Personal Stories

A Year of Struggle and Change

A year of struggle and change; that’s what it has been for Gary, our family, and myself. Emerging from the isolation of the Covid lockdown, we were buoyed with optimism. A ray of hope had sparked when Gary’s neurosurgeon successfully remedied his active bleed that had hung over us for years. Meanwhile, I anxiously awaited news of my superficial siderosis natural history study grant proposal.

However, after almost two years of avoiding crowded spaces, Covid hit us when we ventured out for the first time in July. Three weeks later, after two alarming falls on the same day at home, Gary could not walk by morning. A visit to the hospital required the aid of two nurses to help carry him from the truck. At the hospital, alarming numbers painted a grim picture – an INR of 8.3 and a white blood cell count of 32. His body had a bruise that snaked from his mid-ribcage down to his calf. Despite his suffering, no source of infection was identifiable except for two massive hematomas deep in his hip. His health was further complicated by a lingering positive covid test, making his admission restrictive and stopping me from staying with him.

Despite my persistent calls, I was kept in the dark for five grueling days about Gary’s health. Completely deaf now, he spent 15 days in hospital isolation, losing substantial muscle tissue, which endangered his blood pressure even when he tried to sit. I battled to get him home, fearing their plan to send him to a skilled nursing facility would break his spirit.

Upon his return, our bedroom became a hospital room. His physical therapy journey started with small goals: sitting in bed, sitting on the edge, and eventually standing. A rigorous high-protein diet was enforced to facilitate the rebuilding of his lost muscle tissue. He can still not carry out basic tasks like bathing or dressing and heavily relies on a wheelchair to move around when outside the house.

Amid this turmoil, the September superficial siderosis month flew by in a haze. My focus on writing waned. Thankfully, Rhys and Fiona kept our awareness campaign afloat. Our niece Tanya successfully hosted a trail run fundraiser even without our involvement. All their hard work was nothing short of phenomenal.

Gradually, Gary regained enough strength to walk throughout the house and even as far as the mailbox under the guidance of his physical therapist and his walker. A sudden bathroom fall, resulting in a fractured elbow, paused his progress. The lack of mobility led to a further loss of muscle tissue, necessitating the start of in-home occupational therapy for his arm. By winter, his personality began to shift, and the toll on his cognitive abilities was more noticeable. His long-term memory started fading, and he suffered from constant vertigo. Comprehensive testing was conducted to ascertain whether his dizziness was brain-based or peripheral. Due to the ongoing neurogenic bladder issues, his catheter was made permanent.

The man Gary once was, is no more.

We occasionally see glimpses of his former self through his humor, but the man our family knows is permanently changed. He suffers from extreme anxiety if he can not see me or if I leave the house for any reason. Completely deaf, we are forced to use a phone app to communicate. He can’t recall birthdays or where we live; he gets lost finding the bathroom or our bedroom. He visits with long-gone family members or sees people who aren’t present. This morning he asked if I’d talked to my dad lately. I told him no, but I would try to soon. My father has been gone for 27 years. Unless it’s something dangerous, I’ve learned to go with it. I’ve installed a large whiteboard on our bedroom wall, meticulously noting the day, date, appointments, and daily tasks, hoping to aid his memory.

I backed off from some social media groups for much-needed peace of mind. I’ve found solace in writing the protocol for our third study. It’s been a comforting endeavor, feeling I am contributing something valuable for the greater good. It’s been a long eight-year journey since my first blog post, documenting Gary’s unusual symptoms of smelling non-existent odors and the gradual decline in his hearing. As I reminisce over our initial excitement of finally receiving a diagnosis and the stark realization of the scarcity of available information for patients and doctors, I’m reminded of how we’ve fought our battles mostly alone since 2015.

Dr. Levy’s pilot trial deferiprone study as our sole guiding light taught us how to advocate for Gary, even while his active bleed persisted. His chelation therapy kept his symptoms advancing at a glacial pace for three years, his audiograms showed slight deterioration, and his balance issues were manageable with a cane. We still found joy in traveling, camping, and living life at a slower pace.

This website has become a treasure trove of superficial siderosis knowledge over the last eight years, a testament to our journey. It encompasses all we’ve learned, the information we’ve gathered, and the stories of our fellow community members. No matter the end of our journey, I remain hopeful that we’ve managed to help a little.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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  1. Thank you, thank you, thank you…. You sharing your experience has really helped me not to feel so all alone.  Knowing what the future may hold for us somehow makes me appreciate each and every day.  I owe that to you.  The work you have done for the whole SS community has been incredible and greatly appreciated.  

  2. Thank you so much for sharing your difficult journey. I cannot tell you how thankful I am to hear about your experiences, as difficult as they may be. I sometimes think of myself as an optimistic realist and therefore I do as much research as I can, and hold onto hope. I doubt that you were aware of how beneficial your writing is. I don’t know what we would’ve done without you! Thank you so much.

  3. Thank you so much for sharing Garys and your story. I was diagnosed with Superficial Siderosis in 2018 and it’s been exactly as you said, a slow process. My Doctors aren’t sure what to do, and most people in the health field have never even heard of it. I find myself having to educate people while I am there for tests. I appreciate this site so much. It has been so great to know that I  am not alone. I am having back surgery soon to try and seal off the CSF leak to slow the progression of the disease. Anyway I just wanted you to know how much you both mean to me. Thank you !!!

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