Our phone chat #14 – Mary

Maria: Hello Mary. Thank you for sharing Jake’s story with me. It has been quite a journey for you all since Jake developed epilepsy as a 12-year-old.

Mary: Jacob (Jake) was born in June 1988. He was a gorgeous, healthy and a contented baby and one of five boys growing up on the outskirts of Hamilton, New Zealand.

Jake was a typical kiwi kid. He loved the outdoors and spent many weekends with friends and his brothers playing soccer, hiking, camping, rock-climbing, riding bikes and holidaying at the beach. He was shaping up to be an accomplished student, a gifted sportsman and above all else he was a loving, kind, funny, outgoing, and adventurous person.

In April 2000 when Jake was just 12 years old, we woke to hearing Jake’s first epileptic seizure. He was taken to hospital and after a weekend of tests he was prescribed his first antiepileptic drug (AED) for Juvenile Myoclonic Epilepsy. Our world was turned upside down as Jake’s seizures were never controlled and he lost out on enjoying the life that we imagine for our children.

Maria: I understand that sense of loss for both your family and for Jake as the normal teenage life became impossible to do.

Mary: Despite his illness, Jake had an incredible positive spirit, and through sheer determination he worked hard to lead a normal life. In his early 20s he enrolled at polytech to follow his passion for music. He managed part-time work for several years, until the frequency and severity of his seizures made it impossible to continue. Jake tried flatting, but because of how violent his seizures became, he needed more support from his family and he came back to live at home. Simple tasks became difficult for him to do and we worked hard to mitigate for any injuries should they happen as a result of his countless seizures.

Maria: Jake has drug-resistant epilepsy. What else has he tried to help control his seizures?

Mary: Jake has been seen by three different neurologists over the years who have tried every anti-epileptic medication imaginable to control his seizures. They didn’t work and so we tried many avenues to get help for him. Jake is currently on the dietitian-prescribed ketogenic diet but he has tried acupuncture, homeopathic, naturopathic, osteopathic, and physio therapies.

Maria: Over the years, I believe that Jake’s epilepsy diagnosis has changed.

Mary: Yes! He was diagnosed with frontal lobe epilepsy four years ago and more recently that has been changed to epileptic psychosis, a rare form of epilepsy occurring in 2-10% of people living with epilepsy. These seizures create paranoid delusions and hallucinations which are excruciatingly painful for him both mentally and physically as he is fully conscious when they happen.

Maria: What is life like for Jake today?

Mary: Initially he had been taken off all medications because of their side effects but the roller coaster of his withdrawal highs and lows, hospitals and heartache it was too much to bear and now he is back on some medications. He still has multiple seizures a week and he needs help with daily tasks like showering, shaving and eating his meals.

Maria: I believe that Jake is moving into a wonderful home where he will be looked after fulltime. It has been a long time in coming and I am cheered that he will receive the level of care that he needs. Hopefully it will also open up avenues of social interactions for him. I am sure that there have been many times when Jake has felt socially isolated.

Mary: It is so good that we now have Jake moving into what certainly looks like a great residential home and in a beautiful part of Hamilton. The staff will make all of his ketogenic meals, which is his only form of seizure treatment, and they will be given epilepsy awareness training on what Jake’s seizures look like. Our hope is that Jake will have opportunities to meet others as he has certainly been socially isolated over the years. It has been a long journey, not only for Jake but, for his brothers and for us as parents. The journey isn’t over but I think that Jake will have a better quality of life from now on.

Maria: I am sure that he will. Thank you for sharing Jake’s story, Mary.