Our phone chat #24 – David

Maria: Hi David, it is always a pleasure spending the time chatting with you. You have had epilepsy for 45 years and so your journey has been a long one. You have medication-resistant epilepsy, which hasn’t always been easy but you have remained resilient and someone who is able tell an interesting story from which we can all learn. Where shall we begin?

David: I have so much to say. Perhaps I should first mention the relationship that we have with our neurologist. I have seen neurologists for years now and I haven’t always had an easy relationship with them, especially in earlier times when there was a strict egotistical medical system. Doctors were being treated as the fount of all knowledge. Of course they know a lot, but not everything. Over the years I learned to push back on what was being said to me by neurologists who continued to increase my medications to the point that I had no quality of life. Fortunately, I now have a European-trained neurologist who understands that having epilepsy is more than a seizure. It is about how I can live well with it.

Maria: Quite true. We understand the need to have seizure control in order to live safely but there is a point in our treatment when too much medication can badly affect other aspects of our lives. People living with epilepsy need to be heard.

David: Absolutely. I also believe that our New Zealand-trained neurologists should be given an opportunity to have international experience, come into contact with a wider array of conditions, and to see how things are done overseas with regard to epilepsy. That experience would be immensely valuable to them, and to us, their patients.

Maria: Cultural exchanges always work well, but I gather that there are too few neurologists in New Zealand for that to happen.

David: Possibly, but there is always room for improvement in the way that our hospital systems manage people and that is why I believe that we should push back and ask questions. It helps to form relationships with our neurologists. If they feel annoyed by that then so be it. For years I felt really dispirited by a previous neurologist’s treatment of me as a person but, after 45 years of living with epilepsy, I have grown in confidence to speak out. It matters how you are treated, greeted, and communicated with.  It should end up being like a partnership.

Maria: Tell me about growing up with epilepsy.

David: My parents taught me fairly early on to be mindful of my epilepsy and how I should look after myself well. I learned to manage my medications and my lifestyle and I was encouraged to live a good life. I learned to become independent, although as a teenager it felt like my mother was a ‘brake’ on me doing risky things such as abseiling (which I really wanted to do).  Instead I cycled everywhere and had fun. I have lost count of the number of seizure-related bike accidents that I have had but you can’t hide yourself away in life. You may get battered about but you have to live. I understand how parents want to protect their children who live with epilepsy, but children need to grow up and feel like they have some control. You can’t cotton candy them. They don’t want to be different and at the same time need to learn to manage themselves. Interestingly, I was told that I shouldn’t have my own children because of having epilepsy but I proved that I could be a great father.

Maria: You have a wonderful story of when you took your child to day-care.

David: My partner and I always taught our children how to care for me (i.e. their dad) when I had a seizure. One day I woke up from having had a seizure at day-care with a pillow stuffed under my head, covered in a blanket, and with a teddy next to me while my daughter was confidently telling the creche teachers, “Daddy just had a seizure. He will be okay.” My daughter was only four years old at the time. You have to be pretty honest with children about epilepsy because they will get annoyed if you are not. I found the EWCT epilepsy children’s books great for talking about epilepsy.

Maria: There were other times when you had seizures in public.

David: That’s right. I had a seizure on a live radio show. I felt under stress being on the show and then the last thing that I remember was managing to put the music on after talking on air. Apparently, the DJ training me just simply left me to have my seizure, which is great. The show must go on! There was also another time when I was going to feature on a TV programme about epilepsy. I happened to be on set (the stage with the cameras) and felt a seizure coming on. I called out, “Move the table, now” (it was a glass one) before I went down. The next thing that I was aware of was me lying on the floor with my head in the lap the presenter. The epilepsy organisation was told never to send along anyone with epilepsy again! They did though, they just didn’t tell them.

On another occasion (when employment contracts first came in) I had just become employed but one day I had a seizure in the tearoom before work and I promptly lost my job. I now work in an organisation where I get to work with a whole variety of students, teachers, and others to find creative solutions or solve their problems through IT.

Maria: Talk about being resilient, David!

David: You can be resilient when the meds are right and you can function. I have tried so many meds, and combinations of them over the years, and I now know which meds to avoid. Some medications gave me some interesting side effects like making me porky or talking 19 to the dozen. The worst medication that I used was levetiracetam. I became the ‘crying rage monster’ with that one. If I wasn’t snapping everyone’s head off, I was crying like a baby. The worst of it all was that I was prescribed it just before the Christmas holiday and I had no neurologist to support me through that period of absolute enraged depression. It was horrible stuff. Gabapentin wasn’t good for me either and the dose controlling my seizures was enough to tranquilise a horse. It certainly slowed me down.

I am now taking a combination of four anti-seizure medications and I am still having seizures.

Maria: How do you manage the different medications that you take?

David: I use blister packs. What a great invention. Once upon a time it would take me ages sorting out my weekly medications into a pill box but now it is all done for me.  I have a great pharmacist who answers all of my medication problems too. Everyone should find a good pharmacist in their life.

Maria: Pharmacists are certainly an important member of the epilepsy team.

David: Yes. As is a good neurologist who listens. My seizures have changed so much throughout the years and still are changing. I have been in status [epilepticus] several times in my life so I need to feel confident about those who are charged with looking after my medical condition.

Maria: Absolutely! Our epilepsy team must be robust in their knowledge of epilepsy and to understand the many burdens that people face living with this disease. It is only right that you are heard.

Thank you for your time, David. It is always a pleasure chatting with you.