It all begins with an idea…
So in January 2020 I challenged those I coach to run a 5K in order to increase their fitness for competition season. Encouraged by a friend I decided I couldnt just walk it, so took up the Couch to 5K. I also entered a few other races to keep myself motivated (London Landmarks, Adidas series all of which have obviously been cancelled because of COVID Safety). For some reason, a bit like a much unfitter version of Forrest Gump, I have kept on running. I am not fast and never will be, I use a run walk method, but my motivation is to raise 10,000 pounds for Epilepsy Research at the Royal Free Charity
I initially picked this cause because my cousin suffers from epilepsy and it has really affected her life quality, but it has since become even more personal. I have now myself been diagnosed with having seizures due to some issues in my brain, although the cause hasnt been found out yet, due to this happeneing just days before lockdown.
Whist I hate to admit it, it has been a huge shock to me emotionally and physically as the impact on life and my independence has been a huge issue to overcome. Im not sure I have dealt with it at all and I know I have been a depressed nightmare to be around, I am just so lucky to have some wonderful friends who have stuck by me no matter how horrible I have been. I am eternally greatful to those that have stuck by me even when I tried to push them away as I felt my independence was being affected.
But I am determined not to let this affect my life any more than it has to. As you will see on other pages of this site, the Risk Assessment App I am raising money for will hopefully help everyone with epilepsy and seizures to manage risks from day to day and keep their lives.
To live their best life, people with epilepsy have to strike a balance safety and activity. The Epilepsy Initiative team, based at Royal Free hospital have created an ERA scale app (Epilepsy Risk Assessment app) to assess safety for people with epilepsy around physical safety, epilepsy-related safety and mental health. This App gives us a structure for assessing these factors, and people can do this themselves and use this as a discussion point for their clinic appointments. It can also be done by health professionals. The current COVID situation means we have had to do a lot of things remotely, and this App gives people an in-depth analysis of daily life. We are very excited to be partnering with The Royal Free Charity in support of this. This is not just for The Royal Free, it is for people with epilepsy throughout the country and later around the world. We will share developments as they go along, and if you have any queries then please feel free to contact us.
I am so lucky to be running the London Marathon in October 2020 as part of the team from The Royal Free Charity for neurology research at The Royal Free NHS Trust, more specifically the Epilepsy Research Project, which covers all sites of the Royal Free Hospital. This is a charity and cause which I have real personal links to and I am honoured that they have given me a place to run for them.
As some people will know, I have recently been treated by The Royal Free at various of its sites, but my family has a much longer connection with the hospital. In 1914 my grandmother was taken to the Royal Free at its' original site in Grays Inn Road. She had a heart condition which was found to be caused by a potentially fatal immune disorder, but the family couldn't afford to pay for treatment at any other hospital.
The Royal Free was the only hospital in London that provided free treatment, which she was lucky enough to access and was treated there for many years. She then went on to become a nurse at the hospital until she moved to Devon during the Second World War. I can honestly say that without their intervention I really wouldn't be here today. It is somewhat fitting that the same hospital has been involved in treating me for similar issues arising from the same immune disorder that I inherited from her.
I am running to raise funds for neurology across the Royal Free Trust - more specifically The Epilepsy Research Fund. This fund provides the resources for research into epilepsy across all sites of the trust. The epilepsy research project brings together doctors, nurses, scientists and patients who are all focused on testing new medicines and techniques in clinical trials, which means the timeframe for bringing in new treatments to patients will be substantially shorter than it currently is.
Epilepsy is a condition which has a huge impact upon the lives of those who suffer from it. It is one of the most common chronic neurological conditions but also one of the least understood. The impact of epilepsy extends well beyond the direct effects of seizures and includes numerous challenges which may lead to disability and severely reduced quality of life.
There are the more obvious issues: not being able to drive; use anything heated; restricting sports and social activities, all leading to a feeling that independence has been lost. More support is needed for simple and everyday things which become unsafe because of the risk of seizures, which means that relationships with family and friends can become strained.
People with epilepsy often suffer from physical and functional issues, such as loss of short and/or long term memory; cognitive challenges; medical and physical comorbidities and ultimately it can be fatal. Epilepsy is something that many people are scared of and find hard to accept; seizures themselves are worrying for those observing and embarassing for those suffering from them.
The cognitive issues which arise from epilepsy are hard for others to understand, as these vary from person to person and even change over time in each invidual: for example it is hard to understand why someone can suddenly lose their short term memory (or parts of it), they cant remember facts/figures/names, suffer from mood swings, or suddenly find that their 'time line'of events becomes scrambled.
This is even more of an upheaval when someone has late onset epilepsy; their whole world, the way that they operate changes, and to others it can seem like they have changed personality or aren't the same person they thought they knew. Late onset epilepsy is incredibly common and occurs for a variety of reasons but all of these practical and emotional changes lead to a big upheaval in quality of life and people with epilepsy are more likely to suffer from depression in addition to other physical and social issues.
I, and other close family members, have personal experience of epilepsy and the impact that it has upon life (however it is caused) and it is a very hard condition to manage. Treatment at this point consists primarily of trialling various medicines, of which the side effects are often as debilitating as the condition; for example personality and mood changes, confusion and depression. The type, frequency and dose of these medicines is very much on a basis of 'try it and see' as it is personal to each person, but because epilepsy can be made worse by stress, illness, tiredness, hunger and a whole plethora of other issues that occur in everyday life, it can be very hard to stabilise.
Unfortunately the brain and the way it works is something that we know relatively little about. Research is key to a more detailed understanding of the causes of of the condition and to provide more effective treatment. This is vital to ensuring that those diagnosed can have a better quality of life moving forward.
So whilst the marathon will not go ahead in October 2020 it is virtual - I will run the 26.2 miles in London from sites in the Royal Free Trust on my own, and my place will roll to 2021. If you see me out and about on the day please wave/give me wine/gin/water and pick me up off the floor if needed!! To continue to raise money for this cause I have also signed up to the Serpentine Swim and will do the London to Brighton Cycle race in 2021. I want to raise as much money as I can by doing these events and would appreciate anyone who can donate to the project.
This is my first marathon. I am so excited and really quite scared! I will keep everyone updated as I start and move through training, via feedback on this page and Strava updates (when I can get my GPS to work!). Please feel free to offer encouragement, jokes, feedback, advice....anything really, but please please can you donate to the cause I’m running for. Your money will ultimately make a real difference to peoples’ lives. I'll even buy you a drink next time I see you!!