What is your history with fighting SS, and how are you helping others with the disorder?

In June 2018, I had an MRI as I was starting to see double and occasionally would stumble when getting up from the floor. I knew something wasn’t right. In the first MRI, nobody saw the superficial siderosis. Six months later, I had a second MRI; my local doctor saw it and referred me to a specialist.  He didn’t tell me what it was. A nurse at my sinus doctor let the cat out of the bag.  I had to write it down as I never heard such a long word, much less spell it. When I was diagnosed with this condition, I had no idea what I had just been diagnosed with. 

Before talking with my doctor, I searched the internet, finding very little on the subject. What I did find was devastating.  I left work in tears and had a hard time returning. My doctor wouldn’t tell me and asked me to see a surgical specialist who confirmed what I already figured out, and we talked about patching the leak. 

The Sunday before my consult, the surgeon called and said they wouldn’t touch me. When the surgeon’s decision left me hanging with nowhere to turn, we called the Mayo Clinic and scheduled an appointment. This turned out to be the best decision I made. With all my spinal taps, nobody checked to see if my leak was active.  Mayo confirmed it was still active. Two months out, they opened me up and patched the leak in a meningocele I might have had from birth. Three months later, another spinal tap to confirm the leak was patched. Mayo did their job that no one else could.

A month after my final spinal tap, I was off to Boston for an appointment with Dr. Levy to get his opinion and hopefully start on iron chelation.  I have been on chelation therapy for four years now, awaiting my September MRI to check the progress of chelation.  At my two-year MRI, nobody noticed any change. I found out later that is not uncommon.

With such little information on this, I wouldn’t settle with second best.  I went to the best of the best. My future depended on getting this right. 

-Jack

Usually, when I read something about superficial siderosis, it is almost always very negative and devastating.  It’s so bad that I usually shy away from following these sites and pages.  My sister keeps a close eye on those and advises me on breakthroughs. I have become more optimistic as I move forward and feel I have stabilized and, in some areas, improved.  I try to exercise daily to keep my body strong and mind active. 

I watch the Superficial Siderosis Support page and reach out to newly diagnosed people who need guidance.  I can’t offer any real medical advice as an engineer, but I can share my journey and hopefully guide them on a path.

How helpful is it to have such strong support from friends and family?

There really isn’t anything easy about this condition! I am, however, truly blessed with great lifelong friends, co-workers, and a great family. During the initial stages of this diagnosis, I had friends take me to my appointments and even drove me to Mayo which is four hours and an overnight stay away.  These same friends, family, and co-workers have very graciously donated to the cause.

I can’t do as much as I used to, but my friends and co-workers have really stepped forward to help me do what I can no longer do. My co-workers watch out for me as well. They know my limits and will often help me. I am so grateful for this; it’s humanity at its best.

What are you most proud of about being a Wisconsinite, and what makes the state so enjoyable to live in?

I was born in Sheboygan, Wisconsin, grew up in Wisconsin, went to school in Wisconsin (MSOE), and moved back to Sheboygan after school. Sheboygan and Wisconsin are great places to work and raise a family. Outdoor activities are abundant, and jobs/employers are exceptional. I work as an electrical engineer for several machine builders in the area: (Pemco), Paper Converting; (Curt Joa), Diaper machines; and (VikingMasek), Packaging machines.

What are some of the challenges with living with SS?

The daily challenges include walking, hearing, balance, swallowing, and many internal issues. The chelation therapy brings its own set of side effects.  However, my body has adjusted after four years, and the side effects are minimal.

What makes you so driven to help with the SSRA cause?

I have always been passionate about what I do and willing to share what I know. With so little out there, I hope my experiences and knowledge help people pave a direction to beat this condition.

Of this entire journey, I am most proud of the people that I associate with. It’s one thing to say that you care; it is another to act and demonstrate. Thank you, my family, friends, and co-workers.