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Our Superficial Siderosis Community: Meet Fiona Parkinson

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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.

10 Replies to “Our Superficial Siderosis Community: Meet Fiona Parkinson”

  1. Linda Young

    Fiona, did you get approval for insurance coverage for the Ferriprox? Mine won’t cover it because SS is not an accepted diagnosis. I was told the medication would require 3 pills a day at $38.00 per pill. There is no way I can pay that so I just get along the best I can.

  2. Maggie Dittmeier

    God Bless Fiona, surrounded by family will be so helpful going into the future. I’m a bit older @ 68; I went many years trying to find out what was wrong. 2003 neck surgery , is the cause they are saying , since my brain MRI was done in 2017.
    My Grandmother was born in Glenmorganvale, hopefully I spelled that correctly, late 1800’s.
    Are they telling you that tonsillitis has something to do withwhy you have SS?

    • Fiona Parkinson

      Hi Maggie, they still don’t know what has caused my ss. I don’t have a history of any trauma or accidents. They don’t think it’s from the tonsillitis, but after I got that I was dizzy all the time and that’s what prompted the tests that found the ss. I hope you’re keeping well xx

  3. Lesley Wilson

    You have an enviable lifestyle, Fiona.
    But you dont say what species you won Best Exhibit at the agricultural show with? Was it a bird or was it a lamb?
    I find my dogs and cats keep me going, after all they have to be fed, watered and exercised. My dream was to have a hobby farm.
    Good luck with the Ferriprox, we’ll hear how you get on.
    Best wishes xx

    • Fiona Parkinson

      Hi Leslie, the best exhibit award was for a basket of preserves! We have dogs, sheep , horses and chickens. Absolutely agree with you that they help keep us going.
      In Feb I’ll have been on the Ferriprox 12 months, I’m hoping the scan then may show an improvement. Fingers crossed xx

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