been admitted to hospital two days earlier because I had taken a funny turn at work and it raised enough concern in my mind that on my way home I stopped in at the accident and emergency department of the local hospital.
I had been having slight problems prior to this with the dexterity in the fingers on my left hand and slowness of movement in my left arm, but had not been too concerned; I just thought that I had slept on it in a funny way or maybe even trapped a nerve. Nothing could have prepared me for the diagnosis that was to be delivered on that fateful day: “Mr Martin, you have early onset Parkinson's disease”.
I shut out the diagnosis for six months which led to a serious bout of depression. When I was later referred for counselling, I was told that writing down how I felt would help me start to face my condition and also help the people close to me understand what was going on in my head. I started writing poetry which was later published.
Parental worries
We were on holiday when I found out that Melissa was expecting another baby. Lucas was only two and we had not been planning to extend the family in the immediate future, so this news came as a shock. After I received my diagnosis, we had discussed whether we would have another baby, and although we knew we wanted a sibling for Lucas there was always an element of worry about having more children.
One of my worries when I was first diagnosed with Parkinson's disease (PD) was whether my children would ever feel embarrassed by me. Would my son want me at the sideline cheering him on or would either of them be embarrassed to invite their friends round for tea? I always wanted my son to see me as his hero and be proud to call me Dad.
I wrote the poem “Another baby on the way” to articulate my feelings about the birth of our second child, our princess, Hattie May.
Another baby on the way
It was at the end of a beautiful day
We were all having a lark
Rubber rings and water slides
Having fun at the water park
It was then I first found out
There was something you had to say
That was the first time you told me
Another baby was on the way
You hadn't told me sooner
'Cos you knew I'd be a pain
You knew I'd start to worry
And I'd drive you all insane
At first I was so jubilant
With a smile from ear to ear
But once the news had sunk in
The excitement turned to fear
How would I manage this time?
Now I'm diagnosed with PD
Life was a lot simpler
When we had our first baby
Will I be able to change a nappy?
Can I get them ready for bed?
Will I be any kind of father?
Were some of the thoughts inside my head
The next seven months went so fast
And I could never be prepared
The thought of someone else to love
I've never been so scared
I'll always remember the day she arrived
The 3rd of January 2006
The fear had suddenly disappeared
I look so happy in the pics
I was blessed with a daughter
On that winter's day
The day I was sent my princess
The very beautiful Hattie May
But the smiles didn't last
And it wasn't very long
Before people started to realise
That something was very wrong
I started to resent her being here
She was getting in the way
I just wanted my time with Lucas
“Post-natal depression”, I heard someone say
I lost my mind and left
Just left it all behind
Sitting for months in my flat
Going out of my mind
One night I was dreaming
And the Devil came to me
And offered me a deal
He'd swop my children for my PD
When I woke up that morning
And lay there in my bed
I reflected on my dream that night
And what the Devil said
I realised that morning
I wasn't the important one
The only ones that were important
Were my daughter and my son
I went back to sleep to meet the Devil
I had something I had to tell
Swop my children for PD?
Lucifer you can go to hell
I'll love you every single day
And make you proud of me
And if ever given the choice again
Then I would always choose PD
I'm so glad to have you Hattie
And I want to shout out loud
That you're funny, cute and beautiful
And you make Daddy so very proud.
Copyright Paul Martin 2008.
Another baby on the way is extracted from No Rhyme or Reason: yesterday, today, tomorrow by Paul Martin. The article is based on edited extracts from the book. Reproduced with kind permission of the author.
No rhyme or reason: yesterday, today, tomorrow by Paul Martin (with foreword by Jane Asher). 2008, Devon, UK, Edward Gaskell Publishers. ISBN 189854699 1 Price: £4.99. Available from www.noreasonforparkinsons.com
All profits from the sale of the book will be donated to The Parkinson's Disease Society (www.parkinsons.org.uk).