The story of Eldon
The story I’m telling here is really my husbands to write. Eldon, my partner in life for the last 55 years, has been diagnosed with sporadic cerebellar degeneration, also known simply as ataxia. Two or three people out of a 100,000 are living with some form of it. Researchers are identifying genetic causes on a continual basis and were up to around 50 in January, 2024. My husband has had genetic testing at UCLA but we haven’t gotten the results yet. If no gene is identified, he will remain among the 50% or so with unidentified ataxia.
Eldon began losing control of his balance in his mid 60’s. His legs, and later, his arms and hands, began to weaken. He mentioned it to his doctors here in southern Idaho, but none had any idea what might be causing his symptoms. Finally, a year and a half ago, he began to vigorously pursue an answer. By that time, he needed a walking stick to get around while doing yard work. Even so, he fell frequently and had less and less confidence in his stability.
Finally, after seeing around five doctors, a local neurologist correctly read an MRI of Eldon’s brain and diagnosed his condition correctly. In January, 2024, we traveled to California to see Dr. Susan Pearlman at UCLA’s Ataxia Clinic. After a careful study of his files and MRI, plus an in depth interview, Dr. Pearlman confirmed the ataxia diagnosis. However the genetic testing turns out, we are encouraged to know that his results and files will become part of continuing research.
I titled this story, “Navigation Unknown,” because we’re told there is no cure and no treatment. The disease/condition is progressive, with cerebellar cells continuing to die. One gradually becomes dependent on canes, then walkers, and finally a wheelchair. We’re traveling this path together, wherever it leads us.