By Deron Hamel
At Toronto Western Hospital, Kerry Jenkins is known as the “walking textbook on epilepsy.”
Given her incredible story of perseverance, her doctors, as well as people at Epilepsy Toronto, have suggested Jenkins write a book about her struggle with epilepsy and the strides she has gained.
Now 47 and living in Peterborough, Jenkins began having absence seizures at seven, with up to 100 per day. Because these episodes only lasted two or three seconds and looked like quick pauses, her parents didn’t know they were seizures. It wasn’t until several years later she was examined by a physician for her seizures.
In August 2000, Jenkins had her first tonic-clonic seizure. The seizures progressed to an average of 15 per month. She was diagnosed as having both generalized seizures and temporal-lobe seizures.
For Jenkins, like so many others with epilepsy, life has been a road with many obstacles. Her marriage ended because of her condition, which also strained her relationship with one of her children. She lost her driver’s licence because of her epilepsy, which presented transportation challenges for her, as she was living in Lindsay at the time and had to travel more than 40 kilometres to her job in Peterborough every day.
With the challenges presented by her condition adding up, Jenkins says she saw little hope for the future. Clinical depression set in and became so severe that on two occasions she almost committed suicide.
Then things changed.
In November 2010, she had an electroencephalogram (EEG) to examine her temporal lobe. Thirteen months later, upon recommendation from her neurologist, Dr. Richard Wennberg, Jenkins underwent deep brain stimulation (DBS) surgery. This operation involves implanting a “brain pacemaker” which sends electrical impulses to the brain.
Prior to the DBS surgery Jenkins was on several medications, but she was having allergic reactions and severe side effects – including glaucoma and asthma – to most medications.
The DBS surgery, says Jenkins, was the major game-changer in her life. Since the surgery, the number of seizures Jenkins experiences has declined from 15 to eight per month, with no more generalized seizures.
In March, Jenkins had to have surgery again. This time it was to repair issues from her first operation, which had left burr holes that did not fill with calcium, causing her brain membrane to slip into them. This caused the leakage of cerebral fluid which was resulting in severe headaches and light and sound sensitivity.
The incidence of this happening is less than one per cent and her doctors had never dealt with this issue, Jenkins says.
Fortunately, the surgery was a success, and Jenkins continues to soldier on.
“I’m used as an example to other patients and family as how much someone can have to go through with epilepsy,” Jenkins says. “My (team at Toronto Western Hospital) has encouraged me to write a book about what I have gone through. They have told me that I have the best attitude they have ever seen.”
Jenkins is interested in writing a book to share her story and is looking for someone to help her with the writing and editing process. If you or someone you know is interested in helping, Jenkins would like to hear from you. She can be reached at 705-930-6146, or by e-mail at kjenkins2008(at)hotmail.com.
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