A story of a young man temporarily paralyzed by the neurotixin produced by Clostridium botulinum: 

In 36 hours he went from being a young healthy college student to complete paralysis and being kept alive by tubes and machines.

A rare illness almost stole Brent Ocker’s life. The U of L graduate says his toughest test was far from the classroom.

Brent Ocker has earned a master’s degree in Sports Administration and at just 26 years old learned lessons most will never know. “A year ago I was on my death bed,” he says. That was September 10, 2010. He says he, “woke up that day felt very dizzy, blurred vision, and I couldn’t walk straight…My lungs were collapsing and I was unable to breathe.”

Ocker says doctors went into a guess-and-check method of diagnosis Like a medical mystery from a television drama. First they thought he had vertigo, then maybe meningitis.

“Botulism was down here, no one was even beginning to contemplate that,” he says. But that was the diagnosis.

Botulism is a neuro-cognitive disorder where bacteria that Ocker ingested started in the brain and attacked the nerve ending that sent messages to his muscles.

“I have paralysis,” he says, “I am essentially trapped in my own body. I can hear but I can’t see or move. It was really frightening.”

Botulism is so rare the federal government guards the antidote. As doctors waited for it to be flown in from Georgia, they told his family the drug is so strong 25 percent of patients die during treatment.

Even though the drug was working, Ocker had to withdraw from U of L because he had two more months in 24-hour rehab facilities learning to live again.

But friends rallied around him, hosting fundraisers to help with his seven-digit medical bills. U of L professor Mary Hums says, “The one thing I remember really well was the first day he came back to school to set up his semester, and that was an emotional meeting. I’ll admit it I cried.”

Ocker says, “I could literally only come to class because I could only be on my feet about 15 to 20 minutes from strength.” But he pushed through: “Absolutely, this is the toughest test.”

He will graduate Friday with University’s Alice Eaves Barns Award, which is given to just one master student each semester who has triumphed in the face of adversity.

And what has he learned? “The power that people have to love.”

  • Tina L. Henry

    I have two friends that have been diagnost with botulism poisoning. A father and his 14yr. old daughter. He is in total paralisis and she has very limited , to hands only. What helped you the most? Did you know when people were there? Could you feel their touch and words? Are you now at 100% recovered? That you soooooo much for the info!!! It is such a big help. There needs to be more on this subject for the few that this does happen to!

  • stacy alspaugh

    my father obtained this from smelling bad green beans we had canned. it took us 8 days before we knew what it was. it has been 7 months now, he is off the ventalator now, but still cannot eat and on a feeding tube, and constantly has pneumonia. he is is rehab still. he is 63. I am not for sure where his future lies. It is good to know there are survivors of this. can you let me know how this is effecting your normal functions.

  • I am a 39 year-old botulism survivor. I can tell you that this student got off better than some of us! Like the first commenter’s father, it took them 9 days to diagnose me correctly. I was on a ventilator for 4.5 months, and in acute rehab for another 5 weeks. I contracted the disease on Sep 15, 2012, and finally came home on Mar 6, 2013. I am now walking with a cane, but fatigue easily, cannot lift very much, cannot yet stand up from low heights, and stairs suck for me (this is all now due to muscle atrophy from being paralyzed for so long).

    While paralyzed, I could feel and hear everything. My left toes were sometimes non-paralyzed, from the beginning, so I could spell with my friends, but it was time-consuming and exhausting (I often fell asleep halfway through).

    Your family members and friends are probably now through their crises. I wonder how they are doing??

    • debra ann

      Hi Jessica, how are you doing now? I got a severe case of botulism 1 year ago, and like you, I could hear everything but was trapped in my body (really scared, wanted to die). I always had some movement in my right hand and was able to scribble letters to create words so I could communicate. I was on a ventilator for about 75 days and on a feeding tube for about 100 days.

  • joy

    My dad has botulism. He has been on a ventilator for 2 months now, his right lung is staying filled with fluid. Any info will help on his care. All his doctors are saying they have never treated botulism, that it’s something you read about and never see.

  • Brad Koelewyn

    I got botulism about 1.5 years ago. I was undiagnosed at the hospital but months later through searching on the internet found all the distinct symptoms i had experienced. Nothing shows up on normal tests from the doctor. it wasn’t severe enough of a case that i needed a machine to breath for me and i was able to leave the hospital a day later. A year and a half later I’m still having significant issues. weak breathing, weak heart, dry mouth, bad eyesight, unable to work as a labourer. I wish i could find some kind of support group but it’s so rare that it doesn’t seem likely. If anyone has any information on the long term effects or personal experience please dont hesitate to send me a message. I’m the only Brad Koelewyn in the world to my knowledge

    • debra ann

      I got a severe case of botulism 1 year ago. The doctors narrowed down my symptoms relatively quickly and I received the antitoxin within about 48 hours. I was completely paralyzed and was quickly intubated to keep my airways open. I was in ICU for about 77 days and a week in rehab, then home health care physical therapy. I’m close to 100% recovered now but still have a dry mouth much of the time. My eyesight declined significantly during my hospital stay but seems to have improved a little. I don’t know anyone else who’s had botulism so I don’t know what’s “normal”.