Mike Dancer is a tall athletic man. He stands 6’ 3 and it is obvious that living a healthy lifestyle has been important to him. In 2000 Mike was 34 years old, very fit and running a university athletic facility at the University of Birmingham England. The centre had just gone through a complete retrofit of the gyms and the press had been in to take pictures of the shiny new equipment. It had been a busy day. At the end of it Mike sat down to collect his thoughts and began to work on the employee schedules for the next few days.
The phone rang; an employee had called in sick. As mike was offering to cover the shift he had a massive seizure. That was the last thing he remembered. The next thing he remembered was waking up in his friend’s car on the way home from the hospital. He had lost many hours. He recalled “It was a strange experience, a bit like time travel. I wondered why on earth I had jumped ahead of that phone call.”
The seizures came more frequently. They were tonic chronic[i] seizures and they had come out of nowhere. Mike recalled “The most surprising thing was that there was this disease which unlike the common cold or the chickenpox didn’t have a beginning middle and end, and it was permanent.” This hidden disability had a profound impact on his life. He was lucky that he had access to public transportation because of course his licence was revoked right away. One week he was the model of health, teaching gym instructors to use their new equipment and the next he was not able to drive or use his own equipment unsupervised in case he had a seizure.
“There was no obvious pattern, it wasn't always at 2 o'clock in the afternoon and it wasn't always half an hour after eating” I was surprised that no one had done a CT scan or an MRI, but Mike reminded me that it was the year 2000 and they did not have that technology in every hospital. In fact it took six months before he had a scan, after which the doctors told him that he had left temporal lobe epilepsy and that he would need medication for the rest of his life.
The medication did not work for Mike. The seizures continued to come and the side effects of the medication began to bother him too.
“You don't really complain about that because it is supposed to stop the seizures which are by far the worst thing.”
Epilepsy had a profound impact on Mike’s life. He had retrained as a school teacher and after a seizure while teaching he was let go as the school board felt he was unsafe to be in charge of a classroom. It was a very difficult time and Mike admits to being quite depressed. Throughout the next eight years Mike kept using the gym. It was, after all, the foundation of what he believed in. Many gyms at the time would not accept a person with epilepsy and so he was lucky to find a supportive environment. During this time Mike also started logging his progress at the gym on bodybuilding.com .
“For a start people replied to me with very considerate messages. ‘Good for you’, ‘keep up the good work’ that sort of thing. At the time it was incredibly helpful because I was actually quite depressed. ”
And that is when Mike began messaging with DPD555. “That name sounds like something out of Star Wars doesn’t it?” says Mike. DPD 555 was getting ready for a bodybuilding contest in the US. He had been looking more and more into high fat diets and the information he gave Mike was contrary to everything Mike had learned. Who would have thought that one could find therapeutic nutritional advice to treat epilepsy on body building .com but that is exactly what happened. DPD555 told Mike that he used the ketogenic diet to burn off body fat in preparation for competition but that it had been used to treat epilepsy in the past.
The medications had not been working for Mike. The side effects were wreaking havoc on his gut he was developing new food intolerances weekly. He was fed up. Mike told his doctors he wanted to stop medications. His doctors told him that without them he would die and to make matters worse threatened not to see him at all, for anything, if he stopped his medication. He could no longer eat wheat gluten, dairy, potatoes, tomatoes all the nightshades, citrus fruit and peppers.
“At the rate I was going I was running out of things I could eat unless I really wanted to break the 100 m sprint to get to the nearest bathroom. DPD555 suggested that I use alternatives which were high in fat.” Mike had never dreamt he would be eating copious amounts of fat. “My immediate concern was that I would instantly balloon up and have a heart attack - so I weighed everything”.
Just as Mike began to embrace the ketogenic diet, he met Adam who was getting ready for a bodybuilding competition in the UK. Mike jovially described the competition as “wearing very little, getting covered in spray tan and making poses on stage to show off your six pack along with a lot of other people doing the same thing”. He decided he was going to have to keep a food log - just as Adam had done before competition. Mike ate coconut oil and avocado, a number of white meats and, he admits, a bit too much protein. But Mike had a great idea about how to compensate for the extra protein in his newly formulated diet. He decided to join Adam on stage and entered the competition himself.
And so the training began, and Mike felt tired. “If I was a battery I would've needed to recharge” but that did not last long. A week or so later after a big back workout Mike decided he was up for some cardio and went for a swim. After letting the lifeguards know about his epilepsy he dove in, only getting out ---80 laps later. His energy was back. “Something had clearly switched over in terms of the energy that I had available to me. That was my eureka moment, switching over from gasoline to diesel”. And the best part was that his seizure frequency had dropped dramatically as well. And they were no longer tonic clonic seizures but instead more absence seizures which did not interfere with his day-to-day living as much. He even managed to place 3rd in the body building competition.
I asked Mike what effect a Ketogenic diet has had on quality of life? “This is where I start singing Freedom” he laughed. Mike admitted that after the seizure reduction that came with the diet, against medical advice, he weaned of many of his medications. “The medications messed with my gut. I had to map bathrooms out all over town. Being able to go off many of the medications gave me my freedom back. It was good for my self-esteem. My gut healed. My doctors did not want to hear about it. With DPD555’s help I had just discovered a way that I felt was going to keep me alive and nobody wanted to hear about it. I just wanted a desert island where I could get nothing but coconuts and fish. Any desert island would do.”
As Mike continued on his ketogenic journey he got to know the resources of Matthews’s Friends in England, he found more and more support in a growing community of individuals and scientists. In 2010 Mike was invited to a conference that Matthew's Friends was putting on in Glasgow. As luck would have it DPD555 was planning to be there. Finally Mike would meet the man who'd had such a profound impact on his life from across the Atlantic. I don’t know how I didn’t see it coming but I have to tell you I was grinning ear to ear when Mike told me that DPD555 was none other than Dr. Dominic D’Agostino, Assistant Professor in the Department of Molecular Pharmacology at the University of Southern Florida.
Dr. D’Agostino is a well-known in ketogenic circles for developing and testing metabolic therapies, including ketogenic diets, ketone esters and ketone supplements to induce nutritional/therapeutic ketosis and whose research and resources I myself turned to early in my journey to manage my own seizures.
Mike really lucked out in bumping into him online. Mike and Dr. D’Agostino became close friends with Mike even attending his wedding, so it comes as no surprise to me that Mike would list DPD555 along with Adam Read as being the people who influenced his journey the most. Mike continues to use a ketogenic diet to improve his quality of life. He still has Epilepsy. He is not completely seizure free but his seizure frequency and intensity are significantly reduced, as are the side effects from medication. Mike’s advice for those who suffer with this invisible disability is to “Trust yourself, and what you value.” Simple words with an important message: You know you best.
Favourite keto meal: Alaskan sockeye salmon with avocado, root turmeric and leafy greens.
Favourite keto Book: The Cantin Diet for Cancer, Type 1 Diabetes & Other Ailments by Elaine Cantin
The Ketogenic Diet: A Complete Guide for the Dieter and the Practitioner by Lyle McDonald
Favourite keto online resource: bodybuilding.com
Matthews friends https://www.matthewsfriends.org
The Charlie Foundation. https://www.charliefoundation.org [i] http://epilepsyontario.org/about-epilepsy/types-of-seizures/