Support Anne's Journey to Neurological Recovery

After two years of experiencing increasingly debilitating neurological symptoms, multiple ER visits, and a series of misdiagnoses that led to significant medical expenses, Anne was recently diagnosed with functional neurological disorder (FND). FND is disorder of the signaling between the brain and nervous system that inhibits communication between the brain and body. It does not respond to medication, but it is treatable with intensive neurological rehabilitation. Please read Anne’s story and consider supporting her ongoing recovery!

Anne’s Story

Anne first began experiencing neurological symptoms in June 2022. At this point in time, her symptoms included episodic tremors and involuntary movements primarily in the muscles of her hands, arms, neck, and face. Following several ER visits, Anne began seeing a neurologist at Vanderbilt, specializing in movement disorders. From here, she began a marathon of trialing medications for various suspected diagnoses with varying, but unfortunately only temporary, success, resulting in a misdiagnosis.

Several months later, in late November 2022, Anne experienced her first full-body paralysis episode, lasting approximately 4 hours. During this episode, Anne was alert, but unable to move or communicate with anyone. Unfortunately, this episode was accompanied by a traumatic ER visit involving ill-treatment from both 911 medical responders and hospital staff. These parties not only accused Anne of drug abuse, believing she was unconscious and unable to hear, but also actively argued with her that her neurological symptoms were not medically real.

Over the next year, Anne’s health steadily worsened as her movement and paralysis episodes became more frequent, long-lasting, and severe. During these unpredictable episodes, Anne experiences a mixture of involuntary movements and paralysis, but doesn't lose consciousness. The resulting feeling is a sensation of being trapped in your body, waiting for the episode to end. These episodes were particularly terrifying in times where Anne was alone. She would often end up injured or bruised from falls, and recovery time could take upwards of two days from the resulting fatigue. Simultaneously, Anne sought care for chronic wide-spread pain, which after numerous rheumatology visits and nearly 3 years spent suffering without adequate treatment, was diagnosed as fibromyalgia in September 2023.

As it became apparent that Anne’s neuro condition had been misdiagnosed, she underwent continued testing and imaging for a range of conditions that all returned negative or normal. During this time, she slowly lost the ability to participate in life activities including driving, grocery shopping, running errands, cooking, and cleaning. She also began experiencing episodic limb weakness that left her unable to lift everyday objects (e.g. phone, glass of water, etc.). At times, she was completely unable to walk and became increasingly reliant on a wheelchair for mobility.

In March 2024, less than a week after celebrating her 30th birthday, Anne’s episodes became an all-day, everyday occurrence. She experienced full-body paralysis for upwards of 7 hours at a time as well as hours-long episodes of neurological movement phenomena including ballism and chorea. By this point, Anne had reached near total disability, unable to perform essential activities of daily living without assistance. By late March, Anne also began episodic difficulty with speech.

In early April, Anne sustained a concussion from a fall that occurred due to one of her episodes. Following a handful of emergency appointments with her neurology care team at Vanderbilt, her care options in Tennessee had been completely exhausted.

In mid-April, Anne and her husband Kevin moved in temporarily to Miami, Florida with Kevin’s mother where they could pursue care options at hospitals better equipped and resourced to treat her condition. It was here that Anne was officially diagnosed with Functional Neurological Disorder (FND).

FND is a disorder of the signaling between the brain and nervous system, essentially inhibiting communication between the brain and body. While this disorder does not respond to medication, it is treatable with intensive neurological rehabilitation.

In May 2024, Anne was admitted to the Christine E. Lynn Rehabilitation Center in Miami. Anne worked hard daily with a strong team of specialists to re-write the brain’s neural pathways. In other words, treatment involved her relearning to perform basic motor functions including standing, walking, speaking, and activities of daily living through neuro-focused physical therapy, occupational therapy, speech therapy, and neuropsychology. However, this ongoing recovery comes with a high volume of medical expenses and debt, which Anne and Kevin need support to be able to maintain.