Betty’s Story

BettyMy discovery of Matthew’s Friends came February 2013 at an Epilepsy Action event, Treatment Beyond Medication. I was there as a volunteer and speaker to share my experience of brain surgery that I’d had a few months previously.

Before the surgery I was having up to thirty partial seizures a day, taking my energy and passions with them and affecting my life tremendously. Before being given the option of surgery I had tried eight different medications all of which failed to have an impact on reducing my seizure activity. Due to the immense depletion in my quality of life surgery was offered. How effective it would be was unknown and there were risks that came with it. At that point any chance of seizure reduction and life improvement was all I could focus on and surgery was what I desired. The six hour operation at Derriford Hospital, Plymouth, entailed reducing the size of an epidermoid tumor that runs from my left temporal lobe down through my brain and alongside my spinal cord. With the removal of my left temporal lobe, and a vast amount of the tumor, the surgery was successful beyond my desires. I became seizure free. The impact it had was immeasurable. It enabled me to rediscover myself again, re-establishing my ability to be active and interactive with people and life.

Unfortunately, seven months after surgery, May 2013, my seizures started again and with it came the fear of my life depleting once more. As their occurrence and strength increased I was advised to start increasing one of the three epilepsy medications I was on to see if it would help ease them. As many experience, along came the side affects of the meds causing many insecurities, mental and physical health problems, and energy depletion.

Being determined to obtain control of my epilepsy and claim back my life again I started researching alternative treatments and recalled Emma Williams of Matthew’s Friends presentation on the ketogenic diet. I looked into it further to gain more awareness and understanding of how it worked but also came to the decision it wasn’t suitable for me. Why? Well, I’m vegan. The diet goes against my life approach and ethics and I don’t feel comfortable in justifying or making changes to this. So, my research continued and I decided to look into how I could obtain similar effects through a vegan diet.

I adapted my diet by reducing carbohydrates, processed and sugary foods, whilst increasing fat and protein intake. I brought in specific raw and natural food sources to meet my nutritional needs – those of a being and those that strengthen and attune the brain. With this came the reduction in my seizures to which I was amazed at. Over a few months this reduction became a constant and after discussions with my epilepsy nurse I started to slowly reduce my medication in the hope my seizure activity would remain low, and it did. This continued and in April 2014 I became medication free. Throughout this time my energy levels continued to increase alongside the improvement of my health and quality of life.

Early 2015 I wasn’t maintaining the diet and with it came the drastic affect of my seizures increasing in both occurrence and strength. My seizures were happening on a daily basis and with it came the fear instilled by the impact they’ve had on me in the past. The fear got me focused on the diet again and within a week my seizure activity lowered and with it came the realization of what I had been achieving and the positive impact the diet had upon my epilepsy.

This is the point I decided I wanted to share my experience with the aim of assisting others. I made contact with Emma at Matthews Friends in the hope she would be interested and have a desire to help me develop it. To my utmost excitement and appreciation she was and this is what’s been happening since April 2015.

I’ve kept track of my diet, recorded it online, created vegan recipes – which will be shared in the near future – monitored my ketone and sugar levels and worked alongside

[Matthew’s Friends Clinics] dietician, Susan Wood. It has proven to be a great pathway. I’ve shared and expanded, yet also refined my work and knowledge alongside that of Susan’s.

To gain further awareness of myself and our environments I’ve turned to the land as a great food and nutrition source. I regularly forage for seaweed, a gorgeous and natural way to obtain an outstanding amount of vitamins and minerals. Alongside this I strive to obtain seasonal fruit and vegetables to assist myself and the environment to stay in tune with one another.

The diet came to its test in April when I volunteered at Grand Synthe refugee camp in France. The change in environment, pressures, work and routines had an impact on me mentally, physically and emotionally. All of which are seizure triggers. I took a few food essentials with me to sustain myself for several days after my arrival. This allowed me the time to assess the food options and availability on location. I kept myself hydrated and always had a supply of nuts or seeds to ensure fat intake with the food sources available. After a month on camp I returned tired yet seizure free.

The great factor of the vegan diet – Vetogenic – is the long-term health affects that comes with it on a personal level and for that of our planet. The natural food sources ensure I have great energy and maintain my nutritional needs and beyond whilst sustaining the utmost respect I have for the life that surrounds us.

When I first contacted Matthews Friends I had reduced my seizure occurrence to every 3-4 weeks. With the development of the diet I’m now a year seizure free and driving again.

I lead an active life of work, creative studies, dietary plans and a range of charity and community projects with passion and strength. My degree results have just arrived and I achieved a first along with an artist residency at Krowji, a creative hub in Cornwall.

With determination and passion dreams come true.

A massive thanks to Matthews Friends, especially Susan Wood, for your support.