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Parkinson's Awareness Day - Living With Parkinson's

The lovely Sian - Primal's eyes, ears and brains behind our research - has decided to share her story about living with Parkinson's and hopefully, encourage other's that although it is a heartbreaking condition, you can still live an active life, filled with adventure and fun...

Today, 11th April 2019, is World Parkinson’s Day. For my Dad, every day is Parkinson’s Day. We learnt of his diagnosis in October 2013, when he was 65. We all cried, and we all feared the future. This was the man who once ran a marathon in 3 hours and 11 minutes; my Dad, the absolute King of Dad dancing; my Dad, who always made time to tell us a bedtime story; my Dad, who walked me down the aisle and gave a heartfelt Father-of-the-Bride speech. What would Parkinson’s do to my Dad?

It took a couple of years for him to find the right dose of medication for his treatment, but combined with effective conductive education (a system of training for people with motor disorders), he and my Mum are still living a fulfilled retirement together. Since his diagnosis, they’ve been on a cruise to New York, visited the Galapagos, Australia, Malaysia, and Israel (and several other countries, too many to list), frequently travel to Spain, and have planned trips to Singapore and America. Their passion for cooking, travelling and exercise hasn’t dwindled since October 2013, it just has to be adapted sometimes.

Parkinson’s isn’t holding my Dad back, but of course, there are things we have to be mindful of, such as making sure there is always somewhere to sit down on a day out, and his medication makes him impulsive and obsessive at times – but I like to think this is my Dad’s passion and zest for life manifesting itself differently these days. He sets himself daily activity challenges, from walking to the high street, to taking the time to do his conductive education exercises to improve his dexterity. Some days his walk is a bit of a shuffle, but he perseveres and carries on walking. Other days, you wouldn’t know there was anything wrong with him. Now more than ever, moving more is crucial for my Dad’s health and wellbeing.

Seeing my parents take extra special care of their own health since my Dad’s Parkinson’s diagnosis is truly inspiring. My Mum ran her first half marathon in 2015 when she was 62 to raise money for their local conductive education centre. There is still so much research that has to be done around Parkinson’s, but a recent study suggests that Parkinson’s originates in the gut and not the brain. This has made me pay more attention to my own gut health: I take a daily probiotic, limit my caffeine, alcohol, sugar and carbohydrate intake, and follow a high-fibre diet. My mum likes to say I am becoming more like her every day: she’s always enjoyed eating seeds and copious amounts of fruit and vegetables! I’m not sure about the half marathon though…

Above all, the way my Mum and Dad have tackled my Dad’s Parkinson’s diagnosis I hope will encourage others facing this degenerative disease that life doesn’t have to stop. 5 and half years later, my Dad is still my Dad. His Parkinson’s hasn’t taken away his love of music, his insane general knowledge, the love of and for his family.

In fact, as I was writing this, I messaged my Mum and Dad to remind me of their travel history, and my Dad’s reply was as follows:

“Malta, Chile, Falkland Islands, New York, Spain !! And more.

Apologies to The Greatest Showman

But:

“We are bursting through the barriers and reaching for the sun
We are TRAVELLERS yeah that’s what we’ve become.
We won’t let PARKY break us down.
We know there are places there for us.
For we are travellers!”

 

So, there you have it, my Dad has Parkinson’s. But he would just say he’s a traveller.

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2 comments

  • Just love your Dad. Both mum and Dad are inspiring folk. Full of fun and love for life! 💕☘️

    Mary Johnson
  • Sian, what a fabulous tribute to your dad … and mum. As a couple who are privileged to be considered their friends and have shared many happy experiences with them over the past eight years,we heartily support your testimony and look forward to many more happy times with them.
    Best wishes and God bless,
    Lorraine and David Latchford

    Lorraine Latchford

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