SUDEPAware

In 2010, I lost my fiancé Rick Berg to what we believe was Sudden Unexpected Death in Epilepsy (SUDEP).  Rick was 47 years old - vibrant, full of life, we were about to be married and in an instant everything changed.

 

Rick was diagnosed with epilepsy at the age of 18.  While the cause was unknown, speculation was that it might have resulted from a motorcycle accident he had as a teenager.  He lived with the condition for 30 years of his life and for the most part managed it quite well.  For many years, Rick experienced frequent nocturnal seizures.  He had accepted them as part of living but a few years before he died, began to take a keen interest in learning more about how lifestyle choices, particularly diet and exercise, can impact seizures and seizure management.  He started to undergo extensive testing to see if there was anything else he could do to manage his seizures.  He had started taking a new medication that reduced his nocturnal seizures from nightly events to once a week.  After a few years of working hard to improve his seizure control, he began to see a noticeable difference.  That’s one of the reasons Rick’s death was so unexpected.

 

​On April 26 2010, I dropped Rick off at the airport as he left for a business trip in Montreal.  He had business meetings all day Monday and a dinner that night where he cheered on his Montreal Canadians who were trying to make it to the Stanley Cup Playoffs.  I talked to him on the phone around 10:30pm to say goodnight and he said he was too tired to talk.  Knowing fatigue was a trigger for bigger seizures I told him to get some sleep and we would talk in the morning.  That night Rick died in his sleep in the hotel room.  They think it happened around 1am and based on the description of his body position, I knew he had had a grand mal seizure in his sleep.  The medical examiner confirmed that Rick had had a tonic-clonic seizure.  However, they couldn’t determine if the seizure interrupted his breathing or stopped his heart.  The evidence was inconclusive, so Rick’s death was classified as SUDEP.

 

Neither I, nor Rick’s family, had ever heard of SUDEP before; I had no idea it was a concern.  If I had known, I might have taken different steps to help him or suggested changes in our lifestyle and how much Rick travelled for work.  At the very least, maybe I wouldn’t have been so completely and utterly blindsided.  Having to come to learn more about it over the years, I am astonished by how common it is and how little it’s talked about.

 

Shortly following his memorial service, a group of his friends, family and colleagues felt the desire to do something to keep his memory alive.  We organized the Rick Berg Invitational Golf Tournament as a fund raising effort to support both the operation of the Epilepsy Support Centre in London, Ontario as well as to raise awareness and facilitate important research in the area of SUDEP.  Over the course of five years, we raised over $200,000K in Rick’s memory.   

 

While it won’t bring him back, I am hopeful that Rick’s life can serve as a legacy to others living with this condition and that we can encourage the dialogue that will lead to better understanding and perhaps even preventing even one more tragic outcome.

 

Martha Claire Bennett

June 2013