UPDATE on Alli – Sept 30th

We are a week away from heading down to a two-week intensive Functional Neurology program in Florida, and Alli still does not have use or mobility of her legs. There have been a few instances of “electric” shooting pain through her thighs, and we’re hopeful that these are signs of the legs slowly “waking up”. She continues to have an average of 13 full body non-epileptic seizures a day, and they have now settled into their own cycle occurring approximately every 90-120 minutes. 

Our FND professional team is getting solidified. She has been working with a Physical Therapist for the past two weeks (who we love), and she began virtual sessions with a Neuro-psychologist who is well steeped in this disorder as well. Alli spoke with an Occupational Therapist who she’ll begin working with as soon as we return from Florida. We are still waiting on the referral we have sent to a neurologist here in Asheville as well.

Every day Alli engages in a variety of exercises meant to retrain her brain’s ability to communicate effectively with her body, and utilizes various tools to help calm her nervous system. The goal right now is to lower her baseline of stress on the brain so that it has the capacity to handle the intense work she’ll be doing in Florida.

These are only the first steps on a long and uncertain journey ahead. The brain regulates nearly every physical action, thought, and automatic survival process. FND corrupts the brain’s ability to communicate effectively with the body creating malfunctions in movement and coordination, senses and perception, thoughts and emotions and involuntary actions like heart rate, blood pressure, digestion, and swallowing.

So, even though the current goal is to reduce or eliminate Alli’s current symptoms, the actual disorder will still remain, and we will need to handle whatever disruption FND decides to create moving forward.

All we can do is live in the moment as we travel down this arduous road, and we are extremely grateful for all the support we continue to receive.

Please consider sharing her story and the support link with both your online and offline communities. You never know who has experience with this disorder – and who’s connection might make a huge difference in our world.