Mobility and Balance

Living On Tilt

Ataxia Issues

Gait and Balance

50% of Superficial siderosis patients will learn to live their lives permanently on tilt. Ataxia-related gait and balance issues were a late addition to Gary’s list of symptoms, but here they are. In early 2013 random bouts of nausea and vertigo would hit with no warning. Walking would sometimes be puzzling because of the sudden listing to one side or the other. It was this puzzling combination of hearing and balance struggles that would ultimately lead us to a correct diagnosis.

If you are familiar with Texas Holdem, you may have heard the phrase going on tilt. You’re having a good night; cards are falling your way, and you’re holding a hand the odds say is pretty darn unbeatable. You’ve been counting your pot since the turn, betting steady, and when you think it’s a done deal, the river card hits. There you are, sitting stunned and watching someone else drag your money. The next thing you know, your gameplay is on tilt, and you’re completely off balance.

April 2014, we ran the only 5k we will ever run together. Running was still possible then as long as you were careful not to let the street jump up and trip you, but it was apparent there would not be another. We found ways to mask the balance issues. I’d walk ahead, with Gary placing his hand on my shoulder to keep his balance. Going downstairs was impossible without a handrail. There was a lot of hand-holding or walking arm in arm, so yes, an upside!

In November, we went on vacation where the cane made its first debut. Though it wasn’t necessary for Gary to use a cane all the time, it did give my shoulder a little relief and was helpful on long days of walking. We were still walking 3.5 miles at home when we could, but as fall became winter, we noticed that the road areas of dappled light were problematic. Walking through the shadows would turn every bump in the road into an obstacle course.

We met with Gary’s neurologist mid-December of 2014. The doctor recommended, with the balance issues increasing, it was time to think about a plan to stop working. When you’ve worked for 41 years, the thought of not having a job is terrifying, but Superficial siderosis doesn’t give you a choice. We’ve had to stop the long walks, but started little short walks again. The cane is indispensable now.

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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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