Diane, her husband Brion, and their dog Riley.
Diane has lived for years with challenging vestibular conditions, including superior canal dehiscence syndrome (SCSD) and vestibular migraine. She’s learned to adapt, using tools like a walking stick to help steady herself and developing a deep awareness of her body’s signals. But when new symptoms appeared—severe brain fog, tremors, a shuffling gait, and changes to her vision (including frequent and daily episodes of “shimmering” and/or “bouncing” vision)—she knew something more might be happening.
Concerned it could be Parkinson’s disease, Diane spoke with her doctor, who referred her to specialists at Oregon Health & Science University (OHSU). The neurologist there determined that her symptoms didn’t quite fit the profile for Parkinson’s. To dig deeper, he recommended a lumbar puncture to look for other possible causes, including Lewy body dementia, autoimmune conditions, and Alzheimer’s disease.
Just two days ago, Diane received the news: she has Alzheimer’s. The diagnosis has left her in shock. For months, she had been struggling with worsening brain fog and short-term memory loss. She couldn’t remember things her husband told her just 15 minutes earlier. The contrast with her past cognitive abilities is stark—five years ago, a neuropsychological evaluation placed her IQ at 130. When she repeated the same test this past January, her score had dropped to 90.
Now under the care of the OHSU Brain Center, Diane is beginning the next phase of her journey. Despite the life-changing diagnosis, she remains active and determined to keep moving forward. She goes to the gym five times a week and regularly walks her loyal black lab, Riley—who she’s carefully trained to walk just ahead of her so she doesn’t trip. Her supportive husband and years of experience adapting to vestibular challenges have given her a foundation to build on as she adjusts to life with Alzheimer’s.
Diane wants others in the vestibular community to hear her story. “Don’t ignore new symptoms,” she says. “Even if you think they might be related to something you already have, get them checked out. It might be something new, something treatable, or something that needs early attention.”
Diane also wants others to know that the MoCA test (a brief cognitive assessment test typically done by providers to annually test patients for cognitive issues), did not indicate that she had any cognitive decline when compared to her prior MoCA test results. She also wants others to know that neuro-psych tests are much more thorough than MoCA tests, and are therefore able to test for issues relating to multi-tasking, planning, problem-solving, organization, working memory and cognitive flexibility.) In her case, the neuro-psych test she recently had did reveal significant changes to her cognitive abilities. Because of the results from that testing, she received the diagnosis early in this journey, and can be eligible for new treatments for Alzheimers that have been shown to slow further cognitive decline. She hopes that by sharing her experience, she can help others find answers sooner—and feel less alone when facing the unknown.
