Thirty Year Anniversary

Thirty years ago, I looked like this:

I was diagnosed with Guillain Barre Syndrome on May 12, 1982.  

A month and a half later, I was doing much better!  My mom remembers thinking how great I looked in this picture!

Today, I rode in a time trial in San Diego.  I rode a 40K time trial yesterday, so my legs were tired.  But I rode well.  I dropped 30 seconds off of my time from a month ago and I rode 95% of the national standard (how we judge how "fast" we rode across classifications of disability).  Both things of which I can be proud.  But most of all, today I was faster than two "regular" girls.  For a year, I've been passed and lapped by able-bodied women.  It's hard on the psych sometimes.  I am functionally the same as my competitor who has one leg and rides without a prosthetic, but unless you notice by uber-skinny lower legs or watch me walk drunkenly - I look "normal."  So to finally "beat" someone is something I can be proud of.  I can't think of a better way to celebrate being me.

Someone asked me to write something about my "GBS Experience" and this is what I came up with:

This year, this month is my thirtieth anniversary of getting Guillain Barre Syndrome. Sometimes, I think I’m “lucky” because I had GBS when I was two years old and so I had no concept of “before.” This is my life. GBS is part of my life, but it does not define who I am or who I will become.

I was just two years old and I had the flu. My mom was getting more and more concerned because my fever wasn’t going down and I wasn’t sleeping. She carried me in to the pediatrician one day and he said he wanted to see me the next day. She carried me in to the doctor the next day and he asked her to put me down on the floor to see me walk. I immediately collapsed on the floor. Thankfully, my pediatrician had seen a case of GBS in his residency, so he told my mom to grab my car seat from the car, he grabbed oxygen and they drove to the hospital in his car – not wanting to waste time waiting for an ambulance.

The next day I was on a ventilator. I was in ICU for a month and in the rehab ward of Children’s Hospital of Los Angeles for three more months. I can’t tell you a lot about what happened during that time. I have a vivid memory of a hallucination of my parents signing papers to leave me there and I remember being on the tilt board and being “bribed” with Apple Jacks. All of my other memories are reconstructed from other accounts. And to be honest, I don’t really care. My life is about today – not thirty years ago.

After a year, when I was finally “walking” again I got my first pair of AFOs. I had severe foot drop and still had weak hand strength among all of the other residuals. Over the years, I’ve had thirteen surgeries to help with orthopedic problems that arose because of muscle weakness. When I was twelve I had my left ankle fused and had the right fused when I was 24 which allowed me chuck the AFOs in the trash. I have severe residuals, probably in the bottom 10% of those with GBS in terms of returns of functioning. Debilitating neuropathy is a part of my daily life. Buttons are my mortal enemy. I perpetually walk like a drunk person. I have 30% functioning and feeling in my lower limbs. That’s who I am.

Growing up wearing AFOs wasn’t pleasant. I was teased. I couldn’t play weight-bearing sports. My parents and I were told I was crazy because my feet hurt and there was nothing wrong. I am terrified of needles because of being poked so many times. I stumble and trip more than any sane human should. I can’t wear high heels. The thing about my GBS is that it is just part of my life. But it doesn’t stop me. I am blessed to have parents and a family who allowed me to “do what I want” (my signature phrase) and support me along the way.

I don’t want my GBS story to be about what limits me because I truly believe the only thing that limits me is myself. I’m now 32 years old and I’ve experienced life, not life with GBS. I was a Varsity swimmer and water polo player in high school. I taught myself to “roller blade” (even though my mom hides my rollerblades in the attic). I raised nine puppies to be guide dogs for the blind. I’ve graduated from top universities and have two master’s degrees. I taught elementary school for six years. I’ve ridden 100 miles on my bike to raise money for my best friend who has MS. I am on the United States National Paracycling Team and I am competing for a spot on our team to go to London for the Paralympics.

You’re not a victim, it’s just something that happened to you.  So don't live your life missing the things you might have done, but do the things you want to do.

Everything's Amazing and Nobody's Happy!

Happy Gimp Month to Meeeeeeeeeeeeeee!

May is National Guillain Barre Month!  Hooray?  Not only is it National GBS month, this May will mark 30 years ago that I had GBS.  30 years people....that's a LONG time ago!

From http://www.gbs-cidp.org/:

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.

It’s also called:

• Acute Inflammatory Demyelinating Polyneuropathy
• Landry’s Ascending Paralysis

What causes GBS?
The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning.  Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.

I had the flu a week before I was diagnosed with GBS.  It happens fast.  One day I was a normal two-year-old, a few days later I was paralyzed in ICU.


How is GBS diagnosed?
To confirm a diagnosis, two tests may be performed:
- A lumbar puncture looking for elevated fluid protein
- Electrical test of nerve and muscle function

I am incredibly grateful that my pediatrician had seen a case of GBS in his residency.  He had my mom put me on the floor to walk and I collapsed.  He didn't even wait for an ambulance, he grabbed an oxygen tank, told my mom to get my car seat (even though it was 1982) and we drove to the hospital in his personal car.  


How is GBS treated?
GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks. Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.

Unfortunately none of these treatments were readily available when I had GBS and even they had been, I didn't have enough blood to sustain them.  So, GBS ran its course.  I was paralyzed in ICU and on a ventilator for a month and then stayed in the hospital for three months after that.  I was released even though I still couldn't walk.  I wore AFOs until I was 24 (don't ask, still not my favorite subject) when both of my ankles were fused.  I don't remember much and most of what I know comes from my parents.