TL; DR:

I’m living with Functional Neurological Disorder, a condition that causes unpredictable loss of movement, seizure-like episodes, and severe pain, making even basic daily tasks difficult and uncertain. I’ve been accepted into a 6-week intensive rehab program at Re+Active Physical Therapy in El Segundo, California, that offers a real chance to regain stability and function. The total cost for me to attend including housing, travel, and care will be between $35,000 and $40,000. While insurance may cover part of the core treatment (PT / OT / Psych 11 hours per week), the additional cost to attend will be $15,000–$20,000. I’m asking for help to make this possible so I can take a meaningful step toward getting my life back.

Full Story Below

I’ve gone back and forth about sharing this, but I’ve reached a point where I need support to take the next step in my health.

Over the past few years, I’ve been living with Functional Neurological Disorder (FND), a condition that affects how my brain and body communicate. It impacts my movement, nervous system, and overall ability to function day to day.

What this looks like in real life is not always visible from the outside. I experience episodes that can include sudden loss of muscle control (drop attacks), seizure-like events, severe pain, and full-body spasms and so much more. Some days I can function in a limited way, and other days basic tasks like standing, walking, or getting through a normal routine become incredibly difficult and unpredictable.

This has affected every part of my life: my independence, my ability to be present the way I want to be for my kids, and even simple things most people don’t have to think twice about.

After extensive medical care with tons of doctors in various specialties and searching for the right kind of treatment, I’ve been accepted into a 6-week intensive neurological rehabilitation program at Re+Active Physical Therapy in El Segundo, California. This program specializes in treating FND through a combination of physical therapy, occupational therapy, nervous system retraining, and structured wellness support.

What makes this program different is that it doesn’t just treat symptoms individually, it works on retraining the brain and body together. For people with FND, this kind of focused, consistent approach can be a turning point in improving function and reducing symptom severity.

We are in a third party medical necessity determination with the insurance. Hopefully the insurance will cover the core therapies (PT, OT, and psychological care) amounting to about $20,000, but there are still significant out-of-pocket costs required to attend.

Because the program is 3 to 4 hours per day, 4 days a week for 6 weeks, I will need to temporarily relocate to the area near El Segundo, Ca. In addition, in order for me to safely attend and manage daily life during treatment, my husband and children will need to relocate with me for at least the first two weeks, and possibly all 6. If I need support all 6 weeks, that means Mark would need to take leave from work for part of this time to help with caregiving, transporting me to appointments and supporting our family.

The main costs include:

• Housing for 6 weeks (42 nights in VRBO 2 bedroom apartment) $9600

• Required wellness program + classes (addition to therapy insurance hopefully will cover) $1400

• Food (inflation of being in California and not being able to always make food) $1500

• Transportation (gas, parking fees, uber or medical transport) $2000

• Lost income (if Mark has to stay the full 6 weeks)

Total estimated cost: $15,000 - 20,000

This is not an easy thing for me to share. Asking for help like this feels vulnerable and outside my comfort zone. But this program represents a real opportunity for me to work toward stability, function, and a better quality of life.

If you feel moved to support, whether through sharing this with others, making a donation, or keeping us in your thoughts and prayers, it would truly help make this possible. Every bit of support reduces the barrier to accessing care that could have a meaningful impact on my future.

Thank you for taking the time to read this and for being part of my support system in any way.

If you are interested in following my story, please feel free to check out my CaringBridge Journal.