Sept 18 Update on Alli Winston

Alli continues to have an average of 13 full body non-epileptic seizures a day.

Unfortunately, after one of her seizures yesterday afternoon, she lost the ability to use her legs. No feeling and no movement. This is yet another symptom on the long list of what can happen by having Functional Neurological Disorder (FND). 

It has been 24 hours with very little improvement. She can wiggle her toes and has a tiny bit more feeling in her legs although they feel as though they aren’t a part of her own body and they aren’t able to move on their own. Because it’s neurological, it’s impossible to know if this will last a day, a week or even a month.

We are grateful to have resourceful friends and immediately we had two wheelchairs to get Alli from room to room. We’ve contacted Home Health Care should this current situation last long enough to warrant their services. 

Since landing the functional neurological program for October, we have begun building the team of experienced FND professionals to treat Alli moving forward. We currently have a wonderful physical therapist, have a referral in for a neurologist, and will be having consultations with multiple neuropsychologists. Hopefully, everyone together will be able to get us past this incredibly traumatic chapter.

FND is truly a terribly complicated disorder, and there are people all over the world who are suffering with no real support system. In this regard, we are grateful to all of you who have called, texted, offered your support through resources, meals and money, and connected us with others in the FND world. This has been incredibly valuable, as the road ahead looms long and unpredictable.

You can’t possibly imagine the emotional, and physical toll this is taking on our sweet Alli. After 18 years of finally getting her independence back from her previous injury, her world has become incredibly small once again. Nobody deserves any of this.

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 could make a huge difference in our world.