Dad's disease is like a rip, and it's pulled mum out to sea too

April 9, 2018

One of the first words that left my mouth was ‘dad’. Now, more than two decades on, I can’t help but notice our relationship flip. Dad’s voice is beginning to diminish; I have to help him speak.

Mum and dad met as surfers in the ’70s.

There’s this photo frame at home with two photos, dad on the left and mum on the right. They’re at the beach, waves in the background, an overcast sky.

Dad is skinny in a singlet with brown curly hair, brown eyes and very tanned skin. Mum is in blue flared jeans, freckly with wavy hair and streaks of blonde from the lemon she’d squeeze through it before going out in the sun.

When they first started dating, they’d meet up and surf together.

My dad, Barry, once told me:

“I liked the feeling of being free. Nothing but water around you. The exhilaration of catching a wave from a long way out and riding it almost to the shore. You tend not to worry about anything else but the next wave.”

Dad said one time, he met mum for a surf and she laughed at him when they got into the water. He’d had a shower before he left home, soaped up his armpits and forgot to wash it off.

These days, mum and dad never go to the beach.

The first symptom dad noticed was his arm shaking as he washed out our budgie’s water dish in the laundry tub.

I was a teenager when he was diagnosed with Parkinson’s disease.

I didn’t really know what it meant for dad because he seemed fine, and medication managed his symptoms well for the first few years.

Dad went on with life as usual. He had just started an early retirement, and spent his days working on building projects around the house.

He built the house I grew up in — and where mum and dad still live — 40 years ago. It was the first house on the street when the suburb was mostly just clay, rocks and bush.

After his diagnosis, he started building a ramp from the driveway to the second storey of the house.

“It’s not a death sentence, it’s just a disability,” he said.

I finished school and university, left home and moved away. But each time I came back to visit he looked different.

One time I surprised my parents with a visit home, but when dad opened the front door I got the surprise.

“His hair is white! When did it turn white? He looks like he’s aged so much in the past few months,” I remember thinking, in that moment.

Dad started walking more slowly, having trouble using his hands, losing his facial expressions. His voice was fading, his posture was more and more stooped.

These are all symptoms of Parkinson’s disease.

I remember as kids we used to go on family holidays up to the Gold Coast and spend every day at the beach.

Once when I was nine we went to Hawaii, rented a car and drove up and down the coast to see all the famous surfing beaches.

Now, the retirement plans mum and dad had for travel and beach trips around the country seemed less and less likely.

I remember a conversation my sister and I had once, about her struggling to differentiate between what is dad’s Parkinson’s and what is his personality.

It’s not until I start listening back to cassette tapes my dad and I recorded throughout my childhood that I can hear that he was once a different person.

He had this big old recorder you could plug microphones into with needles to measure the levels.

He recorded us when we were really little on old-fashioned silver microphones we weren’t allowed to touch. When I was a bit older, I’d interview him for my pretend radio shows.

“Welcome to the show, Barry! What are you up to on this lovely evening?” I’d say.

“I’m just taking a break from my fans to have a chat to you tonight!” he’d reply.

But the voice coming through the speakers now belongs to someone else; someone confident, capable, a larrikin.

It’s then that I remember how much has changed.

Mum says dad is just a shell of a person he once was.

My dad used to take me and my sister down to the beach all the time when we were little.

Our favourite local beach was a little-known one. Not many people went there because the sand was covered in seaweed and bluebottles, and there were lots of jagged rocks.

We would play on a big, old swing set and climb a cliff above the rocks up a dirt track. We’d pretend we were stranded on an island, look out to sea for ships carrying pirates, and entertain ourselves by making hideouts from branches. We’d find sand dollars and seashells, walk out onto the rocks to peer into the rock pools, dig holes and build moats for our sandcastles.

Dad was the strongest and could dig the deepest and most effective moats.

Dad had answers for all of my many questions. He loved spending time with us, being silly with us, playing games and singing. He knew we wouldn’t be that age forever.

“I wouldn’t have missed it for quids,” he said.

Now, 10 years on from Dad’s diagnosis, he and mum rarely leave the house.

Dad can’t drive anymore — in fact, he can’t even leave the house to go for a walk since he had a fall a few years ago.

Now, he can’t walk at all without his medication. He can’t walk on the sand, let alone surf in the waves. He has to crawl to bed at night.

When I take dad out in public, like to a doctor’s appointment, people see his difficulty walking, his stooped posture, his expressionless face, and don’t see much more.

They don’t see the person underneath the Parkinson’s.

He still likes to chat and joke with people, but people aren’t patient enough to listen to his quiet voice, wait for him to put together his thoughts and hear that he has something to say.

Dad will sometimes ask someone a question and they’ll direct their answer to me.

It’s easier for mum and dad to just stay home.

Mum now gets anxious leaving the house and will sometimes go weeks without even stepping foot outside. Their friends and family have slowly dwindled and my sister and I are two of the only people left in their lives.

It’s like their whole world has been caught in a rip, and mum won’t let go of dad, so they’ve been pulled out together.

They haven’t been to the beach in years.

Their pool has fallen into ruin, turning green and filling with moss, attracting wildlife into the backyard like goannas, bush turkeys, birds and frogs.

It’s something I try not to look at, even though it’s hard to ignore.

I wonder if the neighbours get curious and don’t want to ask the question because they know a sad story will be the answer.

Mum and dad are both pale now.

Dad’s hair is white and there’s not much of it left. Mum’s freckles have faded, and her hair is now streaked with grey and white instead of blonde.

Dad still works on his building projects at home, much slower now. He just finished working on the downstairs bathroom.

He installed a handrail in the shower so he won’t slip and fall. And he put in a detachable shower head so he can wash under his arms.

At 61 and 70, I think my parents are too young for this to be their lives — never to go in the waves again or even dip a toe in the water.

But dad tells me: “I’ve had enough life experiences to keep me going.”

They say they’re happy just to have the memories, and each other.

And when they look out the window of their house they can see the ocean on the horizon.

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