I saw my new neurologist early this morning. He has been so impressed with my success on the ketogenic diet that I have just been offered a role as a patient advisor on a ketogenic diet trial for epilepsy in adults.
I am now down to 500mg Keppra twice a day from being on 1,750mg twice a day PLUS 600mg Epilim twice a day 2 years ago thanks to diet change and being stubborn.
I have achieved this on my own fighting against neurologists who wanted me to constantly increase my medication and who didn't support my 'risky' methods. Now I finally have the support I need from a forward thinking neurologist and treatment team. I'm enthusiastic about being given the opportunity to help others, making the ketogenic diet work for them, making it enjoyable, and without it feeling like a chore.
I find this incredibly rewarding because I was very scared in the past doing this all by myself with no support and I made a lot of potentially dangerous mistakes along the way.
There will sadly still be some who say this diet doesn't work for brain tumour related epilepsy. It has certainly worked for me personally. Everyone is different, but I believe the benefits outweigh any potential risks. I believe that any risks are due to people adopting the diet in a way that isn't suitable for them. The ketogenic diet for brain cancer should be much more than simply attaining a 'therapeutic' level of ketosis correlated with relatively low blood sugar readings.
I just thought I would share this information. Great things can be achieved if you are proactive and learn from others. I am a student as well as a patient and I'm learning to be more humble, understanding, and open to views that challenge my own.
I am look forward to advising others in the clinical setting by providing my own personal experiences in a professional manner with clinical explanations. I never thought that my cancer diagnosis would teach me such compassion and give me real opportunities to reach out to others in such a powerful way. I hope this continues. :-)
Happy Valentines Day.