Our Superficial Siderosis Community: Meet Fiona Parkinson

súper siderosis community members
Share:

Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome young men. Fiona is also battling Superficial Siderosis.

I first noticed signs in April of 2015. It came on suddenly after getting tonsillitis. I was suddenly dizzy and off balance with neurological symptoms. In the space of a couple of weeks, I went from an ordinary mum, working part-time cleaning and working our hobby farm, to having to walk with a stick, but with no idea why.

FionaWhen three days of preliminary testing in the hospital provided no answers, Fiona began a seven-month battery of multiple CT scans, five MRI scans of her brain and spine, and a Cerebral angiography. Vision, balance, and hearing test results suggested an undiagnosed neurological disorder such as Multiple Sclerosis or early Parkinson’s might be the cause.

When her ENT advised consulting a neurologist, Fiona collected her previous MRI results in hopes she could avoid duplicate testing. In a story familiar to many of us she happened upon the life-changing phrase ‘extensive superficial siderosis.’ Fiona and her husband made an appointment to see a neurologist.

My husband and I went off to the appointment where it was confirmed that I didn’t have MS, I had SS-Superficial Siderosis. Many doctors have never heard of superficial siderosis, let alone seen or treated it. It is an incredibly rare disease. Although it was explicitly mentioned in my MRI report by the radiologist, it was dismissed as insignificant by the doctors most probably due to its rarity.

whittleseaFiona won her petition to begin chelation therapy in February of 2018, and early results seem promising. A physiotherapist decided vestibular treatment might improve Fiona’s balance and has proven helpful.

Fiona continues to remain active even though some days are worse than others. She hasn’t let superficial siderosis stop her. Winning Best Exhibit at this year’s Annual Whittlesea Agricultural Society competition, she still maintains a steady albeit slower pace. A beautiful example that life continues to move forward as long as you’re willing to battle.

 

lamb bird life birdlife2

 

 

 

 

 

 

Fiona Parkinson is a wife, mother, and home preserving enthusiast. She and her husband enjoy raising their sons and living a grand life in Victoria, Austraila.