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.
When 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.
Fiona won her petition to begin chelation therapy in February 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.
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, Australia.
Hello Fiona, My name is Christine Murphy, I was George Murphy’s wife. Sadly he passed away last July 2021. His weight dropped to 43kg, and realistically I think he had ss for at least 20yrs. Lots of increasing body pains, vision problems, balance imparement, hearing loss, swollowing disorders, badder and bowel inconitance, night blindness. In the end, it was a blessing that he passed away. His Dr was useless and offered no help, so we did the best we could. Thank you for the mail
21 Moonbi Street, Scarness Qld 4655 Australia
Hi Christine, I’m so sorry to hear of George’s passing. It sounds like he was having a very tough time towards the end. Finding help and support through informed doctors is something I think all of us with SS struggle with. Hopefully through raising awareness through the medical community we may be able to improve that for others with this condition in the future . My thoughts are with you and your family and once again I’m very sorry for your loss . Kind regards Fiona
After my PD diagnosis, i was on Carbidopa and Pramipexole for two (2) years, as the disease progressed my symptoms worsened, with my neurologist guidance i started on natural PD TREATMENT from Mayaka Natural Clinic (www. mayakanaturalclinic .com). The treatment was effectively for my Parkinson’s disease, most of the symptoms simply vanished within the first 3 months on the treatment, i feel better now than I have felt in years, i can feel my strength and the tremors are gone. My neurologist was very open when looking at alternative medicines and procedures
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.
I will ask Fiona to email you directly.
Hi Linda, I am living with Superficial Siderosis and it took over a year for my insurance to cover the Ferriprox. I was taking 3 pills a day. Well my insurance no longer cover the medication as it was over $7,000 USD a month (outrageous). I am new to the website and will be posting my story soon.
great to meet you, Fiona. Well done.
Thanks so much Nancy x
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?
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
Keep fighting Fiona! All the best!
You too Rhys, hope you’re feeling ok after the surgery xx
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
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