- T
I need help getting to a critical neurology appointment in Philadelphia. The appointment is for a debilitating movement disorder (more on that below).
Please donate $10, $20, or whatever you can afford.
And please share this with others.
I need help covering two things:
roundtrip bus fare: $112.00
and overnight lodging: $540.00
The appointment is this week.
This needs to be fully funded by TONIGHT (Sunday, May 24)!
I live five hours from Philly, and I cannot drive. The bus is my only way to get there, and I need to book a room for one night (because the bus home isn't until the next day).
This is my first appointment with the doctor, and I'm required to be there in person. And they are the only neurologist in the state who specializes in this movement disorder. They do not have any other appointments available until next July (2027).
To make a long story short:
I've been dealing with "Functional Movement Disorder" for 22 years.
It's a glitch or malfunction in the brain that causes problems with sending/receiving/processing movement signals.
The movement episodes have become worse over the years, and they now happen five or more times per week (sometimes two or more per day). They last 1–3 hours per episode but have occasionally continued for 6–8 hours.
- These movements affect the limbs (in my case, mostly the legs/feet, sometimes the arms/hands).
- Movement types include shaking, tremors, jerking, twitching, and writhing.
- They are unpredictable (i.e., there's no warning signs that an episode will happen)
- And they can happen at any time of day (or night).
When a movement episode happens, I'm incapable of doing anything. For example, I cannot cook, clean, eat, drink, sleep, read, write, watch TV, or browse the internet.
Standing, walking, and talking are very difficult, and cannot be done for long.
Basically, I have to sit and wait for the episode to stop.
I can't control or stop it. I haven't been able to get a job or a driver's permit because of it. I'm lucky if I get 4 hours of sleep, because it interferes with that on a daily basis. My prognosis is currently "poor."
I've had many tests done (EEGs, long-term EEGs, QEEG, MRIs, EMGs, and sleep studies). I've done neurofeedback therapy, physical therapy, CBT (cognitive behavior therapy), and distractibility techniques. (None of that has helped.) I've been on several different medications. I'm on two medications now (anticonvulsants).
Please, help me get to this appointment.
They are my last hope for treating this movement disorder.
Thank you.
Organizer
