Two Newlyweds Fight Fragile-X Associated Tremor/Ataxia Syndrome (FXTAS)
One caregiver's story
My name is Marcia*, but sometimes I call myself the "bride of FXTAS." FXTAS stands for Fragile-X Associated Tremor/Ataxia Syndrome, the degenerative neurological disorder that attacked my 64-year-old husband Henry* a month after we were married in 1999. The first noticeable symptom was that Henry fell down while playing golf - medics were called and could find nothing apparently wrong with Henry. It took over five years of worsening symptoms - including more frequent falls, difficulty walking, cognitive decline and incontinenceexaminations by five neurologists and many diagnostic tests before Henry was diagnosed with FXTAS. For the seven-plus years of our marriage....
*Names have been changed to maintain privacy.