Functional Neurological Disorder Treatment at UM St. Joseph Gives Patient the Gift of Hope
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Kerrie Brooks credits UM St. Joseph's comprehensive movement disorders and outpatient rehabilitation teams with changing her path in her near decade-long battle with Functional Neurological Disorder. She shares her experience below.
In October 2013 at the age of 40, I was rushed to the hospital for stroke-like symptoms. I was a married mother of three young boys and was terrified. I remember the ER doctor explaining I had a complex migraine and sent me home after initial CT scans came back clean. I had been experiencing these migraines a couple times a year for a few years, so I didn’t question it, but this one by far was the worst and scariest. Two days later it happened again, and I went back to the ER. This time a different ER doctor suggested it was a conversion disorder. I’d never heard of that term and was confused why he didn’t agree it wasn’t another migraine, but he sent me home saying I needed psychotherapy, not hospital treatment.
Months later I was diagnosed with a Functional Neurological Disorder (FND), the most current term used in the Diagnostic and Statistical Manual of Mental Disorders. This term replaces the antiquated labels of conversion disorder, stress illness, and hysteria and includes patients who have no known traumatic cause to their symptoms - patients like me. FND can look like a stroke, mimic MS and for the majority of patients can cause severe disability. My symptoms included extreme fatigue, weakness, semi-paralysis, slurred and halted speech, abnormal gait, pain, brain fog, uncontrolled tremors and movements, and non-epileptic seizures. It left me bedridden for several months and without proper treatment, I had no hope for recovery.
Through my personal research into published studies including well documented information on NORD’s website (National Organization for Rare Disorders), FNDhope.com, and neurosymptoms.com, I learned that Functional Neurological Disorder is a disruption to the brain’s nervous system. It does not cause structural damage like other neurological diseases and therefore can be difficult to diagnose correctly. The incidence rate is also vague at best, with many academic materials describing it as the second most common reason people visit a neurologist after headache/migraine. FND, as explained by Dr. Jon Stone, a leading neurologist studying FND, is a “problem with the software of the brain” leaving the brain’s hardware entirely intact; however, recent research has revealed structural differences between a ‘normal’ brain and a FND brain.
During the first year of my illness journey, I learned through a support group on Facebook that some had success with a physical and occupational therapy program at the Mayo Clinic in Rochester, MN. Their five-day outpatient program was one of a few in the country at that time and I found it truly transformative. They helped to reprogram my brain to function with a normal messaging system. Over the next several years, I fought hard to maintain my functionality but found my body was sliding back to its abnormal ways. All of those initial symptoms kept creeping up in my daily life. I couldn’t keep up financially with constant visits to Mayo for ‘tune-ups’, so I turned to my local community in continuing to seek out answers as to why and how this was happening to my brain.
I, along with a family member also suffering from FND, became involved in a study at NIH spearheaded by Dr. Mark Hallett. I discovered CBD oil not only helped diminish pain but also helped suppress seizures. I changed my diet going gluten free and found relief from the IBS I suspected was connected to FND. I worked with (and continue to see) a local counselor who helped me work through the trauma of living with chronic illness. She is not trained specifically in FND treatment, but she offers the compassion and validation I need to avoid spiraling into a state of depression.
By early 2020, I realized that despite my best efforts I was not able to get myself back to the functionality I enjoyed after my first Mayo trip in 2014. I packed my bags and flew out for round number two of treatment and was ready to get back to the land of living until the world shut down due to the pandemic two weeks later. Like everyone else, I isolated at home and over the course of the following year, I found my body once again slipped back to its abnormal behavior. It was incredibly discouraging, and I feared I wouldn’t be able to maintain full functionality without the help of frequent pilgrimages to Mayo. One day, my dear friend, Christine Hudacek, a physical therapist at UM SJMC, told me about Dr. Lynn Chouhfeh and the work she was starting to do with FND patients at the UM SJMC Outpatient Rehabilitation Institute. Meeting her and her team was a game changer.
In August 2021, I met Dr. Chouhfeh for an evaluation. She was patient and compassionate as she conducted all the neurological tests I’d become familiar from the past few years, and she felt I was a good candidate for the physical and occupational therapy program she was building in her clinic. I was over the moon that after eight long years I’d finally found a local neurologist who could offer the treatment I desperately needed right in my own backyard!
I met the rock star team of physical therapist Anahita Anvari-Clark and occupational therapist Katie Grant who coordinated and scheduled weekly sessions that incorporated many of the brain reprogramming techniques I learned at Mayo Clinic. They worked on helping me build up my stamina so that I could do activities like walking or climbing stairs without it triggering symptom flairs. One of my first loves is dance and we spent many fun sessions grooving to music as a way to distract the abnormal movement patterns while reinforcing normal movement behavior. Strobe lights frequently trigger the non-epileptic seizures so we came up with a way to desensitize that abnormal response so I could enjoy date nights at concerts with my husband. They set up obstacle courses that allowed me to practice walking forward, backward and side-to-side with smooth gait patterns without the aid of my cane.
Over the course of my illness, I discovered a love for art therapy which blossomed into a passion for painting and card making. Unfortunately, sitting for hours working on my art often depleted my strength so we worked on practicing how to pace my activities to maintain positive energy levels. Each week we practiced diaphragmatic breathing and progressive muscle relaxation techniques to help calm my nervous system whenever it felt like frayed or like it was on fire. Perhaps most importantly, Katie and Anahita taught me to be kind to myself and treat the wins, no matter how small, as triumphant successes. Over the years I became very good at beating myself up any time my body betrayed me. I often blamed myself for each setback I experienced, creating a negative feedback loop that told me I wasn’t strong enough to overcome this disorder. With their help, I learned to be more compassionate and kinder to myself whenever a ‘hiccup’ arises and to give myself a pat on the back for all the hard work I achieved and continue to accomplish.
After eight months of weekly sessions, I proudly graduated from my treatment and truly believe the long-term program is what worked best for me. This past summer I worked towards making up for lost time starting with a flight to Boston to visit family with my 12-year-old. For the first time in over nine years, I flew without the assistance of a caregiver pushing me through the busy crowds in a wheelchair and thoroughly enjoyed the one-on-one time with my son knowing he didn’t have to worry about taking care of me. I spent vacation time at the beach with my family and walked every single day, logging over 17 miles of walking in one week! I’m also working towards the goal of opening an Etsy shop to sell my hand painted greeting cards, a goal I never dared dream prior to the treatment I received from Katie, Anahita, and Dr. Choufeh. They’ve given me the gift of hope towards a fulfilling and meaningful future, and I would strongly suggest any sufferer of FND to consider this team as a part of their care on the road to their recovery.