It’s hard to believe it’s been 10 years since we began this journey in 2014. When we first received Gary’s diagnosis of Superficial Siderosis, we were filled with hope and determination. We were ready to face this rare condition head-on, armed with the optimism that we could manage it effectively. As I sit down to write this final update on Gary’s journey, I find myself reflecting on the immense challenges and small victories we’ve encountered along the way.
Early Hope and Treatment
Our hope was palpable in those early days. We embarked on this path with the belief that, with the right treatment and a positive outlook, we could keep the progression at bay. The use of the chelating agent deferiprone gave us a few good years, slowing down the progression and allowing Gary to maintain a semblance of normalcy. However, the decision to pause chelation therapy during the COVID years, while Gary still had an active bleed, proved to be a costly mistake—one from which his body has never fully recovered.
A Significant Downturn in Mobility and Health
In December of 2023, Gary became a permanent wheelchair user following a series of severe falls over the summer and fall. These falls resulted in multiple CT scans and concussions, marking a significant downturn in his mobility and overall health. Despite these setbacks, there was a bright spot: the VA approved Dr. Levy to become Gary’s neurologist. In October, we flew to the Superficial Siderosis Clinic in Boston for Gary’s initial visit, and we look forward to his follow-up next year.
Recent Health Interventions and Challenges
Gary’s health journey has seen some significant interventions recently. He now has a permanent suprapubic catheter and underwent surgery to remove two feet of his colon, resulting in a colostomy bag. His daily routine includes 15-18 hours of sleep, a stark contrast to the active life he once led. The most heartbreaking development has been his cognitive decline. Gary is beginning to forget important long-term memories and can only retain short-term information for about five minutes. He forgets that he can’t walk, no longer drives, and doesn’t work. He constantly worries that I haven’t informed his boss that he won’t be coming in for the day.
The Impact of Cognitive Decline
This cognitive decline has brought new challenges. Gary can no longer be left alone, as he becomes anxious and worried if I am not within immediate sight. Leaving the house now requires a sitter, someone who can expect to be asked where I am every ten minutes. Gary no longer recognizes his limitations or the potential danger of certain actions, adding another layer of complexity to our daily lives.
Gratitude
I must admit, I am exhausted. This journey has taken a toll on both of us in ways we could never have anticipated. While I will continue to write medical-related articles, this will be my last post on our personal treatment journey. As we enter this stage of Gary’s progression, he always makes sure I know he is not ready to give up, and for this, I am grateful. I’m not ready, either.
For those who have followed our story from the beginning, you can revisit some of our pivotal moments through these posts:
Thank you for your support and understanding. Our journey with Superficial Siderosis has been one of resilience and unwavering hope. As Gary and I navigate this next chapter, we carry with us the strength and support of this incredible community.
All our love, Rori and Gary
My husband was diagnosed last year. We are only at the beginning of this journey. Thank you for your story, I wish for much strength and love for you and your family.